After seeing the Neurologist we were moved to another room where the Pulmonologist would come in to see us. This was a last-minute visit, it was scheduled the day before for surgical clearance since I would already be at UNC. Of course I agreed, it’s a good thing it was spring break and my older kids were home.
The doctors were nice, very thorough. There is alot of medical history and information to go over so these visits are not short. They found her asthma to be causing alot of her coughing and belive it to be more from the colder weather. They changed her prevacid dosage from 15mg to 30mg a day because reflux is a big asthma trigger. They were very concerned at the amount of infections she has had and started talking about rare diseases that could be contributing to this. They also did some allergy testing. The day became long very quickly as Sophie had already had enough of the lights and strange people touching her. Sophie was ready to get out of there, she was rocking herself and began to slap me, pull my hair and eventually bite me. Just another day in my life!
They will be performing a flexible bronchoscopy and taking some lung samples. First they will perform the bronchoscopy and check for any malformations and then they will be taking a tiny amount of fluid from her lungs as well as scraping a small amount of cells from her lungs. They want to check for bacteria and to see if there aspiration residue. There are two rare lung diseases that have been known to affect children with special needs that suffer from both asthma and sinus issues. The chances are 1:50,000, they said it’s rare to find but as I already know there is always that chance. I have my own rarity as Sophie was 1:50,000.
The pulmonary team will be working together with the ENT to perform all the procedures this one time while she is under anesthesia. It’s time to start thinking out of the box to hopefully find some answers.
Two social workers made a visit in to see me, very nice ladies. I talked about Sophie, they asked alot of questions and began to go over programs available that Sophie may benefit from. I described all the we were doing for Sophie and the services I was already receiving for her. Just before they left one giggled and said she should come and sit with me one day as she would learn so much from me. It’s always nice when someone acknowledges your dedication and strength.
After a very long 8 hours we headed home. I hate driving alone with Sophie as she chokes alot, she reflexes or she will start coughing so hard she chokes. Either way she hyper-extends her head backwards at those precise moments which make it impossible to clear her airway.
I was unlucky enough to experience one of these episodes less than an hour into our drive home. This time she was choking on phlegm and I had to pull over on a tiny 2 lane highway out in the middle on nowhere. I was lucky she managed to clear it but she did vomit all over herself in the process. It took almost thirty minutes to clean it all up.
The grass was wet and muddy, I was stuck on a tiny 2 lane highway over an hour away from home. It was impossible to push the van by myself, who would steer? I tried to call my husband but he didn’t answer, I almost started crying. I sat inside my car and just prayed, I asked God to help me keep calm (I have a tendency to freak out) and help me figure something out. A few minutes later I decided to turn the wheels to my right and started to slowly hit the gas, nothing! Then I just floored it and that did the trick, I got myself out of that sticky situation before I had a nervous breakdown!
Thankfully there were no more incidents requiring me to pull over for the rest of the drive and we made it home safe where I walked in handed her over to my daughter and took a two-hour nap.