Caleb Anderson Ross
Born July 19, 1996
My meningitis nightmare began on October
3, 2001. I was at work and my babysitter called me. Caleb (aged 5) has a fever
and it won't come down. She had picked him up from school and he seemed "off".
Within a half hour of coming home, he was running a fever of about 102. Nothing
extremely high like you would expect with this kind of illness. Immediately
upon getting the call, I called the doctor - something I NEVER do just for a
fever. I was told to alternate Tylenol and motrin every 2 hours until the fever
came down. He would doze off now and then but by 11 PM the fever still had not
gone down and he started vomiting. I called the doctor again and my doctor's
partner suggested Tylenol suppositories. I went out and bought some (thank God
for all night pharmacies) and his fever actually broke. When I got up at 6 the
next morning, it was still down. I figured that all he needed was a day of rest
and he would be up to his normal antics. My babysitter would be glad to keep
him while I went to work.
I had a mandatory 7 AM meeting that day so I went to work. At 11 AM, my babysitter called: the fever was back. I spent the entire trip home telling myself what I would do to fight the fever but I took one look at Caleb and called my doctor. He was going to be out that afternoon but if I could have Caleb there by 12:15, he would see him. I picked Caleb up and carried him to the doctor - PJs and all! We were at the office by noon.
When the doctor saw him, he didn't notice anything unusual. Caleb's temperature was 101.3 and he was listless. My doctor gave me a choice: put him in the hospital overnight to hydrate him or take some nausea medicine and give him lots of fluids at home. Again I acted out of my normal pattern and put him in the hospital.
We got settled into our room and he was given an IV and fluids. He fell asleep. He then did something completely unusual for him - he wet the bed. I called the nurse to get his clothes changed and as we picked him up - he SCREAMED in pain. The nurse changed his bed and as we put him back in bed - the doctor came in. The look on his face was the first time I realized that we were NOT dealing with stomach flu...My doctor immediately suggested a spinal tap.
They took him off to the procedure room and I stood outside, listening to him scream. Next thing I knew - all the staff is gowned up and masked and they rush him down to ICU. The minute the doctor saw the spinal fluid - he knew. Now the question is - is it contagious????
It's about 4 PM by this time. I'm a single mom so I had no one to call for support. My family lives 2000 miles away and my ex husband lives 1000 miles away. Plus I have 3 other kids to worry about. All I could do was cry. My doctor said he was going to call in another pediatrician. They had given Caleb morphine during the spinal tap so he was sleeping. The next 24 hours would be critical but we had caught it before it was really bad....so we hoped.
About 1 AM, after sitting at his bedside and calling family, I was thinking about going to sleep when he woke up and screamed in pain (like he had when we changed his clothes). The nurses called the doctor who prescribed more morphine. He settled immediately. About 2 AM, I finally felt like I could settle. I get comfortable (if you can call it that) in the hospital recliner and just get ready to dose when Caleb's oxygen alarm started blaring. This was not totally unusual because they put on a slightly too small oxygen connector for his nose and it would slip off occasionally. I went over to him and checked to see if it had slipped but it hadn't. The nurse came in and together we repositioned him, hoping that would solve the problem but his SATs kept going lower and lower. I looked at his chest and said to the nurse "I don't think he's breathing." She gave me that look (I'm sure you have all seen it at one time or another) that said - yeah right. All of a sudden she does a double take - his chest isn't moving. She runs out in the hall and calls the code....within minutes Caleb's room is crowded. I desperately want to be next to him but I realize that I would be in the way. I fade back into the corner and sob silently - I really want to scream but I can't let them take me away. They get him intubated and put on a respirator.
The next few hours are a blur to me. I remember at one point a nurse coming over to me to see if I'm ok - I told her "I'm an adult - you just worry about that child over there." I remember at about 4:00 the doctor telling me that it was out of his hands - he had done all he could do but that the blood gases indicated brain swelling. It didn't look good and I should prepare myself for the worst.
By mid-morning, Caleb was kept in a drug induced coma and they did a CT scan. The doctor never did tell me what it said but they did say that they were going to life-flight us to Fort Worth. They were not equipped to handle him here. I asked a friend to go throw some clothes in a suitcase and made arrangements for the other kids. I brought them up to the hospital to see Caleb. I didn't know if it would be the last time or not.
(PAUSE - as I write this - I remember these feelings oh so well. It might have been over a year and a half ago but I can feel them today just as if it were happening all over again.)
At about 5:30 PM they put Caleb and I aboard a small plane and we headed to Fort Worth. I slept most of the trip because I had been up for MANY hours - I can't even count them. When we arrived at Cook Children's hospital, they rushed us to PICU. Caleb was still comatose. He was examined by neurologists, infectious disease doctors, cardiologists and pediatricians. There was no prognosis at that time. Only time would tell but he had survived over 24 hours so that was a hopeful sign. Saturday morning, his dad arrived. I think that added more stress than helped but he was his dad. The neurologist ordered an MRI but said that it didn't look good. Caleb wasn't reacting to any visual stimulation, he didn't appear to respond to voices. Other physical reflexes weren't right. At this time, they finally decided that the meningitis wasn't contagious. It was definitely bacterial but they couldn't (and never did) figure out what type. The MRI showed severe cerebellar infarcts but the rest of the brain looked ok. As Saturday progressed, so did Caleb. Little by little, he began to improve. Everything but his sight. The neurologist said it was too soon to tell but looking at the MRI and examining Caleb, blindness was definitely possible.
Sunday afternoon, Caleb is doing better and better. We are watching TV (Thomas the Tank Engine Movie) and all of a sudden Caleb laughs. I looked at my ex - it wasn't a joke but the character made a funny gesture - HE HAD TO BE ABLE TO SEE HIM!!!! I grabbed the Pokemon cards that his brother had sent. HE NAMED THE POKEMON !!!! I broke into tears. He wasn't going to be blind after all.
To make the rest of the story short, we were in Cooks for a month. Caleb had to learn to walk again. In the year and a half that he has been out of the hospital his recovery could be called AMAZING - a TRUE MIRACLE. We still struggle with his fine motor skills. At this point, we're not sure exactly how well he will ever do. He can walk and even run now though he still stumbles - especially when he is tired. He has severe ADHD but that medication is the ONLY medication he requires. He is extremely smart. I even got a call from his special ed teacher complaining that Caleb had reprogrammed her computer and she didn't know how to fix it.
I am so lucky that we still have him - he makes us laugh. I almost feel guilty joining this group but the truth is - the meningitis has affected Caleb (and me). He may be a miracle but he is nonetheless a victim of this horror.
For those of you who have not been so lucky - I feel for your loss. There are no words that will ever be adequate and no way anyone else could ever understand the total devastation that you have felt and struggle with. God Bless us all and let's hope we can do something to stop this disease....
E-Mail Caleb's Mom firstname.lastname@example.org