Justin Bieber

Well, I was sure in my last post that something had gained a hold of Rylee's respiratory system, but I wasn't sure what.  As she laid on the couch watching TV, looking so worn out, I checked her levels again to find they had dropped to about 90%.  I knew it wouldn't be long before we'd be heading to the hospital, but hoped the Augmentin she'd just started and the prednisone that she'd been on for a 24 hours would quickly kick in. After Rylee went to bed, we again checked her oxygen level and it had dipped below 90%, hitting about 87% before stabling off.  We did back to back nebulizer treatments of Albuterol, as we have been told before.  Neither treatment helped.  We placed the call to our pediatrician and headed to Hemby Children's Hospital.  We spent Tuesday night in the hospital and the doctor was sure she'd be discharged that afternoon if her oxygen levels stayed steady and if a repeat chest X-ray looked the same or better than the one she had the Friday prior.  We were certain it did, how could it not with all the Vest Therapy, hypertonic saline treatments, antibiotic and oral prednisone.  About an hour after the X-ray the doctor informed us that the X-ray looked worse, they suspected pneumonia was beginning for form in the right lower lobe where the atelecstasis has remained for the past two months.  The pulmonologist had warned that the mucus plug (atelecstasis) was a breeding ground for bacteria, and that would be our major concern with it not dislodging soon.  We stayed Wednesday night, to make sure Rylee could hold her oxygen levels during sleep and to make sure the pneumonia was being contained.  Things seemed to go as planned on Wednesday night and Rylee was discharged Thursday late morning.  We kept her out of school Friday and somewhat hibernated throughout the weekend.  I had planned to be off Monday, Tuesday and Wednesday, since Tuesday was the Justin Bieber concert and Grandma and Pa were in town.

Rylee got to attend the concert and I made every effort I could to make sure that she could.  We had an appointment with the pediatrician on Monday, just to have a listen and to have an x-ray to see if the atelecstasis was still there and if the pneumonia was looking any better.   The X-ray technician was out, so we were told we could come back sometime this week to get it done.  A part of me was scared to take her Tuesday morning, fearing something might interfere with her going to the concert that she has been waiting for.  So I held off on taking her in Tuesday. 

The day was so great and I hope that Rylee remembers it that way as well.  I wanted it to be about her and special, she deserved this day more than anyone I know.  We made signs, took pictures, had a special outfit and got to attend a pre-concert party downtown.  Rylee has found a new heart throb, Cody Simpson who opened the show.  Another teenie-booper artist we'll have to listen too.  I don't mind though, I know Rylee really enjoys her music.  Carly Rae was great and Rylee really enjoyed her.  Waiting for Justin to come on and Rylee started chanting Justin Bieber with the rest of the crowd.  She was excited to see Justin but was a bit disappointed that she couldn't see his face.  She held out until just before 10pm when she asked to go home because she was tired.  We knew it was the end, so we beat the crowd out!  On the way to the car, she told me she was sad because she didn't get to give the shirt we brought to Justin.  We had brought an extra PCD shirt and she wanted Justin to have it.  I thought it would have been great, any more exposure PCD can get would be great.  It was hard for me to hear that because she's starting to ask questions and understand more of why she's constantly coughing or battling some issue with her lungs.  I think she is starting to understand how much her dad and I want to raise awareness for PCD and how important it is and so maybe that was her way of raising awareness.  I told her I would try to find a way to get it to him, so my new mission begins.  I'm not sure exactly how I'll get it to him, but I'll do my best to try.

It was on the way out of the concert, Rylee and I decided that Never Say Never should be her PCD theme song.  With her being such a Bieber fan, I thought the lyrics were perfect--"I will never say never, I will fight til forever"  "whenever you knock me down, I will not stay on the ground."  Rylee is a fighter and some how she always gets back up-from atelecstasis, pneumonia and sinus infections.  Justin's music always puts a smile on her face and seems to let her escape whatever is trying to bring her down.  Music, singing and dancing it what she enjoys, what makes her happy.  Her dad and I enjoy watching her, simply because we know how happy it makes her.

She had her repeat chest X-ray today and the initial report from the tech was that the right lung looked worse than it did on the 11th of this month.  We'll get a more detailed report from the pediatrician in the next day or so.  Rylee has an appointment with the pulmonologist on Monday and from there he'll decided whether she needs a bronchoscopy to remove the mucus plug, based on the last 3 or 4 X-rays.  As much as we don't want her to have the bronchoscopy, we'd like to have this plug removed before it does any further damage and causes any more infection.