Quick recoveries

William has been doing exceptionally well. He started having clear fluids (gastrolyte) on Saturday and on Sunday he started back onto formula as a continuous feed. He was pretty uncomfortable for the first twelve hours but only needed oral pain relief for the next 24 hours after that.
William has been the happiest little boy today. He has had smiles for everyone and has just loved playing with his toys and having a few cuddles from his parents as well. There have been a few things to sort out today. He was seen by the cardiac team, the gastro team and the gastrostomy clinical nurse consultant this morning. If all continues to go to plan we should be home tomorrow!

The PEG

Friday 16 February 2007
This morning William had his last nasogastric feed.
We were admitted to the Prince of Wales Private Hospital on Thursday afternoon and caught up with Ruben Jackson. William had his evening feeds and finished his overnight feed at seven this morning. He vomited his tube out before midday and got to keep it out for good!
It was really very interesting to be staying at the Prince Of Wales campus where I spent my internship and residency. It was here that I had worked with Ruben and with Guy Henry, the paediatric surgeon involved in the case. I spent a good while catching up with Harry Koumakellis, the anaesthetist. Harry and I both started our internship here fifteen years ago.
At about 3:45pm little William was put to sleep and he had his PEG inserted. While we waited he had a gastroscope and the oesophagus, stomach and duodenum was inspected. A tube was passed down into his stomach and out through the tract made from his stomach to his skin. We were of course relieved to see Ruben after the procedure and hear that everything went very well.
William woke up a bit irritated – he really is not used to such a short anaesthetic and intubation! He was a bit uncomfortable but once he was given some good pain relief, his exhaustion kicked in and he got a few decent stretches of sleep.

Surgery Cancelled

We were to be in Sydney by now preparing for the insertion of William's PEG tube. Unfortunately the list was cancelled by the hospital due to bed pressure. It is something that we were aware could always happen and really it is more of an inconvenience than a big health concern. We are hoping that with the changes in his feeding, he may take more orally and we might be able to grow him a bit faster.
There is also the huge benefit of not having to replace his NG tube every second day!

With luck, we will be having the procedure next Friday.

January

January started with a beach holiday for our family. It was a break that we all really needed. Although we had all spent plenty of time away from home and work in 2006, we had not had a family holiday where we could try to unwind a bit.
We stayed at Vincentia on Jervis Bay and my sister Emma and her family also came down to stay. We spent a week there and loved it! Olivia and Thomas played with their cousins, Jordan and James. Liza and I took life pretty easy. William enjoyed it too! One day when Liza had the kids out to see a movie, William seemed to be in a good mood and I managed to spoon almost a quarter of a jar of baby food into his mouth. He was not exactly eating but certainly he was able to be distracted enough so that he didn't refuse the food going into his mouth. Since then he has had the odd day when he will take a couple of teaspoons but generally he is still refusing most of his food.

William has finally reached the stage of sitting by himself. He is a way off crawling yet, or even pulling himself up but every little milestone is so welcome! His dexterity is also improving and thankfully we are still seeing no weakness or asymmetry that might be attributed to the stroke. William is great at grabbing his dummy and getting it into his mouth - at least he does not have so much of an oral aversion to reject that!
Last Thursday we had word that William would be having his PEG tube put in in early February. We head up to the Sydney Children's Hospital at Randwick next Tuesday for surgery on Wednesday. We are being cautiously optimistic. Of course we realise that he may still continue to vomit as much as always but really hope and pray that removing the tube from his nose and back of his throat will make him feel better. William has reached the age where he often pulls at his tube and has managed to pull it out daily sometimes. On some occasions our over-the-top taping of the tube remains intact but he manages to get a little finger hold on the tube as it goes into his nose and still pulls it out to leave it hanging.