SiCk

Yes, that's right....we have ALL been sick :o( It has been a loooong week. Jordin and I got sick first, then Ashlee, then Dad...like a domino effect all within a few days! Sore throats, body aches, snotty noses, coughing...yuck...all that nasty stuff! Jordin has kept a good attitude about it all, doesn't keep her down...a couple nights I couldn't run her feeding tube...but getting back on track! She has that nasty cough left over as always...hoping it goes AWAY SOON! Ashlee was down for a day or two...but wasn't going to let it keep her from school! She was so worried she would miss school! LOL Silly girl :o) She is still stuffed up and gaggy in the morning...hoping she doesn't develop a bad cough from it (what? I can hope! LOL) I am still all clogged up w/ a cough, so I can't expect them to be any better than me.
Clinic on Monday morning for both girls! BRIGHT and EARLY! Ashlee is concerned she is going to be late for school! ( I am kinda concerned too since it is picture day! Grrr...) Hopefully we can get her there on time for pics! Hoping for weight for both of them! Ashlee has been having issues drinking her Boosts, so not too convinced there :o( Hope Jordin has gained a little despite being sick! STILL waiting on insurance approval for Jordin's new tube formula...don't know WHY it has to take so long or WHAT I could do to make it happen faster.
SO many of my FB friends are having issues w/ their CF right now. I hope for the best for all of them, including Skye (many issues like Jordin), Eve (had a lobectomy at age 4 and is sick again), and Jordan(22 years old waiting for a 2nd double lung transplant and not doing so well with waiting so long). I am so happy to have met these people, even if it is just through internet. The list goes on and on though... It is scary what we have to go through. Just when I think WE have it bad...I look at these moms of these children and can't even imagine being in their shoes. Please keep them all in your prayers :o)
Hoping for a good clinic visit for us on Monday!!! Just wanted to slip in a quick update!

Sorry I have put this off so much. Things have been so busy and I have so much paperwork and crap to take care of, that this just didn't make the list. I wish I could be better about taking the time to update this more often. I will try my best! I am working my way to being caught up with things!
So, as most of you know, Jordin had her surgery on Tues, August 17th. She had the Nissen and a g-tube placed. She spent 3 days in the hospital and we got to go home by Friday morning! It was probably our shortest stay we will ever have! LOL She was in alot of pain for a few days or so. Then for a couple weeks it hurt her to cough, so we had to help with that cuz Jordin is a cougher!
For the first few nights of feeding, it went well. She had taken 2 cans of Pediasure throughout the night. Then about the 3rd or 4th night...she would start coughing about half way through the night. I would turn her machine off as the coughing had gotten bad and she would continue coughing for the next 2-3 hours :o( No sleep for us for a couple weeks. 90ml became her max through the tube.
She started Miralax, Reglan, tried new formulas...nothing worked...still causing her to cough. One night I decided to try putting more enzymes in her tube after 4 hours of running (about 2am). NO to minimal coughing! So, we have continued on with that and she is doing well! IF I neglect (or don't get up by alarm on time) to put her enzymes in...coughing! Weird! SO I have to make sure that she gets her enzymes in the night now! She is now using Peptamen Jr at night (well, until I ran out of the samples...waiting on order/insurance now)...it will be easier for her to digest. She is up to 320ml (40ml/hour x 8 hours) of the Peptamen. I have decided to put her at 8 hours rather than 10 cuz if she goes over the 4 hours without enzymes it causes coughing...so 10 was not a good number. Maybe in the future.
She hasn't really gained any weight yet...but we haven't gotten her figured out completely yet until now either, so hopefully NOW she will gain some weight!
Ashlee is now in Kindergarten! She is LOVING it! She goes 2 full days one week, then 3 days the next week...she is getting a Boost in the middle of the afternoon to keep her weight up.
Me, I am TRYING to work part-time still, but keep getting taken from work! Had to leave the other day to get the girls' flu shots, otherwise wait another month. Today, got a flat on the way to work...had to deal with that, was late! Grrr... Grandma has been a HUGE help to us and has been coming to our house to help with the kids! She is THE BEST grandma EVER! I couldn't do this without her! Dad still has training to do...grandma has little practice, but can do the basics :o)
Well, I will try to update sooner (as I say every time)...

Less than a week...

Jordin will have her surgery in less than a week! She stopped eating much of anything for a couple weeks...we think her reflux had gotten so bad, she just couldn't handle anything...everything made her gag :o( So, I pushed (and I mean I had to push hard to get anyone to listen) but I got her appt moved up w/ the surgeon. So we have seen the surgeon and scheduled her g-tube and Fundo surgery for Tuesday the 17th. It's coming WAY too quick! Not sure if I am ready for this! We did increase her Prevacid and she isn't gagging as much and started to eat a little more the past week, so at least she is getting something for the time being!
Ashlee started running a fever yesterday and was not feeling good, puked in her room last night and still has a temp this morning :o( Hoping whatever it is, Jordin don't get it before surgery. Hopefully Ashlee will recover quickly...she was pretty down this morning when I left for work.
I just wish we could catch a break somewhere! I don't see one yet on the road ahead! Hopefully soon? Please pray that everything goes smoothly with Jordin on Tuesday and that Ashlee and Jordin can be healthy!!! Thanks everyone for your support!

Was hoping for a better vivist :o(

Well, Jordin has been gradually losing a pound for the past 2 months...no gain since her hospital stay, only loss...she is now down to 17 pounds. We recieved 2 referrals today, 1 to Peds Surgery and 1 to an Intensive Feeding Program. She has poor growth and the doc said it is time we step in and put in a g-tube :o( They cannot risk her little lungs any longer. They have given her time to 'catch up' and she is falling behind even more now. This will have a toll on her lungs later in life and she needs the weight. They also said she has GERD and needs a nissan fundoplication. They will do that surgery at the same time as the g-tube.

So, within the next month, that is what we will be doing...getting a g-tube placed and having a nissan fundoplication. Fun, fun...I am SO excited...NOT!!!! Grrrrr.....

Oh, I should add that Ashlee has Hand, Foot, and Mouth Disease (HFMD) and has many sores in her mouth. She is doing okay though, just not really eating a whole lot and not drinking her Boost at all. Hoping Jordin does not come down with it...Here she is in her neb mask and wanted her goggles so the 'smoke' didn't get in her eyes! LOL

Well, that's really all I have to say right at the moment. I am just stressed out and tired and now Jordin is waking up. Will try to post news as it becomes available.

Well, as you can tell...the blog is on the bottom of my 'to-do' list. Probably because I am not sure how many people actually READ the blog...so I am not sure if it is worth it or not. If I KNEW there were a bunch of people reading it, it may be bumped up on my list :o)

This has been a very sad week for the CF community. Conner, a sweet 7 year old boy, lost his battle to Cystic Fibrosis :o( This broke my heart...I am SO sad for his family, BUT he is 'breathing easy' now :o) His mom is the strongest women I have EVER gotten to know (only through FB and blog, but it feels like I KNOW the family)! She is an awesome woman! Please keep this family, Sarah, Brad, and the two little brothers, in your thoughts and prayers. ALSO, PLEASE wear RED in rememberance of Conner on Wednesday!!!!! Thanks for your support!

We are all doing well! Jordin had gained 2 pounds in the 2 weeks she was at the hospital!! Yay Jordin! Then she came home and came down with the flu 2 days later and I ended up taking her to Zeeland hospital for IV fluids due to a really high fever that was not going away all day and vomiting/diarrea...not the best combination for her! But, we did the IV fluids and got to go home within hours :o) SO, hoping she didn't loose too much weight during those days she was not up to par AND that she has continued to gain weight! She goes to her 1 year appt at the pediatrician tomorrow, so cross your fingers!!!

Jordin is WALKING all over now!!! She doesn't crawl much anymore! She looks so silly walking around cuz she is so tiny :o) It is so cute!!! LOL Gotta love it!

Down side...she has developed an increased cough AGAIN in the past week :o( She is coughing through the night, so not much sleep around my house lately. Hoping to stay off extra meds, but at the same time expecting for her to be put on more steroids :o( AGAIN! UGH!

Ashlee is doing GREAT! She just finished her Tobi last week and does not have any cough! She went to bible school last week and now I am signing her up for a bible class there on Tues and Thurs for the next month. She is pretty excited :o) She LOVES bible school!AND she learned to ride her bike without training wheels in a matter of 15 MINUTES!!! Yes, 15!!! LOL She is a smarty pants and glad to be riding a two-wheeler!

I was going to post videos of walking and bike riding, but this won't let me right now for some reason? Oh well!

Well, we are all mostly just happy to HOME together!

Hoping our next hospital stay is FAR AWAY in the FUTURE!

Bronchoscopy

Just wanted to update you all on Jordin's stay here. Things went great over the weekend (well, of course things would go smoothly while grandma stays...saved the dirty mess for mom :o))! My only problem I noted over the weekend was from Sat, grandma told me they did a blood draw then came back later to do it again stating that they 'lost' the last one! Are you kidding??? You lost her blood, now you're taking more? I would not have been happy if I were here and they WILL hear about that from me! Anyways, I got to spend the weekend home w/ Ashlee and got some much needed rest! THANK YOU Grandma!!! Jill is the BEST!
So, Monday night was another fasting night (of course they had to do a blood draw in the night and ended up waking her at 4:30 am :o( UGH! pissed me off!...no food/bottle after midnight, clears til 9am and nothing after that til after her bronchoscopy, which ended up being about 2:30 before she finally got to have a bottle. She was VERY happy to have that bottle! (and so was I after a long morning!!!)
Her bronch went very well and quickly. Dr. Millard found lots of mucous again and suctioned out as much as she could. Some of it had particle like stuff in it, we are hoping getting a bunch out will help her out some. All that will get sent in for a culture (which her throat culture from Tues came back clear, hoping for the same results with all this!) Dr Millard was concerned with all the mucous left even after beingon abx for a week already. She has also said that the tracheomalacia Jordin has is considered moderate. Her cough will be worse for a while after her bronch, but otherwise she is just happy go lucky climbing all around and trying to get into everything like normal again!
Oh yes, and AWESOME news is that she is gaining weight!!!! She has gained over a pound in a week and is now 17 pounds!!! She is eating very well! (Well when they let her!!) So happy for the weight gain and so were the docs!
I will be here through Thursday, I think Jill will be coming back up Thursday night so I can still prepare and have our yardsale this weekend :o) We have lots of crap to get rid of and could use the money! I think that's all the news for now...things should be pretty steady from here on out (I can only hope!). Just running these IVs and hoping we can get out of here in the 14 days planned :o) We'll keep you all updated...

Another admission for Jordin :o(

Well, here we are again...in the corner of the hospital w/ Jordin looking over Grand Rapids. She was admitted again from her clinic visit for many reasons...wheezing, bad cough, low weight/height, and lots of mucous production. We are looking at 14 days with her this time.

So our first 24 hours have been the worst EVER! I can't even believe it has only been one day. I will try to make this as quick as possible...She got her IV after we got here, nurse screwed up trying to 'drop' blood samples from the IV before completely placing it, so now Jordin has a nasty ugly bruise on her arm ( to go along with her other 2 or 3). Then come to find out an hour later that she didn't even get all the blood they needed?!?! So she had her blood done 3 times yesterday :o( Then, no meds delivered for bedtime...so I gave her the meds I happened to bring along and they did her nebs at a decent time. Sat here trying to keep her busy for about 2+ hours (with nothing going on, not even abx started yet) then finally got her to sleep around 10ish and in her bed around 10:25. Plugged in her IV machines, and not a second later they come in saying they need to take her down for a chest X-ray! Are you kidding me? I was furious! I argued, but they insisted it had to be done. So off we go for x-rays...she slept through to the end and woke up for a few minutes, but luckily went back to sleep once we got back to our room :o)
Fast forward to about 3:30 am when they came in to check her vitals, woke her up taking her temp. So I got up, she finished vitals and I said she would probably need a bottle to go back to sleep at that time of the night. Nurse told me she couldn't eat! She was NPO since midnight for her central line in the morning! I was NOT informed of this prior to bed. AND, if she can't eat, then DON'T wake her up!! SO I spent the next hour laying here fighting her to go back to sleep. Finally got her back to sleep. Morning comes and nobody can seem to tell me what time she is having her central line placed! 9am rools around and I am SO mad cuz Jordin has already missed 2 bottles and is starving! Now the student nurse that comes in tells me she is not having her line placed till tomorrow, she is only having an Upper GI and a swallow test today! WHAT?!?! My 1 year old is starving and she shouldn't be???? Excuse me??? I must have been turning red, cuz everyone got very apologetic and sympathetic. I was SO upset! Then the RT wants to do her nebs before she eats?? I don't think so, hello...she has been waiting all night to eat! Forget all you! So anyways, she got to eat and then had to go back to NPO for her 2 tests she did have. The doctor had scheduled her line to be placed on Thursday, so she is not sure what or how things got mixed up. And needless to say, the social worker felt it necessary to get Patient Relations involved in such a screw up on an infant. Still waiting for them to come to my room.

She did well on her Upper GI and everything seemed to look fine with her anatomy. It wasn't her favorite thing, but she made it through. She was passed out while waiting for the swallow test since she hadn't gotten decent sleep the night before and I told them she was not going to be interested in eating all their crap they had planned for the swallow test if they woke her up. Well, of course they didn't listen to me...We propped her up in the seat and made her wake up, only to shove a bottle in with barium in it, which she didn't drink the amout they wished her to, but the couple sucks she took looked okay, then she ate some of the applesauce/barium and that was it. She was done AND of course never went back to sleep after that, so crabby ALL afternoon! I finally got her down for a nap around 4:30 and things have been much better since then...hopefully we can stay this way.

Unfortunately we have to wake up by 4:30am to feed cuz after 5am this morning she can only have clear fluids til 9am, then nothing til after 1pm when they place her central line. So it will be another long day...

Waiting for culture results to confirm she didn't get any of the B Cepacia from that darn Tylenol.

She is on 2 IV abx, 1 IV steroid and 1 oral abx (that she hates!). The doc said she was sounding better already today :o)

Well, I think I have said everything I wanted to, sorry i am so full of it tonight, but it's been a long day! I am off to bed!

I am going to try to post this video I took of Jordin letting everyone know what SHE thinks about all this, not sure if it will work or not!