My name is Ben, and I am 5 weeks old today. I have been quite sick since I was born, and I have been in 3 different hospitals since then. I know you are very busy at the moment, but I’ll try and explain things to you, so that maybe you can understand what is going on.
I am hanging in there, a few more ups and downs in the last week. I have been moved back to Temple Street Hospital for about a week now. The transport went well, so that was good, and I settled nicely into my new bed. It is a big boy bed! I am not in my own room any more, I am in the middle part of the ICU. It is nice there, I can see everybody around me, and I know that everyone that is around sees me and can come look after me when I need to be looked after.
Thursday was a good day. I was all settled in, and all my numbers were good. When I say my numbers, I mean my blood pressure (BP), sats (oxygen saturation in my blood), pee output, dialysis output (PD), blood gases. All in all, all the numbers were good. That meant I was able to just have a mooch, have a look around. Mum and Dad were there, big smiles on their faces. It was nice to see them smile. I don’t get to see them smile very often (I sleep a lot, or if I not asleep I am under sedation), and I don’t think they get much of Â a chance to smile lately. I saw Dad take a picture of me when I was looking around, I think he likes to take pictures.
That was on Thursday. I’m afraid that things have not really gone according to plan since then. On Friday, I had built up a lot of fluid again, and it was all around my head, and some on my body. That is not a good thing. Also, I am not comfortable in some way that I cannot describe. Being so uncomfortable means that I get upset, and I wriggle around a lot. When I do that, theÂ pulmonary hypertension flares upÂ and my oxygen saturation drops off. When that happens, I get even more uncomfortable – I heard the nurses say that I am ‘distressed’. Sometimes, I can get an extra boost of oxygen from the ventilator (that’s the tube going into my nose), and that helps get my saturation back to normal. At times though, it can take a couple of boosts like that to get me sorted. Other times, that does not work either, and then they have to bag me. That is when I get a higher concentration of oxygen at a different pressure and is easier for my lungs to get what they need.
When I get myself worked up though, even the bagging does not work all that well, and they have to give me some sedatives and/or morphine to get me to settle down. It is not nice when they have to do that. What happens then though is that my blood pressure drops off a lot, and that means that my kidneys don’t get sufficiently perfused. That means that my kidneys don’t work as they should and I don’t pee as much as I should. Toxins build up around my kidneys, and fluid builds up around my body. When the fluid builds up, that puts pressure on my lungs, and they are not able to inflate properly and collapse.
So as you can see, it is a complicated balancing act for the nurses and doctors to get everything right for me to feel better, but I know they are trying very hard.
What I described above is what happens to me nearly everyday, sometimes a couple of times a day. It makes me sad, and I know that it makes Mum and Dad sad too. As a result of all this, I have had to go back onto some drugs I was on before to control my blood pressure, which in turn will help me to stay properly perfused (I think that means that my blood gets to all the places it should).
Granddad Tommy and Auntie Sophie were up to see Mum and Dad on Saturday. I have a lovely horse teddy waiting for me at home that I got from my Auntie Sophie. I wish Dad would stop forgetting to bring it in for me to see, I’d love to see it. Granddad Tommy brought me a lovely book of fairy tales that Â I can’t wait to see the pictures in, and maybe even for Granddad to read me a story from it, that would be great.
On Sunday, it looked like I needed to go back to Crumlin hospital, back where I was last week. The thought was that I needed to have some of the holes in my heart closed. That was a scary thought, I’m too little to have another operation like that. The good news though is that my cardiologist said I did not need to have the operation after she saw me on Monday, we all sighed a big sigh of relief at that. She also said that my heart was not the problem with everything else that was going on. It was having to work harder than normal, but other than that, there was nothing the matter with it, and that was a bit of good news. The holes in my heart have in fact gotten smaller since I was born, and that they would not require surgery, ever!
So we are now 4 days before Christmas. I’m not too sure what it is all about yet, but what I do know is that I will still be in my bed when it happens. Mum and Dad will be here with me, and that will be nice.
Dear Santa, I wish for one thing only, well maybe two. My wish is that I will be well enough for Mum to be able to hold me in her arms. That would make me so happy, and I think that it would also make Mum happy to. The second wish is that you can help to make me better so that I can home to Mum and Dad.
Time for me to go, but before I do, I want to wish you and all your friends and family a wonderful Christmas, and that you enjoy spending quality time with them all. I also want to wish all my friends and the nurses and doctors who have looked after me in the Rotunda, Crumlin and Temple Street a very happy Christmas.
Thanks for reading Santa, I hope to see you soon.
p.s. I am in the ICU on the third floor of Temple Street Children’s hospital