Infection Part Two

I thought I was getting better, but I'm not. I will not see a doctor, at least for now, but if there hasn't been a dramatic change in Erik's condition today, we will trek to the pharmacy to pick up his medicine. Last night he was better but still obviously fighting an infection in his sinuses that doesn't seem to want to clear.

My friend with ALS is having trouble breathing. He spent two evenings at the ER last week and all of Saturday night in a hospital bed. He no longer sleeps much and goes days at a time without sleeping at all. It sounds like they intubated him for the first time Saturday, although, thankfully, it was only temporary at this point.

Last night I dreamed I was in the back seat of a small car, zooming along miles of nearly deserted parkway. There was not much to look at. Just an occasional strip mall and a couple overpasses clogged with sluggish traffic above us. I was being driven to the airport, but it was still miles away, and my flight was likely already boarding. I was trying to chat with the other passengers in the car and sound upbeat, but I wondered if I make it in time. When I glanced out the window again, rows of poplar trees lined the road, their long branches defying gravity and stretching up to the sky. Their leaves were the colors of autumn, and as the wind whipped the branches of the trees about, the leaves let go, came down in a bright shower, and were briskly whisked across the pavement in front of us. I felt my muscles relax a bit and the panic ebb away. There was simply nothing I could do from here. I would never make it on time.

My Baby the Car Battery

When Erik was an infant, he cried more than other babies. When I put my nose to his sweet face, I could smell something strange. As I knew nothing about babies, I didn't know what to make of it. It was a combination of the sharp scent of peppermint and biting acid. We trudged along as new parents, rocking him, swaddling him, and soothing him constantly. I was finally aware of how difficult our situation was when his pediatrician looked at me and quietly asked how Brian and I were doing. The look on her face was deadly serious, and all of my feelings of exhaustion and depression were instantly validated. At one point, we were asked to feed Erik every two hours 24 hours a day. Every time the alarm would sound, I thought we were simply going to drop dead. After this failed to produce positive results for any one of the three of us, we were allowed to cease and desist. I was asked to cease nursing my baby and instead give him a type of "predigested" formula that cost $25 a can.

We took Erik to the hospital and put him under an x-ray machine. He drank a bottle filled with formula that would glow on the radiographic films. He swallowed the substance as they captured x-ray after x-ray, but the chalky liquid came back up into his throat so many times the technicians said there was no question he had gastroesophageal reflux and saw no point in continuing to irradiate our baby (One year later at the children's hospital in the city just mere minutes after we were handed our devastating diagnosis, I held our son in place at an x-ray machine while I sobbed all over the lead smock I was required to wear. An upright study performed while he ate a cookie would produce the same results).

It was then we were prescribed medication, and our lives changed. First, we gave him Reglan. That evening we had a baby mysteriously screaming in even more agony and spent some time on the phone with a physician who instructed us to stop this preparation immediately. After that medication cleared out of his system, we were given a trial of Prevacid, a medication that turns off the pumps in the stomach that produce acid. The change was immediate. My baby began to emit the soft scent babies should for the first time, and he no longer seemed to be wracked with pain. It was nothing short of a miracle after months of what felt like hell on earth. He has been on Prevacid morning and night ever since. When the doctor suggested we try weaning him long ago, we both laughed too loudly at this and declined.

Now that Erik is older, I decided to stop his morning dose of medication last week and continue giving it to him in the evening. This was two or three days ago, and he seemed to be doing fine. However, this morning he woke up grouchy and refused to eat hardly anything at all. His feelings were crushed when I scolded him for kicking me with his long legs as I changed his diaper, and he repeatedly worked his lips as if he had put a little piece of something in his mouth. He sounded junky and congested up into his nose. Before he could leave in his father's arms for day care, it was clear to me that the reflux was back with the exact same intensity as before. I could actually see his throat beginning to work trying to keep the acid down.

I was already feeling a little blue this morning. The sky is heavy with clouds and the holidays are looming over me like a glittery monster, complicated and heavy, and I want to ring in the New Year already. Seeing the ruthless symptoms of reflux manifest themselves in my poor son for the first time in years was a little unnerving and made me feel like the worst mother on earth. It was also a grim reminder of the darkness this diagnosis brought to this family at one time. I could have done without this today. I thought perhaps that there would be an improvement with age.

There hasn't been any improvement whatsoever.

Erik left sobbing carried down the driveway in his father's arms with tiny beads from the dissolved Prevacid SoluTab on his lips. I'm saying a prayer right now that the magic properties of this miraculous medication take hold in his gut before he is subjected to the additional, terrible trauma of being immersed in a group of squealing, laughing children.

All I can say is this: If I could marry the good folks at TAP Pharmaceutical Products, Incorporated, I would. Thank God for them.