We have made it home! We had a great weekend. Alex and I both had fun catching up with our best friends and enjoying some down time. We braved some crazy rain on Saturday to head out to the annual UMDF Energy for Life Walkathon. It was amazing to see hundreds of our friends and fellow fighters standing in the pouring rain ready to do our part to raise money to find a cure. As the walk was about to start the rain stopped and the skies cleared and we were able to walk without getting soaked! What a testimony to the love and strength of so many fighting this disease and their families who were willing to support this cause regardless of the weather.
Yesterday was supposed to be an easy day with two quick appointments. It was a lot of information!
We saw a new cardiologist first. We really liked him. He came in and we talked about Alex's symptoms and history. He confirmed Alex's dysautonomia and scheduled him for a test to look at exactly what happens in his body and the best way to treat him. Your autonomic nervous system controls your heart rate, blood pressure, sweating, digestion, repiration rate, pupil dilation, etc. Alex struggles with many symptoms of dysautonomia and it will be great to have a treatment in place to help in this area. After we spoke for a bit they did an ECG and Echo. During the echo they found an ASD (Atrial Septal Defect) or a small hole in Alex's heart. I was not prepared for this finding as Alex has had numerous echo's in the past without this finding. Unfortunately when the Doctor came back in to tell me we would schedule a closure I didn't ask any questions. Oops! What I do know is that in April, Alex will go to the Heart Catheterization Lab and they will go in through his groin area and feed a catheter up through a vein to his heart and place a closure device. We are unsure how this will effect Alex, but we are hoping it reduces his fatigue, helps his chronic paleness and exercise intolerance. Certainly not the appt I was expecting!
After 4 hours in the Cardiology clinic, we headed to meet with our GI. Our GI had wanted to see us to check on how Alex was doing since the procedure in January. Overall, Alex has done pretty well. However, our two main problems have been bloating and pain. After discussing these symptoms with Dr. N. We decided to let Alex use the ferrell bag for drainage whenever he is very uncomfortable. It is great to be able to give Alex some relief when he is hurting. He looked at his stomach and saw the amount of distention we are dealing with. He decided to put him on 2 weeks of an antibiotic to see if small bowel bacterial overgrowth (very common in kids with poor motility in their GI systems) could be adding to the distention. We are hoping to see some improvement in this area. Since we have been able to stop using the ferrell bag 24 hours a day, Alex is no longer losing a liter of fluids a day. We are going to cut Alex's volume of TPN (IV nutrition) in half and see if Alex can tolerate it. We will closely watch for signs of dehydration and/or weight loss over the next few weeks. Assuming things go well, we will attempt to come off TPN in the next few weeks.
So as you can see it was quite a bit of info for just 2 appts! I am so excited about all the positive changes we have seen in Alex's care over the last year. My hope and belief in all that Alex's life can hold is higher now then it has been in years. I continue to pray for treatments that will improve Alex's life as well as all the other kids living with mito.
Thank you for always praying for us and surrounding us with your love.