The gastro bug

This gastro bug is really giving William a hard time. It has not abated and he is getting very high temperatures. Today he was up to 40°C. While managing the gastro, the team are also looking for other possible causes for his fevers. Yesterday he had an echocardiogram and a chest x-ray. Today he has had blood and stools collected again to culture.
When he is hot, William is inconsolable. Today he required sponging to get his temperature down. He was so unwell with his heart rate well over 200 and his oxygen saturations sitting around 65%. When his temperature came down he bounced back so well though. Tonight he actually sucked on a bottle again and took 40mL of expressed breast milk in one go. He would have kept on going if there was more in the bottle!
It is encouraging though that when he recovers from this heart operation and this stroke and this infection, we have our wonderful little boy back again.

Overcoming a virus

William continues to make progress. He has been able to co-ordinate a bit of a suck and has been able to even manage to drink a bit from a bottle. His diarrhoea continues and he has had fluctuating fevers. He has had urine and blood collected to try to culture any bugs. So far his poos, wee, snot and phlegm have all been clear.
I think that he has a virus.
Given that he must not be feeling too crash hot from that, he is going reasonably well. His oxygen saturations are still a bit on the low side and he is still requiring some oxygen through nasal prongs. His abnormalities of his heart rhythm (ectopics and bigeminy) continue but are not worth treating.
We will plod along and make sure that he is supported until his body gets on top of everything - and this week '“everything'” is quite a lot to get on top of.

Hope

William has been a lot less irritable today. He has not had a seizure that we have been able to see. He has been much more alert, was goo-ing and gaa-ing and has even given us a few smiles today. He is not back to normal yet but it is such early days that we are encouraged in our faith that he will come through this really well.
We were visited by the Prof Ouvrier and the neurology team who explained that from the images that they could see, it was not absolutely certain that the damage was caused by an embolus. He felt that there was also a possibility that there had been a cyst which had bled. Overall the defect takes up about 15% of William's brain but looks even more dramatic on the scan.
William will not have any further investigations in the short term unless he deteriorates neurologically (and the opposite was happening today).

We were also visited by many members of the feeding clinic who came up to the ward today. William has been booked in several times. Last week the surgery took precedence over his feeding problems and today it seemed that his stroke would prevent him from going down and achieving any real benefits from the feeding clinic. It was a very welcome surprise to find that the various team members could come to the ward to assess him and offer advice and ongoing assessment.

Liza and I have felt much more positive today. We feel so supported and are focusing on the positives that we have seen today. In many ways it has been good that we only were given a definitive diagnosis yesterday after several days of uncertainty. After we saw the extent of damage, we had a shorter time until we started to seen signs of improvement.
We will still be praying for a full recovery.

Olivia has spent another day with Marea and seems to be enjoying it. She appears to be recovered from her viral illness and should be able to return to Ronald McDonald House soon. Tom stayed with his Aunty Sarah and Uncle Matt last night. He had a great time and went on a ferry ride today with his cousin, Lachlan. Thomas is back with us tonight. It is such a joy having the other kids around as well, even though it divides up our time. Family are so important to us. It has been wonderful how our family have been around to help us whenever we need it.

Stroke

William was confirmed to have had a significant stroke today.
Clinically, he was not much different from the past couple of days when I saw him this morning. He was still having seizures this morning, either involving his jaw or his right arm and hand. He was still irritable but much more sleepy than previously.
Liza had to take Olivia to Marea's this morning as her cough was getting worse and she had a touch of the gastro bug. I minded Tom at Ronald McDonald House until Bob and Ros arrived to look after him.
At 1:30pm William was finally taken to radiology for a CT scan of his brain. I was given a lead gown and allowed to stand by the scanner. While this was nice to be close to my son, I desperately wanted to see the images as they came up on the screen. The radiographer would tell me nothing but assured me that the preliminary report would be phoned through to the ICU soon. After getting back I waited for about half an hour (although it felt like a lot longer) before the intensivist came to tell me there had been a significant are of damage. He was explaining things at a very basic level to me and it was all just words – I needed details.
I asked to see the films and it was when I was looking at the CT images on the screen that it really hit me. My little boy had had a stroke. There was not a great deal of swelling but there was a large portion of the left frontal lobe that had clearly showed tissue infarction.
It seems likely that a clot has formed somewhere, possibly in the heart or on some of the healing vessel joins, and has then dislodged and floated on in the blood stream. As the floating clot (or embolus) travels the arteries divide and become smaller until eventually it reaches a spot that is too tight for it to travel any further and there it lodges. In William's case this was a branch of his left internal carotid artery and the blockage stopped oxygen and nutrition getting to the front part of his brain on the left hand side.
We are devastated.
We have heard that he may have no noticeable long term effects from this – that he will learn to talk and walk. It is such a big thing for us to accept and of course after all that has happened to William we feel that it is just not fair.
William has also developed some diarrhoea which has been getting worse over the last couple of days and he also had some nasal congestion.
We moved off the intensive care unit to the cardiac unit on the Edgar Stephen Ward. We had to move places a few times there as they wanted us in an isolation room.

We have had our cries and are both moving into that numb stage again.
It is just so hard when things are tough and then they get so much worse.

Electrical Activity

William has had several more seizures today. He remains quite a bit more irritable than usual. His sucking remains poor and even though he seemed to suck on a dummy for a couple of minutes this afternoon, it was not properly co-ordinated. He frequently got upset and looked in pain. Overall, however, he may have been slightly less irritable then yesterday.
He was lined up for a CT scan of his head but he started having irregular heart beats and ended up in a rhythm called bigeminy. An abnormal beat (in William's case not producing any output) is alternated with a normal beat. His blood pressure dropped and so he had another intravenous line put in. He had a magnesium infusion but all his other electrolytes were ok. He was also started on a medication called sildenafil today – this is to reduce the pressure of the blood flow in his lungs which should reduce the pressure in his head as well.
The consultants are trying to convey an positive outlook so we will try to look toward a positive future. We are of course concerned though. It is hard not seeing our little boy recover the way we had hoped over the last few days.
Tonight he remains in intensive care but hopefully before long he will be unequivocally too good to stay there any longer.

Two steps forward, one back

William has been extremely unsettled most of yesterday and all of today. He has been fitfully sleeping then waking and screaming followed by a grunting cry. He stopped sucking even his dummy. He certainly had the appearance of a baby who was cerebrally irritated. We were told that most children do get a headache for a few days. The higher venous pressure causes that. William was significantly worse than usual though.
His discomfort from 'tubes' was minimised today when two chest drains, his catheter and his arterial line were all removed.
Last night he had some twitching which may have been seizure activity. He was seen by the neurology team today and started on phenobarbitone, an anti-epilepsy medication. He actually started to improve after the first dose and at about 5:30 pm he stopped crying and started just looking at us. It was wonderful to see him actually recognise us again.
Whilst he has not had specific tests, Steve Cooper feels that he might have had a small clot lodge in his brain and cause some damage. We of course will not know what is going on until more imaging can be done. Hopefully there will be no long term damage but we will have to wait and see.
William remains on the paediatric intensive care unit tonight and we will wait to see how things progress before we make it onto the ward.

On a brighter note, I attended a launch of Heartkids Australia today. I spoke about William and his journey so far. It was a a great launch but fairly emotional as well. It was great to be able to contribute though.

An unsettled day

William was very unsettled today. It could be that he was weaning off his pain killers. It could be that he had a headache. It could have been that he was hungry (although he wouldn't suck for us again). It could just be that he likes to give his parents grief.
He spent a lot of today crying and desaturating. His oxygen saturations were quite low this morning although they tended to come up when he was sedated a bit.
He had his atrial line out today leaving only two chest drains, an arterial line, a peripheral venous line, oxygen, a urinary catheter and a nasogastric tube attached to him. He should have his chest drains removed tomorrow morning and may even be able to go to the ward tomorrow depending on how he goes. We are hanging out for more cuddles and that is going to be a whole lot easier with less tubes.

No problems

This morning as I arrived in PICU to see William, the nurses explained that he became quite unsettled and that they had to give him a bottle. We were so excited! This was the first time that William had taken anything by mouth for about a month and a half.
He was unsettled on and off today. It was likely that he had a bit of a headache as the veins in the upper body, including his head, become somewhat engorged for a while after this operation. He is still a bit puffy around the face.
He was to have his atrial line out today. An atrial line is essentially a tube which in William's case has three other tubes inside it. It is placed directly through the wall of the upper part if the heart. Taking a tube like this out leaves some risk of bleeding directly from the heart so before anything happens, the cardiothoracic surgeons have to be out of theatre and ready to open him up if he does have too much bleeding. Unfortunately they were caught up with other patients and so we couldn't remove the atrial line or the drains in his chest either.
Still, William is still pretty happy and I even got a quick nurse yesterday! Everyone is happy with how he is doing and none more than us!

Extubation

William did well today with his new circulation. He started to wake up a bit this morning and he had his endotracheal tube (the tube attached to a ventilator) removed just before midday today. He looks so much better than last time with only two chest drains and an atrial line going into his lower chest. He still has a catheter in his bladder and his nasogastric tube as well as a venous cannula in each foot and an arterial line in his wrist. He is still needing a bit of oxygen but is now saturating at about 75-85%. (He was in the 60s before his operation) This means that he is much pinker and is no longer our little boy blue! He started on some nasogastric feeds today as well. He is only allowed a tiny amount at the moment so he does not retain too much fluid but this will increase over the next few days. On the plus side, he hasn't vomited at all!
So far, so good! We are just so happy to see our little boy recovering.

The Bidirectional Glenn Shunt

Westmead.
At half past six we changed William and drunk in his smiles and babbling. It was very hard to take him from Ronald McDonald House (where we stayed last night) to the hospital for his next operation. At seven this morning I carried our little boy to day surgery where his many details were confirmed with me, before a nursing admission was done. We had another anaesthetic consult and William was deemed fit for surgery even despite his recent cold.
I was able to carry him into the theatre complex and had to leave him at about eight o'clock. I spoke with Dr Chard before he went into surgery. I went to pick up a page from ICU before returning to Liza and Olivia for breakfast.
We busied ourselves this morning to keep our minds off the operation. Bob and Ros arrived at about 11:30am and we sat down for morning tea. We were visited by three of the Parramatta first grade rugby league players. They had to introduce themselves – we were not up on our football players.
We were paged back to the intensive care unit again at about 12:30pm. At about one, Dr Chard came around to talk to us. He told us they had trouble getting in some of the lines which delayed the start of the operation. There were no other major problems and he was very happy with the whole outcome.
We had to wait for over an hour later before we could see him. That was a tense time as our minds went straight to possible complications. Eventually Liza rang to ask if there were any problems and were asked through soon after. They were still getting his lines and pumps and monitoring in order but there he was! He was actually quite plethoric and pink. In fact his face was quite red and he looked like an Englishman getting too much sun.
Marea and Tom came over later in the afternoon and we had a short but very boisterous time with both Olivia and Thomas back together again.
William more or less behaved himself until he had a bleed into his lungs in the early evening. It settled quickly and needed no specific treatment though and before long Liza was able to give him a sponge bath under the careful watch of one of his favourite nurses, Tiffany. It was quite a relief to see that she was looking after him. She had actually seen his name and requested to care for William.
Whilst we still have a long way to go, we are so happy that another major hurdle is today getting further behind us.

A busy week

Commitments to do a locum at Charlotte Pass took Olivia and I to the snow this year. Despite a lot of juggling child minding and working, we did have a wonderful week. Liza and the boys went to Sydney and stayed with Marea. On Sunday before that and only hours after I had left, William pulled out his nasogastric tube and Liza ended up at hospital to get it replaced. She took William to Westmead for the pre-op work up on Tuesday.
On Wednesday night at 10:00 pm William pulled out his tube again. Despite several attempts by both Liza and a good friend and neighbour to relocate the tube, William ended up at Sutherland hospital. I got a phone call at 1:30am on Thursday after they measured his oxygen saturations and found them to be around 50%. Needless to say I had a pretty ordinary night worrying about him, even after Liza called back to say that they had returned to the high 60's.
On Friday, Liza was back into Westmead for a further check with an anaesthetist and with his cardiologist, Steve Cooper. He stayed stable and coped for the rest of the week even though he seemed to have a snuffly cold and a bit of a cough.
It was so good to get back to see them on the Sunday night.

Four Months Old

William is four months old today.
A week and a half ago we travelled to Sydney to catch up with Dr Steve Cooper, his cardiologist. Steve was happy with the cardiac function. The valves look good and the heart function is certainly looking ok at the moment. William's oxygen saturation levels have been dropping and now are in the low 70's at best. He has taken on much more of a blue tinge. This was what concerned the cardiologist the most.
William is growing out of his shunt. Now he is growing (4.270kg last weigh!) the shunt is relatively too small to carry the volume of blood required through to the lungs. The next step is to operate again and perform a bidirectional Glenn Shunt. This will divert all of the venous blood from the top half of his body directly into his lungs with out going through the heart. This puts less strain on the heart and makes him a little pinker.
Steve told us that this would be fairly close and that he would speak with the surgeon, Dr Richard Chard. We had an appointment booked for a feeding clinic on the 21st of August and Steve hoped Richard might see us when we came up for that.
It was not long before Richard's secretary contacted us as told us that things were organised for William that day. We were expecting a consultation but instead we found out that the surgery had been booked for that day! It did shock us a little.
So we are trying to prepare ourselves for the next stage.

We had hoped to be able to take William to the launch of Heartkids Australia, the umbrella organisation that will bring all of the state based Heartkids organisations together. This is on the Friday following his surgery but our little heartkid will just have to wait a bit longer for his first outing with this organisation.

William's non cardiac problems are giving us the most grief at the moment. He vomits several times most feeds and has a lot of reflux. Only occasionally when he is fast asleep can we get a full feed into him without him vomiting. He has totally refused all oral feeds for about a month and everything has to go down his nasogastric tube. He will need a gastroscope to look into his oesophagus and stomach and maybe even need an operation to tighten up the top of his stomach to reduce the reflux and vomiting. We still need to talk to a gastroenterologist before those decisions are made of course but are hopeful that if he stops refluxing and vomiting, we might be able to make headway on his oral feeding.
I read nursery rhymes to our other children and think about our Little Boy Blue...

"“Where is the boy who looks after the sheep?
He's under the haystack fast asleep.
Will you wake him? No not I,
For if I do he's sure to vomit."

Whilst the current time is stressful, with the impending surgery, his feeding problems and our lack of sleep, we are trying to keep good spirits and focus on the positives. Every smile melts us and makes us realise how lucky we really are.