T+22. Day 1 of the 2nd boys weekend began well. Drinking and eating resumed and despite the lashing rain outside all was sunny inside. Dan had had a restless night as the three hour blood transfusion had taken place and machines had been pinging!
As life progresses ‘on the outside’ it’s easy for our lovely boy to be overlooked , unable to join in, be part of the most basic things his peers are doing. An obvious example is school but there are less obvious ones such as missed day trips, new releases at the cinema, friends birthday parties and Beavers.
So it was wonderful to receive a message today from Tom, our local Beaver leader saying that he was able to offer Herbie a place in the autumn and until he is able to mingle with children again it will be in an outreach capacity, he will be set assignments & he can report to the colony & be invested via FaceTime! This was music to our ears and we are so very grateful to Tom for thinking of Herbie & accommodating him.
The blood results were back relatively early. Remember that he had GC-SF yesterday which boosts neutrophils & in turn white cell count & also a blood transfusion.
The lymphocytes had doubled which pleased me. Hopefully we won’t see to huge a drop tomorrow.
Herbie had a male nurse today, Craig, only the second time he has had a male nurse at GOSH & yet you see a lot more male nurses here than in Oxford. He instantly became a face to scowl at when the words ‘finger prick’ were uttered!
There was lots fuss before hand and afterwards lots of scowling at Craig & Daddy!
Herbie’s renal function has been an issue for the last few days and there was talk of water boluses again today but then it was discovered that vancomycin levels were high and so in an effort to help him they reduced the dose & temporarily suspended Ciclosporin and Amikacin for a couple of doses.
This also meant another finger prick at 10pm. Dan was feeling pretty miserable at this point after calming him down once.
We thought you might like to see the iv & oral drugs that come in one go.
These kind of trays and pots arrive regularly throughout the day, it’s no wonder his poor kidneys are over worked but also once again thank goodness for the peg, the meds in the silver pot are all oral but can go via the peg.
It seems that as the weeks progress they take their toll on us all in different ways. We have been living in this state of dispersed family life for almost 5 weeks now. Kitty was at a Scout camp for the weekend but had to be picked up this evening as she was missing me. It was hard for her knowing she was missing our precious time together. Dan was hit by exhaustion today, from the physical, mental and emotional side of this scenario. Thankfully we are wonderfully supported by family and friends. Steffi arrived with meals for the kids to help Dan this week and chocolate for me and a gift for Herbie xx thank you Steffi and Cath & Wend & Jon have been keeping Dan fed too.
And finally I received a moving text message from Dan this evening
“Herbie was asking me what it was like outside on the ward and was it really dark at night
That’s when it hits you just how long he’s been in one place..very sad x”
Hopefully these blood results will continue in the right direction and keep everything crossed.
Dan managed to read Herbie a story and he went off to sleep, when Ella ,his nurse this evening , came to do finger prick it was done quietly & without waking him, trauma over (for now)
So tomorrow is another boys special. Let’s hope for good news xxx