Wow, 50 days since transplant, it’s really bizarre to think how long ago day zero was now as in many ways it seems like yesterday and then again it feels like another life!
A lovely lie in this morning until 9.30am. It seems there are some benefits to Herbie’s late nights! Weekends here at GOSH have such a different feel, as I know I have said before. The hospital itself is much quieter and obviously we have no teachers , no play specialists or volunteers visiting. This means spending more time in the room and much to my annoyance Herbie didn’t want to do any of the fun activities I envisaged to pass the time. He was basically going between his ipad and the TV! Amy was his nurse again today so he was very happy, although he did have a moan about the Nystatin. He has to have it 4 times a day and it’s his only oral drug at the moment, everything else is iv or through the PEG. The nystatin is for the black tongue he developed last week , thankfully the meds seem to be reducing it.
The ward has really changed in the last day or so with so many new people arriving. Next door we have another BMT patient so all three of the BMT patients are in a row. The other rooms are all immunology patients and we seem to have lots of new faces.
Sadly my friends are still in PICU, I miss seeing their friendly faces in the ward kitchen and have everything crossed that their sweet baby will be back in the ward soon x One of the main problems when new people arrive here is that the kitchen rules aren’t always explained. Sometimes this is because an interpreter is booked to come to explain and hasn’t yet. When we arrived here 8 weeks ago there was a problem with lots of food going missing. The set up in the kitchen is that it is shared between Robin and Fox parents, each patient gets a basket to keep things in one of the fridges (BMT patients have their food in the BMT kitchen on Fox Ward but their parents keep their food in Robin’s kitchen). There is also a space in the cupboards for a shelf per room of non fridge items. Yesterday when I went to get my mug (Dan and I have Moshi Monster mugs that we purchased especially for BMT) from the cupboard I noticed that Dan’s was missing from the shelf. I have hunted high and low but so far it has yet to turn up! There have also been times recently when new people have been seen rummaging through other peoples shelves, usually unaware that these items belong to someone! It’s very much like living in a shared house with calls of “Who ate my baked beans?”
The morning was spent on a couple of loom bands, Herbie helped, and then just various chatter and TV.
We talked about home and friends, he told me the things he wants to do when he gets home and we reminisced about last years holidays to St Ives and Dorset and camping trips with The Abbotts.
The Dr arrived quite late, which is usually a good sign as they seem to go to the most sick children first. Herbie poked his tongue out at her and blew raspberries at her and still she smiled and said he was so lovely?? She was very happy with his progress and suggested we return to oral pred (steroid ) on Monday and that the dose is lowered. We will also go back to doing meds ourselves.
We decided to head out a little earlier this evening as it was cool but dry. We went to Queens Square as we have the last few nights but then I suggested Russell Square where Dan and I had sat outside the cafe in the sun only weeks before. Herbie loved this idea. It was a much longer walk than he was used to but he did brilliantly. I did have a sudden panic when I realised that I had forgotten to take a urine pot with me incase he needed a wee but thankfully we were ok. When he saw the fountain through the railings he ran off in its direction. He was so excited!
He was absolutely fascinated by the fountain and I was able to sit on one of the surrounding benches whilst he ran around it, whooping with delight and joy. My heart soared!
He came to sit with me for a bit and we chatted again. He took of his hat. The new hair growth now very much in evidence.
“Did I still love him without hair?” The question broke the hazy idyllic moment with a razor sharp edge. “Of course, of course I still love you, long hair, short hair, no hair…makes no difference to how much I love you.” “But you always say you love boys with long hair?” “Yeah but I love Daddy and his isn’t long at all!”
I noticed a man who was reading his paper on the next bench look up and smile. Herbie ran back to the fountain.
As we walked back to the hospital I suddenly became aware of the responses of those around me, smiling at Herbie as we walked by, children staring at him and whispering to their parents, even strangers just saying hello as we left the park. I looked at my boy, he had removed his hat, the little Rice Krispie head was on show! That’s what it was all about. He walked confidently back, his peg hanging out from his hoodie, Hickman line swinging in a Baggie round his neck.we went back to Robin Ward via the vending machine to get his treat. This little ritual is one he loves now. He saves it until Skatoony starts at 9pm.
I spent the evening watching TV with Herbie until almost 11pm! He was full of it because we had a nurse from the ward that we hadn’t had before, Rose.