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!

Sentenced to 16 days Minimum :o(

Even though it's only been a week...it seems like I have a years worth of info to report! So much has been happening here in the past week! Well, as most of you know, Jordin had a bronchoscopy and lung CT scan on Friday the 11th. Following that we were admitted for more IV antibiotics :o( I will try not to leave anything out!

I will start from the beginning and try to stay on track! First off, her bronch again showed alot of mucus. They even gave me pics of her mucus filled airways as well as some mucus plugs in her lungs. Her CT scan showed, again, LOTS of mucus as well as alot of Bronchiectesis (in short...(brong-ke-EK-tah-sis) is a condition in which damage to the airways causes them to widen and become flabby and scarred. In bronchiectasis, your airways slowly lose their ability to clear out mucus. The mucus builds up, and bacteria begin to grow. This leads to repeated, serious lung infections. Each infection causes more damage to the airways. Over time, the airways can't properly move air in and out of the lungs. As a result, the body's vital organs might not get enough oxygen.).

SO, of course the doctors are very concerned as Jordin is only 2 and should not have encountered problems like this so young :o( At the same time they do a lavage (spray saline in the lungs and suction it out to get samples of everything in there as well as clean out some of the accumulated mucus). So far her culture has, again, grown lots of MRSA and also aspergillis again :o( Not good. The MRSA is just liking living in her lungs :o( She also still has a sinus infection :o( Grrrr....
SO, for all that, she is on 3 IV medications (Vanco (only IV option as her MRSA is resistant to all other they can use) runs for 2 hours every 6 hours because she developed Red Man's Syndrome from it so she also has to be given Benedryl before her IV is ran, Tobramycin runs for 30 min every 8 hours due to the nasty resistant psuedo she cultured in her lungs earlier this year, and Ceftazadime which is also 30 minutes every 8 hours...nearly impossible IV schedule!)

Since we didn't start the Vanco til day 2 and they want to be as aggressive as possible at this point...we were told a total of 16 days we will be here as of now. I am not sure what they will say if she doesn't get better by then :o/ We just ran this same regimen about 1-2 months ago...so I really have my doubts that this is going to work this time as it didn't work last time. But at least this time we will still be here and they can see that it doesn't work (if it doesn't! Hoping it works this time!!!!)
So that's for the lungs for now...I think...lol Okay, so I just lost more than what is typed up already cuz of this darn hospital login crap...so I gotta make this short and to the point now cuz I don't have time to go over everything I just did! SO, Jordin's o2 has been dropping at night, as low as 68% at times. So she is going to have a

sleep study done next week in our room here to check for any type of sleep apnea or any other causes.
We are also working on her vomiting. She has been able to go about 2 days at a time twice now without puking! We are draining her gtube/stomach into a farrell bag (just another thing for her to carry around with her). It has been helping def...but not a fix per say. Oh and we are working on a possible new way to do her enzymes. It will be dissolving them in sodium bicarb and administering them into her j tube...avoiding the throwing up of them and all the mayo and applesauce we use right now :o) We were going to do it already, but then her stools changed so until we figure out the cause of the change, whether it's just the abx or if it's c-diff (which they are testing for today) we don't want to change anything just yet. So hopefully soon that will avoid clogging of the tube too!
Ashlee is doing well at home with Dad and Grandma.

I have it set up for Ashlee and Dad to come stay over this way at a hotel next week since we will be here for Thanksgiving. We miss them and can't wait to see them! If I forgot anything I will be sure to include it in our next blog!

ER, DeVos, Ann Arbor...

Well, it's been pretty eventful since I last posted (what's new?!). I'm just going to try to stick to specifics and leave out all the other crazy crap that happens on a daily basis. lol So, just last Sunday (time change, extra hour to 'waste')...we're sitting there just relaxing and being lazy when all of a sudden Jordin has to puke (nothing unusual!). I quick get up and grab her bucket and run back to her just in time for her to vomit. She's working it up as usual and all of a sudden I see something gray coming out of her mouth! My first instinct? A toy or something she swallowed and I didn't know about. After getting a better look and realizing there was no way we could pull it out? I am freaking out asking Dewayne what the hell she is throwing up and choking on! Dewayne and I look at each other and immediately realize we need to rush to the ER! Gather up Ashlee and speed to the ER, disregarding other cars on the road as well as stop lights! lol I run into the ER carrying Jordin while she continues to choke and gag and puke around whatever the heck is protruding from her throat (feeling like I'm on that show "Trauma: Life in the ER"! haha) yelling to everyone that my baby needs help! Dr immediately recognizes it as her feeding tube! It was the J tube! It had worked it's way out I guess and she vomited it up :o( The doctor right away got the supplies to deflate her balloon and removed the GJ tube and out came the tube from her throat, resulting in much relief for poor Jordin and I! It was the most horrifying thing I have had to see yet I think. They check for aspiration, talked to the doc on call in Ann Arbor, and a while later we were free to go home :o) With the plans of going to Devos in the AM the next day to have her GJ tube replaced. It went alot smoother than I anticipated! We were in and out of there in NO time! They didn't even need to sedate her as I expected :o) So, now we just hope THAT doesn't happen again! NOW, Jordin and I are sitting at the Red Roof Inn, awaiting the morning when she will have a CT scan of her lungs as well as a Bronchoscopy. She has been on Bactrim AND Levaquin for over 2 weeks now and is still sickly :o( We will be admitted after the bronch. Hoping that this stay will finally shed some light on the issue and maybe we can get Jordin on the right track, lung and digestive! She just can't deal with this crap every day anymore! The kids did get to enjoy their Halloween! They def made it well worth it! They accumulated over 7 pounds of candy! Ashlee had a bit of a fever last night, so hopefully that was nothing! She didn't have a fever at all today before Jordin and I left :o) We're gonna miss her! Wish us luck tomorrow! I just wanted to update everyone what is going on at the moment! I will try to update about the bronch and CT asap! Thanks for all the prayers for Jordin! She NEEDS them!