Matthew is one in a million (literally...)

So...my sister Keri keeps on telling me that fame and fortune await us as guests on the cable show "Mystery Diagnosis." The question is--would they let me play myself or get someone better looking??

About a month ago (March 9th) we had thirteen people over for Sunday dinner. I had stayed home from church that day because Matthew had hardly slept the night before. He had been fussy on Friday and was refusing to eat on Saturday. I thought it was earaches for sure because he 1. He didn't have a fever and 2. He matched most of the symptoms found in my handy reference guide What to Expect the First Year. It assured me not to worry if there was loss of appetite for a day or so when a child gets earaches. However, Matthew was seeming less and less active and our attempts to drip apple juice into him were not successful. By Sunday morning he seemed to be sleeping well and so we decided to watch him that day, have our friend Tarah who is a physician's assistant check him out later, and then we would determine whether or not we should take him in to the emergency room or wait to take him to the doctor on Monday.

I had just served dessert to the dinner party and went into check on him and he was greenish, expressionless and totally limp. At that point, Matt and I left everyone at our house and took him to the emergency room.

I won't tell you much about that night other than to say that it was bleak. We knew he was sick but we didn't realize when we took him in that he was in critical condition. They gave him a spinal tap, an x-ray and a myriad of other tests to figure out what could cause such a rapid decline without a fever or any other real indicators other than that he wouldn't eat. They put him on life support and sedatives and Matt and I struggled through a long, hard night.

The original diagnosis was pneumonia, which was true. He had one of the worst pneumonias that Dr. Sunderland, the pediatric intensive care unit (PICU) specialist, had ever seen. His entire right lung was filled, thus causing the respiratory failure that he was having when we brought him in. There was no question that he had pneumonia but we wondered about what had caused it, why he didn't have a raging fever and why the cultures they took for the lab failed to produce any growth of bacteria. Although pneumonia can be caused by viruses, parasites, bacteria, etc, the doctors told us that they thought it had to be bacterial because "the other ones never get this bad." But if it was bacterial, why wasn't the culture growing anything??

Matthew was intubated (on the breathing machine) for five days. While someone is on life support, they pump them full of pain killers and sedatives to make it less traumatic and allow their body to use all available energy to fight the sickness. The morning that they took him off the ventilator, we were there bright and early because "it usually takes them about an hour to wake up and you'll want to be there" said the nurse. An hour after they took him off, he wasn't waking up. Five days later he was barely opening his eyes. It now looked like we had won the battle with pneumonia but for whatever reason, Matthew was just not waking up like he should've been.

We started to wonder if maybe it was a metabolic issue with the medicine. Some people just take longer to digest things, you know? But as time wore on that became less and less likely because the half-life on those medicines is so short. The question now was "Did the pneumonia cause this or was the pneumonia a symptom of something else?" Or, did this drastic pneumonia trigger a much more serious disease that was latent in his body but was now active? We had so many questions and no answers.

All the while, Matthew seemed to be improving by tiny increments every day. Parts of his body seemed to be coming back slowly. I think I cried the day I heard he smiled again. But it was evident that he was not improving at a normal rate and that we were not just dealing with a pneumonia. The neurologist got involved and he thought it might be SMA or a form of muscular dystrophy or a few other odd-named and scary diseases. They did all the tests they knew of and as they came back negative one-by-one we were able to rule out one disease here and one disease there.

Meanwhile, we had been moved from the PICU to the floor. Dr. Sunderland, who worked EVERY day of the 23 days we were in the hospital, was spending her nights researching what this could be. After we had been in there 2 1/2 weeks, she came in one day and left a few handouts for me and after I read them I got chills. I called Matt, who was on his way to Boston for a quick business trip, and practically screamed "I know what it is! I know what it is!"

[This is the part in mystery diagnosis where they would pause for a commercial...on a dramatic cliffhanger. So, here is my little commercial: Wear Cacti Ties! Straight from our garage to your closet!! Look good,feel good.]

So it turns out that Dr. Sunderland thought Matthew had infant botulism, a super rare disease that only occurs in kids 6 months and younger who are typically breastfed. Infant botulism somehow gets in their system (airborne through microscopic dust particles or ingested in honey which is why they tell you not to give your kids honey) and colonizes in the intestines and produces a toxin that seals off the nerve endings and causes temporary paralysis. If you want to learn more about it go to www.infantbotulism.org.

After I read about it I felt so strongly that this is what he had. So did Matt and so did our parents. It was the only thing that made sense. Why it happened so fast, the sudden, almost deadly pneumonia (caused by his throat being paralyzed and him aspirating all of this saliva, milk, etc), why the culture didn't grow...in short, everything fell into place with this diagnosis.

Unfortunately, this is so rare that no one really believed Dr. Sunderland. She had taken a stool sample to the lab several days earlier and asked them to send it to the Center for Disease Control (CDC) to test for botulism. She had to go down their twice before they would do it. And the neurologist didn't agree with her either. So, she took a giant leap of faith. The CDC would not be able to give us an affirmative answer to the test for at least a week and even though the neurologist was not on her side, she went through stacks of paperwork and about a mile of red tape to send for a very specialized and controlled medicine owned by the state of California.
Of the 61 cases or so reported in the US every year, half of them are in California so they have developed an immunoglobin for infant botulism. In order to get it, though, Dr. Sunderland had to talk to several pharmacists and doctors before they would send it. She also had to sign paper work saying the hospital would be responsible for the cost in the event that our insurance didn't cover it which is significant because the 1/4th ounce dose that Matthew got cost a cool $50,000. It was a big leap of faith without a sure diagnosis. But she said later that she has rarely felt as strongly as she did that Matthew had infant botulism.

And she was right.

And we were so, so glad because of the possibilities, botulism was the best because it has 100% recovery. My mom took this picture of Matthew and Matt the day that the test sample came back positive from the CDC:

The sweet thing is that Matt is telling Matthew here how excited he is that he will play basketball and run and grow up normal.

Matthew is now home and well and getting chunkier every day. I would say that he is 98% back and that the 2% is not far off. We have obviously learned a lot from this experience, most things too personal for a blog format or too complicated to explain with my wordsmith skills. But they all center around faith and prayer and hope. And love. There has never been a time in my life where I have been at the center of so much love and concern. It is humbling and instructive and I have no idea how I'll be able to say thank you with enough emphasis. Or repay such emotional and spiritual generosity.

I probably won't. But I'll try.