Well it's been a week of much soul searching, and as hard as it has been, we've arrived at the decision to have Samuel admitted back to Starship so I can have some respite. His health is great and he is happy and contented, so it's all a bit bizarre choosing to send him back. The accumulative effect of sleepless nights, hospital admissions and managing Samuel's complex cares along with the girls needs are starting to hit and I'm pretty exhausted with little reserves.....Francis leaves for a 2 week work trip tomorrow and with 2 days left of the school holidays now seemed as good a time as any, and I can get some time with the girls to do the things we can't do with Sam - school shoe shopping, hair cuts, swimming and maybe even the cinema!
On Tuesday we are having a meeting with the Trust that fund care givers in the home and I will be supported by hospital staff, social worker and home care nursing team to put forward our case for more funding for help/respite.
On each floor of Starship there are play specialists who ensure the kids of all ages are stimulated and have a variety of tasks. This, along with 'hospital grannies' and physios, will hopefully mean that all Sam's usual routines will continue and we will of course be popping in to hang out with him, and his doteing Nana will be too.
I'm disappointed in myself that we haven't been able to sort out respite in a better way and I know I will find it hard leaving him in hospital, but I also know I will sleep well at night knowing he is well cared for...and I won't have his usual interruptions.
I've just re-read the above and I'm conscious it sounds hard and cold.....I'm not meaning to be.... I'm actually not 'feeling' that much - maybe a bit numb, a little bit of relief, disappointment, frustration at the systems of funding, motherly guilt, sadness for the girls as they adore their brother.... so a mix of things whirling in my head but I'm trying to be pragmatic, knowing that this will mean our situation can be reassessed and we will have access to some more funding which means we can have either regular respite or have carers available that are trained sufficiently to handle a PICC line and TPN.
Here's leaving you above with a fresh photo of Sam from this morning, and our girls holiday activities - junk modelling with the mountain of boxes that bring Sam's supplies. They've been such great girls this holiday and haven't complained or moaned at being at home for most of the time.... and thankfully they're creative and easily pleased with a bunch of boxes! They had a great time making dolls houses in the sun with their friends.