Dillon's patch to dry up his secretions was done and I couldn't find a doctor to write for more. All the doctors kept saying have the first doctor who wrote for it write again - well that was the PICU doctor and they don't write for anything once you leave the PICU. I don't know why messages weren't being given right but they weren't. We got an appointment scheduled with a Pulm doctor... but for some reason my doctor didn't call my normal pulm doc he called a different one. This new one WANTED Dillon to be full of secretions so he could see how bad he really is. huh? That means we are risking an aspiration so he can see for himself it is bad? Why aren't we seeing his doctor who already knows his baseline?
So our appointment was yesterday, we left 1 hour 15 minutes before the appointment. But due to the flooding and sink holes and accidents on the road it took us 2 hours to get there. We called 2 or 3 times to tell them how late we were and they said to keep coming. Once we finally got there the nurse told me we had to go home and reschedule. I argued with them that we were told to keep coming. She made a phone call and said I don't know who told you that but you have to go home. I kept arguing with them and told them if they didn't see him I would have to take him to the ER (he was coughing SO bad by this time for hours!) The nurse practitioner finally came out and said she was the one we talked to on the phone. I explained Dillon's health issues to her and she went to talk to the doctor. They finally said they would see him, but they didn't know how long we would have to wait. It didn't matter - he needed to be seen.
It wasn't too long of a wait and the doctor was in. He was talking to me about options to dry up his secretions and asked if we are sure we want him "dry and sticky" I said yes I have to for the next two weeks. He said Oh you only want it for 2 weeks, oh then that is no problem I can write for it, that wasn't what I was told. AHHHHHH Why wasn't the message given properly that I am looking for help with his secretions for the 2 weeks we have left in the brace then after that we can position him like we normally do?????
Anyways, the doctor and I decided to put him on the medicine he is allergic to. We are doing a low dose and have upped our limits for oxygen to 4LMP if needed. This medicine we can adjust the dose up or down based on what he needs, the patch he was on is an all or nothing and tends to dry him up too much. The doctor also wrote me a script for this in case we need it.
On the way home and to the pharmacy to get the medicine guess what Dillon did. Aspirated! After coughing the ENTIRE 1.5 hours home he aspirated. He projectile vomited brown stuff from the back seat to the dashboard. He has been sick ever since. He started with a fever, high heart rate, non stop coughing, tight muscles, etc.
The new nurse last night didn't understand when to give more of the medicine so he was coughing all night and so he is having a bad day. His oxygen levels are ok so far on the new medicine so we shall see.
I appreciate all your prayers. I am sorry I have to ask people to pray all the time for us, but it makes a difference and it helps me to hear from people that you are praying. There is such a comfort in knowing that people are lifting our son up to the Lord! Thank you!!