Wednesday, November 23, 2011

Well, as if being in the hospital isn't stressful enough, Jordin's little body doesn't want to cooperate with us! As you know, the week before we came here she had puked up her J tube. It was terrible! Anyways, we got that replaced the next day in GR. So, fast forward to exactly 2 weeks later...her J tube had escaped her intestine again! It was just swimming around in her little belly, a 22cm tube. Gross, I know.
SO, we had to go to the OR on the 21st to have her GJ tube replaced AGAIN! This time under complete sedation with breathing tube...never very nice after wards :o( Okay, so if that wasn't enough...not even 24 hours later she's got milk draining from her g-tube AGAIN! X-ray showed that the tube had already migrated it way out quite a bit...not all the way though. This one was a 30cm one (same size as she had puked up before :o/). SOOO, back to the OR today to get it replaced yet again :o( This time, the doc called FROM THE OR, I could hear all the machines in the background! He needed to tell me that he had to put in a longer tube without a button cuz that was all they had in the size he needed to do (as the other would just come out again).
So now she has this longer tube sticking out with HUGE G and J ports :o( It sucks. Really. Hope it works though.
She also had a sleep study, or polysomnograph (I think that's how it's spelled lol) done to try to figure out her random o2 desats during the night. The docs came in today to tell me that she has obstructive sleep apnea.
They said that she had about 9.4 episodes of apnea an hour! I am so glad that someone finally listened to me about the desats at night! I was sick of them telling me it was cuz the probe is sensitive! Damn nurses. Anyways, ENT was consulted and they said that her tonsils are enlarged He said that on a scale of 1-4 for tonsil size she is at a 3 :o( We're hoping to get her in on Monday to get her tonsils removed. That will be her 4th trip to the OR in our almost 3 week stay...not sure how long we'll be kept after that point. If we'll have to stay and finish another week of IVs or what. I am hoping to talk to my doctor next week about Jordin's (non) improvement.
Cuz I know if we go home like she is, she will just be on oral abx and we'll be right back where we started. So frustrating!
Dad and Ashlee came to visit last night and today! We loved to see them! Jordin just couldn't get enough!
We were very sad to see them have to leave :o( Esp knowing that we are staying longer now and the events aren't over. We miss them so much.
Well, for now, we're just hanging out for the weekend. Wait and see what a new week brings us. Hopefully we can have a very uneventful weekend. I think we deserve one! Happy Thanksgiving everyone!


  1. You're getting answers finally but it's too bad that Jordin has had to go through so much for the answers to come :( I said extra prayers for you, Jordin, the family, the doctors and nurses so let's keep our heads up and KNOW that things are going to get better!!!

  2. Found you from the cf blog roll ~ what gorgeous girls, wow! I've got a 17 year old boy w/cf and a newborn girl w/cf, and 5 more in between, carriers only. Looking forward to reading more and visiting . . . I'm actually sneaking right now when I should be doing dishes!

  3. Hi, I just found your blog on the cf blogroll (I have a 3yo with CF). Your girls are just adorable and it seems like you certainly have your hands full!! I'd love an update about your family if you have time :)