Army of Mom

So this is how liberty dies ... with thunderous applause.

1.06.2005

It was 10 years ago today

I was thinking of the Sgt. Pepper's song as I started writing this. Except that was 20 years ago today.

A couple of days ago I wept as I read a story about this infant who almost died because of a really bad cold. The baby was getting worse and worse and was near death. She had a seizure at one point. The baby couldn't breathe, but her chest was clear and when they tried to suck out the snot, they got nothing. She was on death's door when a doctor wanted to try out a new piece of equipment to look down the baby's throat. It was that one random thing that helped them find a giant, gelatinous piece of snot that was obstructing her airway. Once they plucked it out, she made a speedy recovery. I read it and wept. Not just because it was really sad, but because it reminded me of my eldest.

On Jan. 6, 1995, I thought my life was going to end and my baby was going to die. I don't think I have ever been as scared as I was that day. Funny how I remembered it was this week 10 years ago. I couldn't remember the date, just that it was early January. I looked in his baby book and found the date. Jan. 6. I remember fragments of it perfectly and other pieces are faint memories. My beautiful 4-month-old son was sick. Not just with a cold, but sick. There is nothing like being a first-time mother and knowing whether to call the doctor and to just rock the baby to sleep and give him some Tylenol.

My challenge with my first steps into motherhood were cruelly more difficult than most new mothers as my son was born with Congenital Adrenal Hyperplasia. Fortunately, he was diagnosed at 6 weeks of age through the state's Newborn Screening Program. We were given a brochure, a rudimentary explanation of what happens if he gets sick and sent on our way. We were warned that if he was listless and lethargic that it was a danger sign.

On Jan. 5, he got sick overnight. He was puking and pooping and he refused to drink or eat anything. I didn't even bother calling the doctor that next morning, I showed up when her office opened at 9 a.m. and demanded he be seen. She talked to me about how hyper I was regarding his care, but she saw him. She gave him a shot to help him stop vomiting and told me to keep him hydrated. The child simply laid there as the color drained out of him. I called the doctor back a few hours later because he wouldn't drink anything. I was told by the bitch receptionist that I'd better find a way to make him drink or he'd get dehydrated. Well fuck you, too, bitch. What the hell do you think I'm doing? Uzz and I took turns with an oral syringe putting three CCs of formula down him at a time. Nothing. He'd get a couple of ounces in him and puke again. Called the doctor back and the bitch took a message and said she'd have the doctor call me. No way. My baby was losing his color and barely moving. I called our pediatric endocrinologist in Lubbock, two hours away, and told him what was happening. He told me the hospital would have a room ready for me when I got there. My voice shuddered as I asked the doctor if he'd be ok waiting two hours. The doctor kindly told me that it would take longer than two hours for him to die, but to get on the road as soon as we could.

We didn't have any cash and we didn't have any money in the bank. All I had was a $50 money order I had already filled out for the daycare payment for the week. I hadn't slept all night either. I tossed a few things into a suitcase and we hit the road. We drove like maniacs on the backroads of West Texas heading for University Medical Center where our Texas Tech Medical School doctors were. They, evidently, called our doctor and told her that we were on our way. She called me as I was packing and I told her that he needed help and she wasn't giving it to him and her staff was blowing me off. She called us at the hospital a few times and I never felt she did it because she cared. She was worried that her care, or lack of it, was going to end in a lawsuit when my baby died. And, I was terrified that he was going to die. Uzz rode in the back seat with the baby, continuing to feed him Pedialyte or Similac with a medicine dropper. Anything we could do to keep him from dehydrating. That poor angel. I was shaking. We drove with our emergency lights on the whole way. I'm not sure how many traffic laws I broke on that trip.

When we arrived, we were whisked straight to a room where a team of doctors were waiting for our baby. They immediately went to work on him. Here is this 11-pound baby with all these men and women frantically checking him. We were put in an isolation room and no one, other than us, entered without wearing a mask. They thought he might have meningitis. To rule it out, they had to do a spinal tap. I've had one done before, when I had cancer as a child. At that time, they were testing me for leukemia, but I remembered the pain and I didn't want it done, but I knew we had to. The doctors recommended that we not be in there. They said the baby wouldn't remember it, but we would and they made us wait outside. I could hear him crying and I felt like my heart was going to explode out of my chest at that moment.

We were in the hospital for three days, if I remember correctly. We arrived on a Friday and returned on Monday. Uzz's mom wired us money to a local grocery store. I looked like hell because I didn't bring a curling iron or anything for me for grooming. I only grabbed a couple of outfits for the baby and he promptly had shooting diarrhea on them, so they were ruined for that stay. It was pretty awful and I was so mad when a social worker arrived. In retrospect, we probably did look like white trash, but damn. It wasn't like we could just run home to get a change of clothes. Besides, neither of us were going to leave that baby's side. We took turns going to get food and we slept in the room with him. LabKat's mom and sister came to see us because they lived in Lubbock. They brought the baby some gifts, which I still have. One was a Raggedy Andy doll that is in the boy's closet now. He's much too big for dolls anymore, he has told me. It was nice to have the visitors and a small break from the sadness.

After a wait that seemed like an eternity, we were told the baby had rotovirus, a fairly common ailment that plagues daycares because they transmit it by not washing their hands thoroughly between diaper changes and handling the children. But, it wasn't meningitis and he was slowly improving. It was just very scary that his pediatrician was so cavalier about it. I'm grateful that I followed MY instincts to take him to the hospital and have him cared for. Otherwise, I think he may have died. I'm so glad he turned out fine. I thank God for this blessing of my son and I'm grateful that his birth defect can be managed. It is still deadly and that is scary. I read a story of a young man with CAH who didn't take his medication correctly and he died from pneumonia and it scared the hell out of me.

Today is an anniversary for me. My beautiful little boy is here because I followed my instincts.


6 Comments:

  • At 2:39 PM, January 06, 2005, Blogger Uzz said…

    I remember like it was yesterday. I truly thought I would die of heartache if something were to happen to him! I also remember my evil boss at my job that was extremely hateful about the event. I called her and she said that it was a terrible thing, but that when her daughter was in the hospital with toxic shock syndrome that she STILL went to work. I told her that she could do things her way, but that my son meant more to me than work...nothing was ever the same between us (of course we had problems the day she walked in). Thankfully everything ran its course and I left that job for a TV gig.

    Thank God our little boy made it out of those early years!!! It seemed like he was sick all the time and it pretty much ran me into the ground emotionally...as AoM can attest...I am both emotional and I fiercely love my son:-) The day he was born is still the greatest day of my life and it always will be.

     
  • At 4:01 PM, January 06, 2005, Blogger Army of Mom said…

    I had forgotten about the evil boss from hell in Midland until you mentioned that. I remember the looks on our faces when she said that about her baby. I think I also had a few choice words to say about her, too. God, some people.

     
  • At 5:09 PM, January 06, 2005, Anonymous Anonymous said…

    Good for you for heeding your instincts, God gave them to you for a reason. I can't even imagine the fear and heartache of that time, or perhaps I don't want to imagine it. My favorite thing my pediatrician ever told me was that if I thought something was wrong, it was, no one knows my babies like me, what is normal and what isn't. You have beautiful, blessed children.

    Spacebunny

     
  • At 8:57 AM, January 07, 2005, Blogger Army of Mom said…

    I think mothers should show more initiative, but we are taught that doctors are the authority. I think it more mothers followed their instincts, less babies would die. I could be wrong, but I don't think so in this case. I surely believe that baby would have died had we not hospitalized him.

    With CAH, patients can go into shock if they don't get enough cortisol in their bodies. When, they're sick, our bodies make more cortisol to counter the stress. His body makes none, so he had to get the cortisol in him through injections or IV because he couldn't keep it down.

    *taking deep breaths* I still get worked up about this.

    By the way, not sure what the outcome was, but this pediatrician was sued for malpractice after she almost killed Pickle's godparents' son in the ER. He was airlifted to Lubbock after they took him to another hospital, where they diagnosed the problem, but didn't have the expertise to treat it. He was operated on in Lubbock after she almost let him die.

     
  • At 10:42 PM, January 07, 2005, Anonymous Anonymous said…

    This is Danny Carlton (owner/webmaster of CongenitalAdrenalHyperplasia.org). Sorry for posting as "anonymous" but I didn't want to have to take the time to register. Our son Jonathan was born almost a month after the events you describe. Fortunately the doctors we dealt with were much more caring and responsible.

    Do you post at our message board? Would you mind if I put a link there to your blog? My wife just started her blog at http://LindaCarlton.net.

     
  • At 3:19 PM, January 12, 2005, Blogger Army of Mom said…

    Danny, absolutely you can post a link to my blog. I was so glad to find your CAH site. I only wish there had been something like that when I first joined this club (of CAH families).

     

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