So we got home a week ago on Monday. I should have blogged but just doesn't seem enough time in between sorting kids, bladder washouts, cooking dinner and working..... But one week on and we are all still at home. Sam has a uti again, which flared it's ugly head yesterday. We are managing him at home with more frequent bladder washouts and have introduced a,topical antibiotic bladder wash. This is the same IV med that he sometimes gets in his IV line, but this time I am diluting it into warmed saline and injecting it into his bladder. Once in I pull out the tube and leave it to hopefully clean out bacteria and then he is drained in 4 hours time.
Today he had a Ministey of Ed review at kindy and I also had a chat re hours of care that he is eligible for. Needless to say the care he requires isn't fundable as he is an anomaly and that means that sorting it out is time consuming and stressful and I would find eating bark more enjoyable than the ongoing battles and conversations/paperwork that it takes to educate people that round pegs don't fit in square holes.
I wrote the above yesterday .... 24 hours later and a couple of phone calls and now we have Sams funding for a teaching assistant sorted for next term - phewf!
Today is now Thursday. Sam had his last day today at kindy for Term 3, my last day of work is tomorrow as is the girls schooling, as the 2 week spring break rolls in. We plan to do as little as possible - but our deepest desire is to stay out of Starship for the holidays. At this stage it's 50/50 as his urine has cleared a bit, but not totally. We will keep doing the washouts and tomorrow I will talk with Starship and we will make a plan. We are hoping it involves home based treatment!
The girls are so excited to be going to Camp Raglan for the second week of the holidays. Camps are such a fabulous part of my childhood memories and secretly I wish I could go with them and do the confidence courses, kayaking, paint balling and all other things fun! But I will stay at home and I have booked a nurse to hang out with Sam for a couple of days so I can hopefully chill. We are weary - it's been a long winter and this mother is definitely finding it harder to recover from hospital stays and sleepless nights than I did 10 or 5 or even 2 years ago!
Hoping you and yours are doing well.