With the carrot well and truly dangled just out of reach yesterday our minds were filled with ways around the problem. So clearly last time when the TAZ stopped and we went home the fevers returned. Now from a parent point of view this could be two things,
A) he needed a longer course of TAZ to completely get rid of a bacterial problem
B) he picked up a new bug whilst in hospital
To both Dan and I the former seemed more likely. With that in mind, although we desperately wanted him home we also didn’t want to be back in hospital in just a few days post discharge as before. This meant hanging in there for a few more days but how many we didn’t know. The school summer holiday that we had envisaged being our ‘time as a family’ was being eaten into, the return to school adverts were everywhere, friends were returning from sunny holidays in far away places and we were still waiting for our ‘fun times’ to begin!
These past few weeks were not what we had hoped for. The grandparents , aunties & uncles and friends had all done their bit to amuse the other three but we really needed to be together as a family.
As far as Herbie was concerned he was still fever free, all obs were great and his haemorraghic cystitis appeared resolved. He has a residual cough and is on occasion snotty, no doubt why he coughs, but it’s all very much upper respiratory. To be absolutely sure another chest X-ray was ordered. We waited to be called around 12.30. However there were delays and I was so desperate for a cup of tea that when Sam and Grace, the play specialists, offered to play with Herb for an hour I checked nobody had called from radiology for us and then headed to the League of Friends Cafe. As I sat down with my lovely mug of tea one of the ward HCA’s arrived, Herbie had been called to come down straight away! I didn’t even get a sip!
He really had a great time and I think Sam and Grace did too.
Professor Pollard arrived to see if we had arranged the training for the iv’s. I explained the discussions that had been had with the nurses and he said that he felt we should get day release as a compromise so that we could finish the course of TAZ . He wouldn’t commit on how long the course would be saying probably 7-10 days, we were really only at 3-4 days in so it was a big commitment. He wanted to see the CRP come down and stay down. We also have a GOSH appointment, including bladder ultrasound, on Wednesday so they would input then too. Gosh had reduced his fluid target again to 2200mls with 1000mls to continue on an overnight feed to space it out. This is good, although Herbie always manages to hit his fluid target daily? He’s eating well and drinking well and his fluid output is good and he is full of energy. Surely this madness will stop soon? This shared care does work on the whole but sometimes it is incredibly frustrating, especially when both hospitals are very good and want to take charge!
So anyway, Prof Pollard said we could start the day release probably from Monday as it was a bit late to contact the Community Nurses to reinstate the amik and Micafungin iv visits for tomorrow. When they had gone however the nurses said we would go home on Saturday at 8.15am and they would contact the CN Team.
Later it transpired that they hadn’t yet contacted them so I sent texts/emails to see how viable it was. Lovely CN Sarah replied saying they could help out , music to our ears. The compromise would be a reality from Saturday!
I left Dan and Herbie to head home for the night knowing that we would be together tomorrow, albeit for a few hours.
Today’s BMT Fact
Why a donor’s age matters
When it comes to identifying a marrow donor, doctors weigh many factors. One factor is the age of the donor. Medical research has shown that cells from younger donors lead to better long-term survival for patients after transplant. Doctors request donors in the 18-44 age group over 90% of the time.