January 8, 2000 to September 12, 2004
We lost our 4-year old son Isaac to complications of viral meningitis. The virus was never found and no bacteria was ever present in his spinal fluid. On Labor Day of 2004 Isaac started showing signs of a flu-like virus with vomiting and overall tiredness. The following day he had severe diarrhea and later that night he began running a high fever and complaining that his head hurt.
Wednesday I took him to our family doctor and he was diagnosed with a gastrointestinal virus. Isaac still complained of headaches and was starting to have trouble sleeping at night due to his head hurting. Isaac wasn’t eating or drinking much and slept a lot during the day but was still talking and sitting up when he felt like it. Thursday Isaac appeared very tired and slept on and off through the day. Later that day Isaac even sat outside and ran around in the yard! I made another doctor’s appointment anyway, just to have him checked out. Isaac even slept through the night. Friday morning Isaac appeared much worse with vomiting, a high fever and very lethargic. I walked in to the clinic with a very sick little boy. After being looked over by a physician’s assistant and a doctor, Isaac was given some IV fluids and then sent to our hospital for a lumbar puncture. This was the first time we heard the dreaded word “meningitis”. Isaac even threw up on the way to the hospital. I should mention that throughout this week I had been giving him over the counter suppositories because he could not keep any other pain relivers down. We waited in the hospital ER for 2 hours. Isaac was getting worse and more and more weak and lethargic. My husband joined us and together we worried. After some IV fluids Isaac perked up just a bit and told us a “poop” joke. He punched my husband in the arm and asked him if he wanted to “make something of it!” – Their little joke. It was almost like Isaac was trying to lighten the mood or that maybe he knew that it was the end. A year later we “investigated” Isaac’s illness and finally understood that the meningitis had developed into encephalitis which is a very dangerous type of actual brain swelling. I will never totally understand how a healthy robust little boy could get so very sick. Isaac’s story continues below…
The day “I” died
Technically it was Sunday but to me it will always be Saturday, September 11, 2004. As I sit here typing this I still can’t believe my reality. It sucks. I hate that word “sucks” but I have used it more than ever over the past year. My little Isaac, “I”, stopped breathing around 7:30 AM that morning at St. Mary’s Hospital from complications due to Viral Meningitis. We were on the 4th floor – the kids’ floor. I remember all the cool colors and decorations, lots of pictures of apples. Our nurse even wore a yellow and red outfit that had apples on it. I also remember looking at the movie list to see what we could watch the next day.
But there wasn’t another next day, or the next day. There were no more days to be had. It was over. He was gone. In a flash my baby was gone. Yes, technically he wasn’t “gone”. He still had a pulse and I had a whimper of hope within me but it was bad, very bad.
From midnight on he struggled with pain. He was given about 3 small doses of pain medication over a 5-6 hour period that finally helped him sleep. I remember pacing the room and constantly beeping the nurse. I tried lying by him and helping him to relax but there was nothing I could do. I was a mother who was totally powerless. His last dose of pain medication was at 6:00 AM and he finally fell asleep. The last thing Isaac said to me was that he loved me as he put his little arm around me. Isaac never woke up again.
The phone rang around 7:30 AM. It was my mother calling to see how Isaac was doing. I think I had slept a whole entire hour. I could still hear him breathing – long deep breaths, almost a whistle. The morning nurse came in with breakfast for him so I said goodbye to my mom and hung up. (I could still hear him breathing). I told the nurse that we had a bad night. She looked at him and asked if he was throwing up. I jumped up and saw that he had bluish foam coming out of his nose. As I felt it, which at first I thought it was cotton, I noticed he was blue. The foam, almost like a hair mousse was numbing, like it was his pain medication. I screamed “he’s not breathing!” and ran out in the hallway, and curled up into a ball on a chair in a play area. From this moment on I was outside my body looking down. A definite out of body experience like no other that I had ever had before.
As I sat there crying I looked around and noticed a TV, puzzles, and games that were for kids and families to busy themselves during their hospital stay. We would never ever play with these items. I was told the child in the next room also had viral meningitis. As I sat with my knees against my chest, rocking and sobbing I noticed a “normal” morning beginning for that child. The mother and nurse came in and out bringing breakfast and water. Why not for my child?
As I sat there, alone, the nightmare engulfed me. “Code blue…code blue” was blaring as the intensive care nurses rushed in with carts of machines. I remember looking out the window and noticing people already wearing red for the Badger game that day. I thought that was so weird. Here I was in the nightmare of my life and people around Madison are going to the football game! I finally got gutsy and walked over to a nurse outside Isaac’s room and asked her weakly what was wrong with my baby. She gently grabbed me by the shoulders and told me that he always had a pulse. Immediately a wave of hope rushed over me. Maybe it wasn’t as serious as it seemed. I had also imagined angels flying around him and begging them to help him. Well as it turned out they did come but they did not save him, instead they took him with them and hopefully he is at peace.
Within a matter of minutes Isaac was rushed down for a CAT scan and then to intensive care. In the meantime I had to call my husband who was home with our 8 year old son Jack. What was I going to say on the phone not to panic my poor husband and get him to drive to the hospital safely? I told him that he needed to come to the hospital and take Jack over to the neighbor’s. He would not stop asking why. I had to tell him that his son had stopped breathing. I had to tell my husband the news that he feared the most. He arrived at the hospital in about 20 minutes. As Isaac returned from the CAT scan and arrived in ICU our family doctor arrived and was with us when the doctor came in with grave news. Though it was technical brain information that we did not understand, we knew it was bad. I could tell from our family doctor’s reaction that it was very critical and serious. He sat us down and told us straight out that Isaac may not recover. Isaac had very serious swelling that had pushed his brain down onto his spinal cord which had caused him to lose control over his breathing.
From there the nightmare continued. I called my mother and told her that he had stopped breathing and she and my stepfather made arrangements to get to Madison as soon as they could. A few hours later Isaac was rushed by ambulance to UW children’s Hospital due to the extent of his brain damage. That hospital had pediatric neurologists who could evaluate his severe situation. I will never forget following Isaac down the elevator, through the ER and watching as they put him into the ambulance. My husband and I had to follow it across Madison through all the happy people going to the Badger game in a sea of red shirts and Badger fun. Didn’t people realize that WE were in CRISIS? It was so surreal.
Upon arriving at the hospital, though we knew how serious it was there was no way to be prepared for the diagnosis we would hear a few hours later. After brain scans and testing our little boy was brain dead. Our healthy boy who had only a week of a weird virus, who had landed in the emergency room the night before to receive flu