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!

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!

Wishing...

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 Bactrim...so 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 security...my phone was dead...no 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 chest...it 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 in...it 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 well...it 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

Our Looooong Day in Ann Arbor...

Well, we went to Ann Arbor for the girls' CF Clinic appts (Ashlee's first there!) and Jordins ENT appt. First Ashlee had to do her PFTs (breathing tests). She doesn't really understand yet how to blow longer, but the mouthpeice is so huge, I don't think I could either and her mouth is alot smaller! I will post a pic :o)
Then we went over to Jordin's ENT appt. They were really nice and did nothing invasive :o) One guy said they might do a probe up her nose (she had this back in GR and hated it), BUT the doc came in and talked and looked up there and that was it :o) Jordin was over coloring with sister and another doc most of the time! lol
So anyways, Jordin is going to have sinus surgery. They are going to clean out her maxillary (don't know the real word or spelling lol) and cheek sinuses as that all she has developed yet. And also remove her adenoid tissue in the back of her sinuses to help keep bacteria from growing back there all the time. We have yet to schedule this because they have to work things out with the CF docs as well, as they all end up involved with the hospital stay. AND I didn't make it back in time to get the scheduling done cuz they all left their office at 4:30! SO, I have to call there on Monday.
Next, we booked it over to the CF clinic cuz we were late! lol Ashlee was seen for her first visit there and they were pretty happy with her status :o) She could use a little more weight, we increased her enzymes a tad...hope it helps with her tummy aches she has. She also 'may' have a UTI or bladder infection or something. I need to call the pediatrician to call in labs for urine. We had a hard time getting a sample there. I won't even go there. lol Otherwise, she's doing great. I noticed she was down about a 1/2 pound though sincer her last visit to a doc. She was 38.4 I think...and last was 39 something. BUT they didn't know that ;o)
Jordin.....Jordin....Jordin. lol She puked a little with her throat culture, then got a bloody nose :o/ She ended up with another one before we left the parking lot! Anyways, she slept through most of this appt (once the doc came)...she was tired! her doctor said she will be admitted a couple days before her sinus surgery to start IV meds and get things clearing up, then at the same time as surgery they will make plans to do a bronchoscopy (check out her lungs, get samples to check for bacteria, and clean the lungs out a little) So she'll be nice and cleaned out all over! Oh and while she is at this stay, when they go to give her a PICC line, there will be a back up plan. Last time the PICC nurse told me there was only that one good vein for a PICC in her right arm and there was some sort of blockage in her left arm. SO if they can't get a PICC in, then they will go straight to a port. We know that Jordin is going to keep needing continued treatment with IV abx and this would be the best option for her in the long run. The port will be permanent and under her skin.
I am just so sad. It has had its time to sink in. We also have to go to a GI appt next Friday in which I am shooting for the outcome of getting the GJ tube, so we'll prob have that done in the same stay. It's going to be tough. I am scared and sad for my baby girl <3 Pray she does well with everything she has to go through. I love her so much!

July Update....

I know...I know...it's been a while. Give me a break, it's summer AND I have alot to do! I am sorry it's been so long...I will try to include all updates in here...but still, alot has been going on as usual.
Okay, so, Ashlee has been doing great, as usual ;o)
I have even gotten her to drink some Boosts out of cups with flavoring (which we have tried before, but did not work...this time I found some flavored straws to start her out with...)...still not totally working, but closer! lol She has been spending most of her time outside, as usual :o) She has her very first appt with her new doctor in Ann Arbor on Friday this week!!! She is a little nervous...and to tell you the truth, SO am I! lol She will do just fine :o)
Jordin on the other hand...I just never have anything good to say unfortunately..(well, except the obvious...that she is overly adorable and such a sweetie :o)) AND a little trooper!
Since being home from the hospital (mind you, we did 2 weeks at Motts of IVs, then took home another week of IVs)...she slowly improved over the last week of IVs and continued to improve (her sinuses and cough) over the next week...her sinuses seemed pretty clear (more clear than they have been in over a year)...for about 2-3 weeks...and now as of this week...she just continues to go back downhill. Her sinuses are all clogged up again and causing issues at night with coughing...and an increased all together cough :o( AND she is still having her random vomiting issues. We have not overcome that. We go to Ann Arbor on Friday (total of 4 appts, now we have to go back next Friday for her GI appt)...she will see Pulmonary CF doc, and the ENT. Hopefully the ENT can shed some light on something for us. We have been playing with her feeds and are now on a crazy 5am - midnight schedule that we can't even follow...1, because I can't get my ass out of bed to hook her up after being up late to unhook her and couging fits in the night, and 2...because she is having coughing fits...the feeding only makes it worse..making it a waste of my time to hook it up so early. So, hopefully we can do something within these appts on Friday to help her feel a bit better for the time being. I know this is all she knows...but she's still gotta be sick of feeling the way she does and puking :o( My poor honey <3

Anyways...it should be an interesting trip on Friday...1 day, 4 appts, 5 hours of driving time...2 kids...yikes. Pray it all goes well!!! Best part is that we get to meet my bestie CF mamma friend :o) I think I hit all the important points...will try to update sooner with all that is going on!

Ann Arbor, Mott Children's Hospital

Okay, I need to blog...it's late and this could be long, but I gotta get this all out before I myself forgets what the heck is going on! I just took a shower, after waiting a few days (so that felt GREAT!), so here goes...


Well, let me start off by telling you how we ended up here if you don't already know. Jordin has been sick for a long time...constant sinus issues, terrible daily coughing fits, puking...the whole works. The docs at DeVos just don't seem to be giving Jordin the attention she needs. She has been thrown on 9+ oral antibiotics in the past year. THAT is just not right. Something more needs to be done. Also, the GI doc there is not being much help about her puking issues and not trying to figure anything out. I am fed up with their course of actions w/ my child's health. They also screwed up when they were refusing to treat either of the girls for their psuedo cultures (mind you, Ashlee's first in 4 years and they weren't going to treat her!). So that right there did it. I am still SO upset with them over that crap...it is in a recent post if you hadn't seen it you can scroll down to find it. I think they have become overwhelmed in GR and don't have enough time for all their patients and it is taking a toll on some. They never even have a time they can schedule us for appts! Not even for Ashlee 3 months out! THAT is rediculous. They always have to 'open a spot' and call us later when they find one. But anyways...that's that. I have had enough.


Day 1
So anyways, I got our pediatrician to refer us to Ann Arbor's CF clinic for a second opinion, as she is concerned too and has always been there to help with anything I need. She referred us, and marked it Urgent...otherwise they were scheduling out to end of July/August...that was too long to wait in my opinion! So May 20th, the day finally came to see the new doc :o) What a rush! We met with all the people...respiratory, nutritionist, nurse, social worker, and Dr Filbrun. They were all great! I am REALLY loving this new doctor and I only met her a few times! I am SO comfortable with her! I can't stare anyone in the eyes hardly...but for some reason I can her! Wierd. Anywho, she talked with me for a bit and learned what has been going on. Then she said something of the sort "well, I'm going to listen to her a minute, but from what I get that has been going on with this coughing and illness and the orals not helping after so long...I think she should be admitted for IVs. (I forgot to mention that when we drove down here, I came kinda 'hoping' for admission...as much as I HATE being in the hospital...I KNEW it was what Jordin needed!) I right away was SO relieved that she said that! AND that made her relieved cuz she doesn't like to tell people tat when she first meets them! I told her I would have been disappointed if we had left without admission. So longer story short...then found us a room, got the ball rolling quickly! This place is on top of EVERYTHING! I am amazed! FAR from how things get done in GR. We got to our room, right away got a chest x-ray, blood draw, IV placed..AND later that night even got us in for a CT Scan of her sinuses (which we are still waiting on in GR lol...must cancel :o)) She did her CT Scan unsedated!!! I am one VERY PROUD MAMA of her!!! She did so well! She got strapped to a board and her head stuck in a foam pillow to hold it still and she never made a peep! It was so cute how good she was! I couldn't believe it! Well, that's it for day one I think.....


Day 2
They had scheduled her PICC for the morning, told me they were planning consious sedation! PICC nurse was confused why they would schedule her for consious sedation at age 2...I was also concerned. We decided to try and see what happened. They said they give her something called 'versed' I think and after the fact they don't remember anything. So I agreed and we just figured if it wasn't working out we would stop and wait til she could get in the OR. Needless to say, she wouldn't even allow her to put the ultrasound on her arm, so they were going to sedate her a little to start (but can only use so much during the whole procedure, so it was worrysome) and the IV seemed to be hurting her, so they stopped. I told the nurse I wasn't feeling the whole thing and we should wait and sedate her (put her out for it)...so she ended up being scheduled for Sunday (the next day..even though they don't usually do them then, she was special :o)) We did get to go out and play outside in the nice weather for a while later that day :O))) Jordin LOVED it!!!

Sucks we had to come back in! lol I think that was all the excitement for that day...with exception of her puking a few times...mostly when they had done pokes and owie stuff...she will start coughing and ends up puking :o( Well, actually, we had also met out roommate (yes, we have a roommate here...sucks...but we gotta make the best of it I guess. He went home today and now we have a new little one.
Day 3
So today we woke up to them ready to take us down for Jordin's PICC placement. Everything went well with that, just a sore arm from that now. She also had her 3rd IV placed as the other one wasn't working, was clogged...so they needed a new one for the sedation meds (so she has had 3 total in 2 days, along with a failed blown vien while trying to place one yesterday). She had a slight fever after surgery of her PICC, but wasn't too concerning as she had just had a surgery. Well, temp kept rising throughout the day...Motrin/tylenol rotation was not working the best...fever kept going up :o( Was up to 103.9 at one point ON MEDS! Her belly is really distended (I can see her intestines a little...sad). They brought up an x-ray machine to her bedside to do a tummy x-ray. Oh yeah, she has been puking alot this evening too :o( Anyways, the x-ray showed lots of air in her little tummy, but they didn't notice anything too concerning, so we tried to vent her tube...not much luck there either though :o( She had some more Motrin and her temp is down to 99 right now...and she is finally sleeping soundly...her belly is still big and I can slightly see and feel her intestines...worries me :o( My poor girl has been so miserable today. Love her to death <3 I am hoping that she can sleep throught the night without any issues...guessing the fever may be an issue after a while...but for now it's 'ok'. They said the sedation can slow down the bowels and that could be the cause of the distended belly...not sure how that warrants the fever...but for now it's a mystery. Hope she's okay in the morning.
We will be seeing all the docs while we're up here...GI and ENT.
It is going to be a long trip to go to clinic here for the girls, but I am really feeling this is the best option. I plan to switch both of their care here. They will have a new hospital in Sept and we won't have to share rooms anymore! I am trying to get us our own room this time around...I will get it soon! You wait! lol I have voiced all my concerns on that issue and will continue to! Possibility of going home with her IVs this time around is quite low since she is a new patient and they want to monitor her and get to know her and her issues. BUT there is a possibility...more or less in like a week if at all though. In the future we can prob take our IVs home after a few days and run them at home and be more comfortable, which will be nice.
Okay, well I think this is long enough...if I left anything out...I will try to include it next time.


Thanks for following along on our Journey! Remember May is CYSTIC FIBROSIS AWARENESS MONTH! Our Great Strides walk in Holland is not til the end of July for some reason, but we would love to have people join our team!!!
Good night!

Too Much to Handle

Let me start out on a super good note to get you settled for this long blog I am about to spill out. Dewayne and I will be GETTING MARRIED on August 27th, 2011! FINALLY :o) SOOOO Excited!!!
Now, back to reality...lol I will start off with our clinic visit April 27th. Good: Ashlee gained weight and is now darn near 40 pounds and in the 50.9% for BMI!!! RIGHT where they want her! And she has been eating really good lately! Hopefully we can see another big gain next visit!!!! Everything was good for her, only thing was that she started coughing out of nowhere a couple nights before clinic. They said if she was still coughing same time next week to call and they would start an abx.
Jordin on the other hand, lost weight again. She was 20 pounds, 9 oz :o( Little peanut <3 Love her <3 She is trying so hard! She got car sick on the way to clinic that morning :o( Yuck! Anyways, they started her on Bactrim (mind you this is abx number 7 since Sept) and are waiting to see what the ENT has to say. Thinking sinus surgery is in sight. Treatmens to 4 times per day :o/ That's rough :o( So, that was that. We just got her Peptamen Jr 1.5 which is what we will be switching her to during the day through her tube. That stuff is $11 per can! It's over $1000 per month! And that doesn't include her night feed supplement! Anyways, the doc and nutritionist is hoping she will not be puking this up at all. She has been having some more issues with food sight, usually while on her tube or just after. She will starts gagging and or puke :o( We were at Bob Evans the other day for brunch and she was in the middle of a feeding. As soon as the food was all being placed on the table, she started gagging and ended up puking all over the floor and her seat and self :o( Ugh. That sucked...don't think I will take her out to eat any time soon! She has done a couple similar things at home too...usually not the formula coming up though. Mostly whatever she has eaten/drank, so maybe the formula is good...I am wondering if being taken off the Pariactin a few weeks ago has anyting to do with that. SO I have started her back on that to see if it is helping w/ her visual issues and puking. She did it twice just today. Oh, and he said if this did not help her puking, then he was going to refer us back to the surgeon to redo her fundo surgery. I am not with him there. I do not want her fundo redone. I am sticking firm with that. Obviously, she can puke for a reason! I am not going to sit and watch her heave. It is not going to stop her from having to puke. They are trying to cover things up instead of fix them! I am not happy with them. I would, and I think the surgeon may agree with me cuz he had mentioned it, move on next to the gj tube before doing anything more about her fundo.
Jordin had her ENT appt on the 29th. It was supposed to be the week before but the doc was sick and our appt got cancelled! She also got car sick on the way to this appt! They checked her out, and put a scope/camera into her nasal passage :o( She hated it :o( Ugh...makes me cry. They held her head on my chest so hard that my chest was briused the next day! She was fine after :o) It is just hard to see them deal with all this stuff non stop :o( The doc said she DIDN'T have ANY polyps!!! AND her adenoids we small to medium sized and not enlarged! She is now scheduled to have a CT scan of her sinues (well, we're waiting on an appt date), then we will go back to see the ENT again to discuss the results of that. Could be 3-4 weeks before we get through that. Oh and he agreed that it would be ideal if we could do sinus rinses on her, but she will not allow it and screams and cries and could end up aspirating it into her lungs and it is not worth the risk.
I called the clinic today to find out about the girls' cultures. They called back and told me that Jordin cultured staph and psuedomonas, and Ashlee cultured psuedomonas! Also that they were not going to treat them differently right now! Nothing more for Ashlee (her first psuedo culture!) and Jordin is already on an abx...not sure if it is for psuedo though, but this is her 4th time culturing it :o( I ain't a doctor, but I KNOW they should both be on TOBI right now! I am SO mad at the clinic! What are they thinking??! Jordin needs to run it every other month. She has been non stop sick and it probably has something to do with it! And for Ashlee they should be trying to eradicate it right away by treating it aggressively! DUH! Not really sure what our doctors are for anymore. I can't wait til we go to Ann Arbor May 20th! It can't come soon enough! I am going to be calling the clinic in the morning and they will be treating this psuedomonas for both of them! Sucks, I hate the thought of adding Tobi (1/2 hour to each morning and night treatments for each kid!)...but they need it!
I think that our clinic is in too deep and they can't handle everything. Jordin needs an appt to be seen back in 4 weeks, Ashlee not til July...BUT they have NO appts in either month!!! How can they not have any appts open in July!?!?! They have to make appts and call us! EVERY time! This happens at EVERY appt! It is so dumb. They have no time to see them if they are sick. I have had enough of that.
Oh AND Jordin will be 2 this week!!!! (Dewayne 39!) lol I can't believe she is getting so old!!! My baby girl is growing up! She is so funny though :o) And she says alot of stuff!!! It is so cute!
Well, I think I included most everything. If I forgot anything I will add it later. Til next time....

Back pack, Back pack :o) lol

Can you see we've had some nice days and have gotten some outside time lately!!! Didn't last too long, but at least we got to play a little! That's her in her little backpack!

BACK TO REALITY! lol Well, it never fails lately...Jordin is on her SIXTH!, yes, 6th antibiotic since November. It was her sinuses yet again, which in turn is causing a nasty cough to go along with it :o/ She is on another 3 week course. We are about 13 or so days in right now, so not much longer...She is doing well, but it always goes this way...a week after abx ends, we are back to square one. Her cough is not the greatest though. She has been doing really good with all her nose drops and sprays too :o) She is a pro! Still looking for the one that disappeared...good thing for refills! lol I have a feeling it went down the toilet first! Which brings me to tell you what Jordin did last week!

She flushed our bath tub plug down the toilet! It costed us enough for them to come get it out too! lol It was quite funny though, regardless of the cost :o) haha
I got our pediatrician to refer her to an Ear, Nose, and Throat doctor. We see them on the 22nd...next Friday! Hopefully we will get some answers about her nose there. She can't keep being on these abx ALL the time, year round. It's getting really old.
Oh, and she has started using her new feeding backpack! She is doing REALLY well with it! We had some puking episodes the week before she was put back on abx, but nothing since I switched her formula during the day. I asked them 2 weeks ago if we could switch to the Peptamen during the day (since we were already using it at night and she seems to tolerate it better). It took them 2 weeks to decide to switch it! I had already switched is since we had extras and I was able. Just waiting for them to adjust our WIC. Turns out we will actually be switching to the Peptamen 1.5 during the day...BUT anyways, she just wears her backpack like another peice of clothing 2 times per day for 2 hours each time. She's such a cutie :o)
I ALSO got the pediatrician to get us an urgent appt for a second opinion over in Ann Arbor! OMG! We go on May 20th! I can't believe it! Going to have to make sure I am extra prepared for this one! (we go to our clinic for both girls on the 27th of April...so the week following Jordin's ENT appt.) Hoping things at the new clinic go well. Will be kinda weird though, going to see new docs. Hope we like them! Sucks it is 2.5 hours away though.

Ashlee has been doing VERY well...hoping she gains back her 2 or more pounds by the time we go to clinic on the 27th!!!! She is finally going to school without a scene again as well! Lots of school field trips coming up! Hopefully she can stay healthy through them all! Greenhouse, Zoo, and the Pool! She just got done going to the butterfly gardens w/ all her Girl Scout buddies!


Just wanted to update you with some of whats been going on here. Hopefully I didn't miss any important tidbits...