A little easier

Life is.. a little easier I guess. Everyone who told me in a week that the PICC line care would be easy like the G and J tube care, you are so right. It's easy as pie now and I'm so quick at it! wewt! Last week was pretty difficult though with her PICC line. AS you guys know, we had an issue with the Kink in the line, but over last weekend, I had noticed a lot of blood accumulating under her dressings, and it was getting worse every day. it semed that the line was just moving in and out everytime her arm moved, which was causing some bleeding that eventually got to a point that I wasn't comfortable with, so on Monday, she, again had toh ave another dressing change and we were working hard to figure out how to secure her line. Her nurse said that it was protruding quite a bit (in other words, her body is trying to push it out of her), but we did what we could and are going to salvage this line for as long as possible. I have pictures, but can't find the USB for my phone so i'll have to post them in my next entry.

And in case you didn't know, dressing changes are complete torture. and this has to happen no less than once a week, so having to change the dressings 3 times within 7 days was just not exactly comforting. Poor baby screams so much through the changes.

I couldn't figure out for the longest time how on earth Quinn's PICC line was helping her pain in the stomach. I mean, yes i'm sure it was helping her with the hydration and everyting, but I figured that since we were actually trying to INCREASE the feeds, the pain would still be about the same. Well, I finally came to the conclusion that draining her G 24/7 (or at least near that) is helping her pain tremendously. Before, i wouldn't drain her G all the time, only during periods of extreme distention (usually like 3 times a week), but since getting her PICC, i'm able to hydrate her and replace fluids if need be, therefore she is continuously venting and draining her stomach, which has actually caused her pain to be decreased by a crap ton! She blows up the ferrall bag like a balloon no less than 3 times a day, but man, the pain is so minimal. I am hoping there is a way that we can doing this without the PICC. the hydration is obviously essential, but since i've narrowed down the culprit for her pain or at least the majority of it, maybe we can work towards some kind of supplements getting added to the J feeds to hopefully keep her at the hydration level she needs to be at in order to remove the PICC line. Her stomach motility is still crap. She still gets a ton of pressure build up to the point of blowing mic-key button valves, leaking around her J and now a new development, blowing out her meds and her extension (which was hopefully a 1-time-thing, cuz that was just so strange). But her entire motility of her stomach is just the pits... and her small intestine... and her colon. Gosh! i really hate that.

In other news, Quinn is feeling much better, the point of annoying the crap out of me all day long with her questions and energy levels. I just don't know what to do with it. I mean i'm so happy that she has so much more spunk now, but she's getting on my nerves. I just want someone to come and take her for an entire day... some one i trust, someone who i won't feel guilty for leaving her with them for 24 hours, someone who doesn't mind if i use them just to veg out on my couch for a whole day... hrmmm that won't happen, but it would be so nice!

April 7th is the BIG DAY we get to see Dr. B in CHLA.. this is the MITO doc. My mom was talking to someone in her dad's hospital... eerrrrttt... let me stop right there and just ask for prayers for my grandpa, he was given a 1 % chance of survival a couple of days ago. He suffered a heart attack, collapsed on the floor, was given CPR, was shocked and everything and intubated and my mom was making the decision to pull the plug when he made a miraculous recovery. He still needs prayers but he is awake, and talking and the nurses and doctors said it was just a miracle. There's obviously something more he needs to do in this life before he goes on.

Anyway.... in this hospital, my mom was of course, talking about Quinn and she came across a resident who was training with a bunch of Mito patients who are in clinical trials for bone marrow transplants! He said the kids who were severely affected and unable to even walk didn't have very good outcomes, but the children who were able to walk and talk, though still obviously affected by their disease, basically children like Quinn, if they gave the bone marrow transplants early, he said that there were a lot of improvements! This makes me feel really good about them possibly coming up with a treatment soon! I can't wait to talk to Dr. B because her neuro was talking about how he thinks she can possibly enroll in some clinical trials! that would be amazing if she could enroll in a clinical trial that would help her! I would be so happy!