Dear Santa

Dear Santa,

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  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, the pulmonary hypertension flares up 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  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.

Ben

p.s. I am in the ICU on the third floor of Temple Street Children’s hospital

 

 

 

 

 

 

13 Comments

  1. Ash

    ((((((((((hugs))))))))))

  2. Sam

    Merry Christmas to you and your parents, little Ben. Wishing you only a speedy recovery, and that you will find the warm arms of your parents really soon, petit ange! x

  3. Sophie

    My sweet Little Ben,
    I hope Santa gets your letter (you were right to tell him where you are situated so that he knows where to find you ;-) ). If I see him I’ll tell him to check his letterbox!!!
    I put up my tree the other day and thought of you as I was doing so, so it’s your tree that’s in my appartment.
    You are a brave little boy to be going through all this, and your parents too, and I’m so proud to be your Auntie. Oh I was really really happy to see your Dad and meet your Mum on Saturday, I liked her :-) and will have to remind your Dad to bring in the little horse teddy that I got you. I know it’s a bit big to put in your bed, but maybe your friends in the bed can take turns so that he can get to sit with you for a while ;-)
    I also want to thank all the doctors and nurses at Temple Street Hospital for taking such good care of you and would like to wish them all a very happy Christmas too (and the ones at the Rotunda and Crumlin hospitals).
    Will be thinking of you all soo much this weekend, even more than usual because I know it will be tough on you and on your Mum and Dad not to have you with them. And I hope that Santa makes one of your wishes come true, the one that your Mum can hold you..
    I Love you little Angel and be sure to tell your Mum and Dad that I love them too.
    Lots of hugs and kisses to you all

  4. Grand Dad Tommy

    Dear Ben
    I have read your last report. You are really going through a hard time. I am sure that Santa will read Your letter and Your wishes
    and will do his best to make them happen. Keep going and all will be good in time.
    I wish You a Merry Christmas in company of Your Mum and Dad and surrounded by all the nice nurses and doctors in Temple Street.
    luv
    Grand Dad Tommy

  5. judi

    Dear Ben
    You are having a tough time of it, I am so sorry. Also I feel sad for Mum, Dad and all your relatives who will be waiting and watching and be so very keen to play with you and hold you.
    Everyone is learning lessons in how to be very brave and strong. Mum, Dad and you are getting lots of love and support. We are all sending hugs and kisses to you all.
    Love Judi and Ulf xx

  6. Johanna

    Dear Ben!

    Just wanted to say that we hope and believe that your wishes will come true!
    Hang in there and remember that whether you think you can or you think you can’t, you’re right.

    Love
    Johanna, Andy, Lilly & Carl Otto

  7. Lilla hjärtat!

    Jag hoppas verkligen att tomten hör din önskan.

    Kram.

    Caroline

  8. Sorcha

    Dearest Ben,

    I hope with all my heart that all your Christmas wishes come true. We send all our best wishes as usual – lots of love, hugs and kisses. I know you are at the very top of Santa’s nice list!

    love, Sorcha, Neal & your little friend Réiltín xxxxx

  9. caroline

    Bonjour Petit boy,
    Je reviens de Nantes en france, ou j’ai ete voir mamaman.GrandDa Tommy ma tenu au courant de ton etat, ce qui m’a fait vraiment plaisir, car etre loin, ce n’est pas toujours facile.je pense beaucoup a toi et surtout a tes parents.
    Ton papa te traduira mon petit mot, car il parle aussi le francais,ta belle-grandmere Caline

  10. Bittan

    Hej Ben,
    På min önskelista till tomten står det bara en sak i år: att du ska bli frisk så fort som möjligt. Det är det enda som gäller. Åtminstone så frisk att din mamma och pappa får hålla dig i sin famn, för det är väldigt viktigt, både för dig och för dem.
    Tusen kramar!
    Bittan

  11. Johan

    Hi Ben, and thank you for keeping us up to date. Great for all of us who think of you every day, and really wonderful to see you having a peek at Dad’s lens.
    I hope you will have a peaceful and quiet Christmas, so that you and your parents can have a little rest, get stronger and so that you will soon be well enough to go home.
    Loads of hugs from Stockholm! /j,J&m

  12. Björn

    Lille vän,
    När du läser det här så hoppas Ulla & jag att du redan är lite bättre. Jag är far och farfar och vet hur Tommy, Richard och de andra känner! Du är en kämpe, you are a true fighter, little one. See you! The Bear

  13. Hi Ben,

    I’m so sorry Santa doesn’t visit The Netherlands like he does Ireland, ’cause if he did and i would come across him, i would most certainly ask him to pay extra special attention to your wishlist.
    You know what i’ll do in the meantime? I’ll keep my fingers crossed for you and your mum & dad.

    A big wave from here,
    aafke

Leave a Reply

Your email address will not be published.
Required fields are marked:*

*