Under pressure

T+27 started minus our favourite Apple gadgets! What a disaster, the iPad mini & iPhone were all out of charge and the ipad had 5% and both Herbie and I were a bit twitchy!

We started the day with music as Herbie had his bath and then it was time to weigh him before he got dressed. I was actually dreading the weigh in because I knew they wanted his weight down again. It wasn’t, 21.75kg, 0.45kg up on yesterday.

This meant that the day suddenly felt more hurried and worried and basically the nurses and doctors needed to decide what to do. After an anxious wait the nurse retuned to say that the doctor felt that fluid intake was more important and that was probably the cause of the weight increase so it was left.

We started well with fluids, 80ml juice consumed on waking and using a straw we got Herbie to drink 268mls of chocolate milk with the odd rogue coco pop, by 10am we had consumed 348mls …only another 1852mls to go! Below is a picture of him singing “go your own way”

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The post came. Three parcels and huge Herbie smiles ensued. First box contained this Moshi hat. No name of sender so please let us know.

Who sent this fab Moshi hat?
Who sent this fab Moshi hat?

Then Michele, Jamie, Joe & Emily sent a cool, flashing, superohero badge and more mash up cards, jelly belly cards and a medal. Herbie loved it all.

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Finally the third parcel…

Oh what could it be?
Oh what could it be?

Great excitement to find it was from James who will also undergo a BMT here in Great Ormond Street in a few months. We loved seeing and reading about you James and I said to Herbie, “I wonder if James is worried about a BMT?” He replied ” I can tell him it feels like it’s scary but then you get here and it’s not!”
Thank you to James (and your mummy & daddy & big brother Sam!) for this fabulous light!
We will send you something when you are here x
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Helen arrived and before I headed out she showed me the mini superhero movie Herbie was making, it’s awesome!

I was shocked at how hot and sunny it was when I stepped out onto Great Ormond Street with Amanda. She had travelled from Ealing to meet me for an hour. Thank goodness I got my break today. We had a lovely lunch in Carluccio’s, sitting outside but before long I was saying goodbye and heading back to Room 2.

I had received word from the kids school yesterday that the grand total raised for GOSH from superhero day was £776.61, totally amazing! The just giving page has £3037 so far too!
Then I had an email from Laura regarding contacting the local newspaper who were running the superhero day story. I called him to try to give him info, after a long chat he told me the story would run on Saturday.
Sadly I won’t be at home this weekend as his tummy is upset so I have to stay put.

On my return I chatted to Herbie for a bit and then we checked his fluid intake. His blood pressure and resp rates were increased. The anxiety levels rose!

More platelets today
More platelets today

Bloods were in and looking ok!
HB 82
WCC 3.53
Neutrophil 2.50
Lymphocytes 0.56
CRP 51 (odd that it’s gone up)
Platelets 22

After a whole lot of nurses coming to check his BP. When it still wouldn’t behave a doctor arrived with a plan. Thankfully Herb seemed in great form.

David, one of the housekeepers arrived with another package
Moshi fun from Miles Symons who kindly (at 6) purchased using his pocket money
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Thank you Miles! They are fab!

Margaret , a GOSH volunteer arrived to play and chat to a herbs for a bit. He continued drinking and chatting and I was thrilled to hit his drinks target by 8.30 but sad that his BP was 160+

Lots more doctors in and a decision to give medicine to make him wee!
So we headed into the evening with a plethora of pots

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Hayley came on tonight and thankfully his blood pressure started to go down.final one before sleep was 116.

I am tired and ready for sleep…
Signing off fromGOSH

 

 

2 thoughts on “Under pressure”

  1. How delightful to see a photo of my grandson, James, and even more to see Herbie’s helpful comment that GOSH is not scary once you are in there – I’m sure it will help reassure James.
    Thank you so much, Em, for your blog. I’ve found it enormously helpful to see a real lifel example of what to expect. Good luck to you all with the rest of Herbie’s recovery.

    1. Barbara thank you for commenting. I am so glad that my blog is helping others to prepare. I don’t think anyone truly understands what it is like for a family to go through this but preparation and positive attitudes help and talking to people who have been there. I have a couple of people who have given me insights in what to expect and it is invaluable. I hope we can all stay in touch to help you all through it. It really isn’t as awful as your mind imagines it to be xxx

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