We thought Nurse Lauren was going to work today but she woke up with a cold. So it was just me and Nurse Julie. Of course my timing of everything was off but we made it out of here only about 5 or 10 minutes later than planned.
Hit registration, which took a while, and then we went to the Comfort Zone. They put us in a big room so we could be all together so that was good. Casey went first. After a lot of looking and warming up various parts, they tried his foot (where it was successful last time) but it was a no go. Then they got his left antecubital on the first try, whew! Casey kept everyone on their toes talking about his Google maps and songs and such. They got Colin on the first try in his left antecubital as well. Another whew! His poor little hands were dripping with sweat but he was congenial. The Comfort Zone nurses are used to working with kids so we had lots of joking around and some singing, oh my.
Headed up to the Children's Center. Some waiting. Check vitals. Head to the Bay. We waited to make sure their pre-infusion labs were good and then we got them out of their chairs and settled onto the beds.
|Colin all snuggled and watching a Charlie Brown's Thanksgiving while getting his infusion.|
|Casey is Google Mapping and chatting on his DynaVox while his infusions run.|
Casey had the Child Life Specialist, Jenny, to himself for a while and he loved it. They have developed a relationship over these visits and enjoy each other. She is a good sport. She takes Casey's orders for this or that movie and tries to figure out what he wants. "Man, movie, funny...Christmas." They finally figured out he wanted the Jim Carrey's version of How the Grinch Stole Christmas and they didn't have it anywhere in the hospital! They both got a chuckle out of that. And, it's not on Netflix, either because she went and got an ipad and tried.
Colin was pretty easy today. Some ows and one change of movie because he decided he didn't like it but other than that it was just routine.
Saw Dr. Zimacus, the endocrinologist. Talked about maybe jumpstarting Casey's puberty with testosterone injections. That's all I'll say here :)
Our only downfalls were: both Julie and I forgetting to give the boys their 1 o'clock feeds, and Julie forgetting to bring an extra Trilogy battery. Not bad for a long day at the hospital.
We actually had infusions done by 2:30 or so. Packed up, in chairs, with coats on by 2:40. Got the van by 2:50 and home by 3:20.
Again, I am soo thankful for our van, Nurse Julie and our hospital being so close and being so good to us.
Got home and started getting settled and Paul from Apria came with Colin's new heater. VERY long story short, Colin's heater crapped out on Thursday. Sent a script for new one to Apria on Friday. Apria came back saying they can't provide such a thing and to find a new DME. PFFFTTT! Luckily, we have two. What would we have done if we didn't have 2???? Colin could NOT have gone from Thursday to Tuesday with out a heated humidifier. Anyway, Apria couldn't figure out how to get one/bill one so they gave us one they had. I appreciate that but find it totally wacked out that they couldn't figure out the paperwork and how to bill for one. So many stupid changes going on.
While Paul and I were talking in the hallway, some drama was taking place in the living room. Gene was lifting Casey of out his chair thinking that everything was unhooked. Nope. Feeding tube was hooked to pump which was in the backpack on his chair. So, out came Casey's feeding tube with the balloon fully inflated! Ouch! Nurse Julie jumped to help and somehow tripped over Jaxon who thought she wanted to play so he started running around like a mad dog, and Julie landed in a not pretty way, but didn't land on a boy, so that's a good thing (they are laying on mattresses on the floor in the living room) but she did manage to break the end of the plunger piece of a syringe--who knows! All is good. Gene put Casey's g-tube back in--with only "a little dog hair attached to it" he said, ha ha. I missed the whole scene!
They've both been given Tylenol just to ward off any aches or ouchies and are watching a movie. Early to bed for both. Casey always seems a little pale and woozy after his infusion but Colin is as perky as always.
I have to go clean up their room (looks like a whirlwind was in there!) and put away things from our trip today and make formula. Oh, and I have to try to ready the 'aunt' room because Peggy will be arriving on Thursday!!!!