28 days later

Hi everyone,

I have not turned into a flesh eating speed zombie as the title might imply. It does however mean that I am still hanging in there, and in this case there still being in Crumlin’s Children hospital.

It has been another long week, with a lot of anxious waiting. The operation I mentioned last week was scheduled on and off, and on and off. That made me sad, as they had to make me fast during that time, and I missed my dinners…

Thursday was a good day. For a little while, I thought it might be good to finally spend a some time having a look around. So I opened my eyes for a few minutes and took a good look. Mum and Dad were there, smiling and being all happy at me looking around. Mooching around was fun, but tiring, so after that I had to take a nap. As far as I could tell though, they were really happy, I could hear them smiling!

Friday was really good too, the nurse that was looking after me that day, Angela, asked Mum if she wanted to hold me. I would not be a full on hold, because of all the tubes and lines and what not, would make that too difficult. It was good enough for me though, and any type of holding by Mum would be great. Angela picked me up a bit, and told Mum to put one arm behind my back and neck, and the other under my rear end. But that was it, Mum was holding me! It was so nice that after a little while, the lovely comfort of Mum holding me had me falling asleep in her arms. I look forward to doing plenty more of that, and with Daddy too.

So The operation finally happened on Saturday. After all that waiting, it happened in the morning and I was in theatre around 11am. I don’t really much of what happened then, or after, I was fast asleep. The surgeons and doctors were happy with how the procedure went, but sadly the rest of the news is not so good.

What we all wanted to happen from this was that the PDA close (that valve that should have closed but didn’t), would sort out the irregularities in pressure between my heart and my lungs. Even though the procedure of closing the valve worked, the pressures did not regulate as expected, meaning that the underlying problem of the pulmonary hypertension is still a problem and has not gone away.

I know that this news made Mum and Dad sad, because when they came into see me, their eyes were all red. When they are sad, that makes me sad too.

What has to happen now is that the pressure imbalance has to be taken care off. This will hopefully happen when my lungs start to work properly again. For that to happen though, I have to start a new course of medication (Dad was saying that one of them was based on Viagra, and he laughed – I don’t why, what’s viagra?), and by all accounts, this is going to take some time to work, ball park a month.

I forgot to mention that after my op, I got a present from one of the physio’s. It is a duvet hand stitched by a nice lady who is part of the Henry Bear Blanketeers. These people are wonderful group of people who knit and sew blankets for children and babies who have had heart operations, to keep them warm and give them something comfortable to have and hold. Thank you so much. I can’t have it at the hospital at the moment, because it is too big for my bed, but Mum told me she was going to put it in my cot at home for now.

More friends came to join me and Ben Bear in my bed! I now have Little Bunny, and Tux and Ben Bear of course.

 

The yellow plaster on my chest is where they had to open me up to close off that valve. I’m going to have a cool scar there when I’m older!

I also got a lovely pair of socks for Christmas, hope I’ll be able to wear them soon.

So that’s about it for now. I have just been transferred back to Temple Street from Crumlin, so that is good, it means it easier for Mum and Dad to come and see me. A very big thank you goes out to everyone in Crumlin who were really nice to me and looked after me so well.

Ben

 

5 Comments

  1. Men Ben…

    Hur mycket ska du behöva stå ut med egentligen. För att inte tala om dina stackars föräldrar. Tänker på er alla varje dag.

    Hoppas att du snart ska bli bättre och att Ben björnen kan hjälpa dig med det.

    Puss och kram frÃ¥n Caroline och alla här i Sverige…

  2. Grand Dad Tommy

    Hej Ben. Grand dad is reading what you are writing with great interest.You are writing very well. You say you like it when you travel with the blue lights on.Your really travelling as an VIP,Very Important Person, and that is what you are for your parents and us other.You are a real little fighter Ben. Keep it up.Your auntie Sophie and I are coming to Dublin on Saturday.We are not allowed to see you yet but we will meet Dad and Mum.
    Dad will tell about all our dogs and the bad weaather here were I live. You will come one day and see for yourself.Big kiss.Grand Dad Tommy

  3. Lena Esseen

    From your mamie Lena. Hello big Ben, well if you lived in England …Your are a real fighter, go on like this. It is not many babies who has gone trough all this things. But it will make you very strong for the future, I know!!!!Xmas is coming fast I will go and see all your aunties and onccels and we will all of send warm waves of love too you and Mum and Dad. The whole hospital will be trembling!!Just wonder how many friends you can keep in your bed, try to find a nice french fellow. Love now, millions of hugs and kisses; Din lilla Farmor

  4. Ali greene

    Hi Ben
    We’ve not met, but I worked with your mam and dad. Ben, you’re such a brave little man, and I know I don’t need to tell you this, but how lucky are you to have such super parents! I’m glad to hear you’re back in temple street now, and even though the operation didn’t go as you’d hoped, there’s always going to be something new to celebrate every day, so keep opening your eyes and having a bit of a mooch about the place. You’ll be home before you know it.
    I’m a big fan of your blog posts, so thank you so much for taking the time to let us all know how you’re doing. It’s a great thing to do.
    Take good care of yourself and tell your man and dad I wish them well.

    Ali
    xx

    P.S. how cool are those socks??

  5. Auntie Sophie

    My sweet little Ben. A VIP is what you are allright!! Grand Dad is right, you are our little VIP and we are sooooo proud of you! Everyday that goes by is a victory for you and for us, so keep on fighting. We all think of you all day, everyday. And cool friends you have in your bed, I hope they’re not too much hassle and let you sleep at night ;-)
    Hang in little sweetheart, sending you lots and lots of strength and looooooooove!!!! love you darling Ben and keep up the good work!

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