Category Archives: Play specialists

Taking the scenic route

Herbie had been really on top form since his last hospital stay and we honestly felt the best since transplant. Energy levels were great, eating well, drinking his target of 1600ml without problem and temperature staying below 36.5. We discussed regularly in the evening how things seemed on track at last.
T+108 came and I was greeted at 7.30am by a smiley boy, already dressed and on top form. I remarked to Dan how good it felt seeing him back to his old self every morning. Dan gave the 8am meds and headed off for a run. He has the 2014 Run to the Beat 10k for Great Ormond Street this month.
As soon as he had left Herbie complained of tummy ache. Now he does take lots of meds at 8am, 8 different ones, so occasionally he moans about tummy ache. I gave it half and hour but by then he was holding his tummy and quite upset. I took his temperature, 36.4, perfect, so gave him calpol for his tummy.
Dan returned from his run to find a little boy doubled up on the sofa, wincing saying “it really hurts, that calpol is rubbish”
I took his temperature, 37.5 suddenly…it felt like a rerun of the last time we were admitted. His temperature hit 38 and that, as we all know, automatically starts the admission and TAZ protocol (AGAIN) for a line infection. That means 48 hours in hospital even though I think everybody knew it wasn’t a line infection!

The timing of this admission was dreadful, the following day the twins were due to start secondary school, I still hadn’t managed to get shoes or trainers that would fit Kitty and Rufus started back a day later so we needed someone to look after him if we were in hospital.
There were many tears shed as I said we needed to contact GOS. However Herb just said “can I take Dogdog and my pillow please’
I was sad in one way that he’s resigned to going back in but happy in another that he wasn’t kicking up a fuss.

He slept on the hospital bed as soon as we arrived. He was very hot but once cultures were taken from his line he was given calpol. However he threw up and it was decided he needed it iv to ensure the temperature came down. His skin was getting very blotchy and Dan and I realised quite quickly that this was probably GVHD again. Our worry was that it was also in the gut.
The JR consulted with GOS and an ultrasound was ordered to see what was going on in there.
I had to leave to get back home to sort out the girls ready for Secondary school. Dan took him off for ultrasound, he was laid out on his bed, hot and asleep. I felt awful leaving but the girls needed me.

That evening Dan reported that the paracetamol had kicked in and Herbie was bright and cool and happy. The ultra sound was ‘unremarkable’ and nothing was a worry to the doctors. This was great news but it was agreed by all that this was GVHD rearing it’s ugly head again. This is annoying as Herb is in the lowest category to get it really, sibling matched donor, 10/10 match, same blood group so no changing of blood group, same gender donor!

Still, it was a relief that the ultrasound looked good and they upped the steroid again(we had just weaned that too!) to counteract the GVHD.
Once the temperature was gone he was ‘old Herb’ just a little blotchier!
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Still blowing raspberries at the doctors (and some poor nurses!) but always happy to see the ward play specialists Grace & Sam and Juliet the hospital school teacher!
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By the evening it was decided, in consultation with GOS, that if temps stayed away, culture were negative and GVHD under control he could stop the TAZ in the morning and could go home on Wednesday.

Day T+110
Wednesday arrived, the three others were all packed off to school sporting new uniforms and with much excitement and I headed to the JR again.
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I swapped with Dan, who went straight off to do some work, and arrived in Room 25 (yes we are in that room again!) to find it full of doctors! Herbie was holding court! The doctor in charge said that the iv’s were to continue, which was not what we had thought was happening, and that we MIGHT go home today! Grrrrrrrrrrr
They also wanted a repeat ciclosporin level as it was only 50 on Monday and it should be between 100-150. Ciclosporin is one of the immune suppressants and if levels go too low it can cause GVHD. However the level was taken almost 24 hours after the last dose given which is probably why it was low! Annoyingly though they only told us they needed a level at 10am, so his 8am dose had been given! This meant staying until 6pm.

Luckily Juliet came twice to do science and maths with him which he loved and she commented on how well he had come on with his reading etc since January.

Working with Juliet
Working with Juliet

Herbie continues to be blotchy but thankfully it isn’t getting worse or too itchy. It’s not pleasant to look at but he’s in great spirits. More importantly…he’s upstairs asleep in his own bed! Yes we are finally home again. Now I’m not a gambling person but anyone placing bets on when the next stop at the local might be? Herbie is just like his dad, never takes the motorway when he can take the longer, windier and more complicated ‘scenic route’

Bloods
HB 11.5
Platelets 75 (annoyingly they drop with fevers)
WBC 3.5
Neutrophils 3.29
Lymphocytes 0.11 (dropped quite low again!)

GVHD
GVHD

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Oh no he isn’t ! Oh yes he is!

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.
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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.
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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.
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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!
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Fun on the swing
Fun on the swing
Outside!
Outside!
Escaping from the hospital
Escaping from the hospital

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.
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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
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And some Ninja exercises apparently!
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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!
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They are also fundraising for more resources and asked Herbie to feature on the poster! He was thrilled!
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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.
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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!

So let’s say we compromise?

T+84

With the carrot well and truly dangled just out of reach yesterday our minds were filled with ways around the problem. So clearly last time when the TAZ stopped and we went home the fevers returned. Now from a parent point of view this could be two things,
A) he needed a longer course of TAZ to completely get rid of a bacterial problem
B) he picked up a new bug whilst in hospital

To both Dan and I the former seemed more likely. With that in mind, although we desperately wanted him home we also didn’t want to be back in hospital in just a few days post discharge as before. This meant hanging in there for a few more days but how many we didn’t know. The school summer holiday that we had envisaged being our ‘time as a family’ was being eaten into, the return to school adverts were everywhere, friends were returning from sunny holidays in far away places and we were still waiting for our ‘fun times’ to begin!
These past few weeks were not what we had hoped for. The grandparents , aunties & uncles and friends had all done their bit to amuse the other three but we really needed to be together as a family.

As far as Herbie was concerned he was still fever free, all obs were great and his haemorraghic cystitis appeared resolved. He has a residual cough and is on occasion snotty, no doubt why he coughs, but it’s all very much upper respiratory. To be absolutely sure another chest X-ray was ordered. We waited to be called around 12.30. However there were delays and I was so desperate for a cup of tea that when Sam and Grace, the play specialists, offered to play with Herb for an hour I checked nobody had called from radiology for us and then headed to the League of Friends Cafe. As I sat down with my lovely mug of tea one of the ward HCA’s arrived, Herbie had been called to come down straight away! I didn’t even get a sip!

The X-ray was done very quickly, Herbie knows the drill and obliges. He couldn’t wait to get back to some messy play with Sam and Grace!
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He really had a great time and I think Sam and Grace did too.

Professor Pollard arrived to see if we had arranged the training for the iv’s. I explained the discussions that had been had with the nurses and he said that he felt we should get day release as a compromise so that we could finish the course of TAZ . He wouldn’t commit on how long the course would be saying probably 7-10 days, we were really only at 3-4 days in so it was a big commitment. He wanted to see the CRP come down and stay down. We also have a GOSH appointment, including bladder ultrasound, on Wednesday so they would input then too. Gosh had reduced his fluid target again to 2200mls with 1000mls to continue on an overnight feed to space it out. This is good, although Herbie always manages to hit his fluid target daily? He’s eating well and drinking well and his fluid output is good and he is full of energy. Surely this madness will stop soon? This shared care does work on the whole but sometimes it is incredibly frustrating, especially when both hospitals are very good and want to take charge!
So anyway, Prof Pollard said we could start the day release probably from Monday as it was a bit late to contact the Community Nurses to reinstate the amik and Micafungin iv visits for tomorrow. When they had gone however the nurses said we would go home on Saturday at 8.15am and they would contact the CN Team.
Later it transpired that they hadn’t yet contacted them so I sent texts/emails to see how viable it was. Lovely CN Sarah replied saying they could help out , music to our ears. The compromise would be a reality from Saturday!
I left Dan and Herbie to head home for the night knowing that we would be together tomorrow, albeit for a few hours.

Today’s BMT Fact
Why a donor’s age matters

When it comes to identifying a marrow donor, doctors weigh many factors. One factor is the age of the donor. Medical research has shown that cells from younger donors lead to better long-term survival for patients after transplant. Doctors request donors in the 18-44 age group over 90% of the time.