Our Journey From the ER to the Hospital Room
After several weeks of worry, and at least three trips to see our family doctor, I finally had his attention. There was clearly something wrong with my seven year old son.
Weeks of migraines a few times a week, a few weeks of a ringworm-like rash, and now lethargy, sore joints, a sore neck, and refusing to eat and drink – had finally gotten our doctor to listen to what I had been telling him. Something was clearly wrong, and I was not leaving his office ’til he got to the bottom of it.
He decided to send Cameron to an Emergency room an hour away. It was a bigger hospital, where they would be prepared to do an emergency Cat Scan and Spinal Tap on a seven year old. They called ahead and set it up. He was starting to suspect that Cameron had Lyme Disease, or Lyme Meningitis.
We made our slow way out of our local hospital. Cameron was walking in baby steps and didn’t seem to know where he was, why he was there, or even who he was sometimes.
I was obviously worried, but holding it in, now that I had it back under control again. I was worried about his health, whether we were being taken seriously in time to save him. I was worried about getting lost driving to the hospital, therefore taking more time to get help for him. I was concerned that I would have to convince a whole new set of hospital staff that this was serious.
With all of this built up in my mind, I did what I do when it becomes too much: I prayed. I prayed that God would watch over my little boy, that He would get him the help that he so desperately needed. I prayed that God would let the hospital staff take us seriously, that he would give them the wisdom to find the answers. I also prayed that God would help us to find our way safely there without getting lost.
We got there without trouble. Finding parking was another matter. We circled the huge Emergency Room parking lot several times, before finding one that seemed a mile away.
The walk to the entrance seemed to take forever, as Cameron was walking in baby steps and seemed to be very out of it still. After an eternity, we finally got to the door.
I spoke to the woman behind the desk, told her what was wrong, and that our doctor had called ahead and made arrangements. She called someone else, in an attempt to confirm what I was saying. The person she spoke to had not received the call; the other person in her area was not in the room at the moment. We were instructed to sit in the waiting area and wait to be called for triage.
Triage wasn’t much of anything. They took his temperature, blood pressure, and sent us back out.
We arrived at 2:20. He came to himself at about 3:00. He did a lot of crying; I did a lot of comforting.
Around 4:00, a girl who had been in our area and also waiting came back to her seat with a bag of popcorn. My little boy, who had barely touched food or drink in several day, now decided that he wanted popcorn. Unfortunately, as much as I wanted to feed him, and as much as he wanted to eat, he wasn’t allowed to, because he would be knocked out a bit for the spinal tap.
When I had to refuse his request, he cried like his heart was breaking and I was hurting him. My heart was breaking too.
We finally got in at 4:50. They took us down a very long hall, giving us an idea of just how big this place was. Our local hospital would fit into just the emergency area, I think.
A pretty student came in and took our information, a nurse came in after the student went back out, the doctor eventually came in. He took our information, checked out the rashes, and declared that he didn’t know why our doctor was concerned about Lyme Disease or Lyme Meningitis; he himself had never seen it present like this, but he would do the test anyway, just to be on the safe side.
While we were waiting for the Cat Scan to be arranged, several more people came into our room to look at the rash. Each one asked for our story and wanted to hear about it from beginning to the current situation. I soon got tired of telling the story. Cameron soon got tired of everyone asking to look at his belly, where the biggest rash was.
An hour or so later, we were led in for his Cat Scan. I knew it was very important for him to stay very still during the procedure, so I used my firm voice.
“No talking, moving, or crying,” I said.
“Why?” he said.
“Because they’re taking pictures of your brain. If you move, the pictures won’t come out right.”
The test lasted only a couple of minutes. He was a real trooper, and we were soon heading back to our room.
About an hour later, they came into the room to put the IV into his arm. They would be drawing a lot of blood, and then hooking the fluids up to him.
As soon as they got near him with a needle, he started screeching, “I hate needles! Needles hurt!”
They tried to comfort him; he just screamed. They tried reasoning with him; he screamed some more. I finally resorted to holding him down and telling them to get on with it. They drew 8 vials of blood from him. The blood would be used to run various tests, including the one for Lyme, which might take up to a day to come back, compared to the three it would take in our little local hospital.
About an hour after that, the nurse came in and put something into his IV that was supposed to make him sleepy. It did absolutely nothing to him.
Meanwhile, he had been asking to leave, or at least to eat, for the whole time we were there. I promised him that when we left, I would buy him McDonald’s.
The team showed up for the Spinal Tap about 40 minutes later. They put something else into his IV, something that would better knock him out (but not completely), so that he wouldn’t move for the procedure. While that was being administered, they examined his rash, as if he was an interesting lab specimen. They were awed by how far it had spread and how bad it looked. The doctor told the others what they were looking for, and that he had initially been inclined to disbelieve what our doctor thought, but that he himself couldn’t explain why the rash kept spreading so badly.
I watched my little boy’s eyes close and saw him sort of drift off. It was actually amazing to see. They then told me to go take a breather, and that they would come get me in about an hour.
I went outside to call my husband. As I opened my cell phone, I saw that he had left me a voice mail. He sounded scared. He practically begged me to call him. He said that he had been waiting for word from me for hours and was getting very worried.
I called him and apologized for not making contact. I explained that I had no cell service in that area of the hospital and was unable to make the call. I told him that Cameron was getting the spinal tap right then. My husband said that he had been alternating between being angry and wanting to cry all day. Now, he just wanted us home.
We talked for about 15 minutes, hanging up reluctantly. I then went inside to wait. When I was called, I reentered the room to find my child freaking out. He had woken up extremely cranky and teary from the medicine.
He was so upset, that the nurse said he must calm down before he could leave. It was 8:40, he couldn’t leave for an hour from the time the last dose of medicine was administered, which would make it 9:01. I spent the next half hour working at calming him, through a combination of reasoning, comforting, and bribing.
9:01 came and went. No one told us anything. By 9:30, I went out and told the nurse that we desperately wanted to go home. We had a long time on the road ahead. She went back and asked the doctor. He insisted that he wanted to wait for the results from the Spinal Tap to come back. She came back and told me. I was less than receptive. He came out and explained to me that he would hate for the results to come back positive while were on the road, thus causing him to have to call us back. I told him that if that happened, we would just go to our local hospital. He said our local hospital wouldn’t treat Cameron, because they weren’t even willing to test him, much less treat him.
He said that he honestly expected the tests to come back negative, but he didn’t want to chance it. He had the nurse call the lab and see where they were with the tests. The lab said they were putting the results into the computer and that we should have them in about 10 minutes. I went back to the room to wait.
When the doctor came back, he had some of the team with him again. He said, “You know that thing that I said probably wouldn’t happen?”
I said, “It didn’t happen, right?”
He said, “No, it didn’t happen.”
I soon discovered, however, that we were having a communication glitch. When he was saying “It didn’t happen,” he was saying that we weren’t going home. I was hearing it as the worst hadn’t happened. When we were finally on the same page, I realized that we would be staying.
Cameron looked up at me and had the most plaintive voice, as he said, “Are we going home?”
I said, “No, honey. We’re not going home. We have to stay for a while.”
He started to cry, and then I started to cry as well. The doctor tried to comfort me, telling me that I had done the right thing. That I had pushed for Cameron to be seen, that I had stood up for him. That I had likely saved his life. I said, “Yes, but I feel so bad for him. I promised him that if he did everything right, he could go home. He did everything that he was supposed to do. He deserves to go home.”
We got ourselves under control. They promised Cameron that he could eat now, so he perked up. I walked outside to call my husband and break the news. As I passed the nurses station, I heard the student telling someone about what had happened in the room. She was saying, “It was so sad.”
I called my husband and burst into tears, as I said, “We’re not coming home tonight. He tested positive for Lyme Meningitis.” My husband was quite upset, he comforted me, but he was working through his own feelings of anger at us not being listened to for so long, and sadness at what was happening to Cameron, plus missing us so much.
We didn’t get a room ’til after midnight. When we finally reached the children’s ward, I had to explain the situation again, they looked at his rashes again, and we spent some time getting all set up. By the time we got to sleep, it was 2:00 in the morning.
The next day, two doctors for our section came to see us. They said that we were waiting for the blood results to come back. They were expecting a confirmation of the Spinal Tap results, which would mean that we were treating the right thing and on the right track. However, if the tests did not come back the same, we would be staying until we got to the bottom of this.
The blood tests soon came back. It was definitely Lyme Meningitis. Many of them had never seen a case before; the ones who had seen this before, had never seen it present like this.
The way it was explained to me was that he had contracted Lyme Disease, this in turn went to his blood stream, and then went up to his brain. It caused pressure on his brain, giving him migraines and the other symptoms that he was experiencing.
Although this was a difficult journey for us all, the plus side may be that some other child may not have to wait so long to be taken seriously in the future. The lesson here is, trust your instincts as a parent. If you know something is wrong with your child, don’t let anyone push you away. You are their advocate. Health care professionals: please remember that parents know their child best. Just because you haven’t seen something show up a certain way before, doesn’t mean that it is impossible for it to be that condition.