Christopher’s Journey.

3 Months old today

Off CPAP and getting back to normal. Hopefully back in Rose Ward by Friday.

I was asked last week, when Christopher went back into HDU with his pneumonia, what I wanted for him.

In other words, do they make him ‘comfortable’ or do everything in their power to get him through.

I am f**ked off. This is the FOURTH time in the 3 months since Christopher has been born, that I have been asked this question!!!!!

I am upset that the Doctors would think that I would want an “out”.

Do they not understand that this is my kid? That I love him. That he has intelligence and is not going to be a vegetable. He has normal brain function and will go to a normal school. That he reacts, smiles and holds my fingers. I cuddle him and I feel the most overwhelming love for him and I can’t remember what my life was like without him.

This kid completes me. I feel like I have a purpose in life and that is Christopher.

His problems are physical and every one of them on an individual basis can and will be fixed. This will take time, I understand that, but that doesn’t mean that I want to be constantly asked about letting him go.

Why do they keep asking me this question? I am upset that they would think that a mother could let her child pass away, especially if there is a positive future and outcome for him.

I love my kid. End of story.

Thanks for reading.

Rant over.

Christopher was doing reasonably well today. He was quite awake and happy to have cuddles with both Greg and me. He is still on CPAP, but seems to be coping well with it.

Measurements:

Weight - 3800grams

Length - 49cm (approx.)

H/C - 34.5cm

Christopher has been put on to a Continuous Positive Airway Pressure (CPAP)  machine to help with his breathing, whilst he is trying to get rid of his chest infection. Poor Kid, it squishes his face, but at least he is happier than with just the normal O2 mask. He is certainly looking better and I am sure he is also feeling better.

Poor little Christopher has suspected Viral Pneumonia. He is struggling to breathe and we will be lucky if he manages to get better without being put on a ventilator. We will just have to hope like crazy that it doesn’t come to that. He is pretty miserable at the moment, but with luck he will start feeling better soon.  The Dr’s put in a nasopharyngeal tube to try and keep his airways open, but Christopher really didn’t take to it to kindly, so he is currently without his nasal specs and has an oxygen mask with humidified and warmed air with about 50% O2. He was fairly calm and was asleep when we left tonight, so with any luck when I go to see him tomorrow he will he ventilator free and happier.

Christopher was sent back to the PHDU (Paediatric High Dependency Unit) today, due to a chest infection. Poor little bugger is working really hard with his breathing, so the Dr’s figured it would be best for Christopher if he had more intense monitoring. Tests have ruled out RSV (bronchiolitis) and Influenza A & B. A couple more tests are still being done, but it looks like it may be “just” a virus. The drip in his head had to be replaced, again in his head and the poor little thing only has about 1/3 of his hair left on his head.

After having a drip put into a vein in his head (only place they could find a useable vein) yesterday, Christopher seems to be coping quite well with his UTI and feeling a lot better. The Dr’s have placed a modified drinking cup on his to stop him from knocking it, but the poor little bugger looks like he is wearing a party hat. He is so going to hate his 21st birthday party!! Unfortunately he isn’t weeing on his own as often as the Dr’s would like, so he is having intermittent catheterisation, four times a day. I learnt how to intermittently catheterise and did it for the first time today. Last week, I was adamant that I wouldn’t do that to my son, after seeing him get so upset on Friday.  But I came to realise, that I needed to learn how to do it and get over my fears and insecurities for Christopher’s sake.

I love this pic of my two boys (my big boy and my little boy)

The little fella had a bit of a fever (38.2 degrees) and hadn’t pee’d for a while. The Dr’s came and looked him over and decided to catheterise as his abdomen had become a little distended. When they did the wee came out like pus, thick and yellow. No wonder he was feeling crappy!! Christopher also gave us another couple of “Blue” scares. He turns blue and we have to up is O2 slightly. He also had a little cough (after his feed) and then stopped breathing and turned a very ugly shade of grey which scared the crap out of me, but I was really calm. No hysterics, just put him in his cot and gave him a gentle shake. We think it was a little reflux episode and he didn’t know which way to send the stuff in his throat. If nothing else, our little man is certainly going to keep us on our toes when he comes home.

Every time I changed Christopher’s nappy, he had done a wee!!! I am so excited for my little boy. You don’t think that weeing is that big of a deal, but when you have a catheter in your bladder for almost half of your life, it certainly is a big deal . Dr.P.M. also said that they are aiming for Chris’ discharge for the end of next week, all being equal. I get the O2 delivered on Tuesday and I have Kangaroo Pump (for overnight feeding) training on Monday. The Diabetes Educator came around to show me how to test Chris’ BSL and I have been drawing up and giving Chris is medications. So it seems to be all systems go. Yay

Christopher had his urinary catheter removed this morning at 6am to see how he would go without it. He pee’d by himself at 8.30am, which was fantastic! Unfortunately this didn’t continue through the day and he had to be catheterised at 1pm and then again at 8pm. The registrars will also come back at midnight to catheterise again. They are going to see how Christopher goes for the next 24-36 hours, and then his urologist, Dr H.B. will review what to do with Christopher. It will be one of 3 things: another permanent catheter; intermittent catheterisation or a vesticostomy.

Lisa (stomal therapist) advised me today, that Mr A.F. is concerned that the pull-through has moved. An MRI will be done in the next 10-12 months to confirm his suspicions and then Christopher will have his bottom refashioned.

Christopher, the little bugger decided to almost choke and turn blue on me! His sats went down to 44 and he gave me one hell of a fright! He had a small reflux episode and vomited a little of his feed and when it got to his throat, he didn’t know quite how to cope with it. But luckily we were able to sit Christopher up and he managed to swallow it and became a much more flattering colour.