Back to Rose Ward… again

Well Christopher got shipped back to Rose Ward this morning. He is still on his nasal specs, but got down to between .3 and .75 litres of O2, which is a massive improvement from Sunday. He was in good spirits when I arrived this afternoon, but ended up a little grizzly after a long afternoon nap. So he must be feeling better!!

Pictures

Just some pictures of Christopher when he was in PICU last night.

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Much better, thanks…

Christopher is doing much better, babbling and (kind of) smiling 🙂  He is down to 1.5 litres of O2 and back on the nasal specs, instead of the mask (which he HATES). Christopher once again has a UTI , with Pseudomonas being the culprit. This is the 4th time Chris has had a Pseudomonas infection. He was going to be transferred back to Rose today, but they were overflowing, so the Doctors figured it wouldn’t hurt for Chris to be in PICU for one more night.

Another Holiday in PICU

Christopher decided to stop breathing, not once but twice, this morning in Rose Ward. So they took him up to PICU to keep a closer eye on him. they sucked out a huge plug of mucus from his throat, which probably had a lot to do with it. He is currently on 8 litres of O2 (he was only on .25 litres when he came back after his pneumonia). He was looking pretty average, when I went to visit today, but seemed much brighter when I left. He was babbling to Eeyore and Pooh and seemed reasonably comfortable.  Hopefully this is not another bout of pnuemonia, but just a temporary setback. I told Christopher, if he wants a change of scenery or a real holiday, he needs to get better and come home!

Christopher’s First Play Date

There is another long-termer in Rose Ward, a lovely little boy named Angus. He is just 12 days older than Christopher, but he is almost 3 kgs heavier and 10cm longer. I was talking to one of the nurses and said that it is a shame that we can’t get a photo of the 2 boys together. Never say Never!

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Another PIC Line

Christopher seems to be going around in circles. He does so well and is really healthy and then *BAM* he gets a UTI and an impressive temperature. Then he gets better and then it starts over again. Another Temperature etc. So I received a call this morning asking for me to come to sign a consent for another PIC line to be inserted today at Midday.

I went up to Radiology with Christopher, took him into the room and stayed with him while they put the anaesthetic gas (mask) over his little face. Poor bubba, fought so hard against the gas, punching and screaming. It took a good 30 seconds until the gas took over. I can’t believe the fight Christopher put up, it was like he knew exactly what was coming.

A Family Portrait

We haven’t had a family portrait for a while, so I got Nurse Meredith to take a photo of the 3 of us. Chris is doing really well since having his tube lowered and seems to be happier, though he did spew on Greg tonight and I had to suck out his mouth, but I think it was that Chris coughed up some gunk from his lungs and it got caught in his throat making him gag.  Oh well, better on Daddy than me 😀

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PIC Line out plus correction

The PIC line was removed today and a new one will go in when Christopher has his lip repaired.

Correction: the tube to help Christopher manage his feeds better, is not a gastrojejunostomy tube, but a Transpyloric tube, its still in the same place as described before, but it has a different name!

Pictures

Lip Repair Deferred

Christopher is once again, re-writing his story and failing to mention his plans to us!

He was due to have his lip repaired tomorrow afternoon, but with his GERD, he has been continually “micro-aspirating” his feeds, which have disrupted his breathing.

The Anaesthetic Doctor is not comfortable with putting Chris under a General Anaesthetic, with his breathing problems, especially seeing as he is already a high risk because of his cardiac problems.

So the gastrostomy tube has been pushed further down, past his pyloric valve (by-passing his tummy) so his feeds go directly into his small bowel, and hopefully reduce the reflux and aspirations. Hopefully, with this done crossfingers.gif he will be happier and his breathing will improve and we can get his lip fixed and get him home. Unfortunately this also means that Christopher coming home is also delayed by 2 more weeks.

His PIC line will also be removed tomorrow and a new one will be inserted the just before his lip repair, but under the one anaesthetic.

A new Tube

Christopher has to have a gastrojejunostomy (G-J Tube) tube put into his tummy to replace the gastrostomy tube. A G-J tube by-passes the stomach and goes through the pyloric valve, directly into the small bowel. The reason for this is because Christopher has bad gastroesophageal reflux disease (GERD) , which upsets him (think heartburn/ indigestion) and lowers his oxygen saturations. The only other way to get past this is to give Christopher IV Fluids in replacement, but then he will not continue to grow.

Christopher’s PIC line has collapsed and he will have this replaced when he has his lip repair to limit the amount of anaesthetics. If you remember, Chris had the PIC line inserted as he has shy veins and needed to have IV access for the Vesticostomy operation and it was supposed to stay viable until his lip operation tomorrow. My poor kid. He always has to write his own story!!

Video of Christopher Talking and meeting a new Toy.

You have to excuse Christopher’s squeaky breathing, he has had it since his Pneumonia.

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Get the Flash Player to see the wordTube Media Player.

Chest X-Ray

Christopher had another Chest X-Ray today as when they changed the dressing on his PIC (long) line, it moved slightly and they needed to make sure that it was still in the correct place, internally. I went with Christopher to Radiology and they sat him in this little box to take a front on X-Ray and a side on X-Ray. He looked cute looking at himself in the mirror in the box. He looked curious at the little face staring back at him. Christopher was very good and not a peep out of him, while the whole process went on. Unfortunately I was unable to take a photo as I was holding him upright, so he didn’t topple over.

He is also on thickened feeds, which will, hopefully reduce or cease the reflux that he gets.

Babbling and Books

Christopher had a good day today – He read his new book on colours and he got to play on the floor for the first time. Lying on his tummy, he pushed himself up with his little arms and did a great job of keeping his head up. Although he was only on the ground about 6 mins, it must of really tuckered him out as he slept solidly for the next 2 hours!!

Christopher also had his casts changed this afternoon. Chris babbled the whole time to the Physio, telling her about his day, it was very cute. I asked the physio how long he needed to have the casting done and she said 4-6 weeks and then he will wear removable splints, which will stay on for 22 hours a day for a few months, then it all depends on how Christopher’s feet respond to the splints in to see if he will also need surgery to lengthen his achilles at a later stage.

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Happy Father’s Day

It’s Greg’s first Father’s Day today, not that Christopher knew any different 🙂

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