Rainy days , special visitors & routine

T-6 : So the day thankfully started a little later and it was a good job after my late night!
Time had come to get the routines into place. The primary school teacher in me delighted in the whiteboard in our room and the lovely dry wipe markers on offer…time to make a list! image
Breakfast is a whole routine in itself! BMT patients have their own kitchen on the neighbouring Fox Ward. All BMT patients must have their meals prepared here. To enter this kitchen you need to leave your room, wash your hands, go out of Robin ward and into the hand washing area of Fox Ward, wash your hands, enter the ward, go the kitchen. Wash hands, prepare the food, wash hands, leave the kitchen, leave ward & enter hand washing area and (yep, you’ve guessed it!) wash hands. Enter Robin ward, enter airlock room before Herbie’s room and (drum roll please…) wash hands before entering the bedroom! Now Herbie can eat! My hands are so sore already despite the cream! Our breakfast is to be prepped in the parent kitchen on Robin Ward after getting Herbie’s as trays can’t go from one kitchen to the other.
After breakfast was ticked off the list we moved on to weighing the small boy for the first time today…he clocked up 20.3kg. Dan did his now routine oil bath & then moisturised him all over before measuring his girth, putting on 2 new baggies for his lines & a set of new clothes. Beds were stripped & new bedding collected & finally we could settle down to a jigsaw…Moshi Monsters of course !

Jigsaw with mummy
Jigsaw with mummy

The doctor came in to check Herbie, he was very pleased with him so far. Today he started an anti fitting drug as tomorrow he starts another stronger chemo which has the potential to cause fits. Fingers crossed we won’t witness that side effect!
We went to have our lunch in the parents room and got chatting to another BMT dad whose son is 11 days post transplant. He was very reassuring to talk to. As we chatted to him, 3 very familiar faces arrived on the ward. Two of our current community nurses from Oxfordshire with one ex community nurse had popped by to say hello! It was so lovely to see them and Herbie was thrilled despite being behind a screen and using an intercom to chat to them.image

Talking through the intercom is fun!
Talking through the intercom is fun!

We are so lucky to have such a caring team of nurses back home.
After they left, I ventured out to the shops, managing to dodge the downpours, to get supplies whilst Herbie had his iv’s.
On my return we had some fun FaceTime chats with Auntie Lucy, Uncle Joffy, Jude & Charlie and then our three lovely babies that we have left behind in Nor Lye!
I can’t put into words how much I miss them. We speak a few times a day by FaceTime but as Rufus said…I want to see the people not the FaceTime people!
Herbie continues to be bright and cheeky.
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He really is lucky that so far he has avoided any side effects. One that may come is a sore mouth so Dan is on mouth care duty 4 times a day!

Mouth care happens 4 times a day!
Mouth care happens 4 times a day!

Herbie spent the rest of the afternoon listening to music from Band of Horses , The Cure and
Then he had a sing along with his Nick Cope collection. The nurses were laughing when they came in to see him singing along to the Grease soundtrack! He finished the evening putting up Moshi Monster stickers and watching Eurovision before finally giving in to sleep.
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So what will Day T-5 bring…fingers crossed nothing more than my three other babies to London…can’t wait to squeeze them xx
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