Andrew and I talked not long ago about him taking over his own story. I told him that I have "shared" his story for so long, but I told him he would have opportunities to share what God has done in his life. I wanted him to be thinking and be ready. Like James says in the Bible, we need to "walk the walk" and not just talk about living for Jesus. We should show it through our actions in every part of our lives. And while we continually must strive for that, it is certainly worth the effort it takes.
A couple of weeks ago, one of Andrew's doctors contacted us and asked if Andrew would come to Charlotte to be on Charlotte Today with him. Andrew was to appear as a patient and tell how his doctor has helped him with his immune deficiency. Andrew agreed, not because he was thrilled to be on live TV but because he wanted to show his appreciation for his doctor. I put the link to the show in the previous post. It went well, and we came on home.
Andrew was contacted by Sports Information at Appalachian when they heard from his coach about Charlotte Today. That led to an article that came out online on The Appalachian. The link is in the previous post.
Today, Andrew texted me to ask me to get his medicine that he refilled online (something else he is doing himself!) and also mentioned he just interviewed with a paper in Winston Salem. A sports writer wanted Andrew's doctor's contact info, so they may write a story too.
I felt compelled to fill in a little bit of information. When I tell a story, it can be 10 pages to Andrew's one!
When Andrew was born just before Christmas in 1993, Pete and I were so happy. He was adorable from the beginning, even following a very long and difficult birth. We prayed the whole time and really believe we delivered him the "right" way even though it took a long time. He was never in distress, but he came out with a very bruised little head. I was so worried that they would mix him up with someone else's baby in the small Abingdon hospital, so I made Pete promise to leave me and go with him - no matter what. Pete told me that his little head was so bruised that we would not get him mixed up.
Early the next morning, a young pediatrician was fumbling around in my room looking for a light. He told me how slick the roads were. He was very personable and friendly, but I wondered why he came to talk to me so early in the morning when no one else was there. We had super nice birthing rooms in Abingdon at the old hospital. However, soon after you had the baby, they moved you to the other side of the floor. In the birthing wing, there was a huge room, television, and drinks and snacks - none of which you could enjoy during labor. In the small rooms after the birth, a little man with a clipboard came around to ask if you wanted to "rent" the TV for $5 a day. I asked Pete if we could - even though we considered ourselves no frills. We had insurance but not much money! Of course he said we could. I will never forget that room or how everything was when that nice doctor came in. And told me that my little baby was having seizures evidently. He was kind, but I don't really remember anything he said after that. I felt so scared and alone. I knew God was there, and I begged him to fix my baby. I remember calling my friend Paula early in the morning and asking her to pray, because I knew she would. And I knew that's what Andrew needed.
It was a difficult week with Andrew in NICU. I was afraid of my own baby, and I knew it. But one day on the way to the hospital, I heard God whisper that I was Andrew's mother, and that He would help me take care of him. I sit here with tears in my eyes, because God has. On the worse days and in the worst nights, God has taken care of Andrew.
We came home with two seizure medicines that we gave Andrew at 7:00 am and 7:00 pm. We did not have anyone knocking down our door to babysit. Everyone around us seemed a little afraid to be in charge of Andrew. I let my mom give him his medicine one time in that first six months. And I let him spend one night with my parents. I think I left him with someone other than Pete for no more than two hours at first. And he went to daycare part-time for a while. But I was okay with taking care of him. I wanted to be there for him. And I trusted Pete was the same as I was, so that helped a lot.
We took Andrew off the medications when he was about six months old and did not have any problems for several years.
Until we found a small place on his bottom that looked like a weird bruise. We thought it was scleroderma at first and dreaded our appointment at Baptist Hospital. I mean, I did not want to walk into the office I was so scared and remember it to this day. Our deacons from church came over and prayed over Andrew and us before we went. We found out quickly that it was not that dreaded disease - and are still so thankful for that. But we found ourselves on a long journey that took us from Baptist to Duke, where we wasted a couple of years, to Vanderbilt. Evidently, Andrew had something the doctors had never seen as a primary disease. They had seen it as a result of drug therapy for immune system problems (mostly in AIDS patients which, again, scared me to death). Andrew was losing fat like crazy on his legs and bottom. When it moved to an arm, one of the Vanderbilt doctors told us it could go to his neck and face and deform him. She suggested a low dose of Methotrexate - a chemotherapy drug used for many things including juvenile arthritis. Andrew took that every Friday for 2 1/2 years and was never sick. The lipodystrophy stopped and has not come back.
Andrew was in school and doing well but would not talk. He talked one week in kindergarten and did not talk at school until sometime in the third grade. He asked Pete when he would talk at school, so he thought he had no control. It was not the worst of what we faced, but it was hard. And I got frustrated having to explain to so many people and frustrated that I could not get help. At that time, I did not know when he would talk! Or if he would talk!
During that time with lipodystrophy, Andrew had some weird liver tests. The doctors who saw them determined that maybe he had a different kind of normal, and that was put on the back burner.
In the second grade, Andrew's seizures returned. They were little foot twitches after he was born, which was bad enough - just hearing the word "seizure." The new ones happened about twice a year and threw us for a loop. He would get stiff and gaze up to one side. It was scary, and he went back on medication. It was determined that he probably had some sort of stroke before he was born, so he has scar tissue. When it is aggravated, it can cause seizures. That certainly is huge motivation to keep him well and even. We felt pretty thankful that the meds worked and kept the seizures to a minimum.
Then in the sixth grade, I picked Andrew and his brothers up at school and noticed his yellow eyes right away. I marched him right down to his kindergarten teacher, Mrs. Cottrell, and asked her what that was. She said to take him to the doctor right away that it could be liver problems. I called the doctor's office on my way there. Once again, Mrs. Scaredy Pants showed up!
We were all in a room when my friend Carla, who runs the lab, came in. She asked casually where Pete might be. I told her he was working on our new house. She told me to maybe call him. Andrew's ALT and AST numbers were through the roof. We had to rule out Hepatitis - the contagious kind - before he could go back to school. We literally spent the next month getting labs, getting Vitamin K shots before labs, waiting by the phone, picking Andrew up from school early almost every day when he could go, and getting a liver biopsy at Chapel Hill. He was wasting away, and finally our friend who is a pathologist in Asheville told me he needed to be treated or would end up with permanent liver damage.
Andrew had been on steroids a lot during his battle with lipodystrophy. The Duke doctors had him take steroids and lots of them. He had also taken another drug that treats arthritis and had him on a double dose. The Chapel Hill doctors were telling me that the steroids stopped his growth. And they did. That was one reason we took him on to Vanderbilt. The Duke doctors had no clue what else to do, and they would not send us anywhere else. We did waste some precious time trusting them.
So the treatment for the liver disease was...steroids. I am sure that is why Andrew is not 5'10". When other moms complain that their children outgrow their clothes and how expensive they are, I still think they have no clue how blessed they are.
We never knew what the liver disease was. The steroids stopped it, and we are so very thankful. It has not come back. And we are extremely thankful for that. I know in my gut that it can at any time, so I am always so joyful when we get normal liver labs.
When the liver disease started, we took Andrew off his seizure meds that were processed through the liver. He did well for a few weeks and then had a seizure in the cafeteria at school and fell back and hit his head. I was about beside myself. I was begging God to show us what to do. I was scared and sometimes slept in the floor by Andrew's bed. I was so afraid he would die in the middle of the night. Every morning I ran to check to make sure he was okay. I was praying for him all of the time, but I lived in fear at times.
We put Andrew back on seizure meds, and that was tough. The new ones changed his personality, but we have a great neurologist who listens. We found one that worked, but the nature of his seizures had changed. They now included convulsions and what you see on TV. He would stop breathing. We had trouble calling 911, because our system here patronized you when you said he was not breathing because he was having a seizure. Two different women said the same words, "Sometimes when person has a seizure, it appears they are not breathing." I had to learn to say he was not breathing instead of he was having a seizure so the operator would flip to a different card. Really? Oh, yes. It was a nightmare most of the time to call 911 when he was purple. Pete would work on him and work with him while I was pulling my hair out. I will say there was one male 911 operator who was a huge help when I needed him later - the epitome of what you should get when someone is not breathing.
The 911 situation was never fixed. I went to a big meeting and was humiliated by some - for trying to help my child. Most people there had no clue about our situation, but some took the word of others that I was just a hysterical mom. That made me feel like a failure. I mean, who cannot get 911 to help their child? Me, evidently. But when we have had emergency personnel at our house a couple of times, they were most wonderful. It was getting them here that was the problem. It all just added to the burdens we already had.
Andrew had a lower threshold for seizures. He had them at home at night but had some at track meets and in class. During that time, Sam was diagnosed at age 5 with Type 1 diabetes. I remember telling God in the hospital, with the very little bit I knew about Type 1 at the time, that I could not do that...too! I am not a nurse. I used to turn green just getting near a hospital. I had overcome that, but I was not a nurse and could NOT give shots! And Sam's story is a whole other chapter in our lives. But it winds in and out of Andrew's.
A couple of nights after Sam was diagnosed, and I was beyond exhausted, Andrew had a tough night. Pete was in the hospital spending the night on the peds floor. Andrew seemed fine at first, but it was fall, usually a difficult time with seizures, and I had specifically prayed that Andrew would not have a seizure. Before bed, Andrew did not feel well. I put him in my room and tried to sleep. He woke me up around midnight talking about Geometry. I flipped the light on and found him starting into a seizure. Before I could get him squared away from that one, he started into another one. I called 911 and told the guy I was skipping the questions. I told him my husband was in the hospital with my other son and that my son was purple and not breathing and that I had no time to talk. The ambulance got here pretty fast. I was running around getting Andrew's medicine bottles like they instructed while trying to get Andrew to come out of it. I don't remember much between the call and the paramedics coming in. One picked Andrew up and ran out of the house. He jumped into the back of the ambulance. I was yelling to Andrew to breathe and for God to make him breathe. It was a nightmare taking two minutes to get my clothes on and follow. I could not breathe until Pete called me as I pulled into the hospital parking lot. I had called him on my way and told him that Andrew was not breathing when they put him in the ambulance and rushed him away.
That night was awful, and it bothers me that I cannot remember much between the call and the guys coming in. I was so helpless and could only call out to God - literally and loudly to help him.
The next week, when Sam still had the big syringes and two different vials with two different insulins, I took Andrew to Duke to a pediatric neurologist. His neurologist here had made the appointment. That doctor seemed perturbed that we were a work-in and treated us as so. He suggested brain surgery and days of testing in the hospital where they bring on seizures. I know some children need that, but my gut told me to get far away from that doctor.
I had a draft of an email in my computer that I had typed to the liver doctor at Chapel Hill asking if we could maybe go back to the old seizure drugs that we stopped when Andrew had liver disease. Somehow it got sent to him one day - over a year after I typed it. He called me and told me we could try that and keep tabs on his liver. Now, that was all God.
We put Andrew back on a drug like his original one from second grade. He did well, but he still had some seizures. Since then, we have gone to a new drug that is like that one with a punch. It is the best one we have had so far.
In 2011, when Andrew was 16, we took him to a doctor in Charlotte for his breathing and cough...finally. He had had numerous walking pneumonia tests that were negative, but he seemed so sick. (Because he really did have walking pneumonia and needed to be treated for it.) Dr. Black did not think Andrew had asthma. He asked a lot of questions and requested Andrew's medical records. We sent him about 600-700 pages. He called back in a couple of months to tell us that he wanted us to see a newer doctor in Charlotte. We went to see him a few months later and had labs drawn. Dr. Patel called us back within a couple of days to tell us that his test results were "alarming" and asked if we would come back and repeat them. We did, and they were the same. We did not know what that meant.
Andrew is not a textbook case of Common Variable Immune Deficiency (CVID). It is where the immunoglobulins that help you fight off illnesses and diseases get so low that they need to be boosted with immunoglobulin therapy. He had his first infusion at Levine Children's Hospital. He opted to do home infusions each week instead of monthly infusions in the hospital. A home health nurse came twice to teach us, and then we took over. And then Andrew took over.
He responded well, but it took a while to boost his immune system back up from about 180 to 1000. We initially were trying it for two years to see if his body would take over from there. But it didn't, so he has had to continue.
Andrew is thankful to know what is wrong and that the infusions can help. Dr. Patel set us up with a wonderful drug company that gives us financial assistance to help meet our insurance deductible and out of pocket. What a huge blessing that is. We have a wonderful patient advocate. They make a difficult disease much easier to manage in so many ways.
Last year, our insurance (BCBS of NC) held up Andrew's meds in January. He went without his infusions for about a month and got sick as a result. This year, they did even worse. They held up his meds until after Easter and then made it necessary to switch drug companies. Our former company found us a new company. Not only did BCBS hold up his meds without repercussions, they made no effort to do anything to help Andrew. At the end of this year, they pocketed over $9000 with their practices - while I was emailing and calling them during that lapse time. Andrew had NO lapse in insurance. Just a poor insurance company who did not care. Andrew got sick in the spring as I knew he would and missed most of his senior track season. He has already been sick this fall. Then he had one great race and struggled with the next because he was so tired. We are praying for him and trying to get him ready for conference next week in Alabama. So the insurance is a huge obstacle for people with chronic illness. I don't understand how they can get away with this, but I will drive to Durham if it happens again and sit in someone's office until it's fixed. I even tried to put $8000 worth of meds on my credit card just to get them so he would not get sick or have a seizure. It has been a most frustrating year with BCBS, but I am trying to ask God to show me what to do and not let it take over my life as it can do. I have to fight for Sam's stuff too, so it gets very old.
Andrew won The Bear in 2015. It's a five mile run up Grandfather Mountain where you climb a mile in altitude. Yes, it's hard to breathe! And he won! It was only a couple of months after Pete had four strokes, so it was an extra special surprise and blessing. With all of Andrew's struggles, seeing him smile really makes my heart smile. And he ran one of the very best times - probably in the top 12 in the history. He did not run this year. He was sick.
Andrew has gone over year without a seizure, and that makes me breathe better. He had three episodes when his legs would not work, literally, and we thought he was trying to have a seizure but never had one. He had dizziness, double vision, and severe muscle weakness. We decided at his last neurology visit that those were probably drug toxicity from taking the highest dose of his second seizure med and to keep tabs on staying hydrated to counter act that. I remember walking out of that appointment and Andrew laughing and saying, "Wow. That was a great appointment!" We have not had all of that many of those it seems. I am thankful that was not lost on him - in the midst of all of this.
Andrew knows God loves him even more than we do. And he has had to learn to depend on Him without really even knowing any other way. We pray he continues to know this and know it with all of his heart.
We are excited to see Andrew run his last two meets. It will be a little bit sad, but he has one more indoor track season left. And then he may be running marathons! That seems fitting!
Thanks for reading. I will close with my favorite verse. I found it in high school and how well it still fits today!
" But they that wait upon the Lord shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint." Isaiah 40:31
