This week I am am not feeling like the mom of the year. This is because of Brandon's medical transition from age 20 to now at age 21. I knew there were going to be some hiccups, some loss of medical professionals who have seen Brandon almost since birth, some changes in his benefits. I didn't realize they would all hit at once. I was so relieved, excited and proud that Brandon has turned 21. In the last 21 years Brandon has had great medical care and have received help for our family and caregivers to assure we all know how to handle Brandon's medical conditions. Without all this great care Brandon would have had many more struggles. I want to make sure all my friends with loved ones headed to age 21 are aware and are prepared before their young adult turns 21.
Last month Brandon did not receive his normal order of Pediasure paid for by Medicaid. Brandon has been on some form of medical formula since birth. It is what maintains his weight. Since birth, my dream for Brandon was for him to eat food just like all the other kids, through the mouth. I wanted to take him off any type of formula. It was a struggle. After 4 years of speech therapy and very little progress with eating food through the mouth, I insisted that Brandon be admitted to a rehabilitation hospital to attempt intensive feeding therapy. We were in the hospital for 3 grueling weeks. Brandon has intensive feeding therapy with the best team in Austin and finally after three weeks, Brandon left able to eat a small amount of pudding each sitting. I know that doesn't sounds like much, but for Brandon it was a total miracle coming from eating nothing. For the next 5 years we worked non-stop with an intensive feeding program. Brandon still had Pediasure added each day to maintain his weight but Brandon was close to a diet that could maintain his weight. At age 9, Brandon had a major setback. He was at school and choked on a hot dog. The school called 911, rushed in the nurses, and called me. By the time I arrived, EMS had cleared his airway but I could tell Brandon had serious aspiration. I bought him home hoping his airway was okay, but we ended up in the hospital within a few hours. Brandon had several swallow studies the next few weeks and it was clear he was aspirating with every swallow and there was possible damage from the Heimlich. We had to start over. Before beginning with a new round of therapy, I consulted with his specialists. They all agreed that eating for Brandon was about quality of life and not about maintaining his weight. They also agreed that Brandon should eat whatever he wanted knowing that the Pediasure would cover the other nutrients. Brandon is always at risk for aspiration but we limit his food to soft safe solids and monitor him when he is eating. It took another year to recover back to eating food safely through the mouth, but Brandon worked hard and he cleared the the swallow studies.
So again this month the Pediasure did not arrive. I called the durable medical equipment company and they said it was pending approval from Medicaid. It had been pending for over a month. In the meantime Brandon was almost completely out of food. I called the Medicaid office and finally found someone who could tell me why it was not approved. Since Brandon had turned 21, they reviewed his records and were not approving Pediasure. But they would consider Ensure (adult formula). We had been talking about moving to Ensure anyway. But I needed a doctors order. I called Brandon's gastroenterologist, but he is out until Jan 5th. That meant that I needed to get an order from his primary care physician. BUT the primary care physician (adult) that I choose already sent us a notice he was leaving his practice. I had another one I was considering, but realized that I needed to get in for a checkup for him to approve. I called and the next appointment was in March.
So now Brandon has no PCP and no Pediasure or Ensure. He also must move his dental coverage to his waiver benefits and must move his speech therapy to waiver benefits. I also wanted Brandon to have a flu shot immediately because of his history with H1N1 and the new cases coming up in Austin. During the check on an appointment with the new doctor they said we would have to wait until after Christmas for the shot. UGHHHH. Instead I drove him to our CVS and they gave us both a shot before Christmas.
So I am not feeling like I will get mom of the year this week. We will try to hang until next week and see if we can find a PCP more available and get his benefits restarted.
But all in perspective, we had a great Christmas with my family and Brandon. Besides this snafu, life is good at the moment. We are having a little mommie and Brandon time over Christmas and have watched White Christmas several times. It doesn't get much better.
Happy Holidays everyone from Leah and Brandon.
