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Yesterday William was gradually re-introduced to bolus feeding, initially on for half an hour then off for half an hour. This was gradually stretched out to two hours and today up to two and a half hours.
William developed some loose stools after re starting on milk. The ward could not afford to take any chances so before too long we were bundled in an isolation ward. It only took an hour or so before another patient was relocated into our little room for the same reason. It all seems to be ok now though.
This afternoon, Alison Kennedy, the gastrostomy nurse consultant came up and measured William for a button. This sits flush on his tummy and replaces the longer tube he had up until now. She inserted it for us and set us up with all the paraphernalia that comes with it. It is so much nicer than the old tube which used to drag as he bounced around on his bottom. This new button will not cramp his style now!
Last night Guy Henry did a ward round late after he finished surgery and suggested that we might be home soon. Suggesting today as a discharge date received a pretty positive response from us!
So here we are, back home safe and sound in Tapitallee, feeling very blessed to have our little boy so well and happy after this procedure and looking forward to the future as he continues to improve.

Burps (but no vomit!)

William continues to improve. Today he was started on formula and he seems to be tolerating it well. He has even been burping – something he never did before. Air used to only escape from his stomach through his mouth when it was accompanied by large amounts of vomit.
He is still requiring a fair bit of analgesia but seems to be gradually weaning off it. When he is comfortable he bounces around his bed on his bottom at a great rate of knots!
Hopefully tomorrow we will see more progress and sometime soon we may even get the 'D word' (discharge) mentioned!

Ward C2 South

It has been a day of gradual improvement for William today. Last night his pain was not controlled for quite long enough with the paracetamol and codeine that was charted. Gradually as the day has worn on he has improved and this afternoon we certainly had a few more smiles than we had seen for the past few days. This evening he is coping very well and seems much more comfortable.
The fluids going through the gastrostomy into his stomach were stopped last night because he started vomiting. It was restarted at midday at a miniscule rate of 5mL per hour and is being slowly increased every eight hours.
William is still a little puffy today but is gradually returning to his old self. In a few days time he will probably even smile for the camera!

Intensive Care

Our day started early this morning with a call from the intensive care unit. William was too awake to keep him ventilated and they were removing his endotracheal tube. This was great news! It was the beginning of a day of removing various tubes and wires but according to William, it was not necessarily going to happen in the order that was planned.

William became pretty irritable in the early hours of the morning and it became apparent that he had some urinary retention. He had to have a catheter inserted. That seemed to block and so was removed again later in the morning.
His arterial line stopped working just before 8am and was removed.
After the ICU round he had his central line removed. This was stitched into his internal jugular vein and young William was not happy about getting the sutures out. He had two cannulae in his feet to maintain access to his veins after the central line came out but when he was having his first cuddle he managed to dislodge and kick out both of these. William is not easy to get a line into so this was not a great thing.
While waiting for another cannula, William became increasingly distressed and started gagging on his nasogastric tube. Vomiting after this particular operation is a really bad thing so the staff were forced to remove the NG tube. (Boy he looked better after that was out!)
His cardiac monitoring leads were the last thing to go today before he was finally discharged from intensive care into Ward C2 South.

Steve Cooper visited us in intensive care briefly this morning. He had been around the previous evening when we had gone to dinner and had performed an echocardiogram. We were really pleased to hear and see how happy Dr Cooper was with William's heart function and valves.

Overall we had a very positive experience in intensive care. The nursing staff were extremely busy (the unit was extraordinarily full of complicated cases) but we were still so impressed with their care and their attitude. Shelly who was on day shift both today and yesterday when we arrived and Andrea who was looking after him overnight were both just fantastic!

Fundoplication

This morning I carried William up to the Sydney Children's Hospital from Ronald McDonald House at around 7am. We were admitted through the ambulatory care ward and as he was last on the list, we did sit around waiting for a while.
At around midday William was called to theatre and we took that walk one more time. Walking away from our child and leaving him to strangers (albeit extremely competent and caring ones!) is always hard and today was no different. We were told there would be not much change from four hours so we set off to fill in some time. We were able to visit my uncle Rod who was in Prince of Wales Private Hospital next door.
With a bit of shopping and a few coffees later we made our way back to the recovery waiting room. The first three and a half hours of waiting were much easier than the subsequent 30 minutes. When the total time we had been away ticked over that four hour mark our stress levels kept on rising. Eventually a theatre nurse on her way home recognised us and told us that he was just being taked to the intensive care unit, and she confirmed that he was fine.
What relief!
It had been difficult to get a central line in and in an attempt to find his femoral vein, his artery had accidently been found instead. He ended up with a jugular line, two peripheral lines and an arterial line. But he did behave himself through the operation and it was able to be done laparoscopically with out the need to open.
He has tried to wake up a few times and pull his tube out tonight but he will remain ventilated and sedated overnight.
We have been so happy with the care and the attitude of all the medical staff we have been in contact with today. They have been superb!
It has been an exhausting day and what we both need now is a good night's sleep.

Cancelled surgery (hasn't that happened before?)

Well, William's surgery which was scheduled for tomorrow has been cancelled. We got a call today just before 4pm to let us know that there were no beds in ICU and the surgery would be postponed. At this stage, we may be heading up to Sydney in two days time for surgery Thursday but we will just have to wait and see.

Liza and I were a little deflated at the news. We had been hoping that this procedure would really help William and every delay is a disappointment. Hopefully we will have better things to report on Thursday.