Friday, April 5, 2013

The long and short versions of our week

The short version:
Coughing. Calling. Listening. Waiting. Testing. Worrying. Hearing. Deciding. Scheduling. Rearranging. Sleeping. Starving. Prepping. Surgery. Waiting. Confirming. PICCing. Training. Ordering. Administering. Tiring. Hoping.

The long version:
Per my last post, Drew had a bronch last Friday and on Monday afternoon we found out that he grew achromobacter. We scheduled a PICC for Tuesday morning. Thank God my neighbor was on spring break and could watch the other kids all week because we needed her big time. I took him in at 9am for an 11am PICC placement. They only sedate kids for PICCs if a) they just can't handle it or b)they can be in patient for a recovery period. I usually insist on no sedation because I always want to go home. So they papoose him and a whole army of people use videos and toys to distract him while we restrain him for this sterile and somewhat dangerous procedure where they place an IV line into an artery in his arm that leads to his heart. Anyway, they found a good vein in his left arm and we got to work. The worst part is the lidocaine they use to numb the area because it burns and stings like a mother. He was so so brave and didn't cry or anything getting up onto the table, but you could tell that he was getting nervous when we started holding him down. Then the stick came and he just cried. He just looked at me and cried and cried and cried. They got the line in and then blew a vein. UGH! So they tried again. This time they got it in and started to feed it up his arm and boom, another vein blew. They told me they've never had this happen before. My poor baby was hurting big time, and now they had to switch to the other arm. It took almost an hour and a lot of sticks, but they got it in. We had a small amount of time to grab lunch and when we started to eat he cried to me that his "arms were broken". With lidocaine in both arms, he was totally numb and couldn't use his arms to get food to his mouth. He was so sad!

We headed over to the ER then to administer our first dose of antibiotics to make sure he didn't have a reaction. This is standard procedure. He was exhausted by this point and so was I, but a day in the hospital for 2 weeks at home was worth it. Each med takes 35-40 min to administer and we do 2 meds each 3 times a day. We are spending almost 4 hours a day now administering IV antibiotics from home.  We. Are. Exhausted. I don't like to complain, I don't feel it gets you anywhere. But holy crap are we all tired. As I've said before, this whole CF thing is something that our whole family lives with. Mom and dad are tired, physically, mentally. emotionally, and the kids are all aware of that. There is fighting, acting up, throwing fits. The phone calls and coordination necessary to do this all from home requires a small business logistics department, and its a role that I'm having to fill. That means that when the phone rings I need to get it, even if I'm in the middle of a game, or if we're outside, or whatever we're doing. I hate when they're upset because of something I'm doing, namely not giving them the attention that they need from me. They're really being pretty good, given their ages and what I've been asking of them. But its hard.

To add to things, the gig I've been after since November finally came to fruition and training for that started this week. Oh yeah, and SEVEN members of the Cystic Fibrosis Foundation leadership team are coming back to CCHMC for a meeting on the C3N at the end of April so I've been working about 10 hours a week prepping for that. I am so excited for this meeting. I've been working on this for almost a year, trying to bring a C3N to Cystic Fibrosis, and it is about to go down. For real! But it's been busy around here and I'm ready for a weekend of going to bed early and waking up later. We will have that again in 2 weeks when the IV's are done because right now we have to run them from 11:30-1am and then again at 7am . Hopefully though it kills this bacteria and Drew is healthier and then we can implement this whole C3N for the CF community and improve things for everyone and then cure this disease and get on with our lives. Or something like that.

I was on a call today about N of 1 trials, an intervention that is a part of the C3N platform. It was a really good presentation and explained very nicely how this sort of thing would improve healthcare and outcomes for a person living with a chronic CF. All of these interventions and ideas that I have shared have been and are being piloted in the IBD community, and the work I'm doing will be with the GI clinics at CCHMC, but I see and I think I have been able to show the right people within the CF community the value that a concept like this could provide to us. We're getting there people, and I won't stop until we are. Watch this if you have a chance, it's good!

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