Day 42 in ICU

Hi everyone,

Hope you all had a really nice Christmas with your family and friends. I spent Christmas in Temple Street, and Santa found me! He came and brought me some lovely presents. A teddy with a santa hat, a lovely book with a bunny sticking out of it (he was very soft) and an Irish speaking teddy! You press different parts of him, and he says things in Irish. I’ll try and master English first though, and then we’ll see about Irish.

The week just gone, has been another rough week. I am trying to think back as to when this was not the case, and I am not sure that it has really happened yet. After I wrote my letter to Santa, things went downhill for a while. The fluid was still building up in all the wrong places, my tummy was at me and had explosive nappies apparently. I know I am way too young to play with fireworks, so I’ve no idea how they came to be explosive, but they did. Everyone seems to think that it might just be because of all the medication that I have been taking, all I know is that it left my bum quite sore and red… They had to take me off Mum’s milk, because they also think that I have become lactose intolerant, it could be because of all the medication, not sure yet, but it does seem to have helped with my tummy, and it has settled down in the last couple of days. The doctors came and had chat with Mum and Dad, and the doctors looked very serious. It is never a good thing when the doctors have that look on their faces, it usually means that they are going to make Mum and Dad cry, and that makes me sad. I did not hear all that they were talking about with the doctors, but I know that they were all very sad, and both of them have since then kept telling me to get better, to be stronger, not to have anything else go wrong for me. They told me that they know I am trying and fighting as hard as I can and that I am a strong and brave little boy, but that I really really really have to try hard now, that it was important that I made progress, and soon.

I am doing my best you know, but if it is not one thing, then something else has a go at me. It is not fair, all I want is to get better and to come home to Mum and Dad, see my room and meet all the rest of my family.

So I decided, with the help of the doctors and nurses of course, to try even harder. The doctors helped by increasing the amount of dialysis I was getting to really work at shifting that pesky fluid that was in all the wrong places. Not only is that fluid making me look fat, but it also pushes down on my lungs and gets inside my lungs and gets them all wet! That wetness is especially not good for me, as it means that as result I am not able to get full on oxygen saturation in my lungs, so that fluid has to go. I don’t like dialysis by the way, they have to pump loads of liquid into my belly and leave it there for ages before they let it out and then the cycle begins again. It is really uncomfortable, and I find it very hard not to complain about it when they do the fill, but I know I have to be strong. The good news is that it seems to be working again. I have lost loads of fluids and now my head does not look like a really big ball, and I heard Dad say to Mum that we could really see it now on my chest as well. So I’m happy with that. They have also been reducing the drugs that regulate my blood pressure, and I am now able to keep it a decent level without the help of those drugs. I need to do that to keep my kidneys from shutting down again.

Like I said, it has been a rough week, and it was not the way that I had hoped to spend Christmas time, but I have worked really really hard at getting better, and I think I have managed to do that, even though I still have a long way to go, but I think I am now heading in the right direction.

Yesterday though, a nice new doctor came to talk to Mum and Dad and told them of more results that they got from a lung biopsy they did when they had my chest open to close my PDA (partem ductus arteriosis and not personal digital assistant…). The good  news from that was the pulmonary hypertension did not damage my lungs to the point of being irreparable, that was a very big relief. When we got the initial results, we were told that there were some anomalies that we needed to have a respiratory consultant take a look at. That they did, and it turns out that I have PIG. PIG stands for pulmonary interstitial glycogenosis, and is a very rare condition. It has only been described since 2002 and there is very little known about it.  They won’t know much about what it means for me until my existing condition gets better, so we’ll keep an eye on that and see what happens.

So all in all I think it would be fair to say that I have improved somewhat, and I have lost a lot of fluid, and that is good.The diagnosis of the pulmonary interstitial glycogenosis is a set back, but there is a lot of unknown about what will happen with that so we will have to wait, and I’m sure that Mum and Dad will tell me about those things when the time is right.

Today though, has to be the best day ever. Yesterday Dad asked the nurse looking after me if there was a chance that Mum would be able to hold me. The last time it was mentioned as a possibility was about two weeks ago, and then I took a bit of a turn for the worse so that knocked that on the head. Seeing that I had been a bit better in the last few days, Dad asked again, and the answer was “Yes of course!” So with that when Mum and Dad arrived today, the whole process was kicked off. It took quite a lot of effort to get me into my Mum’s arms, 3 nurses and a lot of shuffling of pumps, tubes and wires, but we got there in the end.

Here I am with Mum, can you see how much she is smiling :) (Look Loyal, it’s the lovely blanket you and your wife gave us!)

Me Mum and Dad

Me and Dad!

Thank  you Santa, although a little late, we were all glad that you were able to come and bring us our real present this year.

That’s all from me for the moment, I’ll see you all in 2012. I’m really hoping 2012 is going to be my year and that I’ll get home to Mum and Dad really soon.



  1. Loyal Sequeira

    Hey Ben, Hugs are a means of transfering energy to another person who is dear to you. What a perfect image of u with mum and dad and all the love that can be seen in the pic. I am glad u r feeling better and may 2012 be your year. Hope that u can go home soon. loads of love and prayers. Loyal

  2. Kerry

    Wow Ben, I can’t even begin to tell you how proud I am to see you in the arms of your wonderful mammy and daddy. You are being such a brave little boy and I know you must be very tired but you just keep fighting, we are all thinking of you constantly and send you the biggest huggies, you deserve the best little man and I know you’ll be home with your mammy and daddy in 2012. Lots of love Kerry xxxx

  3. Lotta

    what a wonderful moment for the three of you. Thinking alot of you and sending through the skies ; strength and love for you Little man. The fight is yours but you are not alone . Love from Lotta

  4. Nicola

    Hey Ben, you are such a champ! I am over the moon to see the pictures of you with your Mam and Dad, they must be so proud of you, as are we all! I have never heard of such a brave boy. Everyone is thinking of you and sending you love and strength every day and your Mam & Dad too! You are doing an amazing job, fighting so hard and I can’t wait to see more pictures of you three together. Keep up the good work Ben, give Mam a big hug from me. All my love, Nic xx

  5. judi

    Dear Ben, Richard and Grace – you are a beautiful family. Cherish these moments, be brave and strong when you need to be and allow yourself the tears and saddness too.
    We are sending you all the most positive thoughts from London.
    Judi and Ulf xx

  6. Kabad

    Hi Richard, Grace and Ben. I wish you a very happy new year. I Hope Ben is getting stronger and healthier day by day. Lots of hugs and kisses for the Little Angel…

  7. Dean Cartlidge

    Hi Ben, My little boy has PIG too. Hes 2 years old in March, there is quiet a lot of guessing, trial and error with the treatments, but if your mummy and daddy ever need any information, or want to share information, please feel free to pass this message on.

    Hope your getting and feeling better


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