The Longest Day

We woke early to get to Texas Childrens Hospital for our 10am appointment. We got there early and after paperwork was complete and waiting a while Aubrey began her echo cardiogram (ultrasound of the heart.) The technician decided that Aubrey was too squirmy and would have to be sedated. Unfortunately, they didn't have an appointment available for that until 2:00. So after lunch and a walk, we went back to the cardiology unit. While we waited for the echo, Aubrey had her chest x-rayed. She did not like that at all, but recovered quickly. When it was finally our turn, Brian and I took her back to "Tranquility Bay" (where they sedate all the little babies.) They gave her a liquid medicine to help her go to sleep and she gagged it down. Luckily, she fell asleep quickly once I started nursing her. From there it was back to an echo room where her heart was looked at and data collected for over an hour. There were doctors in another room watching the echo as it was going. When the technician thought she was done, she checked with the doctors, and then came back for several more minutes. Aubrey stayed asleep for the entire test and only began to stir at the end. They did an EKG (a quick test,) and took us back to Tranquility Bay for Aubrey to wake and nurse. We were taken to another room to wait for the doctor and the results. After about an hour we were told we needed to do it again. The doctor met us in the hall to explain that this time it wouldn't take as long since they needed to check only one specific thing. They had a doctor do the echo this time and after three trys, they had what they needed and we headed back to the room to wait for the doctor. The doctor spent a lot of time and care explaining Aubrey's condition and answering all of our questions. I'll give some of the facts we learned and then try to explain some of the implications for Aubrey. -First of all, this hospital and this doctor in particular has seen a lot of patients with Hypertropic Cardiomyopathy (HCM), and even in babies as young as Aubrey. This is nothing new to them. -There are four different typs of therapy to treat this condition and of those there are 2 that are used in children. They are medical (drug) therapy and myectomy ( surgery.) Texas Children's is biased (based on a lot of data) towards the least invasive treatment, medical.-Most HCM is caused by a genetic mutation, either passed on from parents or a spontaneous mutation in the child.-Aubrey is asymptomatic at this point, which for this doctor rules out surgery for the time being.-Aubrey's HCM obstructs bloodflow to the Aorta. Aubrey's obstruction is considered moderate (not severe.) Her Mitral valve also has a moderate leak/regurgitation, probably caused by the HCM. The assessment in Alaska did not differentiate the Mitral leakage from the outflow to the Aorta and led the cardiologist to conclude a more severe obstruction. This is the aspect that took so much time here in Texas as well.-Beta Blockers are used to lower blood pressure and decrease stress on the heart. Texas Children's recommends increasing the dose of the medicine as long as it is well tolerated.-The scariest outcome of HCM, one that is talked about most but happens rarely, is sudden death. Based on case histories from Texas Children's, the chances of this happening are very low, especially while she is young (before puberty) and while on medication. -Aubrey needs to have a few more tests (blood and urine) to begin to find the cause of this disease. We will also have our hearts looked at. So with all of that information, what does this look like for the Bucks? Well, first of all, we will be finishing out the week in Houston and then hopefully be back for the Heart Run in Anchorage on Saturday. Aubrey will have the rest of her tests tomorrow, but we won't find out results for quite a while. She will remain on the medicine she is on for the next month when we will have another appointment when dosage will likely increase. We will most likely come back to Texas Children's for this appointment. By then they may have more of an idea what is causing her HCM. Assuming the best case scenerio, she will continue to have heart check-ups monthly, then quarterly, then less frequently if all is stable or better. Her progress will be closely monitored and medication regulated. As a little kid, her life should be fairly normal--though we will probably be a little extra-portective. As she gets older her activity level will have to be limited. Competitive sports will have to be limited to golf or pool or something along those lines. There may be more complications as the months and years go by, but we will have to just take them as they come. There is always the possibility that she may have to have a surgery in the future, but for now, we will be managing this with medicine. The doctor said "We treat the patient, not the echo." They will work with us to give her the best care and the best quality of life. When this day started we had in mind that a heart transplant was our best case scenerio. Due to all the risks that involves, we feel like we recieved really great news today. Even though Aubrey has a very serious condition, and will have some limitations in life, we feel SO blessed. After a week where our minds went down the road of losing our little girl, we feel hope restored. And can you believe, we do not feel disappointed about anything we heard today? There are still many unknowns and many wait-and-sees, and we have no guarentees for her future, but we will continue to trust that God will take care of us. We are so thankful for all of your prayers and support. We have amazing friends and family walking through this with us. God has been carrying us this week. We have experienced the peace that surpasses understanding. We have experienced God ordering events to get us the help we need. We have had to put our daughter fully in His hands and not fear. Thank you for your notes, calls, comments, Bible verses, connections, cleaning, things, and especially for your love for our family.