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...

Life as we Know it.

Hello :o) Hopefully I can keep this kinda short and sweet, but I know it might get long. ALOT has happened since my last post.
We tried Jordin's newest Nasonex nose spray, hoping to clear up some of her congestion. No such luck. We went to the neurodevelepmental doc (pictured below) last week, then the GI doc shortly after!
Visited the Children's Museum in between :o) SOO much fun!
Anyways, nothing the neuro doc said really had any impact on what was going to happen. Seeing as how we are seeing her for the puking issues and we were just about to have our fist consult w/ GI hours after that. She mentioned a couple different formulas we could switch her to and another med we could try and also made note of a gj tube recommendation.
At our GI appt, we talked about possible causes, and the doc was mostly stumped as I have been! lol He ocnsidered the med the other doc had recommended, but was hesitant. We agreed to start w/ getting her a back pack and running her feeding pump 3 times a day for an hour, in place of the bolus feeds she gets right now. This was a week and a half ago and I still have yet to recieve the backpack! The nurses never were told to order it...I ended up ordering it myself on Fri last week (did not know I could do that else I would have to begin with!). Still have yet to see it though. I guess I will call Airway and see tomorrow again.
We also considered her sinuses playing a huge role in all this. (Oh, I forgot to mention, Jordin went ALL of Feb without puking, then started back up in March again?? wierd...now its been over a week since she's puked again, except last night when she got mad about going to bed) SO we had to start another abx :o( Grrr...She has done well on it though, BUT it hasn't done anything good really. I took her to the pediatrician on Wed morning. She says it doesn't look infected, but there's def lots of snot and boogers, every day :o( She doesn't even want her nose touched anymore. She used to let us wipe it or clean it out no problem. But we have overdone it w/ so much problems every day, now she hates it. We started her on Claritin to see if it helps any, and she got bloodwork done today to screen for any resp allergies. Will know soon if she will be referred to an allergist or and ENT. The clinic wanted me to do sinus rinses on her! LOL I tried one night, got 50 ml through her nose. Next night, one squirt and NO more! She will not allow it anymore :o( Poor kid.

NOW, for Ashlee...she started w/ a high fever last Wed, and it lasted until Sunday! I noticed on like Fri or something that her eye was red. Didn't really think anything cuz figured she was getting a bad cold or something. Realized Sunday that it was pinkeye!
Called the ped on Monday and they said to just call if it got worse. It never had much stuff come out of it, mostly was just red/pink and watery. She said it hurt a little but not itchy. It seems to be all better now :o) She sounds junky though and has a runny nose still. Her nebby tonight was making her cough which only happens when she's sick. And she missed another week of school :o( She has missed 8+ days already (she only goes part time to begin with!) She missed a storybook parade the kindergarteners were putting on. I didn't even tell her! I am not sure she even knows now :o/ lol

I am personally finishing up and abx for my own sinus infection! I got this same crap last year and couldn't get rid of the sinus infection! I think it is the same this year! I seem to still have the post nasal drip in the back of my throat :o( Grrrrrr.........I have NEVER had any kind of allergy or sinus problem! Oh forgot to tell everyone, some prob know, but we got a new van! A new used van of couse, but I love it! It is a Pontiac Montana! Seats 8! It is super nice and we got a great deal on it! Had to let go of our Grand Prix. I am going to stop here cuz I have spent way too much time here! lol I need to hook up Jordin's tube yet and get to bed! I will update again soon w/ anything I may have missed!

Oh! One last thing! I got Jordin her own Vest machine and a new pink full vest!! Lovin' it!!!!! Yay!!!!! Alright, see ya'll later!

Clinic Update!

Well, both girls did WONDERFUL at clinic today! Both had blood draws...was quite the scene I tell ya :o) haha We got redirected through the hospital cuz the place we normally get labs done at was having issues w/ someone, so nobody was avail to do the kids labs. So, they got us in and we made it to our appt 15 minutes late. And of course, Jordin can't be away from me and Ashlee wants me to hold her for her draw too...so it was funny. lol Total time for blood and appts today was around 3.5 hours (not including the drive) :o/ Fun. That place is so stressful w/ 2 kids in a little room for 2+ hours! At least we have good news in the end of it! Ashlee was perfect, even gained another pound! She's 43.4% BMI! I still say it's gotta be the Mountain Dew she has been drinking! lol I can't think of anything else that would be making a difference. That's 2 pounds in the last month and a half! AND in the midst of being sick!
Jordin still has SO much snot in her nose each day. They were going to slap her on another round of abx, but we talkked about it and decided to hold off for a minute. We are going to add another nasal spray and see if it helps. Otherwise I guess we'll be starting abx AGAIN. Hopefully not though. Of course, they don't say much about her puke(and she is back to puking again the last 3 days)...but I did get him to talk a little about it and he thinks they will prob look at trying continuous feeds. We go to GI next week! FINALLY! Oh, and she is 21.9% BMI.
But, needless to say, the doc was SO excited that they were doing so well after such a bad bout the last 2 months! YAY!
THEN we got home to find we're locked out :o( I lost my key and Dewayne had thought I got new ones made, so he locked the door when he left! Jordin was sleeping, so Ashlee and I just hung out and read some stuff for over a half hour. After Joridn woke up I got them out to play (Jordin don't really like the cold though). Then Ashlee had been at the neighbors telling them we were locked out. He came and broke in for us ;o) Good to know it was so easy! NOW I gotta make that not so easy! OMG!