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!

Friday, November 18, 2011

Sentenced to 16 days Minimum :o(

Even though it's only been a 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 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 Okay, so I just lost more than what is typed up already cuz of this darn hospital login 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!

Thursday, November 10, 2011

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!

Sunday, October 30, 2011

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!

Saturday, October 22, 2011

Well, since my last post, Jordin has stopped 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!

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 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'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 has stopped 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 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's only a 15 minute trip, so for now I am okay with 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!

Friday, July 29, 2011


Wishing things were going better right now...but the storms keep rolling in around here. ALOT has happened since I last updated a couple weeks ago. Let me get Ashlee's status out of the way a minute...she's my healthy little bugger.
She did culture a new bacteria on her culture from beginning of July, Achromobachter. It's not something they are too concerned about. She had started on Bactrim before we found that out for a possible bladder infection. Urine sample came back neg, so we were supposed to stop the abx a few days in...then I got the call about the new bacteria in her lungs. They were not going to treat it at that point. She had been having a tab bit of a cough and still the urine issue...and I had read that most were treating the bacteria with I figured in her best interest we were going to finish the 10 day course. She still has somewhat of an occasional cough...but I am monitoring that...otherwise seems to be doing well :o) She has had some respect issues due to all this crazy screwed up hospital life splitting us up all the time. But it's understandable. Need to get her back in control though! She can get on my last nerve easily as I have few left to play with! haha
So we went to Jordin's GI appt on the 15th. She was still having bad diarrhea, she had 5 watery ones in the docs office in a two hour time frame! They were sure she had C-Diff and wanted to address the vomiting issues we've been having. Asked me if it would ruin our life if they admitted us for a DAY or TWO. I agreed and said we could deal with a day or two. Mind you I had been trying to talk to someone over the phone all week about getting her in to do this right away to save a trip...we could have come prepared...but they refused to work with me over the phone! So I was pissed.
After they forgot about us and left us in the docs room for total of 3 hours...I popped out to see what the heck and she couldn't believe we were still in there! Thanks. Anyways from there we went to the car and back to the gift shop as I needed a phone charger, but they were sold out of course. So we just went to admission and got admitted.
JUST after getting up there, they are talking IV abx, PICC line, the whole works! OMG! I was furious! I KNEW that meant longer than 2 days! Pulmonary had taken over from the start and decided she had failed to get rid of her sinus infection with orals and needed to get a hang of the diarrhea, so they needed to switch to IVs again :o( So here we sat, with NOTHING...finally got a phone charger from phone was way of communication. No money, $12 and Dewayne's credit card! lol I later ended up having Dewayne ship us a package with the main necessities as we ended up there a whole week.

Jordin had an Upper GI done to check the status of her Nissen...looked good and in tact :o) They are still stunned that she can puke so much with the Nissen done so well still! She ended up getting a port in her upper right will be permanent for her IV meds rather than getting numerous IVs and PICC lines every time we have to go in.
She was poked 12 times in the first 2 days there and she is now terrified of everyone :o( Makes me sad...she wasn't like that. I put a stop to it at that point...was not allowing anymore pokes for the time being. That was more than enough. She also at the same time got her g-tube replaced with a GJ tube. It has a J port on it that her feeding will go is dirctly into her intestine so she can not puke up her feeding out of her tummy. This has been wonderful so far! She has not puked up any feeding! She has puked up her meds a few times though, and is still gaggy even with her empty tummy :o( Not sure why her body just want to throw up all the time? Not fun for her at all.

Only issue with the new tube is that it is a smaller size (not by look, it is like 4 times bigger than her old button...but the hole inside is smaller!) and the g-tube curves off the side causing for her enzymes to get clogged every time we do them...4 times a day! It is getting old quick...but I got a handle on it...just nervous about leaving Grandma with a clogging tube! She will eventually get the hang of unclogging it as will just take time.
So, while she had those 2 operations, she also underwent a bronchoscopy to look at her lungs and airways and get samples of everything down there. (oh, I forgot to mention on BIG thing here...second day in...during rounds, I found out that she had cultured MRSA on her last culture at beginning of July and THAT is why we were in isolation (got out own room!!!! yay! I thought is was cuz of possible c-diff though...turns out it was the MRSA the whole time! Nice to know!)! MRSA is a very resistant bacteria, resistant to MANY antibiotics. Anyways, the bronch showed TONS of thick yellow mucous in her lungs and airways...and some super sensitive walls causing bleeding in her lungs :o( After the procedure she was coughing up blood when I cam to see her :O( She needed oxygen for a while after that, but soon was good on room air...better than the whole time since we had gotten there! Oh she had also been desatting a few times a night (oxygen dropping), but always popped right back up. They are assuming that will get better as she gets better. After a good nights rest, she was back up and feeling better the next day.

So, we're on 3 weeks of IVs again...this time 3 different ones, Tobramycin, Vancomycin, and Ceftazidime (was Cefapime in the hospital). She is also on Flagyl despite all her neg cultures for C-diff, something is def up so they are treating it. Before leaving the hospital I found out that her bronch culture was growing Aspergillus mold...they had to do another blood test to make sure that she was not having any allergic reactions to that or that it is not in her blood. I have not heard back on that yet...assuming it is okay. Got a call the other day from pulmo...checking on how she was doing cuz her culture has grown yet another bacteria! This one is Stenotrophomonas(steno for short). It is also very resistant to most abx. Actually hers is only sensitive to 1 antibiotic! So now what?! They are debating treating this newest one...depending on her improvement by Monday. If not much improvement she will add oral Bactrim to her list and will then be on 3 IV abx and 2 oral abx! Poor kid. NOT going to help with the stool issues at all!
How many bacteria can her little sick lungs handle? I am so scared for her right now. When is something going to give for her? I wish it would all just go away. I don't know what to expect at this point. I will be asking our doc at our next visit what all this means and what I should expect for Jordin's health. It def scares me to death.
(that is her hugging her cute doggy zooble she got for her blood draw out of her port! lol)
We have just finished up her second week of abx at home, 1 more week to go. She has another needle change on her port on Tuesday, first one was traumatic :o( I am hoping to learn to flush the port monthly myself...if I can get up the balls to stick a needle in her myself! I am def scared! lol I think once I do it once, it will be no problem after that, and considering it is still sore from placement makes me more scared to mess with it! I will be deaccessing it for them this next week...not sure if I will do the access or not yet! Prob should while the hole is marked for me so I get a feel for it before I gotta guess where to stick it at! Wish me luck!

And our Great Strides walk for CF is this weekend finally. I am so tired and worn down from IVs and meds that I am not sure I want to go. I really want to, but might be in all our best interest if we don't. IDK I have til tonight to figure out if we are going or not! I have only a couple people that would be walking with us...
Hopefully I have included ALL of the news brewing here...if I have left anything out, feel free to ask questions or I will include anything else i think of in a new blog when I get a chance! Please pray for my little baby girl <3