Well, since SO much has gone on since I last posted...this will be long winded! Hang with me!
It started out that Ashlee had a cough for months that would not go away. Continuous CF lung exacerbation untouched by oral antibiotics. After trying so many oral and inhaled meds, it came down to her needing to be admitted to Spectrum for IV antibiotics for 10-14 days. Typically called a 'tune-up' for CFers.
SO Ashlee was admitted on Feb 8th, did GREAT with her IV (only the thought of it made her cry, they numbed it and she never felt a thing!), then got a PICC placed a couple days later. This was to avoid any further poking during her stay, everything could be done right through her PICC. She did Vest and neb treatments 4 times per day while hospitalized (which was wearing her out)! She was a trooper though and made it through 10 days locked in a hospital room! She did get to take a 4 hour leave of absence to go to her Valentine party at preschool, which was quite awesome and she enjoyed every last minute! It was hard to see her go BACK!
Anyways, she was released on the 18th and has been doing GREAT ever since!
During Ashlee's stay Jordin was continually wheezing and coughing. She was put through a cycle of abx and steroids and then another cycle which did NOTHING! Might I add, she had been teething this whole time as well! Not much of a happy camper, especially all the time she had to spend at the hospital unable to climb all over!
SO, off we went to clinic AGAIN, with Jordin wheezing significantly. They did a miracle duo-neb that made Jordin sound the best in a while and said she had to be admitted right away. We were not even able to go home to get anything! Best part was that Jill just arrived home from Florida that day! So she was able to come get Ashlee and get her home to her meds and bed until Dewayne got home from school! Greatest help of all!
We waited for a room and bed to be available in the closed clinic, then walked to the hospital with the doctor. Jordin got her IV and labs done shortly after with no problems (except the typical crying from being woke up with a needle!). She was doing so great while at the hospital. She was put on IV steroids and the abx as well. We were hoping for just a few days stay with her (come to find out I was having my chain pulled all along...JUST as I thought!...and there was a standard on the abx...so from the beginning we needed to stay a min of 7 days! UGH!)
During her stay, I think Thursday, she got the flu (probably brought in by a nurse). It seemed to only bother her for the morning, then just less appetite throughout that day. Friday, I went home for a while, then the weather got bad, so I stayed home with Ashlee. Well, right in the middle of making dinner, I got so sick! I could not even get up for the lat 3 hours of the night, not even to finish the dinner :o( Ashlee had to take care of me all night! Obviously, I had the flu (to go along with what I later found out was a sinus infection I had during these 3 weeks of hospitalizations!) It took me a day or so to start feeling better from that, but my sinus infection kicked in to it's worst. Then, Dewayne came home and ended up with the flu on Sat night! So needless to say, Jill spent a couple nights at the hospital taking good care of Jordin for us! Couldn't have done it without her!
During the time that Dewayne was there, they had to replace her IV with a new one :o( (was hoping this wouldn't happen while I was gone!) He called and said they were having a hard time finding any more good veins. They told him she had a good one in her head though...and you know he wasn't having that! I was a wreck when he called and told me this (as well as just getting over the flu the night before). I was waiting for someone to call and talk to me about it when he called back and said they finally found one in her hand! YAY! She went through much torture without me there to comfort her though :o(
Anyways, all went well after that and she was scheduled to come home on Tues. When we woke up Tues, after being taken off all IV meds, she was again wheezing significantly :o( I was SO worried they would make us stay longer! We got the duo neb going again and it worked really well. The doctor wanted to know if I was really ready to go try this at home and I was FOR SURE ready to get out of there! Her asthma is something we are going to have to find a way to make better at home...she can't stayed hooked up to IV steroids the rest of her life!
Jordin was SO happy to get home and get around on the floor and do her own thing! She is VERY mobile now and gets everywhere!
We have been home for over a week now and Jordin still wheezes during her active times (which is most of the day) and has a yucky cough and hoarse voice at times, especially when crying. I broke down and called the clinic today, waiting for a response at this point...dreading it :o(
GOOD NEWS! We may be moving VERY soon!!! Picked a place and waiting on approval, but looking good! This new place will be SO much more healthier for the girls and will give us some much needed space! SOOOOO excited!
Sorry this had to be so long! I really gotta get on myself and keep up with this! lol Hope I didn't forget anything (I probably did :o))