Stem Cell Transplant – Day 48

Ok, so…

So I thought yesterday was bad for poo…

Someone once came up with a game where you had to describe a bowel movement using only film titles. In truth, half an hour after yesterday’s post, The Happening occurred; bad enough to need the assistance of two nurses. Then again at 7am. and twice more in the day. Extra shower and more costume changes that Liz Taylor as Cleopatra.

The last, in which poor Rabbity got covered really was a bridge too far, and I confess it was hard to maintain composure. Poor sleep and perma-poop will do that to any adult. Imagine the most chilled out person in history, then imagine them dealing with an air bed flooded with diarrhoea and suddenly they wouldn’t be so damned calm!

The good part of the day is that, after spiking a temperature last night, Kip’s temperature came down quickly with the administration of broad-spectrum antibiotics, making it a fairly safe bet that it was a central line infection rather than a virus in the air. This was largely confirmed late today with a report that blood samples from his central line showed a variant of EColi (the online version of regular Coli we all remember from our childhood…). The next issue is whether or not the infection is sufficient to warrant removing his central line and port. This isn’t a straightforward procedure and would make the administration of intravenous medicines a lot more difficult. We have to wait a bit longer to see how his body responds, how the central line responds, and exactly what variant of EColi we’re dealing with.

#TeamKip

Stem Cell transplant – Day 47

When life gives you pee bottles…

Today was a day of two parts, separated by a colossal poo.

In the first half of the day, Kip woke just before 8am having had quite a disturbed night, so started a bit tetchy but a fresh nappy and some cuddles he was ok. We built a bit more Lego, listened to some music, dealt with the first bit of diarrhoea, had a shower, got dressed, refused to eat anything as usual, had his medication as usual and settled in to watch a bit of BBC Bitesize (Kip’s suddenly got into understanding the Solar System).

At 2pm, the teacher arrived (it’s a great service put on by the James Brindley School; you can imagine that kids mid-way through GCSEs and the like might be anxious about missing learning on top of dealing with cancer!), which is a good 45 minutes I get to leave the ward and walk around the quiet bits of town.

When I got back, on of the staff caught me at the door, starting with “Kip’s OK, but before you go in there…”. Which is, of course, great for the nerves.

Kip had had a *massive* poo while standing up. They had said “let’s get you changed” so Kip climbs on the bed and the following contortions and wriggles meant that, well, the nappy isn’t infallible and fluids like to flow. He was covered head to toe, including all over the brand new dressing on his central line.

A big shower to clean him up, I take off the old dressing, put on a new one (no kidding that took an hour and a few comforting episodes of Paw Patrol). The last job was to get the nurses to clean and flush the ends of his central line and make sure there were no nasties.

One hour later, Kip suddenly says he fells tired, tucks himself in and starts shivering. His skin goes pale, his breathing becomes rapid and in a few minutes his temperature has rocketed up to 38.7C. Calling in urgent help, it’s obvious his body is responding to something nasty. We get the antibiotics and the paracetamol in as fast as possible. The medic suspects that a bug of some sort was lurking in his central line (which we hadn’t used for a week) and the flush got it into his bloodstream, causing the febrile reaction.

We know now that we’ll be here for a bit longer until we identify the bug through cultures, get his temperature under control and stabilise the whole situation. This is the first big test of his fledgling new immune system, and needless to say we’re all a bit stressed.

#TeamKip

Stem Cell Transplant – Day 46

Hopes for a decent sleep

That was an interesting day. Kip needs a bit more fluids as it appears he’s not doing enough weeing, but otherwise things are going well.

That meant getting one of The Big Syringes and squirting 60ml of water up his nosetube several times today, on top of his usual nasal milkshake.

Up until today if Kip was getting water or medicine through the tube, he’d scream or shout or cry if you pushed it through any faster than about 1ml in 30 seconds; this is because it slightly vibrates as it goes through and pushing quickly makes the tube shift a little; since this is happening at the back of his throat it’s understandably distressing.

But today, he saw I was giving him a big drink so he grabbed The Big Syringe out of my hand and pushed it through himself, at about fifty times the rate I would do it. And he did it with a big smile on his face.

I can’t think what’s happened to bring about this sudden change, but it is quite welcome.

Today I was signed off as competent in giving Kip his medication which is not before time based on the two facts that a) I’ve been giving him meds pretty much since we got admitted and b) I’ve been a registered nurse for six years now…

Although, I may get un-signed off after this evening’s mishap; I was making a Pot Noodle for my dinner (I know, don’t start), splashed a bit of hot water on my hand, dropped the pot on his prescription sheet, so all his paperwork currently smells of “curry”.

Apart from that, Kip’s day consisted of playing Balloon Tennis, some reading and numeracy lessons, running around a chair, watching a documentary about coral polyps, not eating anything, a bit of Lego building, a brief video call with Millie, and doing the most gargantuan poo in history. I’m ready for my bed, and not surprised he’s shattered.

#TeamKip

Stem Cell Transplant – Day 45

Brimful of passion on Day 45.

Changeover Day arrives in a flurry of busyness for Sarah and I; the last few days keeping up with Kip’s fluid demands, medication demands and increasing energy has been exhausting for her. Doing last minute house repairs, cleaning the inside of the car (more later), laundry, packing and arranging a Covid vaccination while cooking and trying to keep Millie entertained for me. I don’t know which of us is getting the break, maybe it’s neither of us.

Kip was well awake until after 10pm today, and I mean AWAKE – running around his room, challenging me to all kinds of athletic games and roaring every time he won. Not that I’m bitter but he kept changing the rules…

At home Millie did brilliantly helping to cook dinner (her new favourite is mac & cheese) and joining in the online Beavers meeting where she’s really developing her confidence.

I cleaned out the car first thing this morning, properly valeting it so it looks and smells like its 10 years old instead of 15. One of the little cubby pocket things had had a little pot of Vaseline in it and clearly been overheating some time ago, as it was all congealed in the tightest little corner… Still it’s clean now, and woe betide the first person to dump a sweetie wrapper in there. Unless it’s me of course…

It’s hard to know what to write at the moment, we’re in a kind of limbo as we wait for his cyclosporin levels to be steady and for his kidney function to be within tolerance. Once again, if it weren’t for all the things wrong with him you’d swear he was fine…

Tomorrow (Thursday) is my turn to try and get him to eat at least something and drink some squash. And to maintain some measure of sanity while I do it!

#TeamKip

Stem Cell Transplant – Day 44

It’s been one of those days where we didn’t get five minutes until the witching hour when we’re beyond exhausted and into the “how are you still awake” phase of bleary autopilot.

Kip’s doing very well – on the video call with him and Sarah today he wouldn’t stop shouting and waving at all – looks like some energy is coming back and with it the desire to be a loud and active little boy.

He even managed to eat a packet of crisps today, which is an exceptional improvement.

Today we moved in to a new phase as we had a discharge planning meeting with the lead nurse. It’s only five weeks today that he had the transplant, and the idea of leaving the hospital is in equal parts thrilling and terrifying. It seems only a few days ago that we were desperately worried, and there’s been such a fast turnaround we’ve got a bit of whiplash!

It’s suddenly apparent that the house needs a bit of work to get it ready; the kids’ room needs a good clean and tidy, as does the kitchen, the hall, the front room, the living room, the stairs, our room, the bathroom… I reckon half an hour of concerted effort and I might be able to start some of that.

We’ll have some unexpected restrictions – we can’t do any kind of DIY to the house for at least a year after discharge, not even putting up a picture hook. Dishes have to be dried then put away instead of left to dry on the rack or in the steamy dishwasher.

There’s a lot of normality too; he can eat regular meals with us, drink from the tap and play in the garden. Small victories but a lot of disruption and our lives are still going to be chaotic for a long time.

#TeamKip

Stem Cell Transplant – Day 43

Bead the Obscure

A full Monday completed and, amongst other domestic chores at home, Millie and I organised and tied together Kip’s latest delivery of his Beads of Courage. Each bead represents an intervention, treatment, test or procedure that he has received; from the 29th of January to the 28th of February, we counted around 260 beads.

In dietary news, Kip managed to eat an entire pea today. Obviously there’s still a long way to go, but these are small steps again toward a better future.

There was a slight “return to normal” today (I mean, what is normal anyway?) – I managed to record an episode of my podcast with my dear friend Stuart. As much as anything it’s a cathartic vehicle to complain about politics! We had thought a couple of times about recording an episode while I was in the hospital… not sure that would have been the most responsible use of time!

Millie has had a good day, doing some virtual geography with her friends (and persuading a bunch of slightly bemused parents to facilitate a networked game of Minecraft) before we made good old tattie soup and bannocks for our dinner.

Snatches of normal life are beginning to break through.

#TeamKip

Stem Cell Transplant – Day 42

This isn’t just not M&S broccoli…

Changeover Day again, Sarah coming in at lunch time and me getting some chill time and sleep.

Kip’s been in good form, having a little Lego session sat at the table and not hooked up to anything for a good half hour in the morning; he’s so full of life and energy when he’s “disconnected”, and it’s a bit of a blow to have to plug him into the milkshake machine and squirt drugs up his nose every few hours.

Sarah and I are being supervised in drawing up and delivering his medication, which is one of the pre-discharge activities we do so that when he’s well enough we don’t have delays in getting the boy home.

Kip’s blood counts are also doing really well; his neutrophil count is expected to go up and down a bit while it figures out what its doing, and so down from 2.1 to 1.7 today (is this like the money markets? Or Top of the Pops? Down 4 on last week’s high is Haemoglobin with their version of “Red Blood Cells”, and a new entry for this week it’s Neutrophils ft. Lymphocyte straight in at 0.1″).

One thing we’re still having problems with is food; Kip has stomach cramps and doesn’t want to eat. He’s also lost a bit of weight, but doesn’t want to eat.

Part of that is because he’s worried that eating when he has a sore tummy is going to make it hurt more; that might be true, so we just have to steadily and slowly encourage him to try and see how it goes. There’s still plenty time and we’re sure he’ll be relying on the feeding tube for a while yet, at least to top up when he does start eating again. Another part is because, he is on a “Safe Diet” and, well, look at that broccoli.

Everything Kip is given to eat has to be devoid of any possible infection. That means getting it hot, keeping it hot and, when it comes to veg, boiling it until it is very definitely dead.

This is, absolutely, not a dig at the cooks at the hospital; they have to provide something that will not make the very vulnerable children ill. But, and every hospital in the world struggles with this, it’s hard to make appetising, healthy and fresh portions of meals for hundreds of people with varying needs and within a tight budget.

We get to take in some of Kip’s favourites but he seems to have gone off them too; he doesn’t really eat the Haribo, he’ll have a tiny bit of a banana pouch, but won’t entertain crackers or macaroni cheese or fish fingers which previously would have survived on his plate for nanoseconds.

Next time I’m in, I might try a Dorito.

#TeamKip

Stem Cell Transplant – Day 41

Captain Attitude returns!

Quite a dramatic and busy day today – good news on the engraftment of the new stem cells as the numbers keep going upwards in a very positive way.

Our big challenges at the moment are fluids and food; Kip is experiencing abdominal pain along with diarrhoea which is a side effect of the radiation and chemotherapy he had five weeks ago. While there are medications available to slightly reduce the symptoms, it’s not going to fix overnight and we just have to wait for his body to repair itself over the coming weeks and months.

The big problem is that, because it hurts when he has food, he doesn’t want to eat anything or even drink anything other than a few sips of milk or juice a day.

This means he has to get all of his fluids through the NG tube up his nose; this is normally a bit of a challenge because if you push stuff through it too quickly he finds it really uncomfortable, his stomach gets overwhelmed and he’s then sick – expelling all that fluid and calories I’ve just spent ages trying to get into him, so we’re back to square one AND really unhappy…

Today all that was added to when a midday vomiting brought up his NG tube; I had to quickly flick it out of his nose, unplug the feed pump and get the whole thing unstuck from his face – while he was still vomiting and for good measure having a poo at the same time. See if anyone ever says men can’t multitask again, I’ll slap them in the face. And I’ll be sure to be doing two other things at the same time.

We had an hour or so without any lines or tubes or drips attached today, and that’s why you can see Kip smiling and gurning in the picture above. It was a very different experience when we had to get a new NG tube inserted. If you think the Covid swab is bad…

All that and for good measure there was a catastrophic bout of poo and snot at 10:30 at night and the wonderful nurse looking after us had to help tidy up. Then it was just a matter of getting his night time medications up his nose, write this blog and now I’m off to bed.

It’s Changeover Day tomorrow, and I could really do with a couple hours sitting in a cafe, browsing in a bookshop, maybe even a bit of retail therapy. Instead, I’ll, erm, go home.

Still, there’s good progress today. Every day that passes in here is another day closer to getting home.

#TeamKip

Stem Cell Transplant – Day 40

Building an ice-cream van!

Here’s some lovely brightly coloured plastic keeping this lovely boy entertained! We had a great morning making some Lego (thanks again to Billie’s Fund), playing with a big football and working together on his medications.

I’ve had discussions with the nursing team today about sorting Kip’s medications for when we are discharged; there are eleven regular (daily) medications we need to give, so our home life when we go is going to be very demanding, very busy and involve a lot of bottles and pills! It shouldn’t last too long but there are a couple of meds that Kip will be taking for the rest of his life; quite a sobering thought but seriously such a small price to pay to have him around. I’m already getting anxious flash-forward worries about him being a rebellious teenager and refusing to take it… One. Day. At. A. Time.

Visits today from the teacher (Kip learned about living on Mars and whether or not you can get to Jupiter for a holiday) and the play team; he’s getting to use his brain and get a bit more active as well, though he tires very, very quickly.

Speaking of brightly coloured things, this evening I’ve just update the list of beads (see previous post) for the first time in nearly four weeks… The list comes to about 250 different coloured beads to make up the record of Kip’s treatment. That’s a good little job for some of my days off, putting each little bead on the string, should take about four hours!

Kip gets flushed off his drips tonight and is only connected to his feeding tube (that sounds grimmer than it is; a nutritious milkshake going straight into his stomach). We start encouraging real food in the next couple of days and have all of his medication orally. Quite a big change!

Kip’s sleeping nicely as I write, after a significant poo-n-puke event a few minutes ago; he drifted back off to sleep listening to Winnie The Pooh being read by Alan Bennet, by far the most popular bit of entertainment during this admission.

#TeamKip

Stem Cell Transplant – Day 39

My first full day back in with Kip started with being woken up at 3am and 6am and 7am and 7.30am with various toilet, vomit and medication interruptions.

Once Kip had got dressed, and had his little bath, he was suddenly full of energy and fun, which he was able to express with some ball and balloon play with me, some lessons with the resident teacher, a session with the physiotherapists and finally with the play therapist as well, which allowed me thirty minutes outside to get some “fresh” air (it’s the centre of Birmingham after all!).

With all of that then Kip was pretty exhausted in the early evening and asleep by 7pm.

Despite my lack of sleep and obvious tiredness, I am still unaccountably awake at a quarter to eleven at night!

Kip’s new stem cells seem to be settling in well to their new home; he’s producing platelets (though really they’re Blutplattchen, having come from a German donor) and, while his neutrophils are down on yesterday, it’s an expected drop as the dose of growth-factor is reduced.

The doctors were so pleased with his progress they were discussing the H-word… Still early days and many things need to go right before we can all be together again, but just hearing them spell it out (they literally said “h-o-m-e” and wouldn’t say it!) was enough light and hope for the day.

#TeamKip