It’s incredibly hard being in hospital when Herbie appears so well! He’s bouncy, reasonably happy (apart from the being in hospital bit!) and drinking well and eating too (although GOSH BMT kitchen food is streaks ahead of the JR).
Dan spent most of the day with Herbie in Room 5 on Bellhouse Drayson. Not much happened apart from the clown arrived to make a balloon sword and a balloon motorbike (apparently!)
When I arrived he was thrilled that I was clutching his copy of Rio 2 and that joined his viewing list!
It was a slow day news wise. He managed the whole day without a fever. It seemed obvious to me that the TAZ had been stopped too early previously. I was chatting to Dan about it and saying maybe it wasn’t viral after all when Professor Pollard and Dr. Truck from the ID team arrived. Prof Pollard then said exactly what I had said to Dan! He said he felt whatever it was was bacterial and TAZ sensitive so he wanted to make sure he got enough BUT he wanted to get us home, he hoped if we were willing to learn to administer the TAZ that it would be tomorrow. Yippee! He said it could be something in the chest or sinuses, an x ray tomorrow could rule out the chest.
However the excitement was soon dampened, the dangling carrot seemed a little farther away after a chat with our nurse who said learning to give the iv needed a specialist teacher and time, she felt home tomorrow was unrealistic. (As I had also suspected!)
When I was coming back up the stairs to the ward after visiting the shop I bumped into Dr Kelly, another of my favourite doctors and one that has been through most of this journey with us. He is such a kind and gentle doctor and I always feel so at ease talking to him. We chatted about Herbie, transplant, Lily etc. I do feel lucky that we have such a great local team.
Herbie had his Hickman Line dressing changed on his request and then settled down to a few dvd’s.
I spent the evening watching Netflix (the TV goes off just before 8pm here so the ipad, Netflix, iplayer etc are essential!)
Can’t believe that yesterday was my 100th post on the blog! I guess I need to end this one with another interesting fact, you will like this I think…
Blood has a gender: a quick school biology refresher: In humans, whether a person is male or female is determined by their two sex chromosomes. Females have two X chromosomes and males have an X chromosome and a Y chromosome. Gender is present in the immune system and blood-forming cells, so if a male has blood from a female their blood is now female.
Apparently a female patient with a male donor has a lower risk of graft-vs.-host disease than other gender combinations. A male patient with a female donor, in contrast, is more likely to get GVHD because the transplanted female cells can recognize the male recipient’s tissues carrying a Y chromosome as foreign and attack the tissues.
Herbie had an optimal transplant of same gender, family donor and same blood group! His blood stayed male but I know that most of the other transplanted children I met had the opposite to themselves. So interesting!
It will be obvious that I haven’t been blogging for a few days. Sadly it’s not due to having nothing to blog about but to do with access to internet.
Friday (T+70) came and Herbie was clearly suffering from a water infection or cystitis and it wasn’t fun for us at all. When our community nurse arrived we discussed it and we chatted to the BMT nurse at GOSH who said that they would send a prescription to the JR for a medicine to help but that the main thing to do was to drink the 3 litres! This was going to prove tricky as Herbie decided he would NOT drink the drinks we had at home.
Later on Friday afternoon the phone rang and it was GOSH again, a change of plan after discussion with the BMT doctors. They wanted Herbie in hospital to have iv fluids to flush the virus out ASAP. This meant going to our local, The John Radcliffe, and were to wait for a call from them with directions on which ward to go to once a cubicle/room was allocated.
For some reason the news came like a sledge hammer. Going back in to hospital seemed like such a backwards step, despite knowing this was always a possibility. 48 hours hydration, it shouldn’t be more than that was the info from GOSH but from experience I know that hospital stays never quite work out to the length you are advised.
I felt angry, we had managed two weeks…TWO WEEKS! It just seemed so unfair , although I knew it was medically the right thing to do.
I had to break the news to Herbie…he sobbed, yelled and ran to his room shouting “I’m not going …I’m not going. I just did 9 weeks! I hate Great Ormond Street and I hate the JR. My heart was breaking for him, I knew how I felt and it wasn’t me that got prodded and poked! I left him to calm down in his room and spotted Lily crying quietly in her room. This admission was going to affect us all.
We travelled in silence to the JR. Herbie slept and when he woke he was still not impressed. The all to familiar car park, lifts and wards of the children’s hospital brought back so many memories of previous stays. I kept telling myself it’s just 48 hours, he’s not actually unwell in himself. Let’s get through this blip.
We were back on Tom’s Ward, where both Lily and Herbie had recovered from their lung biopsies, where Herbie had stayed for two of the three operations to remove the nasty lymph. We knew the ward, the staff and at least that helped. They remembered Herbie too. We had to go in our own room due to the immune system still being so new. Bloods were taken and Shelley Segal one of our favourite consultants arrived. She is the consultant who met Dan and Herbie from the ambulance back on Mother’s Day 2010, when we were losing him to meningitis. We always feel comforted when she arrives. She came with a new Foundation Doctor called Liam who was a bundle of energy and instantly took a liking to Herbie.
A plan was hatched, iv fluids were ordered and strict input/output monitoring began.
The room was one of the larger ones but without a bathroom which meant a walk across the corridor. I felt anxious about it but reminded myself that he wasn’t neutropenic and so he should be ok.
The hyper hydration commenced and Herbie was relatively calm by now.
Was a day of drinking and monitoring drinking, it was pretty boring and we were all keen to go home. Thankfully the fluid was doing the trick, but as it did in GOSH, Herbie became positive, meaning he had more water in than had come out!
Out came the frusemide to encourage more output!
Bloods came back showing both WCC, NeUtrophils, lymphocytes etc and HB all looking good but platelets on the low side. They had been 175 but were now in the 70’s. Despite GOSH giving a lower limit to transfuse Shelley asked for it anyway as she said it was almost a given that he would need them tomorrow. First platelet transfusion since June, again, seemed like a step backwards.
Liam came in to stake his claim on most favourite doctor but ended up having a play fight!
Herbie also needed an ultrasound of his bladder but this was slightly disastrous as nobody mentioned him needing a full bladder! We also had to go to A&E to have it done as it was the weekend and we were in a corridor waiting, I was so scared another child may pop round.
Another day of not much happening. The drinks continued in and out and things improved, the scan showed no signs of deterioration. The pain was subsiding for him and we were told, if things continued well he would go home on Monday.
Home time! Herbie had stayed up until almost 1am and slept soundly until almost 12.30pm! Not great for the fluid intake. He kept grizzling that he wanted to go home now. We needed a pump to administer iv hydration over night and it was arranged for it to come to our house the next day. We didn’t leave GOSH with one, most people did, so we needed training. That was all sorted but the community nurse came in to tell us and show us the pump and said that Shelley Segal wanted to finalise arrangements for the pump so we would go home Tuesday.
Both Herbie and I couldn’t hide our bitter disappointment. Herbie jumped on the desk in the room in a rage announcing “I don’t care if she saved my life, I don’t like Dr Segal!”
The community nurses ran off to beg her to reconsider and their pleading worked. Everything was packed up, notes written, just exit obs and some TTO’s to wait for. So we all calmed down and waited.
An hour before the meds were ready, I noticed Herbie’s breathing was faster and shallower. A sure sign of a fever. I asked Teresa the nurse in charge of our care to check him.
38.2, I can’t begin to tell you how devastated I was to watch it pop up on the thermometer!
This meant an hour of waiting, no calpol, then retest.
It was obvious he was still feverish an hour later so we had to abandon hopes of home and start a cocktail of iv’s.
Another kick in the teeth and tears before bedtime, mine and Herbie’s .
Another spike in the night and he slept, noisily.
He didn’t wake much this morning choosing to lay huddled up and hot.
I wasn’t overly impressed by the doctor entering the room noisily at 7.30am and turning all the lights on!
Ultrasound and chest X-rays revealed nothing
As per protocol he needs to stay in.
He woke after the ultrasound and seemed to perk up.
Liam came and announced that he knew he was Herbie’s fave doctor and he had a poster to prove it.
Luckily I went home tonight for a brief time with the others.
He had spiked again….
Hopefully they will get this sorted.
Please keep him in yr thoughts.
T+68 Day 13 since discharge. 1st BMT clinic post transplant.
Typically this morning Herbie chose to have a lie in! When I finally went in and woke him he was not happy and said he wasn’t going to GOSH. I could understand his feelings but had to explain that we had to go.
The journey was good and uneventful despite the heat. We arrived at GOSH in good time and went straight to Safari Outpatients.
We walked in to find Lucy, a fellow BMT mum who had been on Fox and her son also waiting for their appointment. Herbie joined in their table football game until it was time for his weight, height and other obs to be done. His weight was up again since discharge and his BP was also a little high. We took our seats back in the waiting area.
It’s not the first time it’s happened but it still amuses me to see Great Ormond Street flash up on my phone as an incoming call whilst I am actually in the hospital.
It was even more amusing when the nurse on the end said she was calling from Safari outpatients (where I was myself!). Did I realise I had missed Herbie’s 12pm ultra sound? …errr no, I wasn’t actually aware that we had one booked! It seems there had been a little miscommunication. The nurse apologised and said she had rearranged it for 2pm.
Olga called us in. She was pleased with Herbie’s progress and seemed totally calm about the blood in the wee, declaring he needed to use some steroid cream as it looked like a little cut. She was pleased that we had dropped two meds so far. Her aim was to drop the steroid amount by half as of tomorrow. When she sees us in three weeks she will drop the MMF. We asked about the iv’s. The plan is two more months of Amikacin and four more of Micafungin.
We headed to ultrasound. The scan showed the spleen to be as it was last time but the wall of the bladder had thickening suggesting an infection. Olga called me to explain that it was quite a common problem. Sadly, common but painful to witness. The cure is lots of water so his fluid target was increased from 1.5 litres to 3 litres! That means constant drinking I suspect!
It took ages once we were back on Safari but luckily he had an ipad etc to keep him occupied.
The bloods were not taken for ages. This delayed our ciclosporin until 4.30pm. Which meant the evening dose couldn’t be taken until at least 12.30am!
Then there was a problem with Amikacin dosage as it wasn’t standard and didn’t meet ward protocol.
We were filmed by Dolland and Katie for part of an Open University course and finally , at around 6pm, we left for home.
Today has totally wiped me out so I’m off to sleep.
BMT fact of the day
70% of people needing a donor won’t find one in their family.
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.
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!
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.
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!
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.
I didn’t sleep well last night. My mind was a whirring mess and I was worried that I wouldn’t be awake, showered and dressed by 7.30am to meet the nurse, Shanice, to prep Herb’s meds. I ended up being ready at 7am! The problem was that Herbie wasn’t interested in waking!
When Herbie finally woke he wanted to have a bath and get breakfast underway.
Amy came in to spend time with him. He really loves Amy!
We decided to take lots of photos of the staff as you never know if we might get discharged before their next shift. Sufi wasn’t our nurse but she asked if she could pop in and see Herbie to sing their favourite duet… The eat eat eat song.
She was so sweet saying that when he’s discharged she will miss him so much. Amy said the same adding “what will I do without you Herb?”
Dan arrived and Rehka took us to recap our line safety talk and finish discussing the food lists for discharge. Herbie had Jess in from hospital school doing experiments!
Herbie asked lots of nurses for photos
Sandra obliged but Herbie and Lucinda had a scrap!
I left to head back to the shire and Dan stayed.
The bloods were a little confusing…
The obs were all good with no signs of infection. The CRP will be repeated in the morning.
We just have everything crossed that it’s just a blip.
Ciclosporin levels came back high! After a week of trying to get it up higher to stop the GVHD. The dose had to be reduced.
The boys settled down to an early night in Robin Ward and I find myself , once again, with an over active mind.
I need some meditation!
Today I am writing about life in GOSH whilst I am home with my other 3 babies.
Dan reported that Herbie had a good start to the day. Of course it’s Monday so it was the dreaded NPA. Thankfully it wasn’t as traumatic as it has been and by the time I chatted to Herbie he had had his bath and breakfast and was bright and chatty. He was very excited about going to a big park with Daddy.
Next time I spoke to Dan he was back in the room after their outing to the park.
Herbie had loved it all but, as he had a few days earlier, he got so over excited that he over did it and had to return after half an hour.
On his return he had tummy ache and fell asleep, missing his dinner and the teacher.
When he woke he was refreshed. The doctor was pleased with him and the plans to redo his drug chart and for Dan and I to pick up the drug administration again were moving forward.
He made some Lego with Daddy and listened to 6music and played Moshi Rescue. (And look at that hair growing back and catching the light!)
The Stoma Nurse came to just check again that we were happy with the care and use of the PEG … he only had it put in on April 25th…hehe, just a little late!
Things were all pretty good in room 2.
The day wasn’t without a little Steroid rage though…
Platelets no figure given today
When school finished here at home we face timed Herbie and it was so funny. He wanted to ‘sit on the basket’ in the living room to watch Rufus play the x box! Lily placed the ipad on the basket and it was like he was in the room. They ‘played ‘ like that for about 30 minutes! Herbie said “when I come home do you know the first thing I’m going to do? Go to my tree house and stand on it and shout to the village EVERYONE I’M BACK!!!!!!!!”
So we are moving on to Day T+53 and hopefully a day closer to Herbie standing on the treehouse yelling over the fields of Nor Lye.
“Muddy water, let stand, becomes clear.”
*Dan said the mood on the ward was very sad today after yesterday’s shocking news. Everyone is affected. We have been thinking of Blake and Alex so much today xx
Wow, 50 days since transplant, it’s really bizarre to think how long ago day zero was now as in many ways it seems like yesterday and then again it feels like another life!
A lovely lie in this morning until 9.30am. It seems there are some benefits to Herbie’s late nights! Weekends here at GOSH have such a different feel, as I know I have said before. The hospital itself is much quieter and obviously we have no teachers , no play specialists or volunteers visiting. This means spending more time in the room and much to my annoyance Herbie didn’t want to do any of the fun activities I envisaged to pass the time. He was basically going between his ipad and the TV! Amy was his nurse again today so he was very happy, although he did have a moan about the Nystatin. He has to have it 4 times a day and it’s his only oral drug at the moment, everything else is iv or through the PEG. The nystatin is for the black tongue he developed last week , thankfully the meds seem to be reducing it.
The ward has really changed in the last day or so with so many new people arriving. Next door we have another BMT patient so all three of the BMT patients are in a row. The other rooms are all immunology patients and we seem to have lots of new faces.
Sadly my friends are still in PICU, I miss seeing their friendly faces in the ward kitchen and have everything crossed that their sweet baby will be back in the ward soon x One of the main problems when new people arrive here is that the kitchen rules aren’t always explained. Sometimes this is because an interpreter is booked to come to explain and hasn’t yet. When we arrived here 8 weeks ago there was a problem with lots of food going missing. The set up in the kitchen is that it is shared between Robin and Fox parents, each patient gets a basket to keep things in one of the fridges (BMT patients have their food in the BMT kitchen on Fox Ward but their parents keep their food in Robin’s kitchen). There is also a space in the cupboards for a shelf per room of non fridge items. Yesterday when I went to get my mug (Dan and I have Moshi Monster mugs that we purchased especially for BMT) from the cupboard I noticed that Dan’s was missing from the shelf. I have hunted high and low but so far it has yet to turn up! There have also been times recently when new people have been seen rummaging through other peoples shelves, usually unaware that these items belong to someone! It’s very much like living in a shared house with calls of “Who ate my baked beans?”
The morning was spent on a couple of loom bands, Herbie helped, and then just various chatter and TV.
We talked about home and friends, he told me the things he wants to do when he gets home and we reminisced about last years holidays to St Ives and Dorset and camping trips with The Abbotts.
The Dr arrived quite late, which is usually a good sign as they seem to go to the most sick children first. Herbie poked his tongue out at her and blew raspberries at her and still she smiled and said he was so lovely?? She was very happy with his progress and suggested we return to oral pred (steroid ) on Monday and that the dose is lowered. We will also go back to doing meds ourselves.
We decided to head out a little earlier this evening as it was cool but dry. We went to Queens Square as we have the last few nights but then I suggested Russell Square where Dan and I had sat outside the cafe in the sun only weeks before. Herbie loved this idea. It was a much longer walk than he was used to but he did brilliantly. I did have a sudden panic when I realised that I had forgotten to take a urine pot with me incase he needed a wee but thankfully we were ok. When he saw the fountain through the railings he ran off in its direction. He was so excited!
He was absolutely fascinated by the fountain and I was able to sit on one of the surrounding benches whilst he ran around it, whooping with delight and joy. My heart soared!
He came to sit with me for a bit and we chatted again. He took of his hat. The new hair growth now very much in evidence.
“Did I still love him without hair?” The question broke the hazy idyllic moment with a razor sharp edge. “Of course, of course I still love you, long hair, short hair, no hair…makes no difference to how much I love you.” “But you always say you love boys with long hair?” “Yeah but I love Daddy and his isn’t long at all!”
I noticed a man who was reading his paper on the next bench look up and smile. Herbie ran back to the fountain.
As we walked back to the hospital I suddenly became aware of the responses of those around me, smiling at Herbie as we walked by, children staring at him and whispering to their parents, even strangers just saying hello as we left the park. I looked at my boy, he had removed his hat, the little Rice Krispie head was on show! That’s what it was all about. He walked confidently back, his peg hanging out from his hoodie, Hickman line swinging in a Baggie round his neck.we went back to Robin Ward via the vending machine to get his treat. This little ritual is one he loves now. He saves it until Skatoony starts at 9pm.
I spent the evening watching TV with Herbie until almost 11pm! He was full of it because we had a nurse from the ward that we hadn’t had before, Rose.