Passed Away December 24, 1998
Our son, Dan, died of Meningococcal Meningitis on December 24, 1998. He was 18 yrs old. It all began on Tuesday, December 22, 1998. I had come home from work because I hadn’t been feeling well. I hadn’t been feeling that well all weekend. It was around 1:30pm in the afternoon and I heard keys jingling in the front door. I was very surprised when Dan and my husband, Bill, walked in. I asked what was up. Dan sat down in the chair across from me. He looked horrible. Bill said Dan had called him from school saying he wasn’t feeling well.
He didn’t look very well either and I thought perhaps he had the flu or was coming down with a cold. He was extremely pale, and had the chills. I said, “Let’s get you upstairs and get you comfortable.” At this point there was no fever. He just seemed weak and tired so he was glad to be able to lie down. In about a half hour I went upstairs to see how he was doing. I felt his forehead and it felt very hot. I went downstairs to get the thermometer and took his temperature. It was 105 degrees. I thought something was wrong with the thermometer so I shook it and took his temp again – same thing. I immediately went downstairs to call the doctor and spoke with his nurse explaining what was going on. She didn’t sound overly concerned but said the most important thing for me to do was to get Dan’s fever down and to do this by putting him in a tub of cool water. So the poor kid had to come downstairs and sit in the tub of cool water while I took a face cloth and sluiced the water over his back and front – he was so cold and kept shivering. Before I got him into the tub I joked around with him about keeping his boxer shorts on for modesty. He answered me when I spoke with him and was very aware. When he was in the tub, for about as long as he could stand it, I took his temp again – this time we had gotten it down to about 102 degrees – not great but better than 105. So we brought him back up to his room, gave him and put a cool cloth on his forehead. He said, “Oooh I was waiting for you to do that.” I went downstairs for a minute, came back up and he felt hot again. I took his temp and it was back up – to 104 degrees. By this time vomiting had begun. I called the doctors office again and the nurse made an appointment for him for 6:45 but said to bring him in early – around 6 so they could at least get him settled in the examining room. He slept for a short period of time and when it was time to get him ready for his appointment he seemed extremely tired, and every time he moved he vomited. My husband brought him to the appointment and I stayed home, since I still wasn’t feeling that well. He was going to be all right. That’s what the doctors are for – right? They seemed to be gone an awfully long time and I was worried. Then I heard the keys jingling in the door and my husband walked in first. For some strange reason I panicked and said, “Where’s Dan?” Bill said, “Don’t worry, he’s right behind me.”
My husband told me that Dan had had a difficult time during his appointment. Every time he moved he vomited. The doctor said it was either strep throat or perhaps the flu and took a throat culture. Since Dan was vomiting so often, and couldn’t hold anything down, he gave Dan a very high dose of antibiotic in a shot. Bill had questioned the doctor about several spots on Dan’s stomach and the doctor wanted Dan to take his knee and touch his chin. My husband said that the doctor had asked Dan to do this but Dan just didn’t want to because he couldn’t do it due to the vomiting. In a discussion about a month after Dan’s death we were told by his primary doctor that that was a test for meningitis. So Dan was home and we were given the instructions of giving him over the counter pain reliever every 3 hrs around the clock overnight.
The next morning my husband had the morning shift of giving the over the counter pain reliever and at that time Dan seemed to be tired but was talking and coherent. When I got up I had decided to stay home to be with Dan. I went in to see how he was doing – no fever. He gripped the bridge of his nose and said, “My head”. I told him I would call the doctor and see if I could give him some other over the counter medication – Dan and I have always had sinus problems and that’s what we would normally take. After a few questions the nurse said it should be fine. So I gave Dan the over the counter medication and then told him I was going to take a shower and that if he called and I didn’t answer that was why.
When I came up from my shower his room was empty. I panicked then realized he couldn’t have gone very far. He went to use our bathroom which is just across the hall from his room. He still seemed very tired and weak and I had to help him back to bed. When he reached his bed he just plopped onto it. I got him settled and then went to get ready. I kept looking out of my room at him and he seemed all right. Once I had finished dressing I went in to him and he seemed to be having a hard time getting comfortable. The only way I can describe it is antsy. Then he kept trying to get up and I kept telling him to lie back down. He began in earnest to try to get up but couldn’t. He kept leaning against the wall and slumping over. He then began to extend his arms over his head. I then noticed that his thumb and middle fingers of each hand would touch when he would extend the arm. He then began to aggressively try to get up. Twice when I laid him back down he said firmly – “Come on!” Then I noticed the clamminess of his skin, his eyelids were half closed, and there was drool out of the corner of his mouth. I realized he was having seizures. I yelled for my son, Tim, who was sleeping downstairs. After I finally got a response I yelled for him to beep my husband, who was at a doctor’s appointment, then I yelled for him to call 911. The 911 tech talked through Tim to me. She told me to let Dan slide onto the floor, if that’s what he was trying to do, and tried to guide me until the ambulance arrived. It seemed to take forever but I’m sure it was in reality a few minutes. The EMT’s questioned me and asked Tim if Dan used drugs. I explained to them that he had been sick the night before and had gone to the doctors so this was not some sort of drug fit. As they prepped Dan to bring him downstairs I went to clear a path. They allowed me to ride in the front of the ambulance. As we were getting ready to leave my husband arrived and I quickly told him what had been happening. We met at the hospital. Bill went in with Dan, I answered the usual insurance questions until I got so ticked off I said I want to see my son.
Nothing could have prepared me for seeing Dan in that emergency room – nothing. He was strapped down, his feet were scraped from when they had set him down in front of our house and they had a bluish tinge. Everyone was moving every which way, asking us questions. They had me call the school to see if any of Dan’s friends were sick. As I walked back into the emergency room I noticed one of the nurses pointing to something on Dan’s stomach (purplish splotches). Right away they asked us to leave and they all put on masks. Shortly thereafter the Doctor came in and told us our son was very sick. He said it was one of two things – viral Meningitis, which would be a good thing, or bacterial – Meningococcal Meningitis which is not, though he has had some cases that survived. Talk about the breath being taken out of you or the floor disappearing from under your feet. The doctor said they wanted to airlift him to either Dartmouth Hitchcock or to Children’s Hospital in Boston. We chose Dartmouth. God Bless my husband – as I was making calls and talking to Dan’s friends that had come to the emergency room – he stayed at Dan’s side to try and calm him down. By this time his seizures had become progressively violent. Before they airlifted him they gave him some medication to calm him down. Before they put him in the helicopter I asked if I could talk with Dan. I tried to keep the fear out of my voice but as I saw Dan’s face and a tear slide down his cheek I could barely talk. I told him that I loved him and we’d see him soon. I couldn’t kiss him because I had a mask on and he had so many tubes, tape, and things all over his face. Once they gave him the medication he calmed down, but never regained consciousness.
The drive to Dartmouth was the longest drive of our lives. The other was driving home after Dan had died. Upon arriving at Dartmouth we spoke with the doctor in charge of Pedi-ICU. He said he does not like to give false hope to parents. He said our son was very sick and he didn’t even know if he could save him. He explained some of the things they had done and what they would do but I can’t even remember anything after he said he may not be able to save our son. All I wanted to do was see Dan. I will never forget the first time I saw Dan in that room – it will stay with me forever. We spent the night with Dan talking with him, holding his hand and having to watch all of the tests the nurses and doctors had to perform to try and get some sort of reaction out of him. He was on so many machines – and a respirator. I just had a horrible feeling in the pit of my stomach but did not say anything in the room so Dan wouldn’t hear. At one point my husband and son Tim left to pick up our oldest son Bill Jr. at the airport, who’s flight was due in from Indiana. He had been having a hard time trying to get home for the Christmas Holiday. His flights kept being delayed due to storms at airports along the way. After what seemed like such a long time my husband Bill came back to the hospital but without Bill Jr. His flight from Indiana had been delayed in Philadelphia. Around 3am I told my husband to lie down for an hour or two and then he could relieve me. The time I spent with Dan was quiet. After I lay down and returned to the ICU room my husband greeted me with tears in his eyes – Dan had had a rough night and they had had a difficult time stabilizing him. I asked if he was dead he said no.
Early the next morning, Christmas Eve Day 1998, specialists came in and performed tests. They acted as if we weren’t even there until one of them took Dan’s arm, just lifted it and let it drop as if it was nothing, and I made a noise. The doctor turned to me and apologized. They had us leave because they needed to put a bigger valve (not sure what it’s called) into Dan’s leg to make it easier to administer all of the medications he was on – that seemed to take forever. We had been back with Dan for just a short time when the doctor came in and told us they thought Dan was brain dead. He was not responding to any of their tests. He said there was one more test that they had to perform, which would show whether any oxygen was making it to Dan’s brain or not. We agreed to the test. I don’t even remember how long it took. It seemed to take forever. By that time our close friends and family had come up. We had called my mom early in the morning to pass the word that it didn’t look good and people might want to come up. After the test they wheeled Dan back into his room and got him settled. The doctor asked to speak with us. He was accompanied by the hospital social worker who had been helping us. I just knew what he was going to say. He said there was no oxygen going to Dan’s brain. He was brain dead. How can a parent be expected to accept this news? It’s a nightmare, it’s so unreal. But it was true.
After the doctor spoke with us we had our close friends and family come into the conference room to tell them Dan had died. It was horrible, absolutely horrible. We went back to Dan’s room and found our son Tim sitting by his side. I tried to comfort Tim but he was beyond that. He just held up his hand, and while holding Dan’s hand said his goodbyes to Dan and left. The doctor told us to take all the time we needed to say goodbye. We didn’t want to leave our son, but we had to. As we left I turned for one last look at Dan and then just started walking until we were out of the hospital. We then drove home to my mom’s because she and Bill’s mom were waiting there for us. They had to stay at home because they needed to be there when Bill Jr came home. He didn’t even know that Dan had died until he arrived at my mom’s. When there was a knock on my mom’s door I went to open it. Bill came in and hugged me asking how Dan was. All I could do was shake my head no, that he didn’t make it. We stayed for a cup of coffee at my mom’s just for a little bit to let Billy rest and then Bill, Billy and I went home.
Our wonderful son who loved his little nieces and nephews, who had the uncanny ability to make us laugh through the worse situations was pronounced dead at 3:10 pm on Christmas Eve within 2 days of developing symptoms. He was as healthy as a horse, was 6ft. 2in. tall and weighed 180 lbs. He is missed so greatly it is almost unbearable. Christmas will never be the same again.