Sam has had a great 4 days at kindy. Actually we were home for a whole week and he was doing great. His walking was very stilted and penguin like after 17 days of inactivity, but he was determined to charge around with his friends at kindergarten and was climbing up and sliding down the firemans pole as soon as he could.
Yesterday at lunch time his urine looked a bit cloudy, then by 7 at night he had a temp. He had a high temp and sludge for urine overnight and I brought him in to the emergency dept this morning. He has been in and out of theatre and now has an IDC inserted - an indwelling catheter. He has started abx and is now on 24/7 bladder wash outs.
This time he got sick really fast - he is miserable and still having temps etc. I found it upsetting as people say things, that when I have had sleep I don't mind, but after being up most of last night they hurt today. Flippant comments about me being 'tough' upset me today. It wasn't said in a complementary way, but implying I was a cold mother. If they saw me holding back tears as I held him so tight as he fought me screaming 'don't take me in to surgery... No Mum!'. What good is it for anyone at that point if I wasn't tough? He had to have it done - it doesn't mean it doesn't crush my heart.
Tonight there was another incident with Sams care and that upset me. I wish I didn't have the burden of his care, but when systems and people fail him on a much too frequent basis, I am here to protect him. On one hand I am so glad I felt to double check and a terrible scenario was avoided, but I find it so distressing that is so often the case and I wish I had a reason to trust..... But I don't because I can't, because Sam has enough to contend with without having avoidable human errors dumped upon his already struggling system.
I wish I had something lovely and cheerful to write, but tonight I disappoint both me and you on that front. I wish we were home as a family and that my darling boy was with us.
Oh one lovely thing happened today as an orderly was wheeling Sams bed to theatre. He was a gentle giant and he hi fived Sam and then put his hand on his head and asked Gods peace on his life. It was a lovely human touch and a supernatural reminder that actually I don't carry the burden of care for Sam but the loving God that I can totally trust does.
Please pray for Sam - this is the first time in a long time that I have seen him so unwell.