T+20, are we really only a day away from 3 weeks post transplant? It’s amazing that it’s gone so fast really. The day started with a rather sleepy & grumpy boy and I was worried that we were in for one of our ‘not so good days’. He climbed into bed with me and seemed tired.
I went for my shower and he grumbled that he wanted his bath and he wanted it first etc, etc. I managed to get him to agree to the normal routine. After his bath I tried to remove the plug, it had come away from the chain over a week ago and had been fine but today I just couldn’t remove it! It was well and truly wedged in! I vowed to spend the day trying to shift it.
We decided to carry on with the Hama beads for a bit and then the post arrived. Much excitement at the three packages left in the ante room by nurse Lucinda!
First up was a package that Herbie already knew was from Lily & Sam based on the printed label! He was suddenly much brighter. Lovely pictures from the terrific two, a Costa moment for Dan & I and the most amazing bunting from their talented mum, Cathryn. If you don’t know her work please visit her website.
There was also a package labelled as below
containing Adventure Time badges, he was thrilled and added them to a hat! Trouble is the sender didn’t let us know who they were?
The last package contained lots of lovely picture from his class back home in North Leigh. It really made him smile.
I can not express enough the impact that daily post has on his well being and mood! From postcard to parcel, it’s all so very much appreciated and I am certain has helped him deal with the last four weeks away from home. Thank you x
Helen arrived and he seemed reluctant for me to go. I had to promise to stay in the parent room on the ward, which I dutifully did (after all he can see me leave the ward from his room!)
I chatted to another BMT mum, her son is about two weeks ahead of us. They are also being featured in the GOS series. It was nice to chat. I returned in time for Helen’s departure and the arrival of lunch!
Herbie is still managing to eat and drink quite well. After chatting to other BMT mums this week I have realised that he is doing very well as he has so far avoided TPN (total parental nutrition) which is given 24 hours through the Hickman Line meaning you are always hooked to iv. One child is clinically well enough to go home post transplant but won’t eat or drink so has to stay in hospital!
GOSH has lots of volunteer helpers who come and sit with the children whilst parents take a break from the confines of the room/hospital. It’s quite nice for Herbie to meet different people. Today a new (to us) volunteer came and offered to play for an hour. I was instructed again by Small that I was under no circumstances allowed out of the ward…the Costa card will have to wait until tomorrow when Dan arrives.
I returned an hour later to find him deep in conversation with the volunteer, an ex hospital school teacher apparently, about his photos and favourite Moshi etc. He was happy and content.
When she said goodbye we set our minds to finishing the Hama bead Minnie Mouse. It was a good joint effort, now we have the arduous task of keeping it in one piece until tomorrow when Amy the play specialist can take it off and iron it!
Blood results were in and showing that he needed both platelets and blood as his levels were low.
Neutrophils had dropped considerably but this was expected after the GC-SF boost two days ago.they are still 1.52 which is higher than they were on 31st May after the last GC-SF Which I would hope would mean the levels are rising!
A work man finally had to be called as no matter what we did the plug wouldn’t come out of the bath. The guy arrived and Herbie said “it’s stuck, you won’t get it out” to which he replied “ahh but I have a secret weapon” whilst holding up a plunger! Herbie pulled a face and said “well it’s not so secret now you’ve shown us!” Thankfully, secret or not the plunger worked and the bath water finally drained 7 hours after the bath was over!
The doctors came to do ward round whilst I was in the parent room and told our nurse today, Maxine, that all was very good so no need to disturb me! Another drug converted to oral today, MMF , which runs over 2 hours three times a day so that frees up a few hours in the day. It is also one of the last drugs of the day usually finishing at 1am so that will be a pleasure to lose! The nurses seem amazed that he is dropping iv’s already and so are we!
Herbie had a great day, drinking just shy of his litre target and eating well too. He really does like the food here. Sadly just before bedtime things went a bit crazy. The milk feeds have left him with a rather upset tummy and now a sore bottom which was so sore at about 7.30pm that he was literally writhing and screaming the place down. It was awful. Maxine sent in some cream but it seemed to sting and he screamed more even though the skin doesn’t appear to be broken. Oramorph was given next and this started working and he calmed down after 30 minutes. Finally I managed to get him to sleep at 10pm.
Platelets have just finished infusing as I type, as has his ambisome iv. We were waiting on the blood to arrive to infuse over the next 3 hours but a mix up with the order means it will be in the morning now.
Hopefully tomorrow he will wake with a smile!
Dan arrives tomorrow afternoon and I will head back for another weekend in The Shire.
Day 21…please be good to us all xxxx