NYE 2006

With bit of luck, we have just seen William's last vomit for the year (although with a few minutes to go you never can tell)
The Christmas period has been lovely - peaceful and full of family time. William is getting more adept at pulling out his tube.
It has been an incredible year and words can not do it justice. The lows have been pretty low by all standards but by contrast the highs have seemed so wonderful. We really appreciate what a blessing all of our children are and especially give thanks for William's life.
To all following William's story - Happy New Year! Here's to a fresh year of hope with the potential for all manner of good things!

Home again

It is wonderful having a short admission and getting home so quickly. William was discharged from Sutherland hospital yesterday. We drove back down and dropped in at mum and dad's place so that we could meet our new niece. My sister, Sarah, gave birth to the beautiful Molly Rose Jeffery on Saturday evening just before 11pm (as we were being seen at the emergency department). William now has a cousin smaller than him!
William has improved considerably. He is still vomiting (a bit more than usual) but the temperatures have settled and he is back to his happy self. We are still not sure when the PEG can be inserted. It was to be today but of course it was cancelled due to his infection.

Infection

On Thursday, Liza thought William was not as well as normal and had him checked out. There was nothing too drastic though and he seemed fine. He had a sleep over at Pos and Pa's (grandparents) house on Friday night and seemed a little hot at times. On Saturday he had a fever and was really not a happy boy. He was certainly vomiting more than usual (and that's saying something!)
Although it went away with paracetamol, it did keep returning.
We had travelled to Cronulla that evening as we had a combined birthday party for Liza's mum and uncle with a Christmas get together scheduled for the next day. William was quite hot again when we arrived in Sydney so we took him to the emergency department at Sutherland Hospital to get him checked out. I thought that given his recurrent fevers, we might get some antibiotics prescribed to cover him for the risk of getting infection in his heart. I thought that the sooner we could get the antibiotics and go home, the better it would be for all of us.

Unfortunately sleep was not going to be on the agenda that night. Because there was no definite focus for the infection, the emergency doctor took blood for culture and for a full blood count. William's White Cell count was 19 and his CRP was 34 – basically at looked like he was fighting a bacterial infection somewhere. His chest x-ray did not show anything too unusual and he was given an injectable antibiotic and admitted to the ward. Liza went back to her mums, brought back dome overnight stuff for William and I and then eventually got back about 3am. I was eventually able to lie down and grab an hour and a half of broken sleep at about 4:30am.

William had a reasonable uneventful day. He certainly was not his usual self but there were moments (usually after paracetamol) when he was giggling and gooing like normal. We will see what today brings – possibly more tests but hopefully discharge.

Things are moving

Things are moving
The transpyloric tube only succeeded in making William vomit gastric juices rather than milk and so I pulled it back to his stomach. We got the call from Dr Reuben Jackson that William was scheduled for insertion of the PEG (Percutaneous endoscopic gastrostomy) on the coming Wednesday and that we were to be admitted on Tuesday night.
Whilst it is a huge rush and we are well aware that any surgery poses a risk, we are at least pleased that this procedure may be able to offer William some increased comfort. Even if it does not stop his vomiting, he will not need the nasogastric tube, will not have the irritation in his nose, throat and oesophagus and we will be able to give some medications that currently block his fine NG tube (like omeprazole granules).
The other exciting thing this week was the loan of a whiz bang fancy portable kangaroo feeding pump. My cousin, Gina's little boy required tube feeding and his parents bought a portable pump from e-bay. Mac now has a PEG and is able to have most of his food just gravity fed straight into his stomach. Being able to use this pump for William will certainly free things up a bit – Now he can vomit anywhere!

Trial and error in the vomiting game

William has been having a pretty rough month as far as his feeding goes. He has been vomiting more and more and has been refusing oral feeds totally. There was a bright spot a few weeks ago at a feeding clinic review when William actually took some custard without vomiting.

Despite allergy testing and further changes in William's feeding routines, we have been unable to rein in the ongoing vomiting. We tried concentrating his feeds a bit so we could give him less volume but were advised to give it to him in six boluses throughout the day. This didn't work and so we went back to giving a portion of his feeds a slow overnight trickle.

The next thing we tried was passing a transpyloric tube - that is when the tip of the feeding tube goes right through the stomach and sits in the duodenum. The idea is that if the milk is not sitting in and distending the stomach, it is less likely to come up.

William managed to still vomit up copious amounts of gastric juices. The problem with that is that now the gastric juices he is vomiting are undiluted by milk and so are much more irritative to his skin. One ear which got quite wet several times is quite inflamed. Liza has told me that would be fine if he had big ears but really, his ears are pretty nice and don't need to be eaten away!

It looks like William will be getting an operation for Christmas.

The next step is to create a connection directly from his skin to his stomach. This will remove the need to have a tube down his nose and stop the irritation he may have at the back of his throat and in his oesophagus. Hopefully this will give William a bit of relief... I'll keep you posted.

Feeding and vomiting aside, William is growing into a gorgeous little boy. He is now up to 6½ kilograms and loves to play with his parents and his siblings. He is moving everything equally and we certainly can't notice any obvious effects from his stroke. He is sitting well with support but not quite ready to sit all by himself. He is capable of giving his brother or sister's hair a good tug if they get close enough though! It is wonderful to appreciate all this normal baby stuff.