Total Pageviews

Welcome to Dake's Blog

This blog is designed to give you updates on Dake as he enters his journey to Johns Hopkins/Kennedy Krieger Institue Center in Baltimore, Maryland. This is a clinical trial in research focusing on the heart of Duchenne Muscular Dystrophy patients. This is not a treatment, it is research. Dake chose to participate in hopes for himself and for those who unfortunately follow behind him.

I will also share a little into our lives. Dake wants his story told....

The good, the bad and the ugly......

For more information on the research at Johns Hopkins on Duchenne Muscular Dystrophy scroll to bottom of the blog.

Tuesday, July 3, 2012

Home Sweet Home

The night we returned home from New Orleans.
We got back home from the trip on a Sunday evening.  Dake  had a runny nose at the beginning of the trip but had gotten much better as the trip came to an end.  When we got home within minutes he started coughing.  The cough continued until he could not breathe very well.  We pulled out his electric nebulizer or the first since January.  We gave him a treatment with two medications in it.  Soon he was able to relax and breathe with ease.  The cough had come on out of nowhere mimicking the episode  he had back in the winter.  That winter episode lasted a month or little longer.  I pray this was not going to be a repeat performance. 
Dake slept pretty well Sunday night with no more coughing.  He woke up the next day feeling fine.  I was feeling better about him when I left to drive Gracey’s carpool.  Lyndsey would be home with him that morning.
 I left early to take Gracey to gymnastic.  In the summer Gracey wakes up earlier than she does for school. She practices 8:00 till 1:00 Monday, Tuesday, Wednesday and Thursday  equaling 20 hours a week.  Today was my turn to take the carpool of the Athens girls and drive them to the gym in Decatur.
I got the girls to the gym and watched them as they warmed up. They so moved far more than my body would allow me to that early in the morning.  I had nested in my usually spot and pull out my projects for the allotted time for that day.  I would watch when Gracey and her teammates were on the side of the gym where I could see but the other times I try to stay productive as much as possible. I had just got a good rhythm started with my work in front of me when my phone rang.  It was Lyndsey calling explaining Dake had another coughing episode during his bath.  The Home Health crew had called Lyndsey in and she set up his breathing machine and had already had the medicine going. She said he was asking for me.  I told her I would call the general doctor and the pulmonologist and for her to call me immediately if it did not settle down She called back to let me know he had done well with the treatment . I
 I knew I could think better if I called from there instead of in the car or in the middle of Dake having difficulty breathing. I also had to call my” back-up” mom and see if she could pick up the girls in the afternoon.  I also called my mom to go over and check on things but I did not want Lyndsey to have to handle things by herself especially if things did not get better. Don’t get me wrong, she had everything under control but I wanted her to have back up just in case. Our family and a few close friends are an amazing network when things get go a little haywire. I thank God often of the awesome people in Dake’s life.  I got my calls made and alerted Gracey of what was going on and headed out the door. I had a 25 minute drive to home.
Our former pulmonologist  had moved to Arizona (whom we loved) and we basically were starting all over. I have talk to the pulmonologist’s receptionist getting the general information and echoing paper work about a month ago. But Dake has not actually seen him yet. The general doctor agreed we needed to go onto the pulmonologist in Huntsville but he was on “standby” in Athens if we need him.
Dake was mad he had to go into Huntsville.  He did not want to waste his time.  (this was my first sign he was feeling better).  We loaeded up Dake up and my mom and I headed to the new pulmonologist.  There are a few things about Duchenne Muscular Dystrophy that is handled a little different when it comes to medicine. Pulmonology is one of those components a doctor must  understand  Duchenne Muscular Dystrophy or at the least he needs to have experience with muscular dystrophy in general. ( David and I learned early on the knowledge of Dake’s disease we could attain  was the best defense in helping him get the best care.  We  attended countless  workshops, medical  conferences, interviews with research doctors and physical therapist and read books and books. We  had   medical dictionaries  next to the other books looking up words and definitions to make sense of the information we were trying to absorb.)

No comments:

Post a Comment