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Posted by pippa duffy
on June 18, 2009, 23:55:46, in reply to "A date!"
86.163.49.152
Dear Laura
We've just come back from staying at RMcD House. Just to remind you/others, it generally goes like this: assuming that you are not literally 'round the corner' then all the while that Mia is in PICU, you should be able to have a room in the RMcD rooms on Level 1 in Evelina. A basic hostel style room with a double bed and a shower off it. A small communal room with a microwave, urn, sink and fridge and a telly. Bedding and SMALL! towels provided. Once Mia is transferred to Savannah, then there is room for one parent to sleep in the cubicle beside her on the pull down bed. Sheets, blankets available, pillows in GREAT DEMAND! (might be worth taking one with you if you're going to be on the pull down) Towels are small (hand towels really!) and a bit 'worn' so take your own. And it's REALLY HOT in there at the moment, so you'll need flipflops or your feet will get really really hot. At the same time as one of you having the pulldown bed if you want it, hopefully the other can be at Ronald McDonald House over at Guys. Brilliant facility. 18 rooms, large communal kitchen with 4 kitchenettes in it. All kitted out. Playroom adjoining it (this was great for us) Comfy beds in the room, decent towels! Shower, bath, loos on each level, always accessible. Last year, accommodation was co-ordinated by the family co-ordinator at Evelina, but this isn't the case now, as she's left. So I suggest that now you have dates, you ring up and get your husband put onto the wait list. Ask for a double room, because you might feel at some point when Mia's doing better, that you want to spend a night there with your husband (worth keeping the option open at least). You can contact them on 020 7188 0447. There is a staff shuttle bus that runs from 7am in the morning that you can catch to take you from Guys to St Thomas' free of charge. Failing that there's the RV1 or the C10 buses. They can tell you where to catch them from at RMcD. I'm a complete idiot when it comes to navigating London, but even I managed it! I actually stayed at RMcD with my husband and kids this time as I couldn't BF Leo for 3 days and it was too much like torture to be there. It did at least mean I could get good sleep, then catch the first bus there, and then stay until 8.30, get him settled and then return to the house and a meal on the table. Sometimes, if you're really unlucky, it's full at RMcD Level 1 - I ended up sleeping on a bed in the Renal Unit one night!
Clothes - Savannah has a washing machine and tumble dryer you can use (take your own powder with you) and there's also facilities at RMcD House at the Guys site, so you can turn clothes around very quickly if you need to.
It gets chillier on the ward in the early hours of the morning, so you will want a couple of soft blankets for Mia (so that you can have one in the wash if you need to) Also, pack some soft socks that you can use to pop over her hands/feet where the cannulae are. It stops them from waving around and scratching their faces, pulling at the ng tube etc.
PICU - really dry in there. Eyedrops, lipsalve and handcream all very useful to have with you!
Claire's diary suggestion is a really good one. I did it this time around for Leo's bowel surgery and it was lovely to record the 'small details'.
Savannah has the advantage of course, of the ECHO parents room (had to plug it!!) so you have tea, coffee, toast on tap - I have never eaten as much toast as I did in those weeks when Leo was on that ward!. The staff are great, the nurses take their time and are really kind with the kids, and the doctors really know their stuff but are also extremely approachable.
If I think of anything more, I'll post again. In the meantime, am thinking of you and your family, and sending a hug to Mia x
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