Christopher’s Journey.

One final post on Christopher’s Journey.

We left Christopher last night about 8pm, after we had wrapped him up, tucked him in and kissed him goodnight.

Greg and I went to bed about 11pm and got a call about 12.15am, to let us know that Christopher had another turn and that he was taken up to PICU. To be honest, we thought that Christopher had done this sort of thing before, so we were not overly concerned or aware that it may be very serious.

He had been ventilated and when we arrived about 30 minutes later, they were still working on him. His O2 saturations were averaging about 20% and he was very blue. The doctors said to us that they believed that there was a blood clot in the BT shunt (inserted in Melbourne at 4 weeks old) in his heart. They gave him some medication to try and break up the clot, but it did not seem to work. His 02 sats then fell to about 9%. They gave him a dose of adrenalin, but this also didn’t work.

As the medications didn’t work and because he probably would of suffered terrible brain damage, we felt that Christopher was telling us that he didn’t have it in him to fight any more. Greg and I told the Doctors to stop treatment and let him go.

The doctors gave him some Morphine, so he wasn’t in any pain and Christopher died in my arms at about 3am with Greg by our side.

Christopher looked so very peaceful, no tapes, no tubes, just the gorgeous little boy that I brought into the world with such love and held him tight as he departed it, with that very same love.

Paul, Christopher’s fantastic paediatrician was close by and was crying when he gave us his apologies.

We had the opportunity to have some quiet time, just the three of us, in a lovely little room, where we got to say our private goodbyes to Christopher and be a family for one last time.

We took him back to his cot and laid him out and tucked him back in one last time. We gathered all his toys that were in his cot and then went to collect the rest of his belongings from Rose Ward. I think every single nurse down there was crying. Christopher had so much impact on so many peoples lives.

Its feels so very wrong to have your child go before you, but I feel more complete as a person, to have been able to be the mother to the most precious, inspiring, brave and beautiful angel, I have ever had the pleasure to meet, know and love.

This morning our little man had a battle he couldn’t win. He passed away in the early hours, in his Mummy’s arms and with his Daddy by his side. A peaceful ending to such a wonderful little boy.

Christopher, we love you very much and you brought us great joy and happiness.

We will never forget you.

Well, next week is our week! On Monday, Tuesday and Wednesday I will live in the hospital and look after Christopher as if we are at home, with no nurses as support. This will give me an idea of what will entail looking after Christopher. If this goes well and Christopher is still thriving, we will bring him home on the morning of Friday 19th October and he will be at home from Friday until Sunday and then discharged from the hospital.  We will then be a real family, and hopefully, our days at the hospital will be a memory.

There is really going to be a huge lifestyle curve, but I am confident that DH and I can cope with this.

Christopher had a really bad day. He was so cranky, every time he woke up he cried. Panadol didn’t seem to help and neither did making sure he had a clean nappy on.  Giving him cuddles (which is his most favourite pastime at the moment) didn’t calm him either. I think he may be teething, as he has a small little bump on his bottom gum, so this could be the cause of it. But it is very unusual for Christopher to be so restless and cranky. Hope he feels better and cheers up soon, can’t be much fun being in a bad mood all day

Well it was only temporary, whilst we changed the dressings, but here are a couple of pics of Christopher without any white tape on his face. His lip is healing beautifully.

Christopher decided that it would be a really good idea to pull out his TPT. So he spent most of the day in Radiology getting it repositioned. Poor little bugger was so tired when I got in, from his adventures. Unfortunately, we think that his tummy was upset by the repositioning and he had a couple of bile vomits, which meant that all the tape on his face has to be redone. He hates having his face re-taped and he gets himself into such a state. It is distressing to see, but you have to do it. Luckily it doesn’t take too long to calm him down.

Christopher’s feeds are now up to 25mls per hour 22 hours a day. He is working up to a 4 hour break per day, so we will have at least one less tube for a short time for when we get home!

Christopher’s Lip is healing up really nicely. The stitches are steadily dissolving and he is being left with a very thin, slightly pink line on his upper lip under his nose. The nose splints will have to stay in situ for at least 6 weeks and possibly up to 3 months. He has been doing really well in regards to not rubbing his nose and lip.

Although he has been quite crabby the last few days. Not sure why, but its possible that his teeth are moving under his gums, giving him some discomfort. Apart from that, we are in the ‘planning’ stages again, for Christopher to come home! More info as it comes.

Weight – 4300g
Length – 55cm
H/C – 37cm

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.

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:

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:

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.

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??

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 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

After & Snow Boarding!