Roller coasters , roundabouts & up and down horses.

T+8 started with a bang at about 2.30am as Herbie spiked a temperature of 38.7 and needed calpol via his Hickman line. Then suddenly another new machine was added
and he was having fluids via his PEG as he hadn’t taken on board enough fluids. Each child has a fluid intake target, Herbie’s is 1.5 litres per day but some of that is made up of the iv’s so we aim for him to drink a litre. This hadn’t really been an issue until yesterday with the sore throat. So he was given 250ml of fluid via the peg whilst he slept. The downside of this was he woke at 3.00am and again at 5am for a wee. At 6am he spiked another temperature and Ella , his nurse for the night, said that the doctors had prescribed another antibiotic to try to knock whatever it was on the head ASAP and that he would need an NPA in the morning and bloods had been taken for cultures already. To add to this disturbed nights sleep around 4am the urgent alarm sounded around the ward and there was a lot of running and raised voices heading into our neighbours room, lights went on in there and I heard the mum yelling. It was horrible, I lay there in the dark , listening to Herbie’s fast breathing and snotty nasal noises and wished this was all a dream and I would wake up at home.

Things settled down quickly next door and sleep resumed. I woke at 7.45am and left Herbie fast asleep. We had Rehka and Lauren again today and Herbie was happy until he heard about the NPA.
We decided to do it before breakfast. Rehka took the ‘you do it for me’ approach with him which did help initially but in the end he just had to be held down again and he wasn’t best pleased. Results take about two days, although they were marked urgent but we will see.
He looked pretty pale and dark around the eyes but he ate his Frosties and drank some milk and juice although no where near the   volumes he had been the last a couple of days. Once bathed he really perked up and we read a book and played with his Moshi figures and I let him open another of Sam and Hannah’s gifts from yesterday. He opened Top Trumps yesterday and today he got two fab books.


Thank you Hannah & Sam
Thank you Hannah & Sam

Herbie said he felt a little cold after his lunch but he was still chirpy. He didn’t eat much though. He put on his new GOSH hoodie to give it a test run.
But slowly he began to deteriorate. He said he wanted to play Moshi scenes on the bed so we started some but soon he asked to go to sleep.
He slept then for quite a few hours and woke very hot, 39. So more paracetamol and another water bolus down his peg to help his fluid intake. I also tried to get him to drink apple juice. The result was that he vomited all of it up!
A cool bath, a fan and new bedding was required.
The doctor came in and told us that they would give him 24 hours on the antibiotic and take more bloods should he spike again to see if he needed a different antibiotic.
She reassured us that this was nothing to worry about, was to be expected etc etc. I know this, I have been waiting for it for days but it still felt absolutely awful today. Even Herbie commented on how it felt like a different day to all of the others!
He climbed back into bed and snuggled down and that is where he is right now as I type. Sporting an impressive 40 degree temperature, fan on, covers stripped back…it’s going to be a long night!
Today we have missed Lily’s fourth performance with Rock Revolution, she was playing at Witney Music Festival. I hate that we are missing big events in our children’s lives.
Rufus showed us via FaceTime his gap where another baby tooth had dropped out and the school rabbit he had as he was awarded star of the week and put in the achievement book at school.
So proud of our other three and the way they are keeping it together.
It’s hard seeing everyone enjoying a bank holiday weekend, plans for half term, off on holiday etc knowing that not only do you have no such plans but you won’t even be with your family.
So now to the title of today’s blog entry.
A roller coaster ride to get here, almost 3 weeks on the calm and leisurely ride of a roundabout and suddenly the up and down horses!
What will T+9 bring? I want the  roundabout please…I’ve never been a big fan of gut churning fairground/amusement park rides!

Oops almost forgot the blood results.
HB 87 closer to transfusion number now of 80
WCC 0.75
Neutrophils 0.70
Lymphocytes 0.02
Platelets 77 dropped quite a bit but still well out of transfusion target of 20

4 thoughts on “Roller coasters , roundabouts & up and down horses.”

  1. You are in our thoughts, prayers and hopes! This is one bank holiday weekend, half term, holiday separated …for a lifetime together! If only all of your supporters could take one hour away each I know they would, as I would! You are all so brave…keep at it, bring on T+9 might be one of those good days! X

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