4/14

It’s been a while! Sorry about that. I get busy and I guess I assume that you all assume that no news is good news.

Ben is doing really well! It’s pretty remarkable that we have made it this far and haven’t had to go back for any overnight stays at the hospital for fevers or infections or illnesses. We’ve had some close calls with fevers that quickly went back down, so we avoided the trip. Thank goodness. Because last time we went to the hospital for a fever, we were stuck in there for an entire month. Not saying that would happen again, but our track record with fevers and the hospital hasn’t been great – way longer stays than just a 48 hour turnaround.

Ben put on a little over 3 lbs over the past 2 weeks. He’s eating and drinking more. We finally found the secret to getting him to drink water – Crystal Light On-The-Go packets. Lemonade flavor. Don’t leave home without them. We’ve been reducing his overnight fluids – 1000ml, then 750, then last Thursday it was down to 500 and last night I set it to only 250 ml over 10 hours – the pump was running so slowly both Ben and I thought it wasn’t working at first. Tomorrow night might be his last night of fluids! It’s funny, every time they change the amount, the pharmacy calls and asks if I feel comfortable changing the settings on the pump myself. The pump is very easy to run, but it’s an expensive piece of equipment. They trained me, gave me written step by step instructions, and send out new instructions with every new shipment of fluids (which I never even look at).

So each night, several hours before bed, I need to remember to take a bag of fluids out of the fridge so it can sit on the counter and warm up to room temperature. If I don’t, I have to carry it around with me and hold it in my lap while I read to the kids or put it in a heating blanket if I’m really late. Then I wipe down the tray I use for all Ben’s stuff, glove up, open and prep the tubing and spear one of the access ports on the fluid bag. Then I hold the line up high so the air filter is at the highest point and squeeze out all the air in the bag. The fluid runs up the line, fills the filter and starts down the other side of the line. Then I can hang the bag on the pole and run the fluids through the rest of the line. When the fluids reach the end I clamp it and start to get rid of the air bubbles by pulling the line tight and playing it like a bass guitar. The bubbles run to the end of the line and I let them out, and then we are ready to hook up to Ben’s central line. Which is then scrubbed, dried, unclamped, pushed with saline, reclamped, and then hooked up to the line, unclamped again, main line unclamped, pump started. See, no big deal. 😉

In the morning, I scrub each line (30 seconds!), let it dry (30 seconds again!) push saline on the one that had the fluids going into it, then heparin for each of them, then cap them off.

Then there’s the pills morning and night, the nurses come on Mondays to draw labs and ask all the questions and tell me that it’s time to change his caps and dressing, which we do and I’m getting better and better at, and Thursday mornings are the long clinic visits at the hospital downtown. Oh, and physical therapy once a week – we found a girl he really likes and wants to go back to! And school every day.

So, what’s coming up? Today is day 84! We are getting so close to day 100 – April 30th! Dr. El-Bietar is talking about getting Ben’s central line out as soon as possible, I’m assuming that twice a week labs will be a thing of the past, and hopefully several of his meds will be discontinued at that point. Ben would like to have a normal summer – going to the pool and Kings Island with his friends, etc.

Speaking of summer and relaxing and all that… Have I mentioned that Ben qualifies for Make-A-Wish? The good people at Make-A-Wish are coming to our house tonight to do paperwork and discuss what Ben would like to wish for.  It sounds like his top pick is a trip to Hawaii to learn how to surf and see a volcano. But he saw a brochure for Universal Studios again last night (thanks Roxann) and now he’s torn. I’m quietly pulling for Hawaii, I need a beach vacation. I’m super tired. Standing in lines and keeping the energy up to run around theme parks doesn’t sound like fun right now, but I am comfy in my bed right now, so that might be why.

As for the rest of life, everything is going way too fast.  Josh will be graduating soon, there are transition meetings for Jill and Ben who are both moving to new schools next year, Sam is in Fiddler on the Roof and then this summer will be in Les Miserables down at Sycamore High I think, Mark is traveling again, I’m trying to get projects done in the house, we have the kids’ friends in and out of the house all the time, which I seriously love, and sometimes I have to text or email Mark and the kids information to be sure they get it because otherwise I’m not sure I’ll remember to tell them when I see them. But this is all the same for every other busy mom, I’m sure. Here’s to a fabulous April that is already halfway gone!

Update since 7:30am when I finished writing this – Jill threw up on the bus, the bus brought her straight back home, we got her in the shower where she threw up again, then got her cozy in some pajamas sitting on my bed with a bowl. A little while later, she slowly flopped back on top of me – something Josh would have done to be weird, but out of character for Jill.  I got out from under her and saw that she was passed out, eyes open, unresponsive – it lasted less than 10 seconds and then she sat up and threw up again. So now we’re at the doctor. They think probably she started throwing up and couldn’t catch her breath and passed out, and it’s probably a virus. She also told the doc her vision started to get weird on the bus before she threw up. Anyway, she’s negative for strep, and her BP is a little low but not bad.  So that’s the news, I may have overreacted.

Another update, 2pm – Jill has a low fever and passed out and threw up again. Hmmm…