So we both had afternoon Sunday naps today - because we were so tired after Sam woke screaming at 1am with the line in his leg having tissued. As his central line is waiting to be put back in to the main vein (under GA) he has been using a peripheral line for 24 access for his TPN. Unfortunately the smaller veins aren't really cut out for TPN and he has been going through one a day. When they tissue they are incredibly painful and it's also disappointing as it means he needs another line put in.
Last night when he woke he calmed down after about 10 mins with cuddles and after pain relief started to kick in. At about 2 am a Dr came and tried to put in another line. It took 2 nurses holding his arm/hand + me restraining him + the Dr trying to put it in. Sam was not happy and it isn't nice for anyone. Unfortunately the Dr couldn't get the line in, as his veins are really small/difficult to find and I'm so pleased she decided it wasn't worth trying him again as a pin cushion. So Sam has been on 24 hour feeds of milk and paedialyte to make sure he gets the right amount of calories and fluid. All of this is to buy time hoping his lungs will improve enough for a GA. It does mean that his kidneys and gut are working overtime so he needs to have his kidneys drained every 2 hours instead of 4. The time rolls around very fast and my dreams of lying about reading a book and relaxing have been thwarted by a boy that needs constant care or else play time! His latest game is catching and throwing bee, which he finds hilarious and can last for 30 mins at a time. All good exercise for his upper body and getting his lungs working. Not so great for me keen to finish my novel!
The good news is that today they weaned him down and he was off oxygen for about 3 hours. At 2pm when he went back to sleep his lungs also went back to sleep (!) so he needed oxygen again. He is sleeping now with 1 litre of oxygen, but we are pleased his lungs have definitely improved. The weekend medical team are hoping that he can make a surgical list tomorrow. I'm not hopeful as nothing has been put in place that would indicate this (no nil by mouth instructions etc), so I'm reckoning on Tuesday at the earliest. Weekends are frustrating as progress as we are in a holding pattern til Monday rolls around.
I leave you with photos of Sam - he looks like such a fraud when he is so happy! The innocence of a child who is just so happy when his blocks fall down..... ah when did I last belly laugh over something so simple?
It is school holidays here in NZ. Jasmine is off for the week to Camp Raglan Survival Camp - a week of adventure/challenges for 11 - 14 year olds. Candace is on an adventure with her 'adopted' family heading down to Tekapo on a road trip for 2 weeks. It's so great they both can get away and we are so appreciative of the kindness extended to us which means we can focus on Sam and relax knowing the girls are happy and being kids.
Nearly 2 weeks into this admission I am getting tired and the busyness of running birthday parties, end of term music performances for the girls on top of sleep deprivation means I am a bit fragile. Some people comment to me that I should do less - how do you tell your daughter that she can't have her friends around due to her brother being in hospital, or that I haven't got time to make her birthday cake as I'm in hospital? I don't want her to resent him and I also want her to enjoy her milestones. I guess it's no different to Mums that stay up to midnight icing birthday cakes - we do it because we love our kids and want them to feel loved and special. It just takes a bit more planning and time having the kids in 2 different locations and my car looks like a wardrobe. The other day my friends 15 year old son jumped into my car but I had to move a pair of socks and undies that was sitting on the seat! I had grabbed them from the washing machine on my way to work and was heading straight to Starship after work to sleep the night.... so that was a slightly hilarious/awkward moment, but he took it in his stride as he gets our weird family!
My hopes for this week are that Sam gets his op soon and that the surgeons are able to use the same central line vein and not require more invasive surgery. I hope that the girls are safe and having special memory moments with their friends. I hope Francis and I get to see each other and have a proper conversation that involves more than logistics and can enjoy each others company in spite of living in the Starship fish bowl (could be renamed Starfish!) and that I will be able to pause many times each day to remind myself that all of this that seems too big for me is not too big for God who holds us all in the palm of His hands. I want to be grateful and hopeful, because the alternative isn't very lovely!
I also hope that you reading this have a great week - not maybe in measurable outcomes, but in living life well each day.