Having written my last blog about finally making the big decision to request that M has more scopes done, we settled in to what we assumed would be an inevitable wait for the appointment to be made. Having been told 6-8 weeks, I studied the calendar and figured out that 6 weeks would be right in the middle of October half-term and, knowing that there was no chance that we could be that lucky, assumed that instead we were looking at a date in the middle of November.
A week after Mike had spoken to the registrar at GOSH, I received a call from the pre-admissions nurse, S, to talk through M’s notes and agree the arrangements for the scopes. I was reassured to learn that M’s notes clearly state that there is a problem with him coming round from the anaesthetic and S suggested that, as a precaution, he be admitted to Kingfisher Ward for 2 nights to allow close monitoring as he recovered. We discussed the possibility of a pre-med, which is supposed to calm the child before they are given the anaesthetic. She felt this might lessen his reaction, though I was warned that there is a risk that it can have the opposite effect and might make him more aggressive. We agreed that I am open to him taking it, but will discuss it fully with the Consultant Anaesthetist the day before.
However, not unusually when it comes to M, there have been some added complications due to the chronic constipation and impaction he had over the summer. GOSH wanted to admit him for a week into our local hospital to have a fairly heavy bowel prep done – they need to monitor him to ensure he doesn’t get dehydrated plus insert a NG-tube to give him the meds as it seems unlikely that he’s going to be co-operative about taking 4 litres of a “vile-tasting laxative” (the words of the medical staff, not me!).
Mum had some holidays booked during the 6-8 weeks and I had my fingers crossed that the dates wouldn’t clash as G would be staying with her whilst Mike and I stayed up in London with M. S confirmed that she thought the appointment would most likely be in mid-November and that the admissions team would call me within the week to confirm a date. All seemed to be going to plan and I informed both school and work that the appointment would be coming up and that I would let them know as soon as I had a date.
And then last week, the whirlwind hit. Hold on to your hats, this could be a bumpy ride.
Friday afternoon 2.30pm – Phone-call from GOSH to say that the proposed date has suddenly become, not 6 weeks away, but rather the week after next, just 10 days notice for all concerned. No time to confirm what the position with our local hospital was, that will have to wait until Monday. Let school know that M will be away for the week and ask if they could organise some work for him whilst he’s there – I know, mean Mummy!
Weekend – Confirm arrangements for G. Mum not away that week, so G can stay with her and stick to her normal routine as much as possible
Monday 10.45am – Speak again to S, the pre-admissions nurse, who has yet to phone our local hospital, but who has a doctor on hand at GOSH to argue our case. Given M is supposed to be admitted there on Wednesday, it all feels a bit tight and needless to say, stress-levels are slowly rising. Suddenly, the 3 days off work and school have become over a week, but still just about manageable as I can do the school-run and so on with G.
Monday 1pm – GOSH doctor calls to confirm some further bits of information including the name of our local consultant (we don’t have one) and which ward M is normally admitted to locally (he’s not). Assured this won’t be a problem and that either she or the local hospital will ring later to confirm when I need to get him there.
Monday 6pm – Phone-call from S to say that the local hospital has refused to take him and so we’ve got to move to Plan B – getting him admitted into GOSH to have it done instead. No idea whether they’ll have a bed for him or when they want to admit him. They need to review the abdominal x-rays done over the summer (by the local hospital!) to see whether he needs to be in the full week or not. Someone will call tomorrow to let me know.
Tuesday 9.30am – Wondering what time GOSH will call and hoping that it’s good news.
Tuesday 12.45pm – Still waiting to hear
Tuesday 3.30pm – Still waiting, but hoping they don’t phone whilst I’m on the school-run.
Tuesday 4pm – Following call from Mike to see if I’ve heard anything – doesn’t he know I’d have rung him if I had? – decide to call and leave a message for the admissions nurse. She is amazingly, wonderfully supportive and has reassured me that she will come up with a Plan C if needs be, though goodness only knows what that will be!
Tuesday 5.15pm – ARRRRGGGHHHH!!! Appointment cancelled as GOSH can’t find him a bed for the week. Profuse apologies from S, who tells me she’s turning grey trying to organise it for us, but that admissions will phone me tomorrow to set up a new date. They’re not going to bother with the local hospital at all, I’m guessing they’ve been unco-operative which fits our experience of them, and instead will do it all at GOSH.
Tuesday 6.30pm – You really, really couldn’t make this stuff up! Phone-call from S, as I’m en-route to taking G to her gymnastics lesson, to say that they’ve found him a bed for next week and so it’s all back on. Can’t confirm what time we’ll need to be there on Monday, so I’m now planning on M and I travelling to London on Sunday. She will phone tomorrow to confirm all details.
Wednesday 11.45am – Hurrah! Get the champagne flowing, we have lift off. Final confirmation that M will definitely be in from Monday 10am, no ifs, buts or maybes left. S has been a star and has promised to come visit us once he’s on Kingfisher ward on Monday. I can’t wait to meet her and say a huge thanks for persevering with getting this all sorted.
Now, I’m off to work out what we’ll need and how we’re getting to London next week.
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