Christopher’s Journey.

Temperature is down and the move to Rose War happened this afternoon. Unfortunately the ward is in very similar condition to the ones highlighted in The Advertiser. A good lick of paint, and some colour would definitely help, it lacks the modern upgrades of the NICU and HDU. Having said that the nurses are lovely and no matter how daggy Rose Ward looks, its one giant leap closer to home.

Met the Cranio-Facial Surgeon today and it looks like, all being equal, Christopher’s Lip will be fixed around 3-4 months of age, whilst the palate will be corrected around 6-8 months.

The move to Rose Ward has stalled, as Master Christopher spiked a temp of 38.8 degrees. It probably stems from the UTI that popped up on Saturday. So he will spend at least one more day in HDU and see how he goes. He is really doing quite well, he is totally unfazed by everything and such a cool little individual.

Christopher has moved to Bay 12 (from Bay 7) in the HDU. He now has a room with a view of Adelaide CBD. Tough gig, but somebody has got to do it. The nurse on today was saying what a delightful baby he was (as you can imagine, my heart swelled to bursting point with pride). I am not sure how Christopher does it (must be in the genes), but he has managed to win over every single person that has either met him or looked after him. Bring on Puberty, I will be driving the girls off with a stick! But in all seriousness, he is a very good kid, who rarely cries or grizzles, and is quite happy to look you dead in the eye, whilst you smile at or talk to him.

Today Christopher is 2 months old. I can’t get over how quick its gone. Unfortunately Christopher has developed a Urinary Infection, so is on antibiotics until that clears up. Apart from that he has been very calm and casual (bit like his mum ) about it all. He is still in HDU, but is due to be moved to Rose Ward on Monday. We had a tour, so it won’t be so foreign when we get there. Hopefully he won’t be there too long and will soon be home.

“Once every 600 years comes the rarest and luckiest year in Chinese culture - the year of the Golden Pig. Legend promises that babies born in the year of the Golden Pig will live carefree, wealthy, straightforward and honest lives.”

I was told by my friend Felicia today that it is the Year of the Golden Pig, in the Chinese Calendar. That’s got to be good for Christopher to be born into great luck and good fortune

Considering some of the milestones and attention seeking feats, that Christopher has accomplished in the last week, today was reasonably normal. We are likely to be moving to Rose Ward on Monday (though this may become over the weekend if the HDU gets busy). So that is another step closer to home. Fingers crossed he doesn’t catch a virus while he’s there, as it would seriously put him behind the 8-ball. Then again, cross that bridge if we come to it

Christopher decided that the Dr’s weren’t paying him enough attention and pulled out his Gastrostomy Tube! The nurses discovered Christopher and his GT at opposite ends of the bed. Unfortunately, no-one knows how long it was out for and the hole had closed slightly, so they had a fun job of trying to get the right sized tube back in. An ultrasound showed that it had been replaced in the right spot. Phew!! He also had a renal ultrasound to check on his kidney, but we are still waiting for the results to come in for that.

Well the big move happened today. At 11.30am, Christopher was moved to the High Dependency Unit (HDU) which is situated in PICU (Paediatric Intensive Care Unit). He is now in a real hospital cot, rather than the neo-natal cot, and he is absolutely lost in it, but he does look very cute in it. Christopher seems to have one over all the nurses in the HDU already and he hasn’t even been there for 24 hours yet! Our Paediatrician Dr P.M., is lovely but we will miss our Neonatologist, Dr C.A.

It looks like the move to HDU, will happen tomorrow. It didn’t happen today as there was not enough nursing staff - though there is plenty of beds!

Christopher had his first bath today. He has little top and tail cleans of a night time, but this was the first time he has been “dunked” in water I thought that he wouldn’t like it, but he loved it! He was so content to be swished gently in the water, that he got cross when we took him out.

All going brilliantly with Christopher today. He is happy and content. It looks like we are moving to the High Dependency Unit (HDU) on the paediatric side of the hospital. This will probably happen tomorrow. The HDU is once step below ICU but one step higher than Rose Ward. The Dr’s want him to go to HDU for a few reasons.
1/ Christopher is stable enough to not require Intensive Care.
2/ Rose Ward has no free beds as it is winter and there are a lot of kids in there with respiratory (bronchitis/flu etc) problems and we don’t want Chris to catch a bug that might send him backwards.
3/ HDU will allow the paediatric side to get to know him. Especially seeing as we are likely to be in and out of the hospital frequently over the next few years. This also means we can learn the basics about looking after Christopher’s various extra needs.
This is a positive step and we are very pleased that Chris is moving forward and closer to home. The Neonatologist also said that Christopher could be home within 4 weeks, all things being equal. Yippee
Our little man was very awake for about an hour before we left, and I was talking to him and giving him kisses on his hands and making silly noises (as you do :p ) and I received my first reaction smile from Christopher. His eyes lit up and he had a huge grin on his face and the nurses said “look at Chris, he is really enjoying that” I reckon he was very close to giving me a little laugh. Gee I love this kid!!!

A very unhappy little boy greeted Greg and I, when we went to see our little man. He was leaking urine again from the area that the Supra-Pubic Catheter was, and he once again was producing low urine measures. He was upset and had a big spew, which the nurse suctioned  up and also a quick suction in his mouth to make sure he had nothing sitting in the back of his throat ready to breathe in (been there done that, don’t want to go back). Still very upset and not being able to be calmed down with cuddles, the surgery registrar was paged and Christopher had another urinary catheter inserted. In the space of an hour he had pee’d out 50mls of wee! No wonder he was upset, that must have been so very uncomfortable.

Weight - 2750grams

Length - 46.5cm

HC - 32cm

Christopher is “squeaking” when he breathes. A by-product of the ventilation tube. Chris had a nebuliser with adrenalin in it to try and help, but it only worked for about an hour, so the Dr’s gave him some steroids to help open up his airways around his vocal cords. A nasty side effect of the steroids (as you may know) is a bad temper. Oh boy! did my kid have a temper today!! He was crying and carrying on and nothing would calm him down, not even cuddles with his Dad AND Mum (usually this is a winner) had the required effect. It is quite distressing to see your kid upset and angry, but being unable to make it all better. Finally he calmed down and we got him off to sleep. Christopher also had his Supra-Pubic Catheter removed and he had to have the balloon in his Gastrostomy re-inflated as it was leaking slightly when being fed. He also had a fever of 38.2 degrees at about 4pm, the poor little bugger felt so hot, a dose of Panadol and some cool cloths under his arms and on his noggin, brought his temp down to a more respectable 36.8 degrees about an hour later. We think that he may have a bladder or kidney infection (most likely from the catheters), so antibiotics have been started. Hopefully, this will hit that bug on the head! He still has the long line in his head, the Dr’s are a bit hesitant to remove it (as Chris has inherited his Mum’s veins - they run away at the sight of a needle), in case he decides to do something silly again and gets sick or need another op.