We're trying :o/

We're trying to stay out of the hospital, but things just aren't looking too well. Jordin had started the Levaquin which just wasn't kicking in soon enough to allow her to sleep at night, SO after 4 days we switched it to Bactrim (since I knew she could sleep at night taking that) and planned an admit for Nov 11th w/ bronchoscopy and ct scan of the lungs. (reason for the wait will come) BUT on the 5th day (what would have been the 5th day of Levaquin) she sounded extra junky, I thought MAYBE this was the Levaquin working and maybe it was a bad idea to have stopped it!
So, I emailed the nurse and asked her if we should start it back up and just stay on both of them, and it was agreed that we should continue on with both antibiotics. Now, we are waiting out this admit due to the fact that WE wanted to enjoy Halloween, for one, AND then next week when we would be admitted OUR dr will be gone to a CF conference out of town for the week :o/ SO that would mean that the attending dr. would perform her bronch and decide most of her care for the week. I REALLY want HER dr. to be the one to do this. SO we are trying to get Jordin through until she returns and is free to do the bronch! Not sure how long we'll end up there, but they need to address her never ending cough and her vomiting. Poor kid :o(
In the meantime, we are enjoying time at HOME! and we will be going trick or treating tomorrow night!
Jordin is gonna be Foofa from Yo Gabba Gabba, and Ashlee is going to be a princess riding a unicorn! I also will be helping with Ashlee's Halloween party at school and she has a costume parade too!

Well, since my last post, Jordin has stopped Bactrim...re-started and stopped Bactrim again...and now we're about to start Levaquin. Reason being, after Jordin stopped the Bactrim after 21 days...she started coughing through the night within days. It never really made her sinus infection go away :o(
So after a few nights of being back on it, she was finally able to sleep through the night again. Now we're off it again and she is coughing early in the morning again :o( We had clinic for both girls yesterday though! So I guess the Steno was also sensitive to Levaquin, so we're going to try her on that. IF this does not do the trick Jordin will have to go in and have another Bronchoscopy done and they will plan to do a CT scan of her lungs under the same sedation. In the meantime between antibiotics, Jordin has developed some NASTY poops :o( Hope she's not getting c-diff before we even start the Levaquin! So, we got out on bail pretty much lol If the Levaquin doesn't help or if she can't come off it when she's supposed to...we'll be going in :o( We got a new spray saline and she let me try it on her today...she did pretty well :o) Hope it helps better than just the drops. She let me do A sinus rinse (30ml) the other day, but otherwise still freaks out. Will keep trying!
So, in addition to her sinus and cough issues, she is still having a terrible time with vomiting :o( She is back to doing it like 2, 3 or 4 times a day. We had an upper GI scheduled while we were there yesterday (so we were stuck at the hospital ALL day!). The docs first thought was that she had an obstruction from her tube balloon or something. Well, no obstruction of any sort....BUT NO motility either :o( The barium concentrate wasn't moving one bit in her tummy and she was not emptying hardly at all, if any. THAT's why she keep puking more! AND, she will puke up her enzymes 5 hours after I have given them in her tube! (Remember now, this child HAS a nissen!)
Anyways, so I guess we have to just wait and see what the doc says about the test. The CF doc said she was going to talk to the surgeons about using farrell bags to vent her g-tube...but I am not too sure if the meds aren't moving through, then they would just come out in the bag anyways...right? Well, I guess better than her having to get it all up! She vomits up lots of mucus too :o( We just ran out of Zofran, so I am going to just go without for now and see if it is any worse than it already is.
Both girls were up in weight. Jordin was at the 50% for BMI!!! RIGHT where they want her! Ashlee at the 32%...still gained, so they were happy :o) Jordin also grew like over an inch I think! (This is in a 3 month period!)More great news? Jordin has been trying out her potty quite often lately! She loves to go on her potty! It's so funny cuz she has a princess one that plays music when she goes :o) lol She is growing right up!
Ashlee is doing well in school :o) She says she can't see well in class, SO we have an appt on Monday to get her eyes checked! Hoping she doesn't need glasses! One more thing I gotta keep track of!
Well, that's all I have for now. I am sure Jordin will be waking up soon!

Fall update...

Okay, so even though I took a nice looooonnnggg blog break...I am going to try to fill anybody in on what has gone on since our last update! I will do my best to make this short as possible! lol

So, musta been within a day or so after writing the last blog at the end of July, that we ended up having to go back to Ann Arbor and be readmitted due to Jordin having fevers. They thought something couldn't be right as she was on 3 IV abx and started running a fever...they thought for sure it was her port or something. So after going in...they decided to stop her Vancomycin as well since that is known to cause fevers. Port labs came back fine. Fevers stopped, so we are assuming it was the Vanco...which isn't cool either cuz she needs that for fighting the MRSA! Anyways she was switched to oral Bactrim instead which was said would cover the MRSA and Steno It is the ONLY oral that they are both sensitive to. Well, since we were already there anyways...and Jordin was not improving...they miraculously moved her sinus surgery up! SO we got her sinus surgery done while there! They cleaned her sinuses out and did an adenoidectomy and it all went great! They even said we did not need to come back for a checkup at the normal 2-3 weeks...we were to follow up with ENT in 6 weeks :o) Great news! So a few days later we headed back home to finish yet another week of IVs. Total of like 8 weeks of IVs this summer alone. Bad news...is she never really got rid of the sinus infection STILL! She is still all clogged up :o( It has been like a month and a half since surgery and she was put back on an oral abx cuz she was unable to sleep at night again due to so much coughing through the night. After about a week on the oral, she can finally sleep though the night and is actually sleeping in and catching up on sleep!