Little Theo

Gastrostomy info

2011-09-26T19:39:00.001+01:00

What is gastrostomy?

A gastrostomy is a surgical opening through the abdomen into the stomach. A feeding device is inserted through this opening into the stomach. This allows your child to be fed directly into his or her stomach, bypassing the mouth and throat.

Why does my child need a gastrostomy?

People who have difficulties feeding can benefit from a gastrostomy. There are many reasons why someone might have difficulties feeding, including neurological (nervous system) disorders and gastrointestinal (digestive system) disorders. Some people also have difficulty swallowing, which increases the chance that they will breathe in food (aspirate). Your doctor will explain to you the specific reasons why your child needs a gastrostomy.

What are the advantages and disadvantages of having a gastrostomy?

Gastrostomies are often useful for children who need to be fed gradually, or have had problems with feeding by naso-gastric tube in the past. Some families find a gastrostomy more acceptable than a naso-gastric tube as it can be hidden under clothing. A useful feature of a gastrostomy is that there will be fewer battles over nasty-tasting medicine as some types can be given through the gastrostomy, bypassing the tastebuds altogether. A gastrostomy can be a permanent or temporary measure, as it can be removed when your child no longer needs it.

How is a gastrostomy inserted?

.A gastrostomy is inserted in a short operation under a general anaesthetic. For more information, see: What does the operation involve?

Are there any complications with having a gastrostomy?

There are some complications associated with a gastrostomy. These are explained and methods of dealing with them are included in Your guide to trouble shooting on page 13.

What types of gastrostomy are there?

There are several different types of gastrostomy device used at Great Ormond Street Children’s Hospital. It is important to discuss the most suitable type for your child at an early stage. The decision depends on his or her medical condition and age, any special needs your child and family have, any other operations your child needs and the surgeon's expertise. You can change your mind at a later date if the device that is chosen no longer suits your child.

These are the main types of devices used at GOSH:

Percutaneous Endoscope
Gastrostomy (PEG)
Malecot tube
Balloon device
(tube or button)
•A flexible polyurethane tube which is passed down the throat and into the stomach. The end of the tube is brought out through a small incision in the abdomen to allow access for feeding. •A flexible rubber tube (catheter) which is inserted through an incision in the abdomen. •There are two types available: a gastrostomy tube and a button or low profile device.
•Can stay in place for about 18 months •Usually a temporary device for the first six to eight weeks, and is then replaced by a balloon device (see right). • The tube can stay in place for about three months, and the button for about six months to one year
•Held in place using a disk inside the stomach •Held in place using wide, flat wings inside the stomach, but may need to be temporarily stitched to the skin • Both are held in place in the stomach using a small balloon filled with water.
•A feeding adapter may need to be attached for each feed, depending on the type of equipment used. •It must be secured with tape and the position tested before each feed •A feeding adapter may need to be attached for each feed, depending on the type of equipment used.
•Removed using an endoscope •Removed by the clinical nurse specialist. No surgery is necessary. •Removed by deflating the balloon.

Next >

Ref: F000380 © GOSH Trust 2002
Compiled by Nutritional Nurse Specialist and Stoma Nurse Specialist

2011-09-26T19:29:00.000+01:00

Thing the Drs never told Us
1. cardiomyopathy is not a death sentence.
2. your EF is just a number, it doesnt tell you how long you have to live.
3. you are probably gonna sleep all day after a big day.
4. your probably going to like your room cold at nite.
5. that skip in your heart that keeps driving you crazy everytime you feel it, there called PVCs and they wont hurt you, just anoy you.
6. you may find sleeping on one side makes you feel worse.
7. if your heart is enlarged then you may feel the weight from it now and then.
8. it does suck when you know your sick, but to others you look fine and they just dont get it.
9. if you have an AICD they arent that bad. yes if you get shocked it hurts, but its over so fast and your still alive.
10. when they say an LVAD or transplant is your only option, keep looking, there is more out there.
11. when they tell you that you have only so long to live, remember there not God.
12. women...hormones cause PVCs so if its that time, you may feel worse then normal.
AND most of all remember you have cardiomyopathy. cardiomyopathy DOESN'T have you.

Some information

2011-05-27T14:57:00.001+01:00

In the last (almost) three years, I have read so much information on Theo's condition, I like to imagine I am expert on the many aspects that it presents.
I have also neglected the blog for a few months now. Obviously having a new baby is one reason, but mainly it is because I felt lost for words for several months.

I am going to start sharing information now, because I think that it could do with being summarised.

So, the start.

July 2008, wednesday 16th. I was having an ordinary 39+ weeks pregnant sort of day. Heavy, hot & tired. Early afternoon, I developed agonising stomach cramps and found myself confined to the toilet for a few hours, feeling as though I was going to pass out.
Eventually symptoms subsided and Colin took me to see the GP who prescribed gaviscon, plenty of fluids and rest. She also gave me the reassurance that my baby would be fine as s/he was protected by the placenta.

So on Monday July 21st, when I delivered Theo, I never even thought to tell the midwives that I had been poorly. In all honesty, we had such a scant amount of attention that day from the midwifery staff, I doubt they would have made any observations anyway. After a few hours, we took our new baby boy home and proceeded to argue over his possible names!

Tuesday July 22nd we took Theo to the GP for his 24 hour check. Our GP examined him and proclaimed him to be fine, in spite of not being able to feel the femoral pulses (where leg meets groin).
Again, we left, oblivious of anything untoward.

Wednesday, thursday & friday were what I would consider normal for having a newborn baby. Days spent resting, trying to get baby to nurse effectively. It was very hot weather and once or twice I wondered if Theo had a fever but it seemed inconceivable to have already caught something, & I know that fever in neonates is quite uncommon. I was also thinking that Theo was quite a nice baby to have as a third. He didn't cry much, if at all, he was very sleepy and didn't take ages to feed, in fact, he didn't feed very much at all.

On Saturday 26th, day 5, the midwife came to do the heel prick test and weigh him. He had lost 8% of his birthweight; I was actually quite upset about this as I felt that breastfeeding was going 'ok' and my other babies hadn't lost any weight after birth so what was I doing wrong? I was again reassured that up to 10% was acceptable in the first 5 days.

By Saturday evening, I was getting quite concerned about Theo. We attended a family gathering and Theo did not wake once all afternoon. I had to go and wake him during the afternoon as he had not fed for about 4 hours. He didn't feed well when I woke him. All afternoon, in spite of the summer heat, everyone had been commenting on his cold little feet. Later on in the evening I tried to feed him some more and had a little more success. I was in a lot of pain from engorgement and expressed a great deal of milk.

Day 6, Sunday 27th July, I was feeling positively unhappy. I called the midwife team on several occasions to ask for help with Theo's feeding and was told to try him in different positions. I explained that I t wasn't how he was latching on, but that he wasn't capable of even trying. I kept on trying though.
At one point in the day, I had laid him in the moses basket upstairs on his tummy, while I went outside to peg out some laundry. I heard him crying through the bedroom window and have never run upstairs so fast; it was the first time I had heard him cry pretty much since birth.

I remember dad and Kath coming to visit and thinking Theo didn't look well, didn't look right. Dad and Sacha got a little excitable and Theo got his head bumped and I flew into a rage. I was feeling so edgy and worried. Theo barely woke or fed for the remainder of the day and during the night I couldn't get him to latch on to my breast at all. I spent the night in a panic, and finally expressed milk to simply pour into his mouth. By 7 a.m. I was distraught and burst into tears at Colin, telling him 'I am so worried about theo'. Famous last words, I think.

We took him to the walk in centre who immediately sent us to the GP. I remember telling him that I thought he was dehydrated because he wasn't feeding well and was very lethargic. I recall Dr Brockhurst examining Theo and looking at me, perplexed. He sent us into the corridor rather than back into the waiting room while he decided what to do. He came out and told us that the team at the children's admissions unit at Leicester Royal Infirmary would be expecting us.

The midwife had been due to come out that morning and so in between dropping Tabitha off with relatives, I called the midwife team to let them know where we were going. The midwife I spoke to was genial and said to call them back 'when he is discharged'. On ending the call, I burst into tears.the idea that my newborn baby would need admitting to hospital. I knew from tv that severe dehydration is treated with IV fluids. How awful I felt knowing he would need this. I had failed him.

Worse still were the outstretched arms of the team on the children's ward. Theo was at the top of the list for attention and within a few minutes he was allocated a cubicle and his cot was surrounded by serious looking registrars. A kind faced dr introduced herself as dr Brockhurst..our laughter at the coincidence of names..our local GP and now her..became clear, as they were husband and wife. She was a wonderful person there, explaining things gently where she could. Within a few short hours, Theo had been taken to the treatment room. I was told not to come in as 'parents generally find the lumbar puncture very distressing'. I was numb, I know at the time I felt that I was just coping very calmly but actually I was in severe shock. I could hear his newborn shrieks and screams from the treatment room and felt my stomach twist. When he was brought back, he was asleep again but had a cannula in his hand and a tube up his nose. I felt sick, but he was started on fluids and perhaps other things but I can't recall.
I can't remember whether Colin was with me or not. I know he was at first and I know he decided to head back home to take care of Tabitha and to call his folks but when and where he left, I can't remember. I guess it must have been when Theo was taken by ambulance to Glenfield hospital, mrs dr Brockhurst came with me & Theo was given an echo by dr leanage. I expressed milk in the feeding room on the children's outpatients clinic at Glenfield, poor Theo in his little space shuttle n a trolly. My milk was poured straight into him. I remember my absolute terror at what was going on. We were sent back to the Royal, as Dr Leanage could find no structural faults with theo's heart. Nobody had actually explained why we were sent for cardiac investigation at this stage, so when I was told he didn't have a co-arctation of the aorta, I was very pleased that he wouldnt need open heart surgery. Looking back, it's as if every time I was told the good news, the bad news was far more relevant. We spent the night at the Royal, I tired to express milk every few hours. It wasn't essential as he was having something like 20ml per hour.
The next morning, we were sent back to Glenfield. He was admitted to ward 30, and many drs surrounded him again. Still no real explanation for me, but Theo had more energy, or more discomfort, I cannot tell, but he was vomiting constantly, gasping for breath and unable to lie still. I remember thinking that it was obvious he was really poorly but it wasn't that bad as he wasn't in intensive care. I know that his oxygen levels were critically low, at 60%, on maximum oxygen through the mask. I was told to carry him through for another echo and I met Dr Duke. It was early afternoon. Dr Duke echoed Theo and while he was laying on the couch, he collapsed. Distinctly, I heard 'this child needs intensive care NOW' and he leaped up, saying, 'I'll go and tell them to prepare'. A few minutes later, the cardiac liaison nurse, Sharon, appeared with a wheel chair. I couldn't understand why. She told me to get in and carry Theo. I understood later that I would have probably collapsed with shock. She pushed us through the back entrance to PICU and a nurse leaned over with outstretched arms 'let me take him, I'm Rekha. It will take about an hour'.

I had NO idea WHAT would take about an hour. The nurse who was with me was rubbish, barely said a word to me and checked her mobile phone regularly. I was shown to the 'comfy room' (which later came to be known to us as 'the bad news room') and Colin was called to inform him of events. Colin arrived and we hugged. We cried.
Presumably when the hour was up we were told we could come and see him. That was the biggest and most horrible shock. Like a waxwork baby, cold to touch, a hundred wires and blood filled tubes coming from every orifice and every blood vessel possible. We sat, we touched, bewildered. We still did not know what was wrong with our baby, but that he was critically ill and near death.

long overdue catch up

2011-05-06T09:44:00.000+01:00

In January we welcomed Barney to our family. 9lb 1oz, 19th Jan 03.01 am!

Stem cell trial at Great Ormond Street

2010-10-08T09:52:00.000+01:00

Good news on the medication and kidney function!! Theo seems to have picked up loads in the last week or two and his stamina is back! So relieved! Just shows how wonderful modern medicine is once again. His kidneys are coping and so we are relaxing a bit more.

Because he's picked up, we have re-discussed the idea of him being a part of the stem cell therapy trial (as mentioned before) and it is going ahead on Monday next week (Mon 11th October). There are still last minute reasons that may occur that will prevent it, as with any surgical procedure, but supposing it does go ahead, this is what will happen.

Theo will be under anaesthetic and will undergo a cardiac MRI. This is to obtain the most accurate and detailed images of his heart tissue, so any changes can be measured against it later on. He will then have bone marrow biopsied from the back of his hip bone via a long needle. The bone marrow is taken to the lab for processing and the stem cells will be extracted and prepared for launch!
The next stage is when the stem cells are injected directly into his heart via a catheter in the groin. The catheter is a long fine tube, inserted into an artery or vein in the groin and passed through the large main vessels into the heart.

The main risk for Theo is collapse under anaesthetic, it will put a lot of pressure on his heart and system function but we are assured that only the best consultant anaesthetist will be involved and if any reason to halt or cancel the procedure arises, then it will be. The catheterisation runs a risk of occluding the vein/artery but this is not a major problem. Obviously bleeding and bruising are an issue too (he will bleed and bruise), as well as infection but we anticipate these to be truly minor issues. The bone marrow biopsy also has side effects of pain and bruising around the site.

For all our concern that we may be treating Theo as a guinea pig, the possible benefit if the cell transplant were to work..it is not worth us getting over excited but the trials on adults have shown promising results, with improvements in overall heart function, by small percentages. We view this potential gain as sufficiently significant to make this worthwhile. Anything that helps his quality of life or means delaying the inevitability of a transplant is a good thing.

On the other hand, it will be a very stressful 24-48 hours and I would like people to remember that if things were to go wrong it would be very difficult indeed. We are comforted by the fact that Great Ormond Street is a transplant centre with some of the best heart failure specialists. There is access to Berlin hearts and ECMO also.

All in all, wish the little man luck!

September update

2010-09-19T21:13:00.000+01:00

July 2010
Theo's decannulation in July was a brilliant experience. The actual process was straightforward and simple. Several nurses, students and doctors had crammed into the cubicle to watch this epic moment. There were the noises of inhalation and then breath being held as we untied his tapes and then with a brief interruption of his toy car game, I pulled the trach tube out; theo coughed briefly and returned immediately to his play!
It was a very unimpressive moment and quite hilarious to see so many people waiting to see such a significant event for us.

Theo's birthday was a pleasant low key day. we had some family round for a slice of cake but nothing as impressive as last years party. Whilst it would have been great fun to see everyone again, we are generally worn out and need gentle events!

The ensuing weeks were rather fabulous for us as a family. Theo started walking independently days after the decannulation. It is almost as though he was waiting for the freedom, knowing he was always tied to a suction machine so long as he breathed through the tube.
The stress levels lifted tremendously and relations in the household improved. We started having some fun and this coincided with some lovely weather and the school holidays, so it felt delightful. The joy of being able to let Theo join Sacha and Tabitha down the garden without the chore of having to collect catheters and suction machines and barrels was unparalleled.
The other wonder for us, was the sound of his voice. He began making use of this skill immediately, interestingly with baby babble noises but mainly with shrieks and screams and nonsense sounds.
Eating remains problematic. We are out of ideas for how to manage him. Sometimes he show interest in food and we make the most of it by offering him everything we can. He seems to have real phobias about wet or cold food, shuddering if he touches it. Very few items pass the test to be picked up and sampled and even when he gets this far it generally provokes intense gagging and vomiting. This difficult reaction provokes a very negative cycle. Food is essentially going to make him sick and he seems to know it. The vomiting itself is an issue as he suffers terrible mouth ulcers and frequent oral thrush - so his mouth hurts a lot too, poor baby.

Although many people seem opposed to the idea, confident that they may be able to persuade him to eat (it is very frustrating, the amount of comments we receive about offering him baby rice or just forcing food into him- as though we havent tried everything we can think of, plus all the reasonable ideas other people, including therapists, have suggested) we have asked for a referral to the gastro-surgeon for theo to have the long awaited gastrostomy.

For the squeamish amongst us, a gastrostomy is a simple balloon device which provides a port directly into the stomach so that there is no confusion about tube movement or displacement. It is more comfortable for the patient and much more user-friendly. As Theo shows no signs of losing his tube dependency no matter how much effort we put into persuading him otherwise, we hope that this will be a better solution for all of us.

August

The visit to Great Ormond St transplant/ heart failure clinic was a happy one, we had good news, Theo's heart function was still good enough to avoid him being added to the transplant list. He was also well enough to be considered as a patient in a stem cell therapy research project being conducted this year.
After some consideration of the details, we decided to agree to the project as there was a remote possibility it could improve his heart function, even as a side effect of the trial, rather than a completed treatment.
However, within a week of this decision, Theo developed a cough and experienced several nosebleeds. I took him to the GP who diagnosed ng tube trauma in the nasal passage and prescribed some antibacterial ointment. To our dismay his nose bled from the other nostril and continued to bleed over the next week or two. His cough also persisted and at times he began to really struggle with his breathing, showing classic signs of respiratory distress, his ribs recessing and the extra work making him vomit more frequently and sweat. He also started to sleep much more in the daytime.

We took him to the childrens admissions unit for an assessment. My concern was Theo's heart function, as he seemed puffier around the face and his cough was not producing sputum like infections do.
An X-ray revealed pulmonary oedema (fluid on the lung) which is a feature of congestive heart failure. His heart was in acute failure again despite medication. Dr Duke, his cardiologist increased his diuretics and Theo was reviewed again 2 days later. The oedema was still present, as was an unexpected surprise - a coin apparent in his gut, visible in another x-ray. This caused a consternation and a great deal of amusement. Eventually a 5p was passed with a yelp! We endured a painful hospital admission of 5 days, unnecessarily and most frustratingly.
The ward we stayed on this time was new to us and very disappointing. I was repeatedly told that his breathing issues were not heart related and after 4 days, I looked at his drug chart out of boredom and noticed that one of his cardiac medications had not been given properly. Nurses continued to play down the situation, telling me he wasnt in any breathing distress. I felt quite vindicated when we finally made a trip to Glenfield for a cardiac review, in spite of the bad news it held for us.

The echo later that week revealed deterioration in theo's overall heart function, especially concerning his mitral valve which is now leaking significantly compared to the echo at great ormond street only a fortnight previously.
This is very worrying for us, as it means that the pressures in the left atrium are excessively high, causing pulmonary hypertension - this is causing the pulmonary oedema. It also puts strain on the already damaged areas of his heart, primarily the left ventricle. There is a very complex set of chemical reactions that I can barely comprehend, never mind explain. In answer to the question I get quite freqently about how he has grown and his heart will have grown stronger? No, as the stress his healthy heart tissue is under far outweighs the small portion of growth it has experienced. To put it simply, Dr Fenton at GOS drew me a cross section of Theo's left ventricle (the pumping chamber that services the body with oxygenated blood) and crossed out half of the chamber. 'This bit doesnt work'.

The options at this point in Dr Duke's opinion were 1)increase diuretics, 2) retrial captopril and digoxin, 3) enlarge stent under catheterisation 4)watchful waiting.
We went away for a fortnight with more diuretics and came back for more echos and diagnosis.

September
The first appointment at Glenfield this month showed Theo had not improved although the added diuretics were helping shift the fluid off his lungs, so his breathing struggle had lessened.
Our options now are to commence captopril and digoxin again. Everyone is very anxious about these as Theo's kidney failure last year was directly associated with these renal-toxic medicines. Unfortunately, there are very few medication options left, and the captopril/digoxin combination are extremely effective in the treatment of congestive heart failure.
So on Monday and Thursday last week, Theo and I spent 8 hours each day on the ward having his blood pressure monitored while the captopril was introduced and increased. He also has had blood tests on Tuesday and Friday.
Monday evening I drove to London for a Tuesday appointment at GOS.

The Great Ormond St review
I was told almost immediately that Theo is no longer suitable for the stem cell trial, as he is too sick.
Dr Fenton told us that our options for treatment are now drawing to an end and unless Theo responds well to captopril without suffering kidney problems, there is virtually nothing left to treat him with medication-wise. There is a drug called Losartan that they could try but compared to captopril it is almost not worth it. It is time to consider the transplant list again.

Sitting in the office with Dr Fenton, I could almost hear doors slamming, as each one of my increasingly desperate enquries met with a no, or a not worth it..
'could we not try nasal cpap?'
'if we are looking towards mechanical ventilation, it's time to list him'

'what about the catheterisation and stent enlargement?'
'it would offload the pressure but his overall heart function is worsening and besides, i wouldnt put him under anaesthetic unless it was life or death'

The most difficult consequence of this conversation is the realisation that the 2 operations we were hoping could take place, the gastrostomy and the tracheostomy stoma repair cannot happen. The stoma remaining open is a real issue as he continues to suffer infections adn colonisations as though his trachy was in situ which poses more demands upon his heart. The gastrostomy is more a quality of life issue.

Today

Having had an exhausting week of hospital appointments and the worry of where Theo will take us all next, emotionally and physically as a family has meant lots of shouting, arguing and tears. It is so horrible having to contemplate what a transplant means, it isnt even a cure, its simply a palliative measure to improve quality of life for up to 10 years. There's no denying it's an incredible awe-inspiring treatment but the fact remains that Theo will still meet his end sooner than he should, as a result of the viral infection of 2 years ago.

We are currently relieved that the ongoing monitoring of his kidneys, the blood tests, are showing a slight elevation in figures, but we have been reassured that things are ok (cannot help breathing the words 'for now').

An infection that has been really bothering Theo in the last week brought disastrous news that they would need to admit him for IV antibiotics to treat it as it was a strain resistant to anything he could have orally. For the first time since he came home, we actually decided not to take him in for selfish reasons. Colin is away on Monday night so I would not be able to stay in hospital with Theo as I prefer to do. There is also the liklihood of him being admitted to the ward that cocked things up last time and I could not stand that. Also, I was utterly exhausted, having spent 10-6 in hospital every day this week except Friday, during which I think I wondered around like a zombie, shouting at Colin and feeling dreadful.

So we must see what tomorrow brings. We would like to hear that his kidneys are bearing up and the medication is helping to restore some greater efficiency in his ticker. We would like to hear that the stoma repair can go ahead at Glenfield, or GOS as they would prefer. We do not want to see urea and electrolyte levels rise, we do not want any more breathing difficulties or pulmonary oedema, we do not want any other surprise symptoms or infections.

I will arrange some photographs soon and will update more regularly. It has been very difficult to prioritise news this way.
Willow

Tracheostomy decannulation planned

2010-07-08T14:59:00.000+01:00

Have been to respiratory clinic this morning and Dr Pandya very nonchalantly agreed that the tracheostomy can be reversed....NEXT WEEK!!
it was exactly the news we were expecting..well hoping for...and I am so pleased that it came.

Dr P has been amazingly well disciplined in the face of my pushy demands that it happened faster. Deep down I knew he was right and that it pays to be patient in such things but you know, he never had to live with it and lug all the equipment round and do the daily tape change, order the stuff and collect it monthly, all the constant (sometimes disgusting) suctioning...so he could be patient!!

If anyone is interested how it works, Theo will be admitted for a couple of days mon - wed because it is necessary to monitor him and how he reacts to not having it. He will have to work a bit harder to breathe as the upper airways provide resistance against the flow that the tracheostomy bypassed. If there are any probs they will put it back in and we may need to wait sometime longer. But I doubt there will be a prob in that sense. The other thing that might happen is that the stoma (hole) doesn't close by itself and minor op to close it surgically would be necessary. Again, have doubts it will happen.
We are just so delighted I can't help feel positive!! Visitors in hospital will be welcome because we will be bored - as he's not in for illness, and it's a procedure, he will be allowed to play etc. Don't know what the visiting hours are these days though. Look for news on facebook too.

Next update next week!

Lots of news

2010-06-18T18:40:00.001+01:00

Since last posting we have managed to go away on a mini break to the caravan in Wales. That was a mammoth effort but was lovely too. Gorgeous weather and we all paddled in the sea - even theo, but mainly in his wellies!!

Respiratory progress is excellent - as of this week (June 17/18th) we have trialled Theo OFF THE VENTILATOR at night and his O2 Saturations remained well above 90% throughout. Obviously the cumulative effect of the greater effort means he will need monitoring again fairly soon but hey, we knew he could do this.

Cardiac side..well, another good appointment with dear Dr Duke. Theo's heart is holding up, function still as bad as ever but no deterioration currently, so we are all content with him at the moment. There has been some more fine tuning of medication levels and we have been warned that without the ventilator we need to be more proactive if he gets into any breathing difficulties, because everything is down to his heart now. But again, we look to the summer with confidence that things will be...ok!!

Next appointment in respiratory in a months time, when, if he has managed well without the vent, he will be booked in for his decannulation of the tracheostomy. Could the summer get much better? We can look forward to taking him swimming!! Will be ordering the warm belly wetsuit now (special ones for cardiac children to help keep them warmer).

After that, Great Ormond Street in August for the transplant assessment again, plus some scans on his veins and kidneys to see whats going on regarding vascular access and renal function - all for future reference really, so that when the time comes for the transplant, there won't be time wasted by surgeons looking for the best veins to put lines in..

That might sound really busy but for us, its a bit of a holiday! Only 2 more appointments in the coming months?!? Surely not. And only 2 admissions planned, not even emergencies. Life surely isn't getting a little more predictable? Wait and see.

Depression in mothers of technologically dependent children.

2010-04-06T17:25:00.001+01:00

A friend whose son is also on nippy life support sent me this article.

Is so true!!

http://fpb.case.edu/News/Docs/Toly_Medscape_Apr09a.pdf

April Cardiac Review

2010-04-05T09:35:00.000+01:00

Theo's echo showed only 'subtle' changes, which is good, a relief. He has been so under the weather for the last few months, we were very concerned that his heart was deteriorating further.
He has terrible tonsillitis though! He had been carrying a fever of over 37.8-38.3 for the last 10 days and his breath was rancid!! So more antibiotics bless him.

We are still hoping that he gets stronger and we are able to consider the decannulation later in the year. No guarantees but things are looking good!

We have had a pleasant weekend and are planning to do some more fun things today. Happy Easter Everyone xxxxx

2010-03-01T08:43:00.003Z

Good Morning, Spring is NEARLY HERE!!
Found an interesting article about heart transplants, thought you might like a read.

http://www.timesonline.co.uk/tol/life_and_style/health/child_health/article6505683.ece

Just so you know, Hannah Jones, the 13 year old who declined a transplant and made the news over it, did eventually agree to have the surgery...
http://www.mirror.co.uk/news/top-stories/2009/08/17/i-m-feeling-brilliant-115875-21602215/

Theo's current status is this; Dr Pandya wants us to trial him off the ventilator at night but we are not allowed to until he is infection free. Each week this is delayed it is a week further from thinking about decannulation of the trachy. So we are trying to keep him well at the moment.

Pictures soon!

Hope this makes you smile

2010-02-25T20:09:00.004Z

Theo has learned to redirect air flow through his vocal chords, to great effect.

Transplant Assessment Day

2010-02-02T11:34:00.003Z

As most people know now, we had a bit of a rushed appointment to Great Ormond Street Hospital on Feb 1st, for a transplant assessment.

It was a draining day of tests and scary realities but the main news is that Theo is still doing well enough to not need to go on the list yet. We can all breathe a sigh of relief and feel delighted for now.

I would like friends and family to read a little about dilated and hypertrophic cardiomyopathies, and heart transplantation before getting too excited about this as the consultant explained that it won't last forever as the general trend of Theo's heart function shows deterioration. We also need to be aware that the scarring on his heart affects the 'pacemaking' area so he could be prone to sudden death from irregular rhythms of the heart. yikes. we didn't know that. If he ever faints, it's hospital, pronto!

So a reprieve, relief and back to life as we know it for a while longer.

2010-01-13T18:49:00.001Z

Happy 2010

2010-01-12T20:52:00.002Z

Wanted to wish everyone good tidings for January 1st but we've been enjoying ourselves and I can't prioritise computer usage over fun things!

Sacha had a lovely 10th birthday, I absolutely can't believe that it is 10 years since I sat in a maternity ward freaking out over this scrunched up, froggy red ball of skin that apparently belonged to me. I still look at him and wonder the same thing!

Tabitha is now attending nursery some more and comes home with some wonderful pictures and phrases for us. Lots of 'I amn'ts' and 'yesternows'.

Theo is almost walking. I won't say any more because walking photos will be so much better.

Love to all, please forgive the shameless promotion of my latest piece of artwork - I'm just so proud of it, I knocked it out in a couple of hours this time!

Merry Christmas 2009

2009-12-25T15:23:00.008Z

Wishing everyone a very merry Christmas with lots of love and relaxation. x x

We did it! Christmas day at home and Theo has even eaten some Christmas dinner!!! Best present we could have had.

Tabitha is thrilled with her Disney Princess dress - so much that it is already covered in paint and coco pops!

Merry Christmas 2009

2009-12-25T15:17:00.000Z

First Snow!

2009-12-20T18:30:00.003Z

Although there was quite a bit of snow last winter at times, Theo never saw it. So today, scant as it was, we all wrapped up and went to play!

We have all had colds this week but that's us and the rest of the UK, I don't doubt.

We've made some progress with weaning Theo from the feeding tube - he still has a set amount overnight and late in the day but during the morning we 'starve' him which has really encouraged him to eat. It sounds cruel and obvious but we've had such a long wait for his weight to be enough for the dieticians to give us the go ahead for this.

Enjoy the video!

Please cross your fingers that Theo stays well and at home for the Christmas period this year (and the rest).

Happy Holidays xx

Christmas coming early?

2009-12-10T18:39:00.002Z

I managed to persuade the doctors this morning that I can manage Theo's regime at home now he's off IV's, so eventually they agreed and I brought him home about an hour ago!

I am extraordinarily tempted to cook a Christmas Dinner tomorrow because there's no predicting when he might end up back in; if he went in every 6 weeks in the summer months I can only imagine it will be more frequent during Winter. Bit pessimistic perhaps but we've noticed a trend...

streptococcus pneumoniae

2009-12-08T16:13:00.002Z

Here we go again...
Theo has this infection this time. It is what we used to call pneumoncoccus and can cause pneumonia and meningitis and various other nasties. However, Theo is not terribly terribly ill as it was caught quite early on. He is vomiting constantly though and is quite badly dehydrated so is receiving IV fluids and antibiotics. He is very miserable and fractious and if anyone felt like they wanted to see him to cheer him (or me) up, please say so.
Hopefully he will be home in a day or 2 - I did beg the Dr's to let him come today but IV fluids and cannulas are pretty much beyond what I have learned (though I bet I could do it).
Boo Hiss as usual.

2009-12-06T19:10:00.003Z

I know there are a number of loving friends and relatives who check our blog for family news and this is one reason I carry on adding posts. However, I can't help wondering if you are all as bored and fed up as I am, at reading how Theo is yet again in hospital, keeping us at wits end.
In fact, I think we should name our residence 'Wit's End'.

So over to the news; Theo is back in hospital. On Friday we saw his consultant for a brief review for I had been concerned about his secretions. Chest examination concluded that his lungs are good. Dr Pandya inquired how we are as a family and I replied with a sigh that we are sick of to-ing and fro-ing to hospital and that while we have accepted that this is our life, not quite like anyone else's, it is still a tremendous drain.

On Friday night, Theo was vomiting and full of secretions and kept me awake. Saturday morning he was drowsy and coughing, feverish and miserable. Colin came back from work at lunchtime, took one look and we agreed he needed to be checked over by the hospital doctors. You may wonder why we don't go to the gp or walk in centre - they take one look at his notes and send us to hospital.
While he was being examined, the doctors found a nice red non blanching rash all over his torso - so now he is being treated for suspected meningitis, as well as whatever else they frighten themselves over. I stayed in with him last night and most of today but have had to leave him tonight. He's been feverish and grumpy all day and we won't know test results until tomorrow.

I have been recently very confused as how we are supposed to cope with all of this. I've gained so much weight and can't seem to find any motivation or self control. Colin's the same. Theo was only discharged 2 weeks ago and we were just about getting things back in order and looking forward to Christmas with him at home. I am really tired of trying to find optimism everywhere and yet he may even be well enough to come home tomorrow!

Answers and magic wands to Wits End, Mayfield Drive, Loughborough!

Theo's MOT

2009-11-20T16:25:00.002Z

Theo is now back home with another week of oral antibiotics to continue wiping out the monsters!
I stayed with him all week thanks to family help for which we are all really grateful. Being indoors for the majority of the time it feels like a week of life just went missing.

The boy is bouncy and smiley just as we love him. Sacha and Tabby coped very well without Mummy but they are great kids, full of resources.

Congratulations due to the new Mummy and Daddy in the family, Adam and Wendy. They have had a tiny wee boy a few weeks early but he is healthy and a good 5lb plus. He is to be known as Olly!! I cannot wait for a cuddle with him.

Stenotrophomonas Maltophilia

2009-11-12T17:15:00.002Z

Try saying that when you're drunk.

Theo has an infection in his trachey site and it needs to be destroyed/nuked/blasted away as his consultant advises it really wouldn't be sensible to leave it over the winter months, especially with the 'flu' malingering.

That's all sensible and ok BUT it has to be IV antibiotics which means a hospital admission for a week. Now he is older and has been home, I find it so much harder to leave him (and I found it incredibly hard to leave him when he was an inpatient) so we have another week of drama ahead.

You can find Theo and me in cubicle 6, ward 12, LRI children's hospital for the next 7 days.

Not such good news this time

2009-10-25T05:29:00.003Z

Theo showed some symptoms that we could not ignore on Friday, so we spent Saturday at hospital and they ran a load of tests. It was fairly clear that he is retaining fluid - and an x ray confirmed pulmonary edema.

We are home again at the moment and despite the complication Theo is fine and happy - such a resilient child, I don't know how he does it - but we have a load more time in hospital ahead. grr.

I suspect that without the necessary cardiac drugs, Theo's heart is having a harder time and as the diuretics had been reduced to help his kidney function, the fluid is just building up in his body. For the last 10 days or so I have been feeling anxious that something is just not quite right with him and even wondering if I am just plain paranoid these days because I seem to worry too much about a lot of things. I feel comforted that my intuition is actually ok!

Congestive heart failure can affect many organs of the body. For example, the weakened heart muscles may not be able to supply enough blood to the kidneys, which then begin to lose their normal ability to excrete salt (sodium) and water. This diminished kidney function can cause to body to retain more fluid. The lungs may become congested with fluid (pulmonary edema) and the person's ability to exercise is decreased. Fluid may likewise accumulate in the liver, thereby impairing its ability to rid the body of toxins and produce essential proteins. The intestines may become less efficient in absorbing nutrients and medicines. Over time, untreated, worsening congestive heart failure will affect virtually every organ in the body.

I will be asking about our trip to Great Ormond Street this week and the transplant assessment.

Busy

2009-10-08T15:41:00.003+01:00

We have been taking Theo up to Glenfield hospital every other day recently for blood tests. that makes 7 visits in a fortnight. Very tiring. His kidney function is under close scrutiny thanks to the cardiac drug being reintroduced.

He is also on his second course on antibiotics in a fortnight poor soul, for nasty trachy infections.

Tomorrow, Friday, he and I are going to stay overnight at hotel Le Royale Infirmary, so that he can have the pH study done. It is 24 hours of discomfort and boredom I should think, so I am not looking forward to this and I expect if he yet had that mental ability, nor would he.

Cardiac update

2009-09-24T20:41:00.002+01:00

Glenfield appt with Dr Duke today.

Theo was peeling the ECG stickers off his hands, feet and torso as fast as the technician was able to apply them and then proceeded to help guide the radiographer's hand and ultra sound wand around his chestduring the ECHO. When he got bored of the U/S imaging, he wrapped his legs around her arm.

Had to laugh when Dr Duke described Theo's recent renal failure as 'deranged kidney function'. I am certain that this is the true medical term but taken from a mothers context it seemed to apply quite well.

Unfortunately, the renal function is still imperfect and even worse, as we suspected, Theo's heart function is diminished since some of the drugs had to be removed from his regime. It isnt contracting so efficiently as before. He is still coping well in many ways and there are no signs of heart failure which is where we want to be but the ongoing concern is that without the medicinal support his heart will struggle and the need for ventilation will increase again rather than decrease. So I have to be back at Glenfield on Monday morning at 9 am (so long, social life plans), for Theo to have further blood tests and another ECHO.

Realised earlier on that I have been worrying about our life in the long term, anxious that we may never 'get back to normal'. It dawned on me there and then as it took me 20 minutes to load up the car with equipment, nappies, theo and pushchair, that this simply is normal and unfortunately liking it or finding it pleasant or easy has nothing to do with it.
Theo's progress and adorable smile may give heartwarming pleasure but no, contrary to popular optimism, it doesn't help with the frustration and anxiety. If anything, they provide a momentary lift followed by the most disgusting drop back to reality, which is a bit like that drop on the black hole at Alton Towers. It happens and you cant see it coming.

British Heart Foundation support

2009-09-24T20:35:00.002+01:00

Lita is a friend from playgroup who has recently completed the great north run, running for the British Heart Foundation. She had her husbands sister and a friends son in mind. Theo is the 'friends son'.

http://www.loughboroughecho.net/news/loughborough-news/2009/09/23/loughborough-runner-tackles-the-great-north-run-73871-24764188/

We are all so proud of her and applaud her achievement. Thank you and well done!!

Next steps!

2009-09-15T15:57:00.002+01:00

Theo is getting up and down and moving round!!

Gastrostomy news - Mr Nour has agreed to perform surgery provided Theo's heart is ok and that there is an anaesthetist willing to take on a risk like Theo. This is scheduled for Nov/Dec, all being well.

A gastrostomy is a portal made through the skin of the abdomen, directly through into the stomach. A balloon catheter keeps it in place and it cannot come out. It is much safer and more comfortable than the NG (Naso Gastric) tube.

He may also have something called a Nissens fundoplication. This is where the neck of the stomach is changed so that you cannot vomit at all. There are obvious downsides to this but overall it may be worth it.

2009-09-11T15:46:00.003+01:00

Unfortunately Theo's kidneys are still having difficulties and his blood tests show this. As a result the consultants have decided to drop another cardiac medicine and hope he copes without it. A further cardiac review this month will reassure or disappoint no doubt!

In general he is well and happy as ever. He has learned how to bounce/shuffle across the room on his bottom - this involves flapping arms very hard up and down to create upward movement and during this, his feet pull him milimetres forward. Over 10 minutes he can traverse the room. Ahh!!

He can now spend several hours per day off the ventilator which makes life SOOOOO
much easier. It means I can take him to playgroup, put him in the bath, wander off down the garden etc and I only have to take the suction unit, emergency trachy bag, suction catheters, feed pump, milk, medicines, syringes and NG emergency bag, with the nappies, clothes etc. phew, when we go anywhere (yes, some of it even when we go down the garden).

Congratulations to Nick and Panda on the birth of baby MAX MUDDLE! What a name!!!!

2009-08-31T09:13:00.002+01:00

Where has August gone? What happened to the summer holidays?

Theo is now back home with us and appears to be doing well.

The hospital dietician has given us a new hypoallergenic non milk formula which has vastly improved his vomiting; only after 12 months of me harking on about how Tabitha required soya as she was fully diagnosed with cows milk allergy...it simply isnt funny.

Theo's kidney failure has been attributed to a combination of factors. Dehydration (caused by consistent vomiting and diuretic frusemide), dehydration leading to poor cardiac output - kidneys not getting sufficient blood supply - and some of the rather important cardiac drugs - captopril and digoxin having side effects which include kidney problems.

Unfortunately there was no 'specific' diagnosis which means there is no way of knowing if it is happening again. Because Theo showed no real symptoms, I am very concerned that it could happen again and we would not notice. We will notice though, because now I am more paranoid than ever about how many wet nappies he produces and whether he is sleeping more than usual.

He requires regular blood checks now for this until the medics are satisfied his wee body is coping again. The digoxin has been dropped for a while but this obviously has consequences for his heart function so we cannot be so confident that his cardiac output will remain so good - roll on the next echo and then we can be reassured.

Without the vomiting, we dont need to consider a Nissens Fundoplication any more (this is an operation to clamp the top of the stomach to prevent the ability to vomit. it is irreversible and presumably horrible when you have a tummy bug). We are still hoping for a gastrostomy though as it will make feeding him the formulas and medicines so easy and free up his face.

The last few weeks have knocked me for six, as the saying goes.

Cardiac Clinic July 30th 2009

2009-07-30T19:06:00.002+01:00

Believe it or not but it is exactly one year, to the day, that Theo was admitted as an emergency to the PICU at Glenfield. I took a short visit back into the unit and was overwhelmed by unpleasant memories..yet also very happy moments.

Today happened to be his 3 monthly review at the clinic with his saviour Dr Duke. I took great pleasure in thanking Dr Duke for our year with Theo - it is thanks to his (and the other doctors') amazing expertise and innovative treatment that we still have our littlest boy. So despite the horrible experiences of the last 12 months, we are grateful for so many things.

Dr Duke has agreed that Theo is well enough to have an operation for a gastrostomy; this will mean creating a portal directly into his stomach for us to give feeds and medicine. It will allow us to feed him without the uncomfortable NG tube up his nose and perhaps will allow him to develop some eating skills.
Secondly, we are no longer anxious to hear from Great Ormond Street hospital; the urgency is reducing and although this means yet more shifting sand beneath our feet as we struggle to comprehend life ahead, it can only be a good thing. An amazing, awesome thing. Dr Duke took full credit - said it was his stent that had done it.

We are also incredibly grateful to all the kind and patient people who have entered our lives to support our family, while we have been insulated by Theo's illness.

So the future of Theo's treatment now looks like this; to reduce, bit by bit, the ventilatory support and the medicines until he reaches a minimum. There is no way of knowing how far he will get or how long it will take.

Here's to the future!!

Birthday Boy

2009-07-23T08:16:00.000+01:00

Thanks to everyone who came and helped and travelled a long way to make the day special! It may have been a challenge to brave the gusts and showers but the happy faces and satisfied tummies made up for that I think!
Theo slept for most of the following day, he was worn out completely.

Tuesday - his ACTUAL first birthday was a very rainy day which challenged our intention to have a special day out, however I am pleased to announce to the world that we are expecting twins in the near future.

Yes, this weekend we are fetching kittens from the sanctuary.

Photos will come soon, been a bit busy. Please email us all your pics too. Willow

Swine flu and the party

2009-07-18T11:32:00.003+01:00

Theo as we all know has extremely serious 'underlying health condition'. We need to be super conscious of swine flu in his case, therefore:

If you have swine flu, or possible symptoms (you can check with GP/NHS direct) stay away.

If you have been in contact with swine flu within the last 7 days you could be incubating the virus before showing symptoms; if you feel any symptoms please consider not coming. If you feel absolutely fine we are content for you to come (our decision, not official advice).

If you have totally recovered (symptom free for 48hrs) or have had no contact with swine flu you are safe to come.

We are as disappointed as you that swine flu has disrupted plans but please be assured that we would love to have visitors all summer long.

willow

theo's first drive

2009-07-13T09:24:00.002+01:00

well its just very cute isn't it?

In case you missed the local rag

2009-07-10T16:40:00.002+01:00

Surprised today by Theo in the paper - I was expecting it next week after his birthday party! here is the web link to the story

http://www.loughboroughecho.net/news/loughborough-news/2009/07/10/champagne-celebrations-for-theo-jones-s-first-birthday-73871-24106791/

Really good news, celebrate now!

2009-07-09T15:35:00.002+01:00

I took Theo to the respiratory clinic at Leicester Royal today to see Dr Pandya and left a very happy Mummy.

Plan now is to slowly but surely wean the C-Pap settings down over the coming weeks and when it reaches a certain point, to wean him from the ventilator altogether, hour by hour, over the following weeks. I was overawed to hear this plan prescribed over such a short time period - i.e. by September - but was reassured it is a best case scenario and may take longer. I hope for the best.

Even more wonderful was 'after he is weaned from the ventilator, we will think about losing the trachy'. I couldn't believe what I was hearing and asked whether it was not the plan to leave that in situ until after any heart operations. The answer was that heart surgery is even more complicated with a trachy and if he doesn't need the ventilator, then other consultants will be asking why he has a trachy at all.
Following this, I was informed that if he copes without a ventilator or trach and continues to grow and develop, it is unlikely that anyone will want to swap his heart for another, despite the stent and obvious cardiomyopathy.

Now I don't want to raise everyones hopes out of proportion..he might not cope so well without some support. He might cope and just not grow any more. He might do fine but it wears his heart out. But we are all under the impression that given his remarkable recovery from say, 50 weeks ago, and the prognosis given then, he just might surprise us all yet!

Don't hold your breath quite yet!

Wheeeeeee!

2009-07-06T20:07:00.003+01:00

Just to prove a point - Theo is definitely getting the most out of being at home these days!

He's a bit under the weather this week, we are not excessively worried that it is anything more than a cold.

Looking forward to his party! People have been asking what to get him for his birthday - perhaps vouchers might be a suitable idea then we can get things he needs over the coming months as we have a LOT of toys and developmental things leftover from Sacha and Tabitha.

Birthday Approaching

2009-07-03T08:28:00.003+01:00

Party date 19th July midday onwards (ending at reasonable time as kids will need bed and we will be worn out!)

If you still haven't received an invite but would like to come, please get in touch as it is most likely an oversight (we are trying to invite everyone possible!).

June Update

2009-06-15T17:52:00.002+01:00

Theo has hit 8kg at last, he's getting closer to 10kg all the time and it's great news!

He is now rolling all over and sitting up by himself and taking his nippy off for longer periods of time than he is allowed but still coping very well. I am going to discuss this with Dr Pandya at his respiratory review - perhaps the weaning from ventilation could move faster. we'll see.

We have managed to make a couple of small excursions and one big day trip to see a new baby, little Rebecca Rose Bennett - how lovely that was - our best weekend in about a year, visiting friends and taking our 3 children with us. Finally, a small sense of normality!

The biggest news of all is that Theo is rapidly approaching his first birthday. There was a time that nobody had much confidence that he would make one month but he has defied all of us and been stronger than we could have imagined. He's made the minimum criteria and things are looking good - so good that he may not be quite as urgently needing the transplant as he once was.

The transplant is still very much at the back of our minds as the critical point in Theo's future and indeed for all of our futures. That is why I am almost aggressively promoting the organ donation register. It is no good thinking that he is going to be alright if we don't actually make the effort to get on the register. Second to that, we have to consider that in order for a heart to become available for our son, we are expecting someone elses baby to die.

On that note, we have decided to throw a HUGE party (as big as our back garden will accommodate) for his big day and we would like many people to attend.
19th July, our place from midday onwards. please get in touch if you havent yet received an invite but would like to be there.

willow

Theo Simpson

2009-06-02T17:35:00.001+01:00

Theo is back home everyone, the hospital had enough of his vomiting and sent him packing.

Actually, we have to go back next week for some blood tests to make sure his liver function is returning to normal but there's not a lot else they could do.

Find my photo on the wall of life

2009-05-30T20:41:00.001+01:00

Yellow Belly

2009-05-27T21:18:00.002+01:00

Theo was admitted to the hotel royale on thursday night - blood in his secretions and a weird viral rash but was discharged friday morning with reassurance that it was nothing serious.
All weekend we treated him as we would any child, with calpol and cuddles. On Monday evening, Colin noticed that he had a golden tinge all over and as usual we ended up in the hospital yet again, watching our baby cry and kick for more blood tests and palpations etc.
The story is currently that he has viral hepatitis - he really doesn't get on with viruses, huh - but until there are some definite blood results he needs to remain in hospital having more obs and tests to rule out anything more sinister. There is little concern about right sided heart failure as his other signs look good but we have to wait and see nonetheless.

Cardiac Clinic review

2009-05-12T11:34:00.002+01:00

Thursday 7th May Theo was seen at the paediatric cardiac clinic by Dr Duke.

Dr Duke informed us that the time has come to refer Theo to Great Ormond Street to meet Dr Mike Burch, the transplant surgeon, and have the transplant assessments done.
He still has some growing to do (he's 7.3kg) but it may take a while to get the assessment done.

Ironically, Dr Duke said 'his heart looks as good as I've ever seen it!'
Of course, it is still really very damaged.

Please have a read of this transplant website - it is not a simple remedy. We should all be aware of the downside that underlines Theo's life.

http://www.nhs.uk/Conditions/heart-transplant/Pages/Introduction.aspx

This Thursday (tomorrow) Theo will be at the respiratory clinic and we are hoping that there may be progress reducing his ventilator settings, especially as his heart function is looking good (for him).

Life at home is a whirlwind. We are getting multiple visitors each day, not enough sleep and very little play time. All sorts of niggly little problems are unravelling.

We are going to a meeting for families of trachy children this weekend to meet more people and find some support networks. I do wish we could meet someone with Theo's condition, facing the same future but so far nobody has cropped up.

Will get some photos up soon.

Theo and his melodrama

2009-05-01T19:45:00.002+01:00

Today, there was an accident with some of Theo's equipment. His humidifier tank tipped over and water rushed into his lungs. Bearing in mind he can't cough things out like healthy people can, and that adrenalin etc is devastating for him, his carers and myself were rather 'anxious'. (To say the least, tears were shed by carers).
He treated us to a turning blue episode and not breathing properly so we had to administer oxygen and the paramedics advised another trip to hospital for him.

He has recovered well and is home with us and we need to look out for signs of infection so have some pretty strong antibiotics ready to go should he need them.
Tabby coped remarkably well by watching CBeebies throughout.

Colin and myself have a bit of a headache and disappointingly no carers now til Tuesday..

I think we can come to expect this as situation normal, having to drop everything and rush in to the Royal. Thanks to friends who rush in to help us out too.

Interesting facts.

2009-04-10T21:38:00.001+01:00

Firstly, Theo came home with us again today. We are very doubtful about this, because he still seems to have tummy bug symptoms and is coughing lots. So, we'll see whether he is ok or not.

Secondly, Theo has cut his first teeth.
Thirdly, he managed a few sucks on a bottle today but it was quite exhausting for him.

But he's home and it all feels exhausting again. Hurrah!

2009-04-08T16:10:00.002+01:00

Theo looks great today, if a little puffy but the cardiology team at Glenfield have said it's time to start back with the frusemide and captopril (diuretics and heart med). He's bright and bouncy again but not perfect and judging by his nurse's reaction, it is unlikely he will be home for my birthday. Which is really completely disappointing news.

Sorry everyone, no meeting Theo today

2009-04-05T07:25:00.002+01:00

Theo was admitted back to hospital yesterday evening suffering from dehydration because of a tummy bug.
He will be in a night or two until the fluid balance can be restored; Theo needs extra attention on this front because of his fluid restrictions, his diuretics and his heart medicines which affect blood pressures.
It does all seem very ironic...

http://www.thisisleicestershire.co.uk/news/Poorll-baby-Theo-able-leave-hospital/article-873300-detail/article.html

I spoke to the ward early this morning and he's a bit better than yesterday.

A VERY BIG DAY!

2009-03-30T07:15:00.001+01:00

Today, Theo is to be discharged from hospital and delivered into the loving fold of his family!

The story won't end here of course but to all ye blog followers, there probably won't be many updates as we won't have lots of time.
Thank you all so much for your support and kindness xxx

2009-03-17T10:54:00.001Z

At home with Theo!

2009-03-17T10:28:00.013Z

Guess who's home?

We have him! For less than 24 hours but hey, we've waited 8 months for this!

As if we haven't got enough going on...

2009-03-12T20:36:00.002Z

Theo came home again today (yes, apologies for not putting up pics yet) and we even managed to take him over to school when we picked up Sacha. There were lots of double takes in the playground as people slowly realised who I had in the pram. i.e. Not Tabby.

After a lovely day, we packed Theo into the car with his carer, Dawn, in the back and set off up the A6..only to flipping break down on the dual carriageway. The car simply rolled to a halt after losing all power. Had to call police, paramedics and RAC to rescue us - police as we were parked rather dangerously diagonally into the lane, ambulance to get Theo back to hospital before his next meds/feed/trachey cares due and RAC for stupid car.
Felt rather ridiculous and tearful as was not able to get out of car to say goodbye to Theo after such a nice day. Dawn had to go with him, leaving me in the hateful car. Irony is, it's booked into the garage tomorrow morning to have the fault fixed.

Really feel like comfort eating but am dedicated to weight watchers again. Good resolve.

Newspaper Fame!

2009-02-23T16:12:00.001Z

Same story, different papers.

http://www.thisisleicestershire.co.uk/news/Sign-language-help-battling-Theo-talk/article-719132-detail/article.html

http://www.loughboroughecho.net/news/loughborough-news/2009/02/20/baby-heart-patient-to-learn-sign-language-73871-22971116/

URGENT UPDATE

2009-02-15T09:43:00.000Z

Had to share this straight away; Theo rolled over by himself yesterday evening!!!
Had been overseeing another bolus feed trial (which was going brilliantly until I left)..and he was on his back and kept turning his face into the sheet and crunching his tummy to get on his side. I took the vent off for a minute and he went right over! Obviously his arms and legs were all trapped and he didnt know where to put them but he looked SO pleased with himself!

theo, sacha and tabby, jan/feb09

2009-02-12T20:37:00.012Z

Progress report

2009-02-12T16:32:00.003Z

We really will get some more photos on soon, because there are some crackers!

Theo is doing really well; he is almost sitting up by himself and spends plenty of time on his tummy now. He interacts very well with people and noisy toys and when he laughs you can hear the fast wheeziness through his trachy, so there is no mistaking it.
He has just started tasting baby slops this week; there is no talk of actually weaning him onto food until he has tolerated bolus feeds. And I know of children who have been tube fed for years before weaning so it is more about learning to like tastes than for nutrition.

I have bought a Makaton baby signing book - this is a commonly used form of sign language for children who cannot speak but can hear. It is best when everybody uses it so let us know if you want to learn too. Babies are great at it apparently and its best started young, so Theo is at an ideal age. We do not know how long he will have the tracheotomy so I see it as worth learning so he does have some way of communicating with clarity.

Things are moving on with regards to his discharge. Bit by bit we are receiving equipment from Red Cross etc at home and have realised Theo will need to become a permanent fixture in our lounge. We are getting there with training - still so much to do(boo!) and we now have been allocated a number of Diana nurses/carers who have begun to visit the hospital to do their training too.
We have met the Rainbows Children's Hospice representative who offer some respite services for children with life limiting/threatening illnesses and support services for family members, such as very waterproof shoulders.
I was reassured that Theo's condition was definitely eligible (which was both a relief - we will get help - and very sad).
We have been told that Dr Duke at the Glenfield recommends that Theo cannot tolerate anaesthetic right now so there will be no gastrostomy. That is a shame because the NG tube can be so uncomfortable for him and is much more dangerous in terms of aspiration.

With one of the carers, I took Theo off the ward this afternoon for about 15 minutes. It was a pretty complex exercise to be honest and although it was a delight to be able to give him the excitement he displayed, I cannot imagine it will be so easy by myself. Though I cant wait to try!!

It was also a shock for me, to suddenly be the recipient of so many curious gazes from people. I realised instantly that the practicality of taking Theo out will only be half the difficulty. Maybe in time our pride in Theo will compensate for this but right now when we are both so run down, overwhelmed and scared, it is going to be hard work.

Update following scans and meetings

2009-01-26T18:21:00.003Z

After the echo day on the 8th we waited for the 20th and 23rd rather impatiently.

Meeting the Diana nursing representatives was a pleasant and reassuring experience - there seems to be a lot of care available and it will be provided in a really responsive way.

The Planning meeting of last Friday was very productive; lots of issues were raised and dealt with, such as Theo needing a gastrostomy - this requires an operation under anaesthetic to create a portal directly through skin into stomach so that he can have his feeds that way instead of down the NG tube, which even I managed to pull out by accident today. Oops. There was a lot of discussion about when he will start to be allowed home - it will be a gradual discharge, in that to start with, we need to learn to take him off the ward for brief periods. Later on it will progress to hours at home, then overnight, then all day and night and then, finally, all the time!!

Which is a laugh in itself, as basically, the hospital and staff move in with us instead!

March seems quite realistic in some ways and yet also pointless. I am hoping he comes home for good right before my birthday - and I shall wrap a ribbon around his middle and stick a bow on his head. It will be the only thing I want!

25 weeks old

2009-01-13T14:39:00.003Z

It is quite hard to believe how old he is now!!

The day trip to Glenfield was great fun for Theo. We had to meet him there and as we arrived first it was lovely to see how many members of staff there passed in to ask after us and Theo. He is a popular little boy. When he came round the corner on the stretcher, a tiny little face surrounded by equipment and wearing his snowman hat, his eyes looked so full of consternation! It didn't take him long to recognise Mum and Dad though and his gorgeous smile lit up the room.

The scans showed no change in myocardial function - his heart tissue hasn't improved. Dr Duke talked with us about how it means that he will still be referred to the transplant team at Great Ormond Street in due course and when that happens, the urgency/level of priority will be assessed by them. In the meantime, from a clinical point of view, he is doing well (but we all know that!) and his medications are being optimised. The go ahead to begin seriously weaning the levels of ventilation was given and we should be able to see quite rapidly how much he can manage.
Dr Pandya - consultant at the Royal was not deterred in his optimism for Theo and tried to persuade us not to be disappointed. I feel very sad that his heart hasn't recovered even the slightest bit - a transplant op would have been best avoided in my mind in spite of the information about success rates. I just wonder how much luck we can expect to have as a family.

Tabitha cleverly managed to avoid her operation by spiking a fever and vomiting fairly constantly on Sunday night. We had next to no sleep and the washer was going all night too - then at 5.30 i called the ward to tell them she was sick and they told us to come in anyway (for 7.30) as if the consultant deemed her too ill we would get a faster appointment than if we cancelled. On top of that, me and Colin are both ill. I am staying home with Tabby until we are both a lot better as we don't want to share our nasties with Theo but it means we don't get in to see him which is so sad.

Happy New Year

2009-01-04T20:55:00.002Z

Dont have any new photos to date so I will keep it brief.

Mum and Dad have been speeding up with training. we are getting closer to being able to take him off ward for short periods to get used to being in charge.

Theo goes to glenfield for some serious heart scans on the 8th; his first taste of fresh air and daylight since the end of September.

We have a meeting with the Diana nurses on the 20th, and another planning meeting with Theo's full team on the 23rd.

Tabitha has her pre-op assessment on the 5th, followed by tonsillectomy and adenoidectomy on the 12th. Let's hope it puts an end to the sleep apnoea and means me and Colin get a nights sleep or 2 before Theo comes home and smashes that forever!!

Thank you to everyone who keeps on supporting us and making the effort to find time and money to provide practical assistance where possible. I know it seems like the drama ended when Theo stabilised- the immediate pain and acute anxiety passed - but the long term aspects and pressures are exhausting and devastating for us. I won't speak for Colin, though I know he does suffer; life for me is out of control and I find my emotional energy very low indeed.

However many challenges we face, I am really looking forward to having Theo home and being able to be his mum all day long. I miss him so much and hate leaving him when I have to go. March seems so close already!

Christmas Day

2008-12-25T17:47:00.009Z

Happy Christmas Everyone!

A collection of festive Theo photographs to lend a little cheer to the blog.

We visited Theo first thing this morning to deliver his presents.

Unfortunately we did not get to hospital in time this morning to get photos of Theo meeting Santa or to hear the Salvation Army Band.
Nor did we manage to capture his moments with the Leicester Tigers or City Football players or even Ray Quinn! He has had such a busy week in the run up to today!

He continues to gain weight and is developing normally. He has started laughing which is weird to watch without any noise but you can identify it by the air patterns through the trachey blowhole. He finds funny noises amusing just like any other baby!!

He is starting to spend some more time on his tummy as he is now allowed time off the vent (2 or 3 minutes) so that his neck tummy and arms can strengthen. This will enable him to learn to roll over and sit up by himself.
We have both proceeded with our trachey training and it is exhausting to have to go through it all.

I have finally called it a day on the expressing as I can not keep up with demand. I am so pleased I stood my ground about it though as I know I have done my best for him.

I will be spending Boxing Day and night with him at the hospital because it feels horrible not being with him at this time of year. We have tried to strike a balance for Sacha and Tabby so have passed the day at home.

If people would like to visit while they are off work over the holidays, let us know, we can try to accommodate.

With love from all of us - have a lovely Christmas Holiday x

Moving House

2008-12-10T10:13:00.002Z

I know everyone likes regular updates but we moved house on Nov 28th and have been living at my aunts house since then as the new place has needed a lot of renovation.
The stress of it is sending me a bit loopy, we cant wait to get settled in, HOPEFULLY BEFORE CHRISTMAS!
Theo is doing really well, it is a pleasure to report back. Finally everyone seems content to give him breastmilk again so all my efforts have been worthwhile. Sadly, the rate at which he is consuming it far outreaches my diminishing supply so the frozen reserves are going to last about 3 weeks! To think I've been doing it for 5 months!!
He is growing and meeting milestones and the physios/play therapists/occupational therapists are very happy with him. His last echocardiogram showed some definite improvement in his heart function - this is incredibly good news - if it continues, he may NOT NEED any heart ops.

We have a Multi-Disciplinary Team meeting on Friday - this is where everyone who is responsible for him, from heart to speech and language, nurses and outside social workers etc etc all meet and plan what needs to happen before he can come home. It is still anticipated to be March, so this gives us 3 months of planning and targets, and being ready at home. Lots of training for us!!!

Will do photos asap, just cant use own computer at the moment so cant download. He is gorgeous though and gaining weight at a healthy rate.
Willow

Special treat for fans!!

2008-11-18T21:22:00.014Z

We should have done this ages ago!!

Please try not to laugh at my ridiculous motherly attempts to urge smiles out of the poor child.

After last week's scare, Theo has done really well. He is back to his normal smiley self. In fact, he has gone beyond his normal smiley self, as he has suddenly decided to reach some more milestones. He is now reaching out and swatting at objects, including his yellow fish on his mobile, which is always way out of reach. Bless!

He is enjoying the odd suck on his dummy and is receiving all his feeds through the NG tube (note no NJ tube!!)

As part of preparation for Theo coming home, as I said before there is a lot of training for me and Colin to do. We are currently just working on the trachey care. A few weeks ago I helped remove the tube while the nurse replaced it (always 2 people to do it as it is so fiddly). Today I held my breath and did the inserting through the tracheostomy; it went fine and I got it in but my hands were trembling like mad as I did the finishing off! I was obviously far more anxious than I thought and suffered the effects of a massive adrenalin surge. I self prescribed chocolate at this point. Funnily enough, the pharmacist asked last week how we were coping and after a frank chat, he laughingly prescribed vodka for our predicament.

There has been so much wellwishing this last week; we are entirely grateful. I have felt so totally isolated at times as unless you have had the misfortune of suffering the same experience, people won't know how we feel. Believe me, not in your worst dreams! But smiles and efforts at providing comfort and assistance do help. From my point of view, it is easier to be genuine and frank when there is a real indication that people want to listen.

Theo and I have had some magic cuddles this week. He is beginning to enjoy the comfort of our arms and snuggles in for his naps. I have been quite content to sit with him fast asleep, watching the hour tick by, his little trachey blowhole whistling into my bosom.

Sacha came in at the weekend. I think there are definite similarities.

Theo loves to grip the trachey/ventilator tubing. He is becoming too adept and whipping it off and making the machines alarm.

Theo always has smiles for his visitors. Please get in touch if you would like to come and see him. We do need to plan for visitors as our days are so limited and we have training to get through as well as just being with him.

Willow x

Better Day

2008-11-11T20:17:00.003Z

Phew! Panic reduced! Been in to see him at last and he looked really very fed up with me. As well as a good pink colour. I almost got the impression he was quite disatisfied with the fact I had not been in - can hardly expect him to understand though.
Theo does have the RSV bronchiolitis virus BUT everything is under control. It is a sizeable step backwards as his ventilation remains increased etc (but we always knew this could be the case).
Just so the confusion may be put to rest, bronchitis and bronchiolitis are different illnesses.

As his feeds had been stopped for many hours, he was quite naturally cranky and unusually hungry - it isnt something he experiences often with a drip feed straight into his gut. I went to wash his mouth with a swab and he licked ravenously at it. I went in with a sponge to wipe the inside of his mouth (standard procedure) and he sucked furiously at it. I fed him 4 sponges worth (theyre the size of little chef lollies) of sterile water before running out. Between each sponge he went purple in the face and looked like a child in agony (waaaaaah) so i resorted rapidly to a finger and he went crazy for it. After 10 minutes of standing at an uncomfortable angle I thought he may just take the dummy in spite of it usually making him gag and retch. Indeed he did and fell asleep with it twitching. The speech and language therapy team will be delighted that there are occasions when Theo will accept things in his mouth.

Perhaps I shouldnt be so pleased to have discovered this when technically I should be focussing on his current infection but thats the way it is. Everything seems a little distorted these days.

For our readership - I know some of you may feel uncomfortable asking about Theo or discussing his condition, or admitting your lack of knowledge. It isn't worth worrying over, honestly. We won't judge you. Either google it or ask us outright because he's our darling baby boy and part of the family. We do try to keep the blog full of relevant information so that you are up to speed.
We are meeting our social worker tomorrow. We have lots of discussing to do.

Bad day

2008-11-10T19:02:00.002Z

Theo is suspected to have bronchiolitis - this is an inflammation of his airways that makes it very difficult for him to breathe. It is caused by a simple virus which most of us catch during the winter months but is particularly dangerous for a few vulnerable groups of people - especially cardiac babies. He HAS been vaccinated against it but this only means he won't succumb to it as badly. We were sent away from the Ward this morning (in fact I wasn't allowed in as have been ill) and all visitors were banned. There is a strong possibility Theo will return to CICU for a while if he does not respond to treatment.
He has been sedated once again with chloryll and given antibiotics until they are certain what has caused it. His heart rate (which is usually about 140) climbed to 200 - not seen that since he was first admitted into PICU and his breathing support has once again become breathing control.
We are very worried about our poor little boy - mostly concerned that he can't be feeling so good - but it is nothing more or less than we have been told to expect.
Keep praying, crossing fingers etc.
Willow

Cakes make the day!

2008-11-09T19:05:00.005Z

I want to say a ginormous thankyou to the ladies at Playtime whose culinary skills and lust for yummy confectionary have raised a lot of money. I mean, a LOT. Enough to help out for a good few weeks. The biggest thank you has to go to Lita who cooked up the idea in the first place - let it be known never underestimate the power of a cake bake sale!!

It has been a busy week or so for our family. Theo and Mummy have had a tummy bug (apparently its been all over the ward, that's good to know). Fortunately for me, I've thrown it off but as usual for Theo its a bit more worrying.

There are also indications that he has a chest infection so we are quite concerned for him. Obviously the relevant tests are being done and the doctors are reacting appropriately but I can't help but panic that it could be uncontrollable.

Our meeting with Theo's consultant on Friday, gave us real food for thought. Theo is not likely to be home before March next year and that is the best case scenario. When he comes home it will be with the highest levels of assistance available. He will have disability living allowance, respiratory nurses, a ventilator etc. We will have people coming in and out of our home assessing things and assisting life.

I will post more pictures soon, I promise. Just a bit rushed today. Willow x

My first Halloween!

2008-10-31T16:57:00.014Z

Happy Halloween!!

Just wanted to model my nice spooky outfits.

Thank you Janice for buying me the special one on the left.

I have been very smiley recently.

As you can see we have been working on different positions for our cuddles! It is so interesting to be able to look around the room and see where people are going to and coming from.

Because my liver is so enlarged and I often get very bloated, tummy time is really a bit uncomfortable. But Mummy has become so confident with all the tubes and monitors that she can fling me about a bit.
The Speech and Language Therapist came by today to talk to Mum about ways to desensitise my mouth. I havent really used my mouth since I came into hospital for anything except when the tube was pushed down my throat. There are so many aspects of my care that require special consideration. Mum and Dad need to give me gentle stimulation around my lips and tongue and let me dictate how much I can handle.

I spent some time in a bouncy chair too! That was really exciting

I am retaining fluid at the moment so I look quite chubby. I still haven't caught up with the weight gain I should have achieved but I am working on it and so is Mummy. (In terms of milk production! Not weight gain for Mummy - far too much of that already!)
If you are wondering why Daddy doesn't often get a picture on here it's because he has to come in the evening after work and very often I am asleep. I miss out until the weekend, on Daddy time. Sacha and Tabby don't often make it in because they get bored so quickly and there are no facilities or play areas for them here.

Finally, I just wanted to tell you how much I enjoyed seeing Nana Gill, Mama and Joy yesterday. Lots of snuggle arms and big faces.

Theo x

One of the family

2008-10-28T19:15:00.010Z

Hi there!

I have had loads of visitors! Lots of lovely people - Janice, Nan and Grandad, Uncle Alan with Auntie Julie and cousin Tom, cousin Matt, Nurse Debbie, Auntie Rainy, Mary and Karen have all been by. I would like to meet some more of you big-faces, warm-arms and snuggle-kisses. Please submit an application to Mummy and Daddy ASAP. ( We mean it, visitors would be welcome - so long as you are not poorly).

I am still going steady on the ventilator and the support is gradually reducing. I can't afford to rush though. From the last update it seems my readership may have been misinformed about the progress I am making. It will be long after Christmas before I make it home.

On the upside, I have been told that someone called Santa comes to Ward 12 and we get presents?!? Also the Salvation Army band come to make mummy cry with their carols.

But we can't worry about that too much. I have a very serious heart condition that won't just go away. It is very important I get lots of care to see me through the winter virus months.

On wednesday, exactly 3 months after I was admitted to PICU, I will be getting a real treat. I am finally allowed to get back on the real milk!!

Mummy took some sly pictures before I had my Naso-Gastric tube replaced.

Mummy also had the pleasure of hearing me cry on Monday. As part of the tracheostomy care I have the tube changed once a week - during the split seconds that there is no tube in situ, air can

pass through my voicebox. Well, you would wail too!

Just one word of warning. If you visit and the camera comes out, you probably will be featured!

Let's hear some visit requests eh?

Love Theo and family x

Just a little more news

2008-10-23T18:53:00.002+01:00

NB to all, Theo in Loughborough Echo again today, all down to his winning smile.

Yesterday mum and dad talked with a doctor about what the plans are for Theo...as you know it is a long complicated journey to get him home but briefly this is what needs to happen.

We need to undertake the training to look after his tracheostomy - suctioning, cleaning wound site, changing tapes, changing trachey tube, CPR for emergencies etc. initially mum and dad do this training but later on other friends and relatives will be encouraged to learn to give us support. hopefully there will be some willing relatives as me and colin will never ever get a moment off otherwise.
We must learn how to draw up medications and administer them, and his feeding through the tubes. We are quite overwhelmed by what parenthood is asking of us this time round.
Theo's progress on the ventilator must reach a baseline - he will come home with ventilator machine which is disappointing as it is going to make life very difficult in the most basic terms. However, he will be home one way or the other.
Other aspects of his health will be assessed and he must be deemed fit to be outside of hospital - he will retain open access to the High Dependency Unit or ICU as he will have the ventilator.
There will be an assessment of our home to ensure that the safety requirements are met and quite possibly some changes will need to be made.

Re the heart transplant - as we know there are minimum requirements for his eligibility, however, he will not automatically have this the moment he meets them IF his own heart is coping, no matter that it is not very strong. It is likely that his heart will become exhausted though.
thats all we know for now
willow

Slow but steady progress

2008-10-21T15:21:00.013+01:00

Hello fans!

Mummy has got some new photos for everyone to giggle at. I am working on a cool hairdo..well, I seem to be losing so much I have to make the most of my quiff.

My doctors are pleased with my progress. Bit by bit the ventilator machine settings are being weaned down and mostly I manage really well.

Sometimes the extra work I have to do leaves me feeling pretty sleepy. It's not good news if I have to work too hard to breathe because it uses up precious calories - and of course, I need to grow big and strong.

I have started reaching out for toys and nice bright things. Mummy, Daddy and the play specialists at the hospital are trying to keep me interested and stimulated when I am awake to make sure my brain keeps learning as it should. To tell the truth its amazing I can do much at all when you think how many drugs I need and how many hours I have spent ill, sedated and paralysed. I have started to enjoy playing and could watch my mobile and lights for hours but I also like rattles and mirrors and soft teddy (or giraffe) ears.

Mummy has been able to give me a proper bath - no mean feat when there is a tracheostomy involved. There is a major problem if any bathwater got inside -can you imagine breathing in bathwater - thats what it would be like. I could even drown, so it's really important people take great care. But it is worth it because I really like it and it makes me really sleepy.

On Bonfire night, November 5th, the ladies at Tabitha's playgroup 'PLAYTIME' will be hosting a cake sale to raise a bit of money for Mum and Dad to help pay for childcare, fuel and parking. It is about 60 miles to and fro each day, plus approx 6 hours of parking fees plus childcare for 3 days a week. So although mum and dad are taking it in their stride, every little kind gesture that people make, become big boosts to their morale.

Next week I should be back on the frozen reserves Mum has been setting aside for me. Hopefully it will help my poor tummy and I can absorb it better. It also has magic ingredients for my brain, eyes and immune system - and don't they need all the help they can get?

Bye for now,

Love Theo x

2008-10-14T20:51:00.002+01:00

A brief note to say THANKYOU to everyone who made donations in the form of sheets and clothing for the Paediatric ICU at Glenfield. I have given them everything now and they are truly grateful and a little surprised that people went to so much effort. I like to think it is because we all think Theo is so special.

Theo is now on Ward 12 at Leicester Royal Infirmary; this is the High Dependency Unit next to the Children's ICU. Nothing has changed in his care but he has been put in a room of his own to minimise the risk of infection from the sick children who are admitted with bronchiolitis/pneumonia etc during the winter months.

The ones we never thought we would see

2008-10-09T18:16:00.012+01:00

I simply have to let these speak for themselves.

A million 'thankyous' to everyone

who saved this little boys life on the 29th July

We knew it was coming but we never realised just how cute it was going to be! Can you

tell how pleased Mummy is?

Yes, we are ecstatic! It has been the biggest pleasure to see. Willow and Colin.

Tuesday 7th October

2008-10-07T10:44:00.009+01:00

Hallo everyone - a quick update.

Half asleep!

I have been fighting this candida infection but am still feeling rotten from it. I keep being sick and have had an upset tummy too. I dont have much to tell you because Mummy hasn't been to see me much this week. This is sad but it is because Tabitha is poorly too. Mum and Dad havent had nearly enough sleep and are starting to feel like they are falling apart themselves!

Mostly it has been a case of letting me get used to the ventilator and not disturbing me while I have an infection. I have been 'bradycardic' which means my heart rate has dropped significantly from time to time - an arrhythmia.

Nan and Grandad came by on Sunday before their holiday

By for now, Theo x

Thanks to those of you who have donated towards Tabby's childcare costs. It makes a vast difference to the levels of stress we are experiencing. During the day I am limited to the hours of 10-2 for visiting Theo. Even some of these hours are limited when there is an emergency so it is really important that Tabitha is cared for by somebody reliable.
Willow and Colin x x x

Things moving on at the Royal

2008-10-04T20:37:00.013+01:00

On Sunday 28th September...

I had some lovely visitors at the Glenfield right before I left. My Uncles, My Aunt and my cousin all came to coo.

It is so nice for me to meet people. It has been a really sad thing for our family not to be able to introduce me to friends and relatives. I am looking forward to seeing you all at some point, though you will have to forgive me if I dont remember your names.

Because Tabitha's birthday was on Monday, she had a load of presents and a cake on Sunday.

She loves Peppa Pig and her very talented Auntie Rainy made this cake for her. Tabby also loves Fifi forget-me-not.

Sacha had an excellent weekend with his Dad, Ben, in Lancashire. He saw a firefighter demonstration which he reported to be wicked.

The week started with my transfer to the Royal.
Well they weren't fibbing when they said the staff at the Royal were better at weaning ventilation.

Mummy and Daddy were under the impression that, following the tracheostomy, it would be about a month before I would get onto the 'Nippy' and then a lot longer before I could get off of that. The Nippy is a smaller, more mobile ventilating machine that does almost everything the big machine does.

I got my first taste of the Nippy on Wednesday and quite frankly, its fine. I am managing pretty well as the Doctors reduce the oxygen percentage and the volumes and rates that the breathing is at. I am doing more and more for myself. I got my, erm, nappy in a twist this afternoon as I've got another fungal infection and my temperature spiked so the oxygen went back up again.

Sort of hyperventilating - but another lovely cuddle with Mummy settled me right down again. I'm used to the 2 steps forward 1 step back progress though.

Most of my medicines are going into my tummy now. I have 18 different regular medicines to keep me going. Some are for my heart function, some are for blood pressure, some are for keeping me calm and pain free, some are nutritional, like vitamins and iron. I also have supplementary antibiotics and antifungal drugs.

My infection is quite a worry to the Doctors and they are thinking of arranging a CT scan to have a thorough look right through my body to make sure there are no 'nodules' of fungi anywhere. or other nasties.

Mummy and Daddy keep freaking out when they come in. Mummy was very tearful on Thursday - everything gets to her sometimes - so I gave her a long hug. Basically, because I am being stable, and the medicines are no longer on drips, the information they have relied upon - visual statistics on screens and digital displays - are no longer there and it is frightening because they cant instantly judge how well or poorly I am doing. But they have been reassured that there are plenty of signs to go on and the ICU nurses are there 24 hours a day.

Mummy has managed to find a childminder for Tabby but she cant start to care for her for a few more weeks as she is not yet available. Please, if you are able to help any day of the week, let Mummy know. Mummy is ever so grateful to all those who are helping already.

On behalf of Tabitha - thank you for all the lovely presents and cards and clothes.

Love Theo x

The Loughborough Echo Features Theo

2008-10-02T19:17:00.003+01:00

Theo is in the paper! He got a front page photo.

http://www.loughboroughecho.net/news/loughborough-news/2008/10/02/baby-faces-a-long-wait-for-heart-op-decision-73871-21946621/

Moving day

2008-09-29T22:14:00.003+01:00

Theo transferred to the Leicester Royal Infirmary today. He is in CICU (Children's Intensive Care Unit) now.
We now have to say a proper goodbye to the nurses and staff at the Glenfield. It is sad to be leaving so many wonderful people, especially as after 60 days there we feel like we had made friends with lots of them. A big THANK YOU to all of them.
On the other hand, we expect to be at the Royal for even longer, so we will be able to make more of an impression! Apparently Theo has already impressed the Nurses with his cuteness.

Photos for all.

2008-09-28T09:44:00.020+01:00

Here are some photos.

Not a great deal has happened since I had the tracheostomy. I feel better now and am starting to wiggle and move my face and mouth some more. I am keeping all the nurses on their toes by simply crying whenever they approach but for mummy and daddy..I am working on a big smile.

This is Friday 18th September.

My lovely physio, Susan, thinks I look really cute with Gerald Giraffe. She makes him kiss me, yuk!

You can see how orange I am here.

It is Tabitha's 2nd birthday tomorrow (Monday). She's nuts.

Because I have been lying here for so long and hardly ever get out the bed, my muscles are all quite weak and not very supple. Mummy tries to play pat-a-cake and round the garden but I cant get too excited either because it makes my heart tired.

Mummy hates going home from the hospital.
I try to make it easier by falling asleep before she leaves.

This is one of the first pictures on me with the trachey. I'm a bit bruised and swollen from all the fuss not to mention worn out AND sedated. Oh it does feel better already.

This is Julie. She has been to the same adventure park as Sacha. She is very nice. She likes dressing me in proper clothes. aaah.

I have woken up a bit more and am practising using my tongue.

Mummy and Daddy bought me this cool mobile. I love it and cant stop being mesmerised by it. It plays music and projects lights and those cool little fishes just send me right off to sleep.

I have instructed Mummy to include lots of photos as I know that loads of people have been missing me.

I do love a snooze with my teddy.

Not nearly as much as I love a cuddle with Mummy. Look how she gazes right at me.

This is the face I pull at the nurses. To keep them on their toes. It is my slightly worried, may break into a (silent) cry if they come any closer. It's a warning sign, I suppose.

Well, bye for now. I have my cool heart pillow. It's called a 'Love Nest' hee hee. See you next time..

Theo x

Have a heart??

2008-09-25T21:36:00.001+01:00

"I want you to know that I have added my name to the NHS Organ Donor Register so that I can help someone else to live after my death.
Every year hundreds of people die while waiting for a transplant. I want to help.
I registered my wishes to be a life-saver on the UK Transplant website. You can find out more about organ donation by visiting their site

www.uktransplant.org.uk

Willow

Now you see me!

2008-09-24T19:13:00.008+01:00

The tracheostomy went well!!!

We waited nearly all day for it to happen and then it was done within an hour.

Before!

Thank you to Mr Peak the surgeon.

After!

Hello everybody. I am afraid you can see how jaundiced I am - my eyes will eventually recover.

I am really looking forward to sucking on my dummy lots now and giving my mummy and daddy a big smile. In this picture you can probably tell how much sedative and tranquiliser I have been given. I feel a bit stunned and my best friend is gone (the vent).

This is how they dress me for surgery. I have leg and arm warmers made from cotton wool and plasters - it is quite cold in theatre without my clothes on.

This is my profile..aren't I handsome?

The tracheostomy should enable the ventilator to be weaned a little easier. I will remain at Glenfield for now whilst the Doctors, Mummy and Daddy decide what to do next.

Love Theo xx

Tracheostomy on Wednesday

2008-09-23T19:28:00.003+01:00

Theo will be having a tracheostomy this Wednesday. Please click on this link to find out about it.

http://www.ich.ucl.ac.uk/factsheets/families/F000305/trac1.html#whatistrach

It has become necessary for this to happen as he has been on the ventilator for so long there is some damage to his trachea from the tube. The 'Trach' is intended to be an interim measure, to allow him to be weaned safely from the ventilator over the coming months.

Our little boy is still very orangey coloured and his eyeballs appear to have been coloured in with a yellow highlighter pen. I learned today that the pigment 'bilirubin' actually is deposited in his skin cells and so he will become less jaundiced as his skin exfoliates. I was pleased to learn that the liver failure markers are reducing so that is good news!

Please send the creme de la mer products via willow ...

He had an NJ tube inserted last week - this stands for 'naso-jejunum' which means literally 'tube through the nose into the jejunum' which is a part of the small intestine. This was necessary because the monogen milk feeds were making him vomit which is most unhelpful to his cause. His feeds can be infused directly to the gut, bypassing the stomach and vomiting. However, somehow the tube has doubled back into his stomach which means his food has been going into his tum! a serendipitous happening.

Something that is magic to see is that he is using his mouth again. For the past 6 weeks he has opened his mouth only for us to wash; suddenly his digestive system is activated and he is making little baby gestures of poking out his tongue to taste the air and his lips and his appreciation of the dummy is wonderful and reassuring. With a tracheotomy his face will be clear and his head more mobile so we may be able at long last to see some smiles.
That will bring more happy tears to my eyes!!
willow

Keep leaving messages, its great!

2008-09-19T20:03:00.003+01:00

Theo is so jaundiced at the moment he looks like he's either discovered the St Tropez tan or has been tango-ed. His liver is failing due to the intravenous nutrition. There is now an urgency for him monogen feeds to increase so he has a tube through his nose that bypasses his stomach right into his small intestine which will mean no more vomiting.

He had a bronchoscopy this morning - a fibre optic camera inserted into lungs. There is some small damage from the ventilator tube so it has been replaced with a longer one.
He was due to have a tracheostomy today but has signs of infection so the doctors do not want to intervene too much - he had his chest drain out, in and out again today too.

Because of all this excitement, he has been paralysed and sedated for the weekend so fun times with Theo are out out out.

Funny little request

2008-09-17T16:49:00.003+01:00

We know there are many many people checking this blog - not everyone has told us or left a message. Please, say hi, even if you dont know us very well (or even at all). It is a curious thing for us to have opened our lives to the internet and it is really touching how many people are concerned for Theo.

Willow

September 13th/14th

2008-09-14T20:53:00.009+01:00

Theo started the weekend ok but had an eventful Saturday as an x-ray revealed his air in his pleural cavity (not good) and upon inspection his chest drain was found hanging out so it had to be replaced. This could have been the reason why his chest has not leaked for a few days but since it was replaced there has been only minimal fluid loss, hurrah!
High Five!!!

Nurse Debbie relieved after all the drama

He also has had a temperature so all of his drip lines are now replaced in new sites, including a horrible one in his shoulder underneath his collar bone. He has been re-dosed up with a different antibiotic and was pretty out of it Saturday afternoon thanks to the ketamine. I had a cuddle, as he was freezing having been exposed for hours having all these treatments done and he was not warming up properly. His nurse, Debbie insisted my body heat would be the best way. And it was.

Sunday has been lovely as he seemed happier and we played a bit with some rattles and Daddy had a long cuddle so Theo fell asleep only to wake up as we left. I cried then because I really did not want to leave when he was enjoying having me stroke his head, he was all dozy and cute. This is the dilema of having other children who also need love and attention at home.

He is retaining fluid around his chin and neck again but it is less worrying at the moment as everything else is stable.

This is an x-ray of Theo and his stent is shown diagonally. You can also see how his heart is enlarged on the right.

We managed to get a quick snap of Theo while Debbie was changing his face tapes - I can't believe how different he is.

this was erroneously labelled as the stent x-ray. it actually shows his lower jaw and all his tooth buds.

We want to say hello and thank you to all the professionals out there who are reading this and are not allowed professionally to leave a comment.

And also to everyone who knows us and is looking and not leaving a comment simply because you have decided not to.

For whatever reason.

Back on the PICU.

2008-09-12T11:52:00.011+01:00

So far so good!!

Theo with his ever loving nurse

When Colin returns to work very soon we will be very limited about visiting Theo as I will have only 10-2 during the day and Tabitha with me. While Tabitha is with me I can do nothing with Theo as the ICU is not a nursery. People keep asking how they can help - having Tabby for me for a few hours here and there would be the single most useful thing you could do. Please, if you can manage, let me know.

We enjoyed a really very lovely cuddle for an
hour and a half. Theo was so settled and snuggly
I didnt want to put him down but i really really

really needed a wee. willow

Theo came out of the theatre much sooner that we had anticipated. Dr Duke was thrilled with the ease of hepatic access and proclaimed his intent to repeat it. On another patient, I expect. The entry wound was approx...wide and has a mr happy plaster across it. amazing.
we have found an x-ray online of a heart with a stent in it - it's not theo's nor is it in the same place, but you get an idea of it.

http://www.sahha.gov.mt/showdoc.aspx?id=559&filesource=4&file=fig07.jpg

Initial results show that the blood is flowing through it as planned and the pressures have reduced appropriately.

He was truly very alert during our cuddle. His eyes are clear and he was looking at everything. I did hope for a smile but it hasnt happened yet. sigh!

Long term results will be monitored over the ensuing weeks - nobody is expecting an overnight miracle.

Today Theo is to be left alone to recover. His sedation is reduced in stages and he is monitored on all fronts for signs of infection, stent displacement, embolism etc.

Proper mummy- baby eye contact. Got to say though that he looks likes he's trying to tell me off.

Personally, I am naturally relieved this bit is over and he did not die but the massive distance remaining daunts me and saddens me. It's not enough comfort for me that he survived this when I know there are still so many unknown risks for him. Yesterday was the crest of a wave and we crashed onto a shore intact. But let's face it, it's an unexplored territory and we are already so exhausted and drained. The way I hunger to hold my baby - it feels as though he were carved from my body with a sharp knife - does not leave me, so when I observe him, sometimes it feels as though I had already lost him.

But he is still with us and probably has plenty of mileage in him. I asked when the stent would be taken out and the response was 'when his heart is explanted, when he has his heart transplant'. I cant bring myself to think that far ahead right now.

This is the wonderful Dr Abdul Duke, who bounced like a puppy, in delight at what he had achieved with the transhepatic stenting. It is to Dr Duke that we owe most gratitude as he is the gentle man who admitted Theo to PICU on the 29th July 2008.

Dr Duke with his star patient!

He really wants Theo to get better now.

Thank you for ongoing support.

Post operation

2008-09-11T19:32:00.001+01:00

Theo is now back on the ward after his operation. Will update again very soon. So far so good.

Op postponed again

2008-09-10T19:25:00.001+01:00

The operation has been postponed until Thursday at 2pm

Amy

Another date change

2008-09-10T06:49:00.002+01:00

After yesterdays disappointment, I felt very low; I felt like I needed to see Theo again so I went back to the Glenfield for a few hours.
Shortly after I arrived, Dr Abdul Duke appeared at Theo's bedspace and told me there were no radiographers in Leicester or Nottingham that could help with an hepatic entry..I replied 'oh' with some dismay.
He then informed me that he had 'an old mate at Birmingham children's hospital' who he had called and arranged for him to come over tomorrow (wednesday) afternoon. Again, i replied 'oh' but with more cheer.
This radiographer is experienced with hepatic (via the liver) entry so combined with Dr Duke's expertise as a cardiologist I am quite content Theo is getting the care he deserves.
So it is rescheduled for this afternoon.
Cross everything again.
Willow

No septosotmy today

2008-09-09T16:26:00.002+01:00

After all the anxiety we experienced last night and this morning, the septostomy was called off mid procedure.

There were three feasible access points for the catheter - the groin, neck or through the liver. Dr Duke agreed that if the liver became necessary it would be postponed until a radiographer could be available to assist the passage of the catheter. Unfortunately, despite an attempt to go through the groin, the veins are already too scarred from all the other lines that have been in and it proved impossible for the procedure to continue.

Feeling relieved in some ways - We have not lost Theo - but also incredibly dismayed and frustrated. What an anti-climax - we are emotionally drained.

The risks of hepatic entry are greater but it also means that there is ONLY that way of performing this procedure, which itself is a last measure to keep Theo with us.

The next catheter procedures are scheduled for Friday, so we are hopeful he is able to have the surgery then.

Cross your fingers, second septostomy.

2008-09-08T17:24:00.004+01:00

Yesterday morning Theo looked really bright and better but then in the afternoon Colin was with him and reported that he was going downhill again.

Today we visited Theo and were told that 'his lungs had haemorrhaged' and because of that he was so heavily sedated and paralysed that I (Willow) felt too disappointed to stay very long so we left after a few hours.

Late this afternoon we received a call to inform us that the consultant cardiologist, Dr Duke, had reviewed Theo's notes and wants to perform the septostomy with stent first thing tomorrow morning, ahead of schedule.

We had been informed that the fungal infection needed to clear first so we have some questions to ask but at the moment we are assuming that it will go ahead. Colin and I are planning to stay the night at hospital to be there with our baby right up until it happens.

Willow (and Colin)

Donate to www.heartlink-glenfield.org.uk.

2008-09-07T12:29:00.012+01:00

First of all, everything is postponed until the fungal septicaemia is eliminated. This is expected over the next few days.

The current plan with Theo’s care is to reduce congestion with another septostomy, this time using a stent (to brace the hole open at the optimum size and prevent shrinkage which is what has happened since the first time). Some aspects of this second procedure will be higher risk due to the need to push a stent through a catheter which will travel from his groin upwards into his heart. The hole they made last time was approx 5 millimetres in diameter. .

If this works then hopefully his lungs will dry up some more and he will need less ventilation support. Next hopeful step after that would be the tracheostomy.
http://www.nhsdirect.nhs.uk/articles/article.aspx?ArticleId=371

Sealing the pleural cavity has been on the agenda if the chylothorax is not overcome but the septostomy could help to avoid it so this will be postponed for now.
The description of this procedure sounds quite unpleasant as it requires the surface of the lungs to be aggravated to make them swell and seal the pleural cavity to prevent the chyle fluid from entering and lying there. They can do this by either injecting a sort of sterile talc or antibiotics into the cavity or (worse still) poking a finger in and ‘roughing it up’.

The MRI scan was done this week and revealed pretty much what the consultants had expected. That Theo’s brain is small – exactly as it would be for a neonate who has spent the majority of his life either paralysed or sedated and up to his eyeballs in valium. The basis for doing the MRI was that if Theo had sustained brain damage from the seizures he had when the virus had caused the encephalitis/meningitis, there would have been little point in continuing any therapy. So hurrah for another day!
What we need to do for Theo is try to stimulate him as much as we can with loving cuddles, stroking etc, lots of talking and music. Just what we would try to do at home but with limitations.

So the intention is to keep him stable on a day-to-day basis between the above planned procedures (the septostomy and tracheotomy), which will hopefully take place over the next few weeks.

Generally Theo has been stable but yesterday there was a step backwards. He looked very puffy again around the eyes and neck but there did not seem to be any cause for concern – certainly the consultant was happy with him – but during the afternoon I had him out for a cuddle but he was not happy at all. He kept shifting his head from side to side, would not open his eyes, his hand was batting to and fro and his heart rate and breathing had increased dramatically – which both indicate distress. So after a few disappointing and worrying minutes I asked the nurses to put him back into his cot because I didn’t want to be the cause of his upset. He was also sick a few times and an x-ray showed stomach distention.
Fairly rapidly the decision was made to paralyse him once again and increase his ventilation right back to starting levels. His blood results (taken every hour) were very poor.

Later on we discovered that one of the lines into his foot vein had come loose and so his diuretic medicine had not been getting into his system – nobody knows how long – hence the fluid retention. Also it must have been quite sore having the medicine entering his tissue rather than vein.
This morning he seemed much more relaxed (more morphine, diazepam etc) but his blood and breathing rate had come down and the ventilation is being gradually reduced again.

Learning to focus

Tabby not quite comprehending what a special moment this is.

Spitting image, again.

Theo on Friday night – first time in a bouncer. He was starting to get puffy here.
Tabby on left, Sacha on right. All approx 2 months old.

A more peaceful cuddle
Dinky little Theo

Cute as a button

Give Blood

2008-09-03T09:36:00.000+01:00

PLEASE GIVE BLOOD REGULARLY AND JOIN ORGAN DONOR LIST.

If you want to make monetary donations...http://www.heartlink-glenfield.org.uk/ these people are looking after us by providing accommodation and hospitality at the hospital, as well as support, advice and even massive financial contributions towards equipment for the paediatric cardiac unit.

Yesterday Theo got very distressed for some unknown reason and his breathing became unstable so he was sedated and given adrenalin to nebulise his lungs. As a result he slept for the remainder of the day.

Today he was still sleepy but less irritable. He came out for a lovely cuddle with me and even deigned to open his eyes and have a gaze at his poor pathetic mama. I must look so desperate every time he focusses. No wonder he wants to sleep sleep sleep.

I had a good chat with another of his many intensivists (difficult not to substitute insensitive, purely from a spelling point of view),James, who will be attending the next BIG multi consultant discussion tomorrow morning, bright and early. He highlighted the recurrence of the chylothorax and the possibility of an operation to seal the pleural cavity, which, if successful, would mean a move back to proper food. well, monogen - lipid reduced milk. And maybe another septostomy. That's the catheter surgery where a line goes up through the groin and on into the heart, where the little hole they enlarged last time would be re-enlarged and braced with a stent. a bit like an ear grommet basically, but larger. not much though.
Theo is also being dosed close to heaven tonight for an MRI scan. quite exciting - i wish i were there tonight to see what happens but Colin has the honour. Also another heart echocardiogram. to see whats happening there. the treasure chest, the control centre.
we've joked about renaming Theo 'adolf or lenin' as he is a dictator. the amount of people submitting to his needs...my oh my.
meanwhile, tabby is quite busy emptying packs of baby wipes one by one and leaving them inside peoples shoes. good girl.

Willow

2008-08-31T23:08:00.000+01:00

Theo's ventilation was increased a lot at the end of last week. This was down to fluid gathering again on his lungs - very disappointing as it indicated the chylothorax was back. Over the weekend his lungs have drained a lot of fluid but with the increase in ventilation he is once again stable. The fluid has not been confirmed as chyle but is still a significant problem as it means the chest drains stay in and he is once again nil by mouth.

There is no improvement to report but there are small changes in medication; in order to reduce the number of entry sites on his body and therefore reduce infection vulnerability, intravenous infusions of drugs are being replaced with oral doses. The change of morphine left him very distressed and that has been reinstated intravenously.

My mum came to visit today (Sunday) and was honestly shocked by the amount of 'invasive intervention', Theo is experiencing. She remarked that even from the explicit descriptions and photographs we put on the blog, it is difficult to envisage how ill Theo actually is in 'real life'. I personally want to reiterate that Theo's life still hangs in the balance. This does not make me morbid or depressed - just capable of being honest. Willow.

Anyone got any good books?

News from Theo's consultant

2008-08-27T22:13:00.000+01:00

Today we had a lengthy discussion with Theo's consultant intensivist, Dr Duthie, which was both positive and negative.

Since he was admitted to Paediatric ICU, we have known of the three possible scenarios for cardiomyopathy patients like Theo.

A third of patients die.
A third of patients' hearts remain the same and require constant medication to survive.
A third experience recovery of heart tissue and improve, some completely.

We feared the worst this morning as we approached the hospital but have been pleasantly relieved for now.
Our understanding has been that as his heart has not improved he was in the first, most disappointing category. However, improvements have been seen in the last month; he no longer requires 'inotropic' medication to support the heart, and in the last few days the chest drainage in particular.

This is not to say his condition cannot become worse again but there are three main things to consider.

1) His vulnerability to infection is the current main concern. He has had a fungal infection already which has reappeared within the last 24 hours. He is also becoming more susceptible to infection due to the number of entry points from wires etc and the intravenous nutrition. There is concern that his natural defences are already depleted therefore treating infection may become more difficult to control. In his current vulnerable state an infection could be fatal rather than his heart failure. Being in Intensive care means that every few hours blood samples are taken and cultures grown to that there is no delay in diagnosing an problem and treating it - this reactivity protects him somewhat.

2)Ventilation - his reaction to weaning the breathing support this last week commenced well. Unfortunately it has ultimately proved too much hard work for his tiny little lungs and the support has been fully reinstated at levels similar to when he was admitted. This will need to be a medium to long term action, done slowly.

3) His heart function - this is neither deteriorating nor improving but is stable and controllable. (Please re-read about dilated cardiomyopathy).

Therefore, we're feeling a little more confident about his chances of survival and have everything crossed in the hope that an infection doesn't take him in the mean time.

Long term ventilation is best managed with a tracheostomy, so this will happen in the next few weeks. The doctors also aim to replace his various tubes etc with oral doses of medication.
The tentative expectation is that his cardiac condition will be sufficiently managed at Glenfield so that he can ultimately be transferred to the intensive care unit at the Leicester Royal Infirmary where they specialise in respiratory care. If all goes well, it would be here where they could change his ventilation equipment to something more mobile. Myself & Willow would then be trained in his day-to-day care(!) over a period of weeks/months (depending upon competence!) to operate ventilator / administer drugs, etc. Ultimately, we could bring him home with the help of local support services, etc. This brings its own set of fears and concerns but we are obviously more than willing to deal with them.

In the long term, as he grows bigger, his respiratory function could get better and the ventilation may change depending on any improvement. There is nothing that can be done to mend his heart but apparently babies heart cells can generate until about nine months of age and so we have to hope that in the next eight months some regeneration might take place.

The only other option that could be considered is a heart transplant if his condition remains that same. Considering the risks and the availability of suitable donors, it would be dependent upon his predicted quality of life. This would not really be a possibility until he reached around 9 months or 9kg in weight.

So given that we went to this meeting dreading that this may be the point at which we began to be prepared for the worse possible choice,to withdraw care and allow him to die peacefully, we are rather pleased - Incredibly pleased but trying to remain realistic all the same. We feel we can begin to hope for a future with Theo, something we've tried so hard not to do for fear of worse outcomes.

Colin

2008-08-27T17:03:00.003+01:00

yesterday things were looking ok statistics wise and i was on even keel emotionally until one of the intensivists gently introduced 'quality of life' and 'long term plans' into the conversation, prompting horror upon my part about needing to withdraw care, which is still a very real scenario. This also prompted my introduction to the diazepam my dr prescribed for acute anxiety.
The truth is that no matter how many minor infections he can fight off, his heart will not support his life if he were not in intensive care with thousands of pounds worth of drugs being pumped into him every minute of the day.
It hurts terribly to think about it but we all need to be realistic about what Theo is going through and if his heart does not begin to improve, what kind of life he is having.

However we have not been approached as of today and therefore I can tell you that his lungs have not drained any more fluid which means the dr's are happy to reintroduce special milk formula monogen (mine still goes in the freezer). This is a nice thought - for the last 3 weeks he's been on the total parenteral nutrition - a kind of human need soup - through his veins. also the possible removal of the chest drains which means cuddles are more simple. though not straightforward in the least.

on the downside, he has had another fever in the night and his heart rate and breathing rate are very high again - they have sedated him again with fentanyl.

Willow

Bank holiday

2008-08-24T16:08:00.000+01:00

Thank you for staying interested and supportive.
Theo has just about recovered from the yeast infection and the new drug appears to have had some positive effect (along with the diuretic) as his chest is draining next to nothing, his puffiness and fluid retention has just about vanished and he is peeing plenty. We are all relieved about this - also his blood pressure and heart rate have been as good as we've seen since he was admitted.
No change to his damaged left ventricle but this was always going to be a slow story - the immediate problems of the lungs and liver were more of a concern. The consultants have given him a second dose of immunoglobulins - which we keep referring to as immune goblins - which have been shown to help sometimes with myocardial damage. So its a shot in the dark but hopefully will hit the target.

He has been wide awake much more in the last few days. He's really lovely and responsive - and although he will be delayed developmentally, he's all there. And should eventually catch up. I have this current fear that the nurses will see his first smile etc before we do and I suppose that's ok but I hope they pretend they havent and when we see it the first time, that will be the FIRST time.
Have a lovely bank holiday - or have had one.
willow and colin

Wed 20th August

2008-08-20T11:21:00.000+01:00

Last night Theo did not look so good - his breathing was laboured and he was very puffy, skin all dry and pasty. Blood samples are regularly taken to culture and a fungus has been found, basically a yeast infection in his blood which is causing a fever and upsetting his lungs on top of the generalised problems. However, this is being treated and when I spoke with one of his consultants this morning I was told that the initial results from the Levosemindan were promising but that the infection was masking any other effects and so as soon as the infection passes they will resume the administration of this medicine.
Also, he looks loads better again this morning. Less puffy, breathing regular and not nearly as rapid. Due to have a transfusion this morning which will no doubt improve his colour too. The alert Theo we photographed last week has gone into a sort of hibernation again as he is dealing with these new challenges but I hope we see some more of him soon.
There was a suggestion that he may need an operation to seal the pleural cavity if the chyle leakage does not improve as he cannot receive intravenous nutrition forever at this age but the consultant wants to see if the medicine really works first as surgery is also undesirable.
Willow

Update post op

2008-08-18T23:48:00.001+01:00

Since the procedure last wed we have been waiting for two things:

a)his blood pressure to remain stable,
b)his chest to stop draining so much fluid which would indicate that the chyle production was reducing .

Initially the drainage reduced a lot but has crept back up a bit. His blood pressure has remained stable and the Doctors are content with that.
It seems likely that the hole which they enlarged in his heart has shrunk back a little - it is quite elastic tissue - which has meant that the initial large success has been brought back a little . The fluid retention is quite visible on him too, his eyelids are really puffy and his neck looks massively fat and floppy.
There is a fairly new drug available -levosimendan (simdax)- which is currently unlicensed for children that has been used a little in Australia for children with similar heart failure. It has been successful at helping the blood pressure and contractility of the heart. We were asked today for permission for it to be used on Theo and we readily agreed. We did not feel there was another option for him at this stage as he has reached stalemate again.

Other news - He has had a line put into his scalp today - we asked for the shaven hair to be saved for us and were presented with a pot of several hairs and a lot of dandruff. hmmm. he's under a heater day in day out so his skin is pretty dry as an excuse. a line basically is an access route for either taking blood or administering drugs.
He has been weaned off of morphine, now just paracetamol. Dopamine gone too. There is talk of removing the gonzo shape breathing equipment and replacing with delightful sounding nasal prongs.
I also tried to give him a dummy - normally wouldnt want to give one but as he has nothing else to suck I thought it might be nice for him and the nurses suggested there was evidence that it would help keep his mouth and jaw exercised. He liked it!!! he also has these lollipop shaped sponges on sticks that the nurses clean his mouth with and smear anti-thrush ointment that tastes of cherries around his mouth and he apparently sucks on these too. yummy!
I am getting quite brave and competent at doing some of his care routine. It might sound funny coming from a mum of 2 already but when all the wires and stuff are everywhere, even giving a bed bath and changing a nappy becomes terrifying.

please keep leaving messages - they mean a lot to us when we read them. x willow x and x colin x

Pre and post op photos

2008-08-14T15:04:00.005+01:00

Theo is stable again, he tolerated septostomy well and nurses are going to TRY to reduce forusemide and morphine (diuretic and well, we all know what morphine does) today to give his kidneys a break too. Here are some photos starting from post to pre op. Including a much needed cuddle from Willow and Colin.

Operation update no.1

2008-08-13T20:31:00.002+01:00

Theo tolerated procedure well. It's too early to say what effect on lungs and liver the operation has yet but it's a big hurdle crossed.

Heart Surgery

2008-08-13T15:07:00.003+01:00

Theo will have a septostomy at 15.30 today. This is done through veins rather than open heart surgery.
Smallrisk of death as there is with any heart operation but if successful there is a large benefit to lungs and liver.

Possible need of EMCO machine click for definition.

Please keep finger, toes and everything crossedI will update as soon as I hear more

Appeal for spare cot sheets and baby clothes for intensive care unit.

2008-08-13T10:13:00.000+01:00

"BEFORE I START INFO UPDATE: childrens intensive care unit is extremely short of cot sheets and blankets, and suitable baby clothing. sleepsuits with poppers everywhere are great but especially any outfit that can be unpopped in every direction without moving baby. Because so much time, money and care is being given by PICU I would ask anyone reading whether they would please donate anything they can to the unit for other sick babies benefit. Ordinary single bed sheets can be cut and hemmed - they dont need to be from mothercare - just cotton and the right size without loose threads. They are also short of baby socks and scratch mits. No knitted items as they have been banned, much to the nurses disappointment, because of a heath and safety ruling. bah!

this morning the team of consultants working on theo's case will be discussing what to do with him.

His situation currently is thus - stability has been jeopardised by the fact that the chest drains are unable to reduce all the excess fluid in his pleural cavity - the area beneath the lungs into which they expand when you inhale. The back pressure of blood in his heart is preventing the thoracic duct from working properly which means that lymph fluid - chyle - is unable to drain through the correct passage and instead is leaking into the cavity. This condition is known as 'Chylothorax' and (simplified) is not uncommon in patients with heart problems.
The other point of discussion is a 'Septostomy' which is a surgery on the heart which may be able to help his heart function sufficiently to prevent organ failure. It will not cure his heart. You can imagine how happy we feel about this.

Yesterday I spent all afternoon with him and was delighted to see him 'awake' several times though unfortunately for him it was because there were so many reasons for doctors and nurses to prod him, take blood etc so poor theo really needed to be asleep and couldnt. He kept rolling his eyes as if to say 'bloody hell, not again'. I was told I could have another cuddle but that also fell by the wayside as there simply wasnt an opportunity. I was pretty upset by this but I have to bite my lip and rationalise that its more important for him that he gets the medical attention - then hopefully it will mean cuddles for the rest of his life and not just for 20 minutes once a week. Providing that isnt the sum of his life.

His heart rate had increased and he was struggling with breathing again. He had also had a temperature and his feet and hands were cold again - this is probably due to poor blood pressure not pumping blood far enough with enough force to reach extremities. He had a pair of socks as mittens.
I cant speak for Colin but I am starting to really feel the strain of this situation. It is hard enough adjusting to not being pregnant and dealing with hormonal fluctuations but the maternal need to feel baby in arms is driving me insane. I don't want to alarm people but as mostly when I speak or see people I think they get an impression of calm and that I am coping 'admirably' as someone said to me..I ask anyone - what do you think would be a standard reaction to knowing your new baby is probably dying before you ever got to see his smile? and then try to look beyond my calm expression (which is really for Sacha's and Tabitha's benefit). Of course, we live in hope and I am still expressing milk with the intention to feed him myself WHEN he recovers. But it doesnt change the terror I am feeling and the heart bursting anxiety I experience whenever a doctor approaches me to talk.

Let's hope the next update can be light hearted again."
Willow

Eyes open

2008-08-11T19:25:00.001+01:00

Over the weekend Theo has remained stable and he has been weened off his sedation. It's really nice to see him awake for the first time in two weeks. Eventhough he can now wake up, has a bit of a look around for a short while before going back to sleep, he is still very ill. There's been no improvement to his heart function and we have to continue to wait and see if his body can start to repair itself.

His stomach is now a lot less bloated but his chest still has a lot of fluid that is having to be drained from either side which isn't very nice. Until this fluid situation starts to improve he will continue to be fed intravenously as this will reduce the strain on his stomach/chest.

Also, his ventilator tube has been changed today and now goes up his nostril rather than through his mouth. Apparently it's more comfortable for longer term use though it looks a bit strange.

We take every day as it comes, at least he's now almost two weeks older that he would otherwise have been - that's a good thing.

Colin