T+16 started earlier in Room 2 of Robin Ward than it did back in the Shire! The boys woke and did the usual routine, weighing, measuring etc (although Dan did mess up slightly by weighing Herbie AFTER breakfast!) .
We were now 48 hours post fever and things were definitely looking promising that we were moving on. The ward has been extremely understaffed the last few days due to illness. I’m sure you can appreciate that working on a BMT ward there can be no risks taken with any sniffle etc that could pose a threat to the immunocompromised patients. Today Herbie was cared for by a nurse from ‘upstairs’… This is where Rufus was a few weeks ago on the Oncology Wards. Obviously the speciality BMT and Oncology nurses are quite similar in that they are dealing with isolated patients with low immune systems and complex meds including chemo so they can help each other out more easily.
It’s seems apt at this part of our journey to talk about the effects of separation on our family. I have often wondered how friends of mine with partners in the Armed Forces or who have jobs that take them abroad for periods of time cope. Our family spend most of our free time at home together and it’s what we love as a family. So the fact that we have not actually been together as a family for almost 4 weeks is tough. There is no one place as the adult to be that is better than the other. When you are caring for Herbie you think about home, the children , the normal things you could be doing and you miss them. Dan and I miss waking up next to each other, sitting on the sofa watching TV, basically just being around one another. However , leaving Herbie is also tough. It is why we have decided that Friday and Mondays will be cross over points where we spend time with each other before swapping locations. The children too are finding it difficult (although I am actually amazed by their strength and maturity in dealing with this problem.) Tonight when I face timed Herbie I could see the glint in his eye when I said I’m back with you tomorrow, he even gave a small cheer and yet also the look of sadness in the 3 pairs of blue eyes sitting next to me. Kitty said “I really want Daddy to come home tomorrow but I’m sad too because you can’t stay with us. Dan also text me saying the time spent with Herbie this weekend had made him reflect on how our family had been all over the place for over a year with long hospital visits but that this BMT offered us hope of a stable future.
The blood results were eagerly awaited as always now.
HB 82 (close to transfusion level)
WCC 1.19 (down as suspected but still good )
Neutrophils 0.95 (again dipped a little but we were told to expect that)
Lymphocytes 0.13 (climbing!)
Platelets 60 ( yay…fever free for 48 hours has helped stop the depletion)
CRP 90 so on its way back down!
The doctor on this weekend was very pleased, especially that the CRP is coming down.
Herb has developed a slight rash on his arm, the doctor said it shows the cells Ru gave are working but it’s an annoyance so he’s been given steroid cream.
They also felt he’d had a bit too much fluid over the last 24 hrs etc, what with water boluses and feeds & so many iv’s as well as drinking himself they gave him something for it and he’s weeing for England now!
In other news I was given lots of gifts etc for Herbs to take back today, they will feature tomorrow but a shout out to our dear friends Vic, Kev, Owen & Stewart, Kev’s mum and dad, also ours friends, Brenda & Steve and Maddie & Ant , Frankie, Archie & Chester for the lovely gifts they sent to Ru & the girls and the Costa card for Dan & myself. Herbs gets his tomorrow!
Herbie was in fine form today, I’m back on duty tomorrow so see you on T+17, when hopefully the good news will continue.
Still remembering for every good day, it’s one less bad x