A tiny taste of freedom


I’ve been ‘on duty’ now for 10 days , it feels longer. I don’t want to leave Herbie this weekend but I know that I need to be refreshed and I’m so desperate to see Lily, Kitty and Rufus.
I speak every day at least twice via FaceTime to Kitty, probably once to Lily but Rufus is either off somewhere else or won’t speak because he gets sad. Tomorrow I get to go home and be with them over the weekend.

The day started well, Herbie was bright, cool and keen to start his day. I went to get his breakfast requests from the BMT kitchen and on my return, one of the student nurses, Rebecca was doing a set of obs. Temperature was 36.9, BP 98 and heart rate and resps good too. Herbie took one mouthful of his cereal and Lyn, our nurse for today, buzzed to say ‘ ultrasound scan now please’
Herbie’s second adventure out of the room in 6 weeks. He was very very keen to go and ran off down the corridor almost bumping into Doland and Catey (the film crew ) talking to Paul Veys. He greeted us with “are you still here?” so I explained about the temperature spikes and he said “just a minor blip”
We arrived in X-ray & ultrasound and the isolation booth was being used so we sat on the unused corridor to avoid meeting other children. Whilst waiting a lady from X-ray came and said, “oh we need you too so come to us first!” The X-ray was over and done with quickly and then back to ultrasound. By now Herbie was needing a wee. This wasn’t an issue in itself but during BMT everything that goes in is recorded and everything that comes out is weighed and recorded too. This meant I needed a pot! Thankfully the ultrasound lady found me one but it meant I had to carry it back through the hospital to the ward hoping nobody banged into me and I didn’t trip!
Herbie shouted and cried a lot through the ultrasound, he hates them so much!

Small's mini adventure
Small’s mini adventure

We finally got back into our room around 11am and Herbie needed fresh breakfast as milk products only have a short life in the room & anyway his coco pops were soggy, so off I went again, like déjà vu!
When I returned Helen was there ready for his lesson! I went out to Costa and had an early lunch.
When I returned Herbie was tucking in to burger and chips and seemed to be enjoying them!
I nipped out to the desk and collected the blood results.

HB 96
WCC 3.77
Neutrophils 2.81
Lymphocytes 0.38
Platelets 37
CRP needed repeating
Urea 4.3 Creatinine 44 all back in range

We watched TV and played a few games and listened to some songs and then at 1.45pm I started to gather my things to go down to the activity centre by the school for a relaxing free facial, organised by Helen! I was really quite excited and very much looking forward to my 30 minutes of pampering.
At 1.50pm the Doctor (Liz) arrived and I started to worry that I would miss my appointment that I been so looking forward to.
Herbie continue to scowl and pretend to throw punches at Liz.
She told me that the scan looked ok, if not a little better and the chest X-ray looked pretty much the same as previously. She said he was a mystery! She also hoped the CRP would be right down today.
Herbie continued to get more and more cross and aggressive and shouted that I wasn’t allowed to go for the facial. I decided that I wouldn’t as he was so upset. The doctor left and the nurses stayed in the room to administer iv’s and after some crying he said I could go so I ran down to the room and thankfully was not too late.

30 minutes of me time was just perfect! The facial was relaxing, the smells gorgeous and the music calming. I came away feeling refreshed. I was quite sad to bump into the doctor who said there was possibly a little worsening in the lungs so they were ordering a CT to be sure. This made me feel a little deflated.

After calling Dan I returned to Herb who was happily playing. He had a parcel from Caroline and Mamood with a great sticker book and awesome Moshi 3d stickers.

The CRP came back at 202. Still high but going down.

Herbie settled down with an England hat and we were given bunting by Rosie the ward sister. But it was all for show because Herbie had downloaded a new Moshi App and wasn’t really interested in football!


As I type we are 2 and a half hours away from being 48 hours fever free.

Keeping everything crossed xx

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