Day 19 = some changes

Thank you to everyone for all your best wishes and kind words on these posts about the small person. I’ve got to be honest, I’ve hit the proverbial wall a bit today, so the nurses know not to mind me if they come in and I’m sat in the corner laughing like a loon 👀😂

I’m waiting for the doc to come and speak to me properly about it at some point, but we did her Lung Clearance Index today and she scored 15.2. Unless I’ve got completely the wrong end of the stick, this would support what I’ve said all along but was told couldn’t possibly be the case by her old tertiary team: her fev1 does genuinely correlate to the degree of underlying lung damage she has and isn’t massively impacted by her underlying tracheomalacia as everyone kept trying to tell me. ‘Don’t get caught up in her numbers, her TM makes them unreliable’. As recently as 2 months ago I was being told that we couldn’t trust her fev1 at all, regardless of whether it was good or bad.

Can I go shove those results right in their faces and not look like a complete dick, d’you think?

Aaaaaaanyway.

Those ‘unreliable’ numbers today are fev1 67 and fvc 90, so on a par with last week although dropping a point or two at a time, and she’d dropped some weight. Her named consultant will be on the ward rota from Wednesday, but she stuck her head in today and they were going to discuss the situation further at MDT this morning but I haven’t had any feedback from that yet. Overall they’re ‘happy’ that she’s improving, particularly with her lung function, they don’t feel that we’re ever going to get her much less productive (I completely disagree), but they do agree that the Azlea may be ineffective, and they’re now wondering whether she’s also got an anaerobe causing problems, so they’ve switched the Azlea out for tazocin 4 times a day and we’re now definitely here until at least Saturday.

I’m glad that they’re not just saying ‘she’s fine, go home’ (what we were getting elsewhere and she was a lot worse than she is now), but I think it’s far more likely that the issue is her pseudo has become resistant (if not properly MDR) to a number of agents rather than there being something else at play, and if we gave her something for MDR pseudo alongside the colomycin I strongly think we’d probably have her sorted within a fortnight. I can’t win: I want them to take it seriously and sort her out, which they are, but I also want them to treat the most likely problem rather than looking for additional stuff and trying to treat that instead! She’s also still isolating Candida despite having 3 weeks of oral fluconazole to date, so they’re planning a course of IV antifungals for her next admission - she’s been isolating it in almost every sputum sample for 3 years and I was categorically told it couldn’t be part of the problem(s) we were having, and yet the team here routinely treat it if it’s proven to be in the lungs, and even though we haven’t actually proven it’s in her lungs are still keen to try and get shot now that she’s under their care.

She’s down for a CT scan first thing, more for baseline comparison going forward than anything, and then we’ll see what the feedback is regarding the MDT discussions today on rounds. It would absolutely kill me, but my personal view is that we need to change tack with the IVs, whack her on the unconventional stuff for MDR pseudo for a couple of weeks, maybe even chuck her on the IV antifungals at the same time, and just get her as well as we possibly can *now*. If we go home as is, I know it won’t last. I absolutely know I’ll be back on the phone within weeks. I’d rather be here for 5 weeks now than go home and come back in a month for another 3 week stint having to start from scratch again. We’ve got some momentum, she is a lot better than she was, so surely it makes sense to keep going? She pointlessly missed all of her end of primary school stuff (pointless because she was as bad when they discharged as when she went in), and has now spent her first day of secondary school at the hospital school here - I’m grateful for all the facilities they have, but this isn’t much of a life for an 11 yo.

[sassy59]

I honestly don’t know what to say but can I be really angry that you’re not being listened to?

Still wishing you and your amazing 11 year old well. Xxxx

[Corin1950]

Bless her! No it isn’t but it’s the life she has and at the moment her health comes before her education. Thank God she’s got you In her corner. I do hope you get some answers and she’s on the mend soon.

Thinking of you both

Wishing you all the best

Corin

Xx

[Bingo88]

Thought are with you. So frustrating that people are not listening to you. Hope you get someone soon to listen Good luck, here if you need to let off steam. BRIAN

[Ergendl]

Keep hanging on in there, Charlie_G. Yes, she can catch up on education later: you're right to keep insisting she gets as well as she can get first.

[Izb1]

Oh! Charlie I do sympathise with you when you are not being listened to it is so frustrating. Doctors do not always know best and its no good afterwards saying you were right perhaps we should have tried this. I am not saying you shouldnt listen to what they have to say but I think it is a two way street. You sound like a very knowledgeable person and wonder if you could ask them to have a meeting with yourself so that you can put your points of view forward and ask them if they could try the things you have stated here. I wouldnt worry about her education at the moment, that is the least of your worries. I wish you and your little un all the very best and hope that things work out for you soon. Irene x

[Dedalus]

Fortunately it seems they're looking at things more in-depth now. Can totally understand your frustration, but hopefully you'll get the answers and treatment you need soon. I'm impressed they have a hospital school. All best wishes moving forward.

[Comino2]

Hang on in there,thinking of you and sending very best wishes xx

[cofdrop-UK]

Hi Charlie

I am hoping that by now you have managed to have a discussion with littleun’s consultant. I am hoping so much that the Tazocin works well.

I totally understand your concerns re your daughter’s education. I spent most of my childhood in 5* and we had a rubbish teacher. I remember her name, her daughter’s name, how good she was a ballet and how many medals she had, but not much else. A lack of education was the thing I resent most about always being sick. My daughter whilst away from the chalk face and working for Islington Council as a teaching advisor for PSHE rang me one day after visiting a hospital school, to tell me how impressive it was - she knew how important it would be to me. It fills me with warmth when I pass the schoolroom of our childrens’ hospital. It looks so vibrant and invilting.

My Mum worked at night so she could look after me when I was home ill, so at 11 I used to have to leave school twice a week at 2pm and get 2 buses to the hospital for physio. Ironicaly the buses were full of smoke!!!

Of course your young daughter’s health is the most important issue but I do appreciate your other concerns.

Hoping so much for an improvement in littleun’s condition, so you can both get back to some normaility.

Love cx