The last few days since we left the JR have been lovely. Herbie has been on top form and we finally started to get into the swing again of being a family of 6 in the summer holidays.
I won’t lie, reading about everybody enjoying sunny weeks abroad or by the sea in this country did make me sad that it was once again something we couldn’t do. Even days out are impossible. The summer holidays are flashing by and to me they feel like I haven’t started them yet.
Being at home, as great as it is, is not without it’s glitches. Firstly there is the feeling of Groundhog Day . Every day mirrors the one before. Medicine times rule your life. Meds are 8am, 1pm, 3pm, 6pm and 11pm & Community nurses come daily for a few hours leaving time from 8am -12.30 and 3-6pm to do anything.
Another problem is acclimatising the children to being back together. Herbie is now a more demanding 5 year old, wanting his own way and expecting to get it! This is particularly difficult for Rufus, being only 6, to accept or tolerate.
However, despite all of this I know all of us would rather be at home which was why, on Tuesday, 6 days after we were discharged , T+95, we were gutted to be back in hospital for the 3rd time since discharge from GOS.
The morning is a telltale sign with Herbie. He wakes full of beans and if he doesn’t alarm bells sound. He woke complaining his tummy hurt. It seemed to get worse and he wouldn’t eat or drink. A hot water bottle was hastily filled and it was rubbish to see him laid out on the sofa obviously in pain.
A call to GOS helped ease the worry. We were to give paracetamol as he was afebrile , 36.4, and see how it went. If it happened a gain we were to call back.
The calpol did the trick and for a few hours he was happy although certainly something wasn’t quite right.
The pain returned and this time when I took his temperature I was sad to see 37.7. Now although it’s not a temperature per se , his temperature had not gone above 37 in the last 10+ days. Something was brewing.
Another call to GOS. We were to retake in half an hour and call back. In half an hour it was 38.1. Automatically starting the GOS protocol of TAZ/PIP starting and being given for 48 hours and line cultures taken. This meant going back to hospital for the third time since transplant. None of us were happy.
On arrival we were met by our nurse and then a doctor from the Acute Team who didn’t know him that well at all and a doctor from the ID team , who knew him very well, had made the plan with GOS but was on his way home.
Frustrated I had to go through everything again with someone who doesn’t know him but pleased our usual team had liaised with GOS and knew the plan.
So fast forward to today, day T+98. We are still in our local, despite GOS saying 48 hours on Tuesday, despite no abdominal pain since Tuesday evening, despite no fever since early Weds morning, despite nothing growing. The reason is that his CRP was 80 or something similar and had increased slightly since the day before. I am no medic but from conversations etc I know that CRP is a marker for inflammation and infection and is usually under 10. I also know that it lags behind the clinical picture.
Herbie is now so fed up with hospital stays, he’s becoming increasingly grumpy, shouting at doctors to get out of his room and asking everyone who comes in if he can go home yet.
Yesterday Dr Ed suggested time outside. Herbie was thrilled to venture to the park opposite that thankfully was empty. It really is so boring sitting in a room day after day especially if you have done that for approximately 16 weeks so far this year!
On our return it was confirmed that we would stay again last night which made everyone feel flat. To cheer Herbie up we waited until 9.30pm when most of the ward were asleep and headed to the , normally out of bounds, outside playroom.
Herbie enjoyed being able to go there once more.
Sadly another child arrived and although the parent said they would stay in the inside playroom Herbie became anxious that he might come in and he might ‘get sick’
Back in the room we amused ourselves with games and iPads
And some Ninja exercises apparently!
Finally I persuaded him that sleep might be good, it was midnight!
Today we are just sitting here waiting for news, will bank holiday be spent in hospital or at home?
The wonderful Play Specialists here make life more manageable for us both. Today he was allowed to have the first go on a new acquisition of a motorised tractor. Grace and Sam arranged for him to take it down the back corridors and in the Community Paeds outside area. He had a fab time!
They are also fundraising for more resources and asked Herbie to feature on the poster! He was thrilled!
In other related news, it has been decided that I can’t go back to work in. September despite really wanting to. I can’t offer assurances that I will be there permanently yet and that isn’t fair on my colleagues, the new children or Herbie and my family. I am very sad as I miss teaching so much but I was also relieved that my wonderful colleagues took the decision from me. It was one less pressure.
Herbie continues to get gifts, post etc.
Another wonderful holiday letter from Hope, presents for both Herb and Ru from Old family friends Diane & Derek and from Texas, a parcel containing a plethora of goodies and this amazing tshirt from Try and her family. The tshirt is from Counting on Hope, https://www.facebook.com/CountingOnHope.
Donuts from Vic & family!
One thing we are not short on is love, friendship and support!
Is he going to be out for bank holiday weekend?
I hear shouts of
“Oh no he isn’t!”
“Oh yes he is!”
I really feel like we are living a pantomime!