KANSAS CITY TRIP I’ve been so bad about keeping up with the blog lately. Summer is an extremely busy time in the Woodchick household, so the truth is I just haven’t had much time or energy to post. But I’m back at it now! In this post I’ll put our amazing and scary Kansas City trip in a nutshell. After gathering all of Fisher’s medical records and planning for this long awaited trip, we were off to Kansas City. As you can imagine, we were extremely nervous and excited about the flight. Traveling with a baby is hard enough already… Throw in a feeding tube, oxygen, bipap and MUCH, MUCH more and the trip turns out to be 10 times harder. This was Fisher’s first time flying, so we had no idea what to expect. The flight to and from Kansas City was every bit as stressful as I thought it would be. As soon as we got into the high altitudes, Fisher’s oxygen saturations began to drop. We had oxygen and his bipap on hand, so we threw it on immediately. The bipap and oxygen seemed to help a little. Luckily the flight was short, so we didn’t have to panic for too long. As soon as we landed in Kansas City, we checked in to our hotel, rested for a minute and then went straight to our appointment with the infamous Dr. Carsten Bonnemann. If you don’t remember from my last post, Dr. Bonnemann is the senior investigator with the National Institute of Health. He has seen more patients with MD than any other neurologist in the world, and he specializes in finding diagnoses. This clinic is put on by an organization called Cure CMD (Cure Congenital Muscular Dystrophy). Cure CMD was put together by a group of 3 amazing people who have children with Congenital Muscular Dystrophy. Cure CMD was founded to find a cure, raise awareness, and provide support. They’ve done so many incredible things. Fisher’s appointment was held in the conference room of a hotel. There was a roll away bed in the room with about 15 other people including Dr. Bonnnemann, his geneticist and assistant, some of the staff with Cure CMD, and many others. Andrew and I walked in completely frazzled by the long day of travel we already had, but everyone was so patient with us. Before Dr. Bonnemann began his evaluation of Fisher, he made a point to connect with him by talking to him and playing with him. He was very kind, soft spoken and gentle with him. After Fisher warmed up, Dr. Bonnemann began his evaluation. He first looked at his eyes and his back. He bent Fisher’s legs and arms and looked for stiffness and contractures. After doing an evaluation of Fisher’s visible physical features, Dr. Bonnemann began an ultrasound of Fisher’s muscles. By looking at the pattern of the white and black matter in the ultrasound images, Dr. Bonnemann could see which muscles were affected and to what degree. The ultrasound showed that all of Fisher’s muscles are moderately to severely affected, except for his biceps. There is no rhyme or reasoning behind this. After the ultrasound, the team looked over the results from the brain MRI which was conducted a few months before. Thankfully, they did not see anything out of the ordinary there. Then the team brainstormed and bounced ideas off of each other. Most of the time Fisher’s doctors “brainstorm” behind the scenes. We don’t get the information from these “brainstorming” sessions until we see his doctor at a regularly scheduled appointment. Here, they actually discussed Fisher and bounced ideas off of each other in the same room as us. I’m grateful that we were a part of it. It was an interesting and enlightening experience. The conclusion… Dr. Bonnemann confirmed (once again) that Fisher has Congenital Muscular Dystrophy. Congenital = present from birth. We’ve known that Fisher has MD, but we’re in the process of finding out which one. The different types of MD all have different prognoses, so it’s important to pin-point which one he has. Dr. Bonnemann has never seen a patient with Fisher’s characteristics. He’s seen many patients that he cannot diagnose, but typically those patients fall into the same category as other patients. Fisher might have all of the symptoms that point towards one diagnosis, but one symptom in particular will prove that diagnosis wrong. This is a continuous cycle. We’ve now done every type of test there is to do in the journey of finding a diagnosis. Dr. Bonnemann strongly believes that Fisher may have a type of MD that has not been discovered yet. Our next step is to do exome genetic testing. This test will look at Fisher’s DNA, my DNA (Molly), and Andrew’s DNA. The test will look at our genetic makeup vs Fisher’s to find the differences. It is VERY thorough and they will look deep into every gene in our DNA. Exome genetic testing is often how they discover new genes. Because of its complexity, it will take a long time to get the results back. The team told me it will take at least 8 months just to gather the data. Then, the lab will take several more months (hopefully less) to read the data. This is a long time to wait, but I know we’re in the right hands. Now it’s just a waiting game. After the appointment, we all headed out to dinner hosted at the home of one of the founders of Cure CMD. They graciously invited us, the team of doctors and 2 or 3 other families into their beautiful home. This was the highlight of our trip. It was great to be able to connect to the doctors and other families on a personal level. I can’t describe how awesome it felt to talk to people who have been in our shoes. We could talk about our kids without having to describe and explain everything. We didn’t talk about our kids the whole time, but when we did they understood what I was saying. I enjoy spreading awareness about MD, but I can honestly say that it gets to be SO draining. It was nice to be able to talk to be people who just “get it”. The families were amazing. Their relationships and their children gave me so much hope for Fisher’s future. It brings me to tears to think about how well the children got along together. One little was giving power chair rides to her friends, while others were playing on the floor with toys. To see these children get along so well soothed my soul. I’m hoping for a reunion again soon! The next day, we attended a family conference put on by Cure CMD. At the conference, Dr. Bonnemann and another Cure CMD founder talked about strides in the fight for a cure and treatment plans. There was also an open forum. We also met many other wonderful families on this day, which I hope to remain in contact with. After the conference, Andrew, Fisher and I did a little exploring in Kansas City and went back to our hotel to pack for our trip home the following day. The morning we were scheduled to fly home, Fisher’s oxygen levels were much lower than usual and he was very lethargic. We were doing his breathing treatments all night, but nothing seemed to improve his levels. We traveled to the airport with him hooked up to his feeding pump, pulse ox (that reads his oxygen levels), bipap (that supports his breathing) and oxygen. I was so stressed and panicked that we almost went to the hospital in Kansas City. The only thing that made me get on the plane was the thought that it was a short flight and I wanted Fisher to be in a hospital with his own doctors if that’s where he needed to be. Andrew and I were a mess traveling through the airport. I’m not even ashamed to say that I had several melt downs along the way. I was a sobbing mess and I didn’t care who saw. When we boarded our plan, the flight attendants were very attentive to our needs. When the plane got to its’ highest altitudes, Fisher’s oxygen levels dipped to the lowest level I’ve ever seen. Right at that moment, the batteries in his oxygen concentrator died, so he had no supplemental oxygen. Andrew and I struggled to keep him awake, as his oxygen dips lower when he’s in a deep sleep. We had a layover in Dallas, where we got off the plane and were escorted to a private room, where we could do a breathing treatment and charge the batteries in Fisher’s oxygen concentrator. The breathing treatment helped a little and his oxygen battery was charged just enough for the flight home. So, we reluctantly got back on the plane to fly from Dallas home. Right after landing, we went straight to Fisher’s pulmonologist’s office, where he was monitored for a few hours while he slept. It was literally one of the scariest moments of our lives. Although, all things considered, the trip was a success and we’re so happy that we went. We are so grateful that Cure CMD made this opportunity available to us and other families. We are grateful for a thoughtful friend who informed us of this opportunity and has helped us in every step of the way. I’m also so thankful for the prayers leading up to our trip and the prayers lifted up for us while we were there.
Posted on: Tue, 05 Aug 2014 21:48:35 +0000
Trending Topics
Recently Viewed Topics
© 2015