T+18 was here and with it the milestone of four weeks in isolation for Herbie at Great Ormond Street. I remember when I was first told that he would be in hospital for a minimum of 8 weeks I just couldn’t comprehend it. Now we are halfway through those 8 weeks already! Of course we know that the figure they gave is a guideline, it could be more but we have managed the first four and honestly it has been ok!
When I woke this morning to the sound of a pump alarming. Just for a moment I was surprised that I was back at GOSH. I was honestly thinking “why am I here?” Then of course reality dawned, I looked at the time, saw it was early, saw Herbie was asleep and decided to try to sleep more too. I was rather unsuccessful as about 10 minutes later Kitty Face Timed us!
Herbie was obviously sleepy from his late night last night so I let him sleep a bit longer whilst I showered. It’s nice to get some of my things out of the way before he wakes so shower, new clothes and strip my bed down and wipe down the mattress are all ticked off before his eyes open!
When he finally woke he asked for breakfast, coco pops and milk please. I headed to the BMT kitchen, got his and then my breakfast (from a different kitchen) and returned to find him still looking sleepy. I weighed him and measured his girth as we do every morning and then let him eat.
He’s been having the milk feed over night for a few days and water boluses to top him up and this has left him with a runny tummy which has upset him. I explained that if he ate and drank more he might not need the extra feeds. A bowl of coco pops and milk went down a treat. He was still tired but keen to get in the bath when Helen, the hospital school teacher arrived, an hour earlier than usual. He gave me the “Herbie scowl” when I told her that would be fine. He demanded I dressed him before I left, which was a reasonable request!
I headed out into rainy London and found ancosy armchair in Costa to pass the time, stopping briefly at a stationers on the way for more lovely white board markers to pimp my white board!
I returned an hour later expecting to find Helen in the ante room just leaving but instead I found Jo, his nurse for the day , and Rose the HCA busy doing a full set of obs on him and Helen long gone. Turns out he had said he felt unwell so Helen had alerted the nurses and then packed up. As Jo explained what had happened she said ‘so we came to do a full set of obs but everything is perfect.” It was then I noticed Herbie giggling!
The doctors came in, Olga was pleased to see him and said that he was doing well. Apparently they have finally got a positive culture from the Hickman Line which showed that was the cause of the fevers. She said CRP was still coming down and they were happy it was under control. She also said that he would have more GC-SF tonight to try to keep the Neutrophils above 1 until the CRP was back to normal. Apparently our first bloods for engraft had been taken, she said they wouldn’t be back for a few days at least and that we were not to be disappointed if we did not have 100% engraft as it didn’t mean it wasn’t working. Finally , Olga said that they would begin to replace some iv’s with their oral counterparts, very slowly but in readiness for when you go home!
Lunch arrived, he ate well and was also making good progress with his drinking.
After his sandwich he fell asleep again and stayed that way for almost 3 hours. After the chat with Olga, the doctor, I was keen to see what the blood results were. We had hoped to see them rise a little today, especially now he would have GC-SF as a boost later this evening.
HB 88 (rising by itself!)
WCC 1.16 (rising!)
Neutrophils 0.73 (not above one but rising BEFORE GC -SF)
All looking very promising!
The postman arrived, much to Herbie’s excitement!
He was thrilled to find, not only a letter from his letter writing friend Hope all about her birthday, but a wonderful hat , made with London themed fabric and some chocolate bars and sea creature pictures that we stuck on the window. Thank you Hope and thank you Tanya. The hat was so apt as Herbie loves to play a game that he invented called “‘ello Guvnor” when in London which is along the lines of ‘yellow car’ but involves shouting “Ello Guvnor” every time you see a London black cab or “yellow Guvnor ” if it’s a yellow one!
He was also thrilled to receive a Moshi Monster school set from Linz, Richard, Sophia and Louis (and I had some yummy chocolate and some lovely messages from our class)! Thanks Guys xxx
Postcards came from Auntie Lucy, Uncle Joffy & cousins Jude and Charlie from Croyde and also from Toby and Lucy a fabulous postcard of Ben Nevis. Both now proudly displayed on the wall alongside more correspondence from Grandma’s dog Flossy!
The fab news is that Herbilicious managed to drink to his target today and eat very well too so no water bolus or night milk feed required tonight. Yippee!
Herbie drifted off to sleep after telling myself and his nurse for the evening ,Hayley, to stop chatting. Hayley confirmed for me that the infection that caused the fevers was found on May 30th in the white lumen (kenicky) of his Hickman Line.