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!