T+28 : Four weeks since transplant.
I will be honest, I went to bed last night and woke up this morning under a grey cloud. I just couldn’t shake it. The blood pressure thing, the kidney thing, the weight thing, it was all such a downer yesterday, plus having Rufus with slapped cheek, Dan feeling a bit grotty at home.
So when I saw a small round face grinning at me with his bald little head and shining eyes I thought, why am I down? I’m in the right place, things are essentially good, these minor setbacks are all part and parcel of transplant.
Herbie knows how to lift spirits, we did our usual music to bath by and as he got out he said ” Don’t Stop?”
I put the requested track on and his little face lit up, I recorded him singing along to a bit of it but he actually sang to the end and suddenly the world was a little less grey, a little sunnier and a lot more smiley!
I think as adults in hospital with your child it is so easy to become bogged down with the detail that you forget the whole picture. The whole picture doesn’t have to be perfect to be beautiful or inspiring. Even the great masterpieces I’m sure have flaws in detail. I was hung up on the details, kidney function, blood pressure, weight but when I stepped back again to admire the whole picture what I saw was my beautiful, bouncy, happy and actually healthy looking 5 year old who considering he is going through a Bone Marrow Transplant, has had chemotherapy, infections, etc etc looks FABULOUS!
We had the same nurses as yesterday , Sandra & student nurse Nicola. I asked about the blood pressure over night and apparently it was good so I was happy.
However 30 minutes later it was time for a set of obs (blood pressure, heart rate, SATs and temperature and respiratory rate).
The BP was up again 148 so Nicola asked Sandra to check. She made it 138, better but still high. I tried to remember “the bigger picture”
I also had to weigh Herbie, his weight was 21.3.kg, down from yesterday a little so Doctors a little happier.
Happiness was just around the corner as it was POST TIME! Yippee! Let me tell you even I get a kick from watching him opening the post!
First to be opened was a package that Herbie knew was from “Lily & Sam, Lily & Sam”! Beautiful pictures of minions for Herbie from Lily & Sam & I’ve told you before about their talented mum Cathryn Jeff (please please visit her website if you haven’t already http://www.cj-art.co.uk ) but this was just fabulous!
Brilliant superheroes with interchangeable heads, everyone that saw them, nurses, doctors , play specialists etc thought they were AWESOME! (So did we)
Next was another thing that Herbie looks forward to each week, a letter from Hope! She told him about her week and she said there wasn’t much to tell but we thoroughly enjoyed reading and looking at the photos. Herbie hopes that you do well in the local baking and craft competitions this weekend.
Then a package from another school friend Isla. Herbie’s eyes grew wider and wider with each item that he took from the parcel. “Wow Isla does choose good stuff!” He said pulling out a fabulous Moshi monster Diavlo light “she remembered that Diavlo is my favourite” he added. Moshi mash ups, Lego mini figures, mosaics and a lovely handmade card.
Thank you Isla (and Marie, Lauren and Darrell).
To top of a fabulous post day Herbie opened this brilliant book from Sherilee & the kids.
In the photo he is showing his favourite page “because it has a “real plastic gold paper gold real doubloon in it mummy” (hehe)
We must also say thank you to Ofelia and Nicole who messaged to say the Moshi cap was from them yesterday and to Abby and Woody who I understand have left a lovely card and treat at our home xxxx
At midday one of Herbie’s favourite GOSH volunteers, Julia, arrived. She enjoys having a session devoted to Moshi Monster madness twice a week and Herb loves it too. This allowed me a brief time in the glorious sunshine and a catch up with our community nurse team. It was easy to feel a little anxious again as I explained the problems with the kidneys etc and when I returned to the ward I was cross that I had missed the consultants on ward round but I was told they would come back.
Herbie had had a lovely time although the fabulous start to his fluid intake (650mls by 10am) had not really been built on due to Moshi excitement.
BP was still raised but thankfully not as high as 160 as it was yesterday. A different teacher, Kate, came as Danielle was too busy today & she made a Father’s Day Card with Herbie for Dan on the ipad.
Then the doctor finally arrived. He told me how pleased they were with him and how well he looked. I laughed and said “he looks great on the outside but I know he’s not so great on the inside!” To which he replied “oh I don’t know, he’s pretty good on the inside too, 100% engraft and cell counts looking good!” So I said about BP & kidneys and he explained that Herbie’s kidneys had had a big iv overload since way before transplant even took place and then he was bombarded during transplant so his kidneys were no doubt tired. Having spoken to the relevant immunology/infectious disease teams it was decided to stop the Amikacin again as this is harsh on the kidneys and to restart Rifampicin, an oral anti micabacterial as of today. This meant one less iv and also, more importantly for Herbie, no finger prick today! Thrilled is an understatement! Both myself (and Sandra his nurse) were able to breathe a sigh of relief!. It is expected that with a high fluid intake to flush the kidneys and dropping the Amikacin that over the next few days Herbie’s urea and creatinine levels should start to decrease. Fingers crossed!
Blood results today showed the following
HB 81 (no doubt looking at a transfusion tomorrow)
Neutrophils 2.33 (4 days since GC-SF & still holding their own nicely!)
Creatinine 109! (Eek)
The news on the neutrophils, White Cell Count and Lymphocytes was great!
Herbie managed to spend the day mainly eating crisps, watching TV , drinking juice and playing his ipad.
Veronique arrived and came with Moshi’s and announced her birthday (she kept that quiet!). She stayed for a chat and then left.
It felt weird seeing a few of the other mums going home for the weekend. In many cases families do the same as us and the weekend is very much a Dad’s domain. I was torn, I would have loved to be home with my other babies, in my own house, in my own bed but I knew being here with Small was the right decision.
The room opposite and next door were both recently vacated and so they need a deep clean and swabs before anyone else can use them. I watched the room opposite being cleaned, it’s a mammoth job, I tried to get a photo through our windows as the cleaners wear what look like gas masks.
Someone new arrived for one of the rooms today, it’s hard seeing the faces of scared children and worried parents. It’s where you need to be for the superb care though. I chatted to a newish parent today whilst making tea who said Oxford Children’s hospital is amazing so why did we come here, I explained that a BMT only happens in a few specialist hospitals and Oxford can’t do them. Funny to watch coverage of that very hospital, our ‘home hospital’ on the news as I ate my dinner in The Lagoon as the story of Star Wars actor Harrison Ford being air lifted there was updated.
Norovirus continues to linger and as well as the deep cleaning of the vacated rooms the kitchen and drugs room were also done.
Herbie was happy to see Ella was his nurse tonight. She was his nurse the very first time he stayed here when he had his PEG put in. Once again it was 10.30pm before he went to sleep. BP , SATS etc etc all good, he sat up for a few sweet treats first
So tonight I am reminding myself again of the big picture, Ella talked about Nikki running through drugs and also training about the use of the peg. Something is definitely bubbling under ground re our exit.
Tomorrow we may see a story in our local paper The Oxford Mail about Superhero day and Herbie’s transplant . I hope Dan will text me pictures of it or it will be online. Finally an apology…I have been super tired this week, my blog has been a bit mad and some times bits have been garbled and missed out. I’m sorry, hoping I’m back on the planet now x
Day T29 tomorrow…almost 30 days since transplant and 3 days away from 6 weeks since we arrived!
Herbie made some interesting comments today. When I told him we would no doubt be on yellow precautions by next week and he could go out to the playroom in the evening he said “I think I will just stay here in my room until they say I can go home” then later I caught him looking longingly at the pictures on the door and asked “what are you thinking about?” “Playing with Sam and Lily and all of my friends and being home with Lily, Kitty and Rufus.” He was smiling the whole time.
Thank you for all of your messages of support and happiness at the first engraft news. It’s great but this really is only the beginning…