Category Archives: Pain management

First call to the BMT reg.

T+67. Day 12 at home.

Tomorrow we head to GOSH for our first post BMT clinic. We have spent so many hours in Safari Outpatients in the last year but it does feel good to know that the actual transplant that we have discussed at all the previous appointments has taken place and now it’s about protection as the immune system recovers.

Herbie has continued to enjoy being at home and with school out we have all felt the benefits of lazier starts to the day. That said, meds are still due each morning at 8am and guitar lessons, Rock School etc continue throughout the holidays and of course we have the daily community nurse visits for the iv’s.

Ele the community nurse chatting with Herbie during his infusions.
Ele the community nurse chatting with Herbie during his infusions.

Herbie had what looks like his last letter from Hope this week. He was a little sad but understood why she doesn’t need to write to him any more. “I’ll miss her” he said.” She was fun.” Thank you Hope for all of your lovely letters and gifts. You have really helped Herbie through the hospital stay and he always looked forward to your letters xx thank you to your mum too.

We still have concerns over the amount of iv Amikacin poor Herbie has to put up with and had planned to discuss this at the clinic appointment. However yesterday our concerns were heightened as he complained of stinging when he had a wee. Obviously the first worry is an infection but he didn’t have a fever and seemed well. Later that evening we noticed a little blood after he had been so I made my first call to the BMT registrar.

When I finally got hold of a doctor I was relieved that it was Mark, a doctor we knew. He said that without seeing him it was hard to know the cause but he didn’t feel it was too worrying and said to get him reviewed by the nurses tomorrow and get a wee sample taken. We were to call the local hospital if he got worse or developed a fever.

I continued to take his temperature but it stayed totally fine and he slept well through the night.

We have really noticed Herbie’s hair growing in the last few days. The photos don’t do it justice. Although I still refer to him as my little Rice Krispie , Lily calls him her baby pineapple!
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Most of the time he is totally fine with being bald but every now and then he will mention it. He was happy to know it was growing. I also noted that whilst he was doing bits from his scrapbook for his holiday homework he had to draw himself. “Shall I do myself with or without hair?” he asked “It will be grown won’t it when I go back to school?” I said he could choose to do himself with or without. He said “but is it a lie if I put hair and I haven’t got any?”
I managed to persuade him it wasn’t.

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Today we have taken his big sister Lily to the JR in Oxford for her check up. Funnily enough all of the doctors stopped to ask how Herbie was and even Peter and Caroline the phlebotomists wanted to know! It was actually lovely seeing all of our regular doctors, nurses etc again and even better as Lily’s appointment went really well.

When we got home the community nurse, Morag, had tested his wee. Blood (obviously!) and protein present but rest negative. I guess GOSH will sort him tomorrow.

He went out, despite the glorious sunshine and heat, to lay in his hammock. The trouble was that Daddy was in there already!
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We managed to get him to reach almost the top end of his fluid target which is 2 litres today and this eased the other problem.
Off to GOSH in the morning…I will return tomorrow evening with an update!

BMT fact of the day …
The recipients blood type eventually changes to the donor type. That means if you had a blood type of A+ prior to transplant and your donor had a blood type of O, eventually your blood type would become O. It may take several weeks, possibly months for your original blood type to disappear, but eventually it will. In Herbie’s case this doesn’t matter as he is O- and so is Rufus so he will stay the same.

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Looking good, feeling fine…

T+20, are we really only a day away from 3 weeks post transplant? It’s amazing that it’s gone so fast really. The day started with a rather sleepy & grumpy boy and I was worried that we were in for one of our ‘not so good days’. He climbed into bed with me and seemed tired.

I went for my shower and he grumbled that he wanted his bath and he wanted it first etc, etc. I managed to get him to agree to the normal routine. After his bath I tried to remove the plug, it had come away from the chain over a week ago and had been fine but today I just couldn’t remove it! It was well and truly wedged in! I vowed to spend the day trying to shift it.

We decided to carry on with the Hama beads for a bit and then the post arrived. Much excitement at the three packages left in the ante room by nurse Lucinda!
First up was a package that Herbie already knew was from Lily & Sam based on the printed label! He was suddenly much brighter. Lovely pictures from the terrific two, a Costa moment for Dan & I and the most amazing bunting from their talented mum, Cathryn. If you don’t know her work please visit her website.
http://www.cj-art.co.uk
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Superhero bunting courtesy of Cathryn at www.cj-art.co.uk
Superhero bunting courtesy of Cathryn at http://www.cj-art.co.uk

There was also a package labelled as below
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containing Adventure Time badges, he was thrilled and added them to a hat! Trouble is the sender didn’t let us know who they were?
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The last package contained lots of lovely picture from his class back home in North Leigh. It really made him smile.
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I can not express enough the impact that daily post has on his well being and mood! From postcard to parcel, it’s all so very much appreciated and I am certain has helped him deal with the last four weeks away from home. Thank you x
Helen arrived and he seemed reluctant for me to go. I had to promise to stay in the parent room on the ward, which I dutifully did (after all he can see me leave the ward from his room!)
I chatted to another BMT mum, her son is about two weeks ahead of us. They are also being featured in the GOS series. It was nice to chat. I returned in time for Helen’s departure and the arrival of lunch!

Herbie is still managing to eat and drink quite well. After chatting to other BMT mums this week I have realised that he is doing very well as he has so far avoided TPN (total parental nutrition) which is given 24 hours through the Hickman Line meaning you are always hooked to iv. One child is clinically well enough to go home post transplant but won’t eat or drink so has to stay in hospital!

GOSH has lots of volunteer helpers who come and sit with the children whilst parents take a break from the confines of the room/hospital. It’s quite nice for Herbie to meet different people. Today a new (to us) volunteer came and offered to play for an hour. I was instructed again by Small that I was under no circumstances allowed out of the ward…the Costa card will have to wait until tomorrow when Dan arrives.

I returned an hour later to find him deep in conversation with the volunteer, an ex hospital school teacher apparently, about his photos and favourite Moshi etc. He was happy and content.

When she said goodbye we set our minds to finishing the Hama bead Minnie Mouse. It was a good joint effort, now we have the arduous task of keeping it in one piece until tomorrow when Amy the play specialist can take it off and iron it!
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Blood results were in and showing that he needed both platelets and blood as his levels were low.
HB 79
WCC 2.19
Neutrophils 1.52
Lymphocytes 0.13
Platelets 0.22

Neutrophils had dropped considerably but this was expected after the GC-SF boost two days ago.they are still 1.52 which is higher than they were on 31st May after the last GC-SF Which I would hope would mean the levels are rising!

A work man finally had to be called as no matter what we did the plug wouldn’t come out of the bath. The guy arrived and Herbie said “it’s stuck, you won’t get it out” to which he replied “ahh but I have a secret weapon” whilst holding up a plunger! Herbie pulled a face and said “well it’s not so secret now you’ve shown us!” Thankfully, secret or not the plunger worked and the bath water finally drained 7 hours after the bath was over!

The doctors came to do ward round whilst I was in the parent room and told our nurse today, Maxine, that all was very good so no need to disturb me! Another drug converted to oral today, MMF , which runs over 2 hours three times a day so that frees up a few hours in the day. It is also one of the last drugs of the day usually finishing at 1am so that will be a pleasure to lose! The nurses seem amazed that he is dropping iv’s already and so are we!

Herbie had a great day, drinking just shy of his litre target and eating well too. He really does like the food here. Sadly just before bedtime things went a bit crazy. The milk feeds have left him with a rather upset tummy and now a sore bottom which was so sore at about 7.30pm that he was literally writhing and screaming the place down. It was awful. Maxine sent in some cream but it seemed to sting and he screamed more even though the skin doesn’t appear to be broken. Oramorph was given next and this started working and he calmed down after 30 minutes. Finally I managed to get him to sleep at 10pm.
Platelets have just finished infusing as I type, as has his ambisome iv. We were waiting on the blood to arrive to infuse over the next 3 hours but a mix up with the order means it will be in the morning now.
Hopefully tomorrow he will wake with a smile!
Dan arrives tomorrow afternoon and I will head back for another weekend in The Shire.

Day 21…please be good to us all xxxx