What a kid!

I have been pretty slack the last few days, with my Christopher updates. He is doing so well at the moment. He has been very serious since his lip repair, with just a few stolen smiles, which are really only half hearted (but maybe it just seems that way, because his face looks different).

Today, whilst I gave him a bath and he was splashing around, he not only flashed me a smile that would melt an iceberg, but he GIGGLED at me!!! It sounded a bit “Mutley” like, quite hoarse, but it was a definite giggle and it was very cute.

Christopher has this fantastic personality that expands each and every time I see him. I love to see him growing and developing and becoming a real little person of his own.

Introducing….

Christopher’s new lip! After all the will they won’t they have a bed in HDU yesterday, all went according to plan and Christopher had his Cleft Lip repaired and also had grommets inserted into his ears. The operation, from the time I kissed him goodbye in the operating theatre, to when he was brought to HDU was about 2 hours. I had a couple of tears when I saw him as he looked so beautiful with his perfect little nose and tiny mouth. I can’t wait to see his “new” smile 🙂

He has splints in his nostrils, which will stay in situ for about a week and will be taken out when the stitches are removed. Poor little boy, looks so sore and a is quite clingy.

This morning before the operation:

After the operation:

 

 

Fingers crossed..

Christopher’s lip repair is all dependant on there being an HDU bed available for him post-op. It is all a bit complicated, but he is due to have his operation at 12 midday, but it may be at 8.30am if another case gets postponed. So I will be at the hospital tomorrow by 7.30am to make sure I can sign the relevant consents. But it still may not happen. Confused yet???? here’s hoping it all works out for the best.

A couple of pics from today:

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Countdown

Well its not long until Christopher’s Lip repair on Tuesday. Christopher has been really well this last week (especially since coming back from PICU). He has been happy and less squeaky. He loves having the 2 hours a day without his splints. This is when I give him his bath and he gets to kick and move his legs around. Christopher has also had his Diazoxide (for his Hyper-Insulinism) reduced from 8mg to 6mg, so that is great, hopefully we will eventually be able to not need it at all. Then he will lose his massive mono-brow, an unfortunate side effect is excessive hair growth.

A bit unsettled

Poor Christopher was a little unsettled. He still has quite a bit of gunk in his lungs, so when he coughs, stuff gets stuck in his throat and he gags and sometimes vomits. This happened 4 or 5 times today. We needed to use suction to clear his mouth and throat. I wore at least two of the cough/gag/vomit episodes! Ugh!

Christopher’s trans-pyloric tube also dislodged this evening (third time to date) and instead of being 1cm of tube externally, there was about 20cm! So his feeds were once again ceased and he was placed back on the IV fluids only, until tomorrow, when they can replace the TPT in Radiology.  So that will be another adventure for Christopher this weekend. I really hope that this won’t change too many future plans for Christopher??

Playtime

It is really amazing to see how Christopher has been developing. Only last week he wouldn’t reach out and touch a toy, but today, he was lying and looking up at his toys hanging over is bed and he reached out a hand and touched him. He also smiled and chatted to the fish in his new picture book and occasionally reached out to touch the page.

Christopher was so close to laughing today. One of the nurses was talking and smiling at him and he gave her a HUGE smile and his breath caught as he tried to giggle. It was so cute to see and I felt my heart close to bursting point!

Christopher’s New Feet

Christopher had his fourth set of plasters removed today. The Orthopaedic Physio, was really happy with the way his feet have straightened out, so she graduated Christopher to splints. They are very cute and it looks like Chris is about to hit the slopes and go snow-boarding.

He will have to wear the splints for 22 hours a day and this will reduce by one hour each month, until Christopher only needs to wear them when he sleeps. These will be in place until he is approx. 4 years old. Hopefully this will be all he requires to fix his Talipes. If they do start to bend again, then Christopher will need an operation to lengthen his Achilles Tendon.
Before & During

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After & Snow Boarding!

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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!