Appointments galore...

We went to Salt Lake this weekend for a bunch of appointments. We always try to fit in as many appointments as we can when we go there. We also managed to fit in some IN-N-OUT and Trevor got to go to a BYU game :) Trevor's parents were also there for a game so they were so kind and helped watch Drake. Drake LOVES his mamma Maureen and Papa!
YUMMY
We left Thursday and only had one appointment that afternoon. It was to get Laynie's hearing aid! She can hear anywhere from 85-90 decibels and normal speech is about 20-40 dB. Some examples of what she might be able to hear is a motorcycle, lawnmower, or a saw. The goal for her hearing aid is to have a half gain, so hopefully she will be able to hear at about 40 dB. Right now they only turned her hearing aid up a little because they didn't want to overwhelm her and they will turn it up more later. We can notice that she hears some things, but it still isn't a lot! She definitely notices clapping and if you talk really loud close to her ear then she makes a response. Hopefully the hearing aid will be beneficial to her. She is only wearing it for short times and we will work her up to wearing it more often.

Eating lunch and Primary Children's Medical Center

Friday she had two more doctor's appointments and then she was going to be admitted for a 24 hours pH probe. She saw her ENT and a pulmonologist. Her ENT said she looked good and made us realize that she will probably have her trach for a long time. He didn't say this, but we got the feeling! He would like her to be done with her surgeries before he removes her trach because of her critical airway. She is very difficult to intubate. She has surgeries planned until she is 6 with her cleft surgeries! He said he may be able to take it out earlier than that but he would just have to examine her airway first. There is a list of tests and studies she has to pass before they can take it out. She also has to be able to swallow most of her secretions on her own, and we need to get her vomitting under control because she apirates it. I suction her formula out of her trach. So her trach is keeping her healthy and out of the hospital for now, but it is such a pain in the rear. It creates 99% of our care and stress at home. It is a DREAM to someday get it out! But it will be awhile and she needs it, so it is staying for now. My guess is another 2-3 years??? I hope not, but it is just a guess.
Her pulmonologist really wants to get the vomitting under control because of the aspiration. She hasn't had pneumonia for 6 months so we are doing a good job at suctioning it out, but it is still a concern. He says it might be part of the reason why she still needs supplemental oxygen (her lungs are constanly being irritated by small amounts of aspiration). He also ordered a sleep study because of her de-sats at night and her high amounts of secretions. He was thinking she might need a ventilator at night.

Next up was her pH probe. I really didn't want to get this done because it is just getting harder and harder to put her through torture. I even walked up to the G.I. doctor's clinic to see if he REALLY needed it to be done (they said to do it). This test was done to check how often she is refluxing and it will hopefully lead us to a solution to her vomitting. They are thinking that her nissen fundoplication might need to be tightened. They stuck a probe down her nose into her stomach and it stayed there for 24 hours. They had to stick it down 3 or 4 times at first because the probe wasn't working (it wasn't programmed right). Finally, they fixed it and got it in. Laynie did not enjoy this at all! Once it was in they did a X-ray to make sure it was in the right location. She was happy once it was in place.

A few hours later she pulled it out! They had to put it back in and it took another 3 or 4 times because it kept getting stuck. Her mouth was bleeding really bad and it makes me nervous that they may have damaged her soft palate! Anyways, once it was back in I made sure to watch her hands every second and when I couldn't she would wear arm restraints! She was so good and all the nurses couldn't believe how adorable and happy she was!

I was so glad that we weren't there for surgery, but it still isn't fun to stay in the hospital. They put a nurse in our room the entire night so I could get some sleep. It was a little weird having someone watch us sleep, but I was grateful I didn't have to get up to suction all night!

We are very happy to be home. When Trevor came to get us she was so EXCITED and so was I to go HOME!!!