Saturday, July 9, 2011

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!


  1. The sight of total relaxation & exhaustion. They had a big day and were rewarded with a nice nap. Looks like you even made it out of the parking lot before the fell asleep.
    Though the docs didn't just say all was rosy, it seems as if they were good, helpful, and ready to do battle. Congrats on surviving an arduous day.

  2. That poor girl! I am sure I wouldn't be as happy as she is with all that she's gone through!! You're such a good momma for doing all you can for the girls ... they are so precious. I feel like I KNOW them just becuz of all the pictures, videos and news ... thanks for sharing!!