We got home Friday night about 7:30. After being in KC 13 days out of the last 30, I think Kaedra is happy to be home and hoping she'll stay here! I am surprised she doesn't scream everytime we get in the car. I want to! LOL. I guess I will take three days worth of clothes and all of our toiletries every time we leave the house. (just kidding....sort of.)
Here are the things we need prayers for right now:
1. The Infectious Disease docs are keeping the picc line in for 4-6 months.
2. Not only will she have the picc line in that long, they have her on 24 hour a day penicillin.
3. Okay, those two are bad enough, but the pump is fairly large! (at least for a two year old) It would be a small sized pump for an adult, but it very large for her. She can't wear it, it would be far too heavy for her back or shoulders and so she has to drag it with her everywhere. She forgets sometimes and when we remind her, she sometimes gets mad about it. She has about 5 feet of tubing from the pump to her arm, which is great at home. However, at this point we can't take her to church with this thing. If the other little kids in her class pulled on the tubing, tripped on it or anything like that, it could pull the picc line out of the correct place in her body. Also, the pump has far too many cool buttons to play with. It is hard enough to keep her from playing with it, much less 7 other kiddos. The nurse that came and trained us on Friday night completely agreed. She said this was NOT made for a 2 1/2 year old! (The fanny pack they gave us to put it in is longer than Kaedy's whole body!) We are going to try to see what else they can do for her. We have a lot of calls to make tomorrow. We are praying that either the docs increase the rate and let her just be on it part of the day (like overnight)or, if it has to be 24 hours, they will figure out a different delivery system. I don't want to keep her from church for 6 months and starting in August we have our homeschool co-op and had planned on being in that, which would mean she would be in the preschool. And then we can't go to parks...ugh. We need her off of this thing.
4. Furthermore, the ID docs could not get the ID doc here in Tulsa to call them back so they say I have to go back in two weeks. BACK TO KANSAS CITY!!! NOOOOOOOOOOOOO! So please, please, please join us in believing that we can get ahold of the Tulsa doc and get him to take our case so we can stay down here. (until Kaedy's next expansion in November.)
Last night when we got ready to change the bag of penicillin, the pump beeped and I said to the nurse, "okay it's done." Kaedra started clapping and yelling "YAH!! YAH!!" That caused Michael and I to cry because she thought that she was done with the machine. It was so sad. Today I dropped the girls off at church (Michael has to be there an hour early because he helps with sound) and Kaedy was crying "church, church, church." ARGH Please join us in agreeing to get rid of this thing -- the whole thing: picc line, meds, pump, everything. Thank you!!!