When we first started seriously discussing transplant with the professionals one thing was made very clear, eating would probably be an issue and that he would need to be fed during transplant via the PEG or using TPN via the Hickman Line. We were also told to expect that he would go home on milk feeds. Up to today we have avoided TPN , had literally a week of milk feeds at the most and today eating went into steroid driven over drive!
Herbie slept in until 9.30am and woke as I started out of the bedroom door to head for the kitchen to get my first cup of tea of the day. He sat bolt upright and exclaimed “bath, now!” His urgency and expression told me that my cup of tea would have to wait!
As we finished the bath and I was busy covering him in the Tacrolimus cream prescribed to help ease the rash we heard the nurses come into the room. Herbie was thrilled to see Nicola and Hayley, two of his favourite nurses, but Hayley who had left for her fortnight off and said tentative goodbyes, was surprised to be looking after us on her first day back.
Something I am not sure if I have mentioned before in the blog, hospital name bands. Herbie refuses to wear one and always has, in Oxford’s Jr and in GOSH. Yesterday, after 8 weeks here and an agreement that he could have the band blu tacked to his bedside table, we were told that orders from on high were that he had to wear one. I told them they were welcome to try but I knew it would be pulled straight off. It was and so they arranged for medical photography to take his picture today to have on his notes. I signed the consent and the photo was taken before his Peppa Pig porridge was even cool enough to eat!
The rash was definitely retreating, although still very much in evidence. The doctor arrived and agreed it was looking better but was a little concerned that his back was still fiery so thought she may up the steroid dose temporarily.
We spent the morning listening to music, playing games on the iPads and making loom bracelets! (Yes I know I am addicted, but seriously I find it relaxing and it definitely whiles away the hours in here.)
Amy, the play worker, arrived to see if Herbie wanted some company. He did (he loves Amy!) and so I headed out for 45 minutes. I headed to the Starbucks in Southampton Row and had my cup of tea and checked my messages and emails whilst Neil Young playing “old man” spilled from the speakers around the shop. I can’t hear even a note of that song without thinking of Dan. That song just transports me back to the days when we first started seeing one another and I found myself really missing him. I know he will read this and say “soppy” but it’s hard when , as a couple who spend lots of time together , you are forced apart, catching a few hours each week as you hand over the baton in this marathon relay.
I returned to Robin Ward.
The post arrived, a lovely couple of cards from Gay. I loved reading about how imminent her first grandchild is. Herbie loved his clay buddy and I was lucky to get a Costa card. Thanks dear friend x
Herbie spent the morning constantly hungry and asking “what’s in the covered? ” (translation what’s in the cupboard) and when I nipped to get a cup of tea he managed 3 packets of crisps. The doctor said he should try to cut down! I decided to go out later to try to find other snacks. He can’t have so many things he likes.
Amy came to let me know that she had called Rays of Sunshine on our behalf as they had sent free family tickets for Alton Towers for this weekend but obviously we can to. Amy said they will make a note that he can’t have these treats until he’s able to go out in public again in about 6+ months. Herbie was thrilled to know he won’t miss out.
Lunch came, jacket potato and beans …he devoured it but claimed to be still hungry ! Thankfully Jess, his new teacher , arrived to read and make pirate treasure so I got to escape to Waitrose to get much needed supplies and a few things for snacks.
When I returned he was already nearing his fluid target, which is still 1500ml, and also…hungry!
Luckily, albeit it odd, dinner comes at 4.30pm! It was another favourite and once again devoured, as my mum would say “if there had been a pattern on the plate he’d have licked that off too!
Hayley left the Blood results
HB 99 (brilliant!!)
Platelets 165 (whoop de do!)
After his two iv’s, Amikacin and Micafungin we headed to the park. As Herbie left the ward he saw the nurses and HCA’s coming on night shift in handover with the head of day shift. Despite being in a seminar room he stood by the window in the door until Holly spotted him and they all beckoned for him to come in. There was lots of cooing over him which he lapped up and he told them all “I’ve got my eye on you!”
We headed to the empty park..8pm is a great time to visit. He had another good time but it was sadly cut short by his need for the toilet. As everything that comes out is weighed and examined we had to head back.
But we did nip to the vending machine later by the lagoon and Herbie collected his kit kat , had a look at the charity desk
and then strolled back to the lifts to go back to his room.
He arrived back, got his pj’s on and had a kit kat, yogurts , cheddars and another 370mls of fluid. This meant he was just shy of his upper target of 2000. I finally got him to sleep at midnight.
I can go to bed feeling a little more relaxed myself tonight knowing that my girls are going into a house and form that they are happy with in September when they start secondary school and that Herbie’s skin is looking better. I’m off to sleep now but I have Raheema’s mum’s lucky leather charm under my pillow as always to night.
Love to you all