Don’t mention the ‘H’ word!

I woke and found a rather warm boy next to me! I knew, long before I knew officially , that he was temperature hot and gutted just isn’t a strong enough word for how I felt. I had gone to bed feeling so happy and positive and woken to this complete change!

He had a temperature of 38.2 and the student nurse said she would return in half an hour to retake which she did, 37.5 apparently! I was happy but not convinced as I noticed when the heart rate was taken that his was quite high which usually goes with a fever. When his nurse Maxine came in with meds I told her he still seemed hot. Temperature taken again , 38!
I knew it! No paracetamol given but bloods for cultures taken from the line and the doctor informed.

It was also the day for weekly tests, NPA and urine and stools!
Dan obviously not here and I knew the NPA would be tricky. Maxine came in when he was in the bath and then by the time she was back she had 3 minutes to meet the lab deadline. I grabbed Herbie, she grabbed the tube, he thrashed and screamed I held him tighter and thankfully Maxine got it done quickly!

The morning passed quickly and Herbie seemed to perk up and subsequent temperature checks were all 37.5 or less. Helen arrived and so did Dan so after a quick cuddle we stepped out to leave him to his school session and went to Costa for lunch (& breakfast for me!) and caught up. On our return we met the Doctor at the desk who said although he seemed pretty good, he had spiked a temperature and he said he felt a bit sick so she had started antibiotics although it could be one of the many viruses doing the rounds.

We went in and he seemed a bit miserable but he wasn’t hot. His tummy hurt he said but it seemed to just be he needed a wee! We were struggling with fluid intake as Herbie just didn’t fancy drinking so that by 1.30pm he had only had 450ml of his 2.2 litres! Gifts from home were much appreciated, thank you Auntie Lucy and Aunty Cathy and the cousins xxxx Angela sent a fab hat for future England matches and a gorgeous personalised cushion for me SF
Thanks everyone.

I went to get the blood results with Rosie, the ward sister.

HB 110 ( only 5 away from a normal range but obviously he had a transfusion)
WCC 6.09 (in normal range!)
Neutrophils 6.09!
Lymphocytes 0.24 (down on yesterday )
Platelets 76

Urea 5 (in normal range at last)
Creatinine 68 (still looking much better)

I was so excited about the neutrophils until Rosie pointed out that they will make more to fight infection and it was a big jump from yesterday. I said but surely even the fact they can make more when needed and mount that attack is good? She agreed it was and then said “you are in yellow precautions now, probably have been for a few days!
Whoop whoop, we are able to ditch our aprons (although the hospital staff still have to wear them on entering the room) but more importantly Lily, Kitty & Rufus can visit. This is very exciting although we probably won’t bring them here yet as the whole slapped cheek thing is too worrying. Bittersweet as always!

Rosie, the wonderful ward sister, was covering for Maxine whilst she was at Uni for a couple of hours. She came to administer an iv but found both lumens on his Hickman line blocked. She managed to get them going again thankfully & let Herbie give his medicines via the PEG which he loved. Especially his blood red rifampicin!

Administering his own meds via his PEG.
Administering his own meds via his PEG.

She also said to me when I commented on how annoying it was that every time our discharge was mentioned something cropped up “I always say never mention the H word as this always seems to happen”

He seemed so much happier during the day and stayed lovely and cool and was eating and drinking again. Maxine was joking with him about Rekha being on the night shift and he was giggling and loving the whole thing. He watched a little football with Dan and they looked up Brazil in the lovely map book he was given a few weeks ago.


Around 7.30 he was looking good so it was a surprise that at 8.30 when we went to weigh him before bed he said he was chilly. I was worried as he always complains he is cold as his temperature rises quickly. We weighed him but the weighing chair was out of battery so I had to pop out and swap it. When I returned he was snuggled in bed and it was a struggle to get him to move!
He was shivery as he sat in the scales. He weighed 22kg, he had started the day at 22.05kg. He was however nearly 600mls down on his fluid intake.

He climbed back into bed as Dan hugged him and said ‘see you Friday’ we said goodbye and by the time I returned to the room with my cup of tea I knew, despite him being asleep, that he was hot. Rekha arrived with his meds and was disappointed to find her sparring partner asleep. She took his temperature , it was an impressive 39.2. So she disappeared off to get iv paracetamol.

He responded very quickly to the paracetamol, when Rehka returned an hour later he was a cool and normal 36.2. Rekha remarked that this seemed like another engraft fever which eased my mind a little.

I am sitting here in the quietness of room 2 listening to a pump whirring as it pumps water slowly via the PEG into Herbie’s tummy to top up his fluid intake and to the crying baby next door in room 1, who has only recently had her cells in the bid to prevent a relapse of the ALL she suffered and the ever present hum of the filtered air conditioning .
I hope T+32 is a little better temperature wise for Herbie. Sleep tight everyone and remember…


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