Trio completed

Hi everyone,

So I have now made it to a third children’s hospital in Dublin. On Friday last, I was transferred to Crumlin Children’s Hospital. I much preferred the trip this time around. Moving house went really well this time, all in all it took me about 1hr30mins to get across the city! Bed to bed! During my last transfer it took me that amount of time just to get from incubator into my travel incubator…

Mum and Dad followed me there, and they were really glad to hear that I travelled so well. My new room is even bigger than my last one, and even quieter – I like that, it allows me to get as much rest as possible.

On Saturday, the day I was supposed to have my operation. Did I mention my operation? The doctors think that it will help sort out my pulmonary hypertension, and also help my kidneys to work better. They want to close something that is called my ductus arteriosus (a vein between my heart and lungs), they call the condition Patent Ductus arteriousus or PDA for short. (Dad tells me to tell you that wikipedia have a good explanation of what it is). It all sounds complicated to me, and those words are very big for me… Anyway, the surgeon reckoned that it was not a good time for them to do this, because I had not lost enough fluid, and that it would be bad for me to have the procedure done in my current condition. To add to that, all of that fluid was too much for my little lungs, so on Saturday one of them collapsed, the nurses and doctors fixed me up. Sunday though, the other one had a go. They have been getting better now, and all the docs say they should be fine once they remove the extra fluid I have been carrying.

For a couple of days Dad looked like a duck :) he had a cold and to not spread his germs, he had to wear a mask, I thought he looked funny.

He is better now, but he did not like not being able to see me for two days though, that wasn’t nice, I did not like it either, I missed him, but Mum was there though.

 I am starting to feel better, and one sign of that is that I turning into a hungry little boy.

Over the last couple of days, they have increasing the amount of milk I have been getting. From two mls every two hours, to five, to twelve. Last night they took me off the drip entirely, and I am now on 24 mls, wohoo!

I have also been able to pee more on my own, but I still need the dialysis, because of all that extra fluid I am still carrying, in my 3rd spaces apparently. Not too sure where that is, but what I do know is that it is not supposed to be there.

Another sign that I am doing better is that Mum and Dad are very happy that everyday I seem to have a better plate count, or should that be platelets (some of the things they say are very confusing)…

The plan is now that all the doctors are going to talk about me on Thursday, and they will then decide about this operation of mine. Hopefully, they will decide that I am better enough to have it, and then I will be crossing my little fingers to hope that it helps to me out. They think it should, so I really hope it works, because I want to go home, I have more teddys waiting for me that I cannot wait to hug. I think also that Mum and Dad are tired, and would rather I were at home, so that is where I want to be.

The picture below is Mum cleaning my mouth, because i like to blow bubbles, but then my mouth gets all messy, so it has to cleaned. Do you see the lovely bear with name on it? My Dad’s cousin made it for me, and I love it. It came all the way from Sweden! I wish I could have all my teddys, but I’d have no room in my bed if that were the case…

 

I have to have a little sleep now, so that i can wake up and squeeze Mum and Dad’s finger when to come to see me later. I like that, I like to know they are there, hopefully Dad will read me another story today, and I hope that Mum will have socks for me, and that she will be able to rub some cream into my hands, they get very dry here under my heater.

I know I said it last time, and the time before, but all the same. Thank you to everyone who are thinking of me, and asking about me and sending me their weep wishes, it makes me happy, and i can’t wait to see you all really soon.

Ben

8 Comments

  1. Brilliant and hope things pick up very quickly after this (for you all!)

  2. judi

    Hi Ben, you do look better than the last time Dad sent a photo. I hope you continue to eat and sleep well and that goes for Mum and Dad too! Love your teddy. We think about you every day and send hugs to you all. We are very pleased to get your updates and feel privilaged to be part of your life.
    Judi and Ulf

  3. Sorcha

    Hi Ben,
    I am so glad you are feeling a bit better now. You are such a little fighter. Thank you for your news today, I was hoping Dad would help to post some more news today and was waiting paitiently. Well, what a three weeks you’ve had, you keep bouncing back and hopefully we will all get to meet you soon. Good luck with your operation. I know your mammy has never had one, I don’t know about Dad, so you’ll be able to teach them all about it. Lots of love from all of us Collinses & all the people here in Dublin 15 who are always asking for you and send their best wishes xxxxx

  4. Lindsay

    Hey Ben
    Looking forward to meeting you soon.

    It’s great to see you already have your Dad’s techie skills!

    Rest well!

    Lindsay

  5. Sophie

    Hey my sweet little Ben!!!
    Or should I say “Warrior Ben”! You sure are a little fighter aren’t you?! Keep going sweetheart so that you can go home to your mummy and daddy! ‘cos I know they are sooooo waiting for that.
    And thanks for the update on what’s going on in your, already busy little life. I get it from your Daddy regularly, but it’s not the same as when it’s you :-). You already are a well travelled little guy! But sure that runs in the family :-)

    I think of you everyday, millions of times a day. And this morning my first thoughts were for you :-).

    I’m flying over on Saturday, so can’t wait to see your mummy and daddy, and my Dad, your GrandPa. And I hope that i’ll be able to see you too… But that will depend on you and the doctors.So keep up the good work, ok ??
    Love you my angel !!!

  6. Hej Ben!

    Vad glad jag blir att du tycker om nallen så mycket. Och vilken ära för mig att det är den enda nallen i din säng. Jag hoppas att den hjälper dig att bli frisk jättefort. Du ska veta att jag tänker på dig och dina föräldrar varje dag.

    Puss och kram från Caroline

  7. Sinead Murphy

    What a brave and gorgeous little boy you are Ben and you’re a very lucky little boy to have such brave and loving parents. Get well soon S &D x

  8. Helen Moore

    Dear Ben, Grace and Richard, Thinking of you all and hoping you get stronger and stronger every day. Remember you have a lot of friends to lean on and make sure you do. Delighted to see your new addition to the family, A very special little puddins!! Love Helen

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