Tuesday, October 4, 2011

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!
We went back to Ann Arbor on the 23rd of Sept for GI and ENT appts. I packed all our bags just in case!!! lol ENT went well...they checked in her sinuses and everything seems to be healing just fine :o) He said he would stay in contact with CF Clinic and go forward with their recommendations for the sinus infection. So, not really much help there for her poor sinuses. I recently took her off her Nasonex myself and we will be trying Veramyst to see if it helps any different. Figured if the Nasonex isn't helping who knows if it is making things worse? We have been working with her on sinus rinses and she was getting a tad better at letting me do them...then one day it just became a complete failure. She will not let me do them for nothing. She gets so worked up she ends up puking every time now. I kinda am giving up on them at the moment. Not working out. I get her cleaned out as much as she will allow...it's the best I can do at this point. Well, GI appt went well too. Oh, when we were admitted that last time, they tried this med called Zofran...supposed to help with nausea...and it does!!! She was doing SO well with not vomiting! I have to keep fighting to get more scripts of this stuff, but it worked for her! Now, at this point...it has stopped working...it may be helping, but it is not keeping her from puking. I asked the GI doc if we could try Nexium, so we took her off Zantac and Prevacid and switched to Nexium. No real change between the 2 so far...so we'll see.
The Zofran just doesn't seem to be doing the trick it was for a while! Darnit! And the doc, as I am finding all GI docs to be, was just weird. He wasn't super concerned with her puking! He asked ME if Cf clinic wanted her to keep being seen by them! DUH! SHe is still puking! We NEED to solve this problem! I can't even take her to the store without a puke bucket cuz else we are shit outta luck in the middle of the store when she starts puking! Sucks...been there! lol Learned my lesson! OH, DON'T LET ME FORGET THE GREAT NEWS!!! JORDIN IS GAINING WEIGHT! GI DOC SAID SHE WAS A TAD OVERWEIGHT! HAHAHAHAHA! FUNNIEST THING I EVER HEARD! LMAO So, he said we could go down on her feeds a tad...we'll see what happens at clinic...but she is gaining rapidly! She is now 26 pounds!!! That's 4 pound gain in like less than 2 months! GO Jordin!!! Woohoo!!! So anyways, Jordin is just hanging out with her friend Sinus Infection...wish she would just let that friend go ;o) lol And Puke...we don't like either of them! Not sure what the CF clinic will say when we go for clinic towards the end of Oct. They can't admit right away cuz I will have both girls up there with me that day as Ashlee will have clinic too! Ashlee on the other hand has been doing wonderful! I am hoping that her weight says the same thing! She is in 1st grade now and loving it!School all day every day and her teacher is wonderful in helping me keep her healthy!
AND she even talked me into letting her ride the bus home after school....it's only a 15 minute trip, so for now I am okay with it...as long as everything stays going well! She had a tad of illness...but we knocked that out with hard work on treatments and we also added hern allergy med to keep her going steady! We are now going off the allergy med to see how she does now. Okay, so I think I got everything down for the most part. Please pray for my friend right now as her daughter has just been admitted with a CF exacerbation for IV abx. I hope they can go home soon to be more comfortable! Hospital life is NOT something I wish upon ANYONE!


  1. Sounds like a rough few months but sounds like its getting better slowly but surely! I definitely know what it feels like to be puked on and in a store!!! My kylie did that when we brought her home. I fed her on the way to the store...was pushing her thru the milk aisle...and bam! Exorcist ! LOL We alerted the staff that there was a spill lol I felt horrible and embaressed but I just grabbed a paper towel and continued to shop. I hope evreything works out!


  2. Your girls are so cute and funny ... thanks for keeping us updated so we can laugh, cry or say extra prayers when needed!!!