Monday, 2 July 2012

Day 1.......of 5.

I am going to do things a little differently this week. As many of you know I struggle with hospital stays and seen as that is where I am at the moment I wondering maybe blogging at the end of the day will relieve some of the thoughts and emotions that make me feel like my head will explode.

So today is day one. So far so good. We were collected on time and it took 2 hours. The driver didn't say a SINGLE word to me. Nothing. Was a very quiet journey by all accounts although reasoning with a 3 year old that a 'garbage fuck' and a 'fuck' were different. Of course he meant a garbage truck, and a truck, however as i tried to get him to call them 'lorry's' instead he thought i was offering him a 'lolly', and so he began a mini tantrum over a lolly, or lack of.

We arrived in one piece, managed to place our belongings in a 'luggage storage' area in the 'patient hotel' and dashed to the 'lagoon' which is the new hospital canteen at gosh. While i was impressed with the space and the difference compared to the old one, Rowan was fascinated with the 'mickey mouse club house' and the fact he can choose snippets of mickey mouse to watch on the tv, yes this is IN the canteen, sorry Lagoon.

Rowan attempted his first 'physio rehab' session today and it didn't quite go to plan. The session was for an hour, Rowan screamed for 30 minutes, then was cuddled for 30 minutes. He has learnt screaming gets him what he wants as he is so LOUD! Tomorrow we will try again however. Now that the physio team know its all noise and i'm happy for them to tell him to pack it in.

We then popped to the ward we will be on tomorrow, sorted out some emergency meds for me (easier to get it faxed over from my psych than to try and see a 'crisis team' in London psych). The gastro CNS also came to see us to swab Rowan's feeding tubes again as it would appear the infection is there, and the fucidin cream we are using may well be causing contact dermatitis. Anyone have a brick wall I can bang my head against? With the green output that is leaking from Rowan's sites he may also have a gut infection. We will have to wait and see when the results are back Thursday.

The plan for the week is at least one physio session every day. Metabolic review, Endocrine review, Gastro review, peg change, liver biopsy, lung vq scan.

Tomorrow at 9am is the lung vq scan. This I am in no way looking forward to. Whether i approach it with a positive mental attitude, or whether i approach it expecting it to be awful I haven't yet decided. There are pros and cons to both. We shall see how my mood takes me. One day at a time.

1 down, 4 to go. (oh and yes it is my birthday today, no i haven't done anything nice, and no i have nothin planned)

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