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....