T+21…we are 3 weeks post transplant! Whoop whoop!
I woke and the sun was shining and it felt like the day would be a good one. Only one day out of the thirty days we have been there have we not woken and opened all of the curtains in the room. I can’t imagine living in one room for 8 weeks and not letting daylight in but lots of others on the ward do just that.
Herbie also woke with a sunny smile and no longer seemed in any pain. This meant that we no longer needed a visit from the ‘Tissue viability’ Team. Yes they have teams for everything at Great Ormond Street.
I can’t really put into words how I feel on mornings like this, mornings when my baby boy seems to be his usual , happy , cheeky self. We came into transplant after months of illness and worry with our boy almost back to himself only to make him unwell again. So to see him like he was today was wonderful.
Helena came into the room to clean. She commented immediately “he’s back to himself huh? The lovely boy is back right? That make me so happy, lovely lovely boy”
Herbie actually blushed!
Herbie had his bath and listened to music as is the routine. Thankfully today I didn’t get the plug stuck. We were barely out, dried and dressed before Maria came in with the blood results.
The HB was very low as Herbie didn’t get his transfusion over night as there was a mix up with the order. White cell count & neutrophils had dropped. Because neutrophils were under 1 again he would have GC-SF again. Lymphocytes had climbed again but we really need them to start climbing a little faster. Platelets were obviously better since transfusion.
The doctor came in and said all was going well, the iv ciclosporin would stop on Monday probably and hopefully we would have news on the graft by then too.
Bev came with post.
A Moshi book from cousins Esta, Isaac & Martha was so exciting that he almost forgot to open the other things!
Thankfully he was lured away by his inquisitive nature!
Victoria, his awesome outreach teacher sent loads of fun stuff, the jumping beans, bubbles, whoopee cushion and hand buzzer and finger guillotine caused great delight and a few nurses were caught out too. He misses you too Victoria and wondered if Finlay knew about him losing his hair too x (thank you for thinking of me too xxx).
Rachel, Sid & Archie sent us both loads of lovely things. I felt quite emotional reading the story that Archie wrote for Herbie and the letter/card Rachel wrote to us. I am so lucky to be surrounded by such caring people. Herbie LOVED the first instalment of the story Archie and was excited to hear your favourite Moshi choices.
Katie & boys , thank you for the goodies, can you believe he ate all three packets of buttons in one go! I was thrilled his appetite is returning.
Amy & crew ..perfect choices again and he loved the Lego card, it’s up on the door!
We emailed Herbie’s Class with some photos and then Herbie had a rest in front of the TV.
Another of the GOSH volunteers came in, she had seen him last week and played Moshi’s and was keen to play again! I stepped out into the bustle of a sunny Friday in the capital. I walked around before heading for a cup of tea in Costa courtesy of lovely friends x
I returned to find today’s nurse , Sandra, giving some iv’s and a few oral meds. No blood still, it was likely to be during the night now. Herbie had a little sad moment when he realised that I was swapping with Daddy. “It’s not that I don’t want Daddy” he sniffed “but I want you too”
Talk about tugging at the heart strings…
Dan arrived and came with more goodies from home. Moshi clothes and goodies from his Aunties and Uncles and cousins.
and a special good luck charm from Turkey from George & Lauren. He put it on the bedside table to watch over him. Thank you.
Moshi excitement from Evie and her mum and then it was time for the teacher!
Dan and I left the hospital for an hour and bumped into another BMT patient and her mum waiting in the reception to go home. They had been in just under 8 weeks. This was a great thing to see, it made it feel within our reach too.
So I left the boys to their weekend of football and games.
I’m missing them already. They have Amy tonight as their nurse, one of Herbie’s favourites.
I wonder what tomorrow’s blood results will show?