Monday, July 1, 2013

Life with Cystic Fibrosis

Well, I complain to myself that I don't have enough time to write up a blog post. I just got my wish for extra time, not the way I wanted though.

There are days when we don't really even think about Elizabeth having CF. We do her treatments then go on with our day. Then there are times when CF rears it's ugly head and slaps us across the face and we are forced to remember what we are dealing with. Then it gets scary for a bit. I feel for families who deal with this kind of crap on a constant basis. I'm hoping this doesn't turn into a normal trend for her.

 Elizabeth has had a cough for probably 6 months now. It's been better then worse then better back to worse. We've put her on two rounds of antibiotics during this time and it helps for a few weeks then she's back to hacking and coughing her head off. At her quarterly visit in March her PFT's (breathing tests) were down a bit from her normal. We didn't worry about it too much, she was feeling fine. However, the stupid cough continued. She had another visit yesterday and I got a phone call from Rob that they wanted to admit her for 10-14 days for what is called a "tune up" in the CF community. 14 days of around the clock IV antibiotics. UG! At first I fought it, I seriously think a lot of the problems stem from her sinuses, they are all blocked up again. That usually causes decreased appetite and coughing. But at her last visit the doc said she was fine for a few more months. It wasn't her regular doctor, I should have made sure she went back a few weeks later. I'm sure there is another sinus surgery in the near future. Anyway, her regular nose doc is out of the office until Sept so that blew that. I finally had to concede that a hospital visit was the best thing. After lots of tears from all three of us (Elizabeth, mom, and dad) we got arrangements made to get her settled up at Doerenbecher. Timing could have been better, both boys are gone this week to camp so I am out my regular babysitters. That and we were supposed to take off for Idaho next week to visit family. So frustrating. That will probably be postponed. They keep trying to tell us that if she does well on her breathing test next week we could possibly take her home and do the treatments at home and on vacation. Um, after seeing how long she is actually hooked up, I don't think so. One antibiotic runs for 30 mins and is needed every 6 hours. The other runs for 2 hours and is needed every 8 hours. Wouldn't be much of a vacation if we had to spend the whole time monitoring the IV. There is a slim chance she could just be good to go by next Tues, but we aren't counting on it :) So, these "tune-ups" are pretty normal for a CF'er. Probably lucky we've managed to hold it off this long. Still doesn't make it an easier. We got her up here about 3 pm Tuesday (June 25th). First order of business was getting an IV started in her hand. They eventually wanted a picc line but we were up here too late. They wanted to sedate her for it so would wait until morning. So in the meantime they just hooked her up with a regular IV. The poor kid has a mortal fear of needles. It's way beyond a normal fear of being poked. Took four nursed to get her to finally let them insert an IV. There is this wonderful person whose job it is to comfort the kids. She did a wonderful job and after Elizabeth started freaking out she was able to get E to breath and focus somewhere else. Then gave her several gifts, stuff she could make and play with, since 2 weeks is a long time to be stuck in the same room with nothing to do. So far, she's doing good. They removed the IV in her hand after getting the picc line in this morning. I was not here, Rob and I are swapping off time up here. Rob said it went well and he got to see the cool x-rays showing the picc line. They spent an uneventful day up here and I came up around 3. Thank goodness for good friends. Several friends stepped up and watched kids for us or made a meal.

Well, I don't get as much time to write as I thought. It is is now day 7 in the "hole". The days are passing. Some are frustrating, some are not. I wish the docs had laid it to us straight about her time here. We kept thinking if she did well on the breathing test (that was today, more in a bit) they would let her go earlier. But one doctor says no, the full 14 then another said if the test is good maybe she'll leave early. I'd rather they just say 14 days, period. I hate false hope. Keep it real people. Anyway, I don't think her breathing test went well enough today for them to let her go early. After several tries she finally blew a 91. She was at 81 last Tuesday so while that is good, we were hoping for better. She isn't coughing anymore and they say her lungs sound really clear so she should have blown higher. I know she's not doing the test right again. We've had problems with this in the past. I can see it, she's not taking as deep a breath as she probably could. But try telling her that. She blew that 91 and thought it was good enough. Erg. Oh well, 14 days no matter what. We see the nose doc tomorrow, not her regular doctor, so not sure I'll trust her :)

Other then all that, E is doing really well. We have spent the last two days playing games and watching movies together. She must be tired today as she's zoning in front of the Disney Channel. She's usually begging to play games or something. I'm mean, as soon as I know she's going to be unhooked from the IV for awhile I make her throw on shoes and we walk the halls. I think she'd rather lay in bed but she needs to move :) She's taking all if it in stride and several of the nurses have told me how much they enjoy working with her. Over the last few days the same lady was working the front desk and every time I checked in she'd tell me how sweet E is. I just laugh and think "You haven't seen her temper" haha. But she really is doing well.

Her parents on the other's just never easy to have your kids in the hospital. I finally had my melt down Friday morning. I had had a horrible night at the hospital. So no sleep and all the stress and I was a basket case. It didn't help that the day before, Thursday, I got a call from one of the scout leaders. I didn't think anything of it until I realized he was supposed to be on the camp out with the boys that week. I KNEW it would be Jonathan. He's such a stinking dare devil and thinks he's all that and more. Sure enough, little stinker was sand boarding and he took too big a hill and crashed at the bottom. He took the full impact on his shoulder and it broke his collar bone. Oh my freaking heck! I just said I've been waiting for this phone call for most of his life. It was about time. So, they ran him to emergency for xrays. They tried to tell us later that he just bent it. But after looking at the xrays myself I'm pretty sure it's broken and probably needs to be reset, OUCH!! So, Rob is right now at the docs with him to see what can be done. So excited to see what that is going to involve. You know how bad news come in threes? We are still waiting for the third. Unless the fact that someone left the freezer open for a day and ruined most of the food in there counts as the third. Please? I'll take that over more medical emergencies. So, needless to say Friday I lost it. I probably looked like Meredith having a tantrum in a 38 year old's body. Sorry Rob!! We finally decided it was best if I spend the day here and he stay home and work/take care of kids. No more nights for me. We talked to E and she agreed to try one night up here by herself and she did just fine. So that is the arrangement for now. She stays up here by herself, the nurses are great and watch over her, and I come up for the day.

 I will admit I've enjoyed my time with her up here. It's mostly quiet, we play games, laugh together, enjoy movies as much as we can with all the interruptions from nurses and therapists, and no screaming 2 year olds. I love Meredith but she is embracing 2 with everything she's got and I don't have the patience for it. So, I'm looking at this as a mini vacation from my toddler :) Bad, I know, but it's the truth.  I have my favorite respiratory therapists and look forward to their shifts as they love to talk and laugh and you can tell they love their job with these kids. Everyone up here has been very helpful and friendly and just amazing. I'm grateful for all of them. I'll keep you all updated.

First day, settling in.
Getting ready for the picc line. Women in front is Kim. Sorry you just get to see hair. She is the BEST!! Seriously, she is an angel in human form.
Little sister!
Little brother!
We love visitors, especially when they bring games!

Going for a walk
Oh my gosh, as I was finishing up the post someone walked in from Music Therapy and wanted to know if she wanted an instrument. They gave her a keyboard to use to practice on. Was just trying to figure out how to get hers up here. Doernbecher is amazing!


Quawana said...

OH my heck! You have been through a ton this week. Jill had so much fun and can't wait to go back and spend time with her bestie!

Christy said...

I was sad I didn't get a picture of the girls with my camera. I thought I had left it at home. Found out later it was in my bag the whole time! UG. I do have a pic on Rob's phone though. They did have fun together.

Hesses Madhouse said...

Yay! So glad you blogged it, Christy! Looks like she's in good spirits. Glad she's getting the help she needs.