Firstly, I should tell you that Miya is not having a gastrostemy. There was no availability until just before the scheduled admission date, and the BMT team don't want to take the risk of delaying the transplant just because of the procedure. Miya will have an NG tube instead.
Now to the main point of today's post...
Here we are, 10 days from scheduled admission and we still have no accommodation for the second parent. It was Chris' and my plan to share care of our daughter and relieve the other parent when necessary. We were going to share night duties, with me being on for two nights, and him being on for two nights, etc. WRONG!!
GOSH have NOT been helpful in the accommodation department. They have advised that unless the child is in ICU, they are not obligated to provide accommodation for the second parent. We even have a letter from the CNS on the BMT ward stating that due to personnel cuts in their department, the second parent is needed to assist in caring for the child.
I have made a complaint about the Family Accommodation Office at GOSH, and I don't think anything was ever done about it. (The Family Accommodation Office has been rude to both Chris and myself on several occasions.) The liaison office (where I made the complaint) were most unhelpful as well. When I asked about accommodation, I was handed a sheet of paper with local area hotels and rates printed on it (ranging from £87.00-£123.00 PER NIGHT!!!!) and was told, in the politest of ways, to PFO (Please F**k Off). Who has £4000-£5000 to spend on a hotel room?!?! Not I !
We have applied for funds through a services charity called SSAFA but nothing as come of it yet. I think it's pretty late trying to make hotel reservations at this late date, anyway! Good luck finding a hotel in central London that will be able to provide accommodation for at least 6-8 weeks!!
Next Sunday, it looks as if we are headed to London on a hope and a prayer. One of us may be sitting on a London street corner!! Maybe we should bring a sleeping bag and our dog...also a huge cardboard sign that says "Will Perform Like A Circus Monkey For Accommodation". I feel like a circus monkey...all this running around and trying to get everything organized and get everyone packed to go. Could someone please invent a cloning machine so I can get more done? Why is nothing more being done to help us? Surely not all families who have two parents staying with their child can afford the astronomical cost of a downtown London hotel, plus the good fortune to actually be able to obtain a continuous 6-8 week reservation.
Tomorrow, I am having Chris phone a charity we've been told about that provide housing for families who are being treated at GOSH. I don't have much faith in being able to secure anything, but here's to hoping! Maybe Chris will have better luck. People don't seem to respond to me. Maybe it's because I'm foreign...
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