Last Friday morning I woke up ready to hit the ground running for a long day ahead. I was in charge of the school carnival that evening (along with my friend), and we had a lot of work to do. But when Adam woke up, I felt like something was off with him. He told me first thing that his neck hurt and my mind always goes first to meningitis when I hear that, but with a three year old you never know. He might have slept funny or it might be the tag in his shirt.
I tried to feed him breakfast. He ate nothing. That's fairly normal though. He did drink all of his chocolate milk and wasn't saying his tummy hurt or anything, but still, something felt off. I was worried because I had this huge day ahead of me. I gave him some ibuprofen and when that kicked in, he perked up and I stopped worrying so much.
We headed to lunch to gear up for the carnival and on the way there he fell asleep. That seemed really weird because he had slept in a lot that morning already too. And he ate very little lunch again. Still, he had no real complaints about how he was feeling, just seemed off. He never mentioned his neck again. I still had a weird and yucky feeling inside but I thought maybe it was carnival nerves.
I took him to my mother in law's house so that she could babysit him while I set up for the carnival. He ran inside, excited to see her. I told her he seemed off and I hoped he was ok, but then I left for the carnival.
The carnival went wonderfully. But during it Josh called his mom and she agreed that Adam seemed like he was getting sick and said he was asleep. He slept at her house through the whole carnival and when he woke up he had a fever. She gave him ibuprofen and when we picked him up that night he had perked up and seemed fine.
Saturday morning he was not fine. By now we were fully realizing that he was sick. So we just did the regular taking care of a sick kid. Movies on the couch, medicine, snuggles. By Saturday afternoon he started throwing up. This seemed a little odd to me because if it was a stomach bug the throwing up probably would have started sooner. I kept wondering-is it strep? Hand Foot and Mouth? He told us his "bubble" hurt but we couldn't figure out what he meant.
Sunday he was still sick. Still threw up some and was just generally not feeling good. Fevers really started on this day. He was also a little shaky.
Monday is when things got scary. He woke up scared. He was very shaky and couldn't control his body well. Josh took him downstairs to get him breakfast because we thought the shakiness was likely due to lack of food for 4 days. He didn't eat much.
When it was time to take the boys to school I took him out to the car and realized that his car seat wasn't in because of when he was at Grammy's on Friday. I set him in the van and turned to get the car seat and he started to crying and sort of screaming and I realized he couldn't stand up. By the time I got around the far side of the van he had fallen to the floor and was shaking and scared and I could tell he was dizzy and his eyes were shaking in his head and he was just not right. I could tell something was very wrong at this point. I struggled to get the car seat into the car while he clung to me. Even with me holding him he felt like he was falling and he was dizzy.
I drove the others to school and came home and called the doctor right away. (Just on a side note-our regular pediatrician had to change insurance due to Obama Care and I hadn't found us a new one yet, so I had to just call a Dr. that a friend recommended. Only he isn't taking new patients, so I had to just take the Dr. that was. One that we had never met.)
I took him to the Dr. about an hour later. My guesses were either that he was very dehydrated and maybe needed an iv (he hadn't successfully had anything to eat or drink in days!) or that he had a severe ear infection that was affecting his inner ear. I did have a premonition that we would be at the hospital that day but I thought just maybe for an IV for rehydration or something.
The Dr. examined him and was very concerned. He started throwing out all sorts of possibilities like a brain tumor or other horrible diseases. He did mention meningitis but said his neck didn't feel stiff.
He wanted me to go to the hospital-to Primary Children's up in Salt Lake City because they have all of the specialists. I waited in his office forever while he filled out paperwork and called ahead and things. Then I headed up. I called Josh and he left work and was shortly behind me driving up.
I got to the hospital with him about 12:30 and took him to the ER. The took us to a room and began all kinds of diagnostic tests. They started with an IV and blood work thinking that maybe the throwing up had thrown off his sodium or glucose or something. That was a negative. They did x-rays to see if his bowel was blocked. Also negative. They did a CT scan of his brain. We just sat in the ER with him this whole time on 2 hard chairs and took turns holding him. He was miserable:
He laid in the bed a little but mostly we just held him and he slept off and on:
This was a long afternoon with a lot of waiting. Things move very slowly in the ER, so we would sit and wait for hours sometimes between tests. I have to say that while I was nervous and hated seeing my baby so sick, I had a deep feeling of peace throughout all of this. Josh said that he did too.
Finally they did a lumbar puncture (or spinal tap). I left for this. No way was I watching them stick a large needle into my baby's back. The spinal tap was done about 6:30 pm. And we waited some more. The good news was that the fluid was clear.
They came in a while after the lumbar puncture and told us what they found-elevated white blood cells in his spinal fluid which meant Viral Meningitis. Now, Meningitis has always been a disease that scares me. A girl at my high school died of it and then a friend from high school died during college of it. So these were scary words. But they quickly explained that there is a difference between viral and bacterial meningitis. Bacterial is the really bad kind. There did not appear to be any bacteria in his fluid, so they weren't super worried, but put him immediately on antibiotics just to be safe.
They told us he would need to be admitted to the hospital while they waited for the final results to guarantee that there was no bacteria. They said that would take 24-48 hours. They also wanted to monitor him.
And so we waited for a room. For 3 more hours.
Let me pause though to say that the doctors, residents and nurses in the ER were absolutely fantastic. They were kind and loving and concerned and competent. We felt like we were in very good care.
Adam got to eat a slushy while we waited for our room. Finally about 9:30 or 10 we got to go to our room upstairs. (Before this they swabbed his nose to check for other viruses. They didn't tell us this at the time, but they were checking for Enterovirus which has been going around and causing some of the same symptoms Adam was showing. Viral meningitis means that a virus has gone to the spine. They don't usually know which virus and don't really care unless it's something like Enterovirus or Varicella. The treatment doesn't change and there is nothing they can do-so it doesn't really matter what the virus is, just that he has one and it's in his spine.) Because he was a risk for Enterovirus, he was on isolation in his room at the hospital. He couldn't leave the room and the nurses and doctors all wore masks and protective coverings.
Once we were in our room a flood of Drs. and nurses started. Nothing that we had done downstairs counted for anything now. They asked us the same questions, came to see him try to sit and walk, poked him, prodded him and made him miserable. I will say that at this point I was getting frustrated. He was miserable. Absolutely miserable and they wanted him to walk across the room to them. It's 11:00 at night, he's sick, he's had a horrible day and now you want him to try to walk, which he really can't do thanks to the disease and he's scared to do because of the falling experience that morning. And not just one doctor but two came in and went through this whole thing with him. I understood that they were just being thorough and I appreciated that but when I say he was miserable that doesn't really even begin to describe it.
His face does though:
During this time Uncle Tim came to visit and help give him a blessing with Josh. That was the one time all day that I saw him perk up. As soon as Tim walked through the door he yelled "Tim" and sort of smiled. Then Tim gave him a stuffed frog and he smiled at that too.
Finally they left us at about 11:30 or a little later and we began the process of trying to sleep. The next three hours were the most awful that we spent at the hospital. Adam was exhausted but couldn't sleep. He kept twitching and thrashing and waking up screaming "I don't want to!" He was having nightmares about the things that he had been through that day-particularly the lumbar puncture. It was heart breaking. We took turns holding him and trying to sleep with him in his bed and in the rocking chair.
Finally about 2:30 am he fell into a pretty good sleep and slept for about 6 hours. Josh and I each got about 2 hours of sleep. Everytime a doctor or nurse came in after this he was MAD! Josh joked that if Adam knew what flipping people off was, he would have been giving all the doctors the bird. He was so mad at them.
The next morning we waited for the MRI that they wanted to do to see if there was anything else going on with his brain. He wasn't allowed to eat or drink beginning at 6:00 am and that was awful for him. He asked over and over and over for food and water and I kept having to tell him no. Josh was gone for the morning to take care of some things at work and home.
We were scheduled for an MRI at 2:00 that afternoon but at 12:00 they came in and said they were ready for him! They wheeled him down on his bed and I waited with him while they ordered his sedatives. At this point when he again told me he was hungry I told him right after this he could eat and asked him what he wanted to have. He said "a cookie and chocolate milk! Two cookies and chocolate milk" I laughed (and knew that I have raised him well) and told him it was a done deal.
I held him while they put the medication into his IV (I didn't mention this earlier but he HATED having that IV in his hand. That also kept him up in the night.) He fell asleep on me and then I put him onto the bed for the MRI. That wasn't my favorite to see my little guy sedated and pale and still on a bed.
I left for the MRI (because you aren't allowed to stay) and waited upstairs in his room. I sat on the window sill and looked out at this pretty view:
Josh came back at this point and our sweet Bishop and his wife came to visit. It was nice to have visitors and distraction while he was away.
After about an hour they wheeled him back upstairs. He slept with the sedatives for a while (again-to me this was a blessing because he so desperately needed sleep). When he woke up we gave him a new toy:
He loves Daniel Tiger (and I bet we've watched like 50 episodes since this all started) and he loved this toy.
Grammy came to visit while he was still groggy so he had a hard time enjoying her visit but at least got to say hi.
Then he got to eat! We had a graham cracker for him and as soon as he saw it he reached out and yelled "cracker!" excitedly and stuffed it into his mouth:
At this point things started to go uphill at least a little. They took out his IV which thrilled him. We tried to feed him a little here and there. And just hung out and waited. Uncle Tim came to visit again and this time Adam really perked up and played for about an hour happily in his bed with Tim by him.
Tim brought him a Darth Vader mask and book:
Late that afternoon the head neurologist came in to show us the results of the MRI. They found swelling in the corpus collosum but that was to be expected and they didn't find any swelling any where else. This was good news. The neurologist said that we didn't need to stay at the hospital any longer in his opinion. This was also very good news.
I knew they wouldn't send us home that night, but to know we should be going home the next day was great. We just tried to keep him comfortable that night. He ate dinner happily (he got his cookie). He threw up dinner unhappily. But he slept very well that night.
Josh had to leave the hospital very early Wednesday morning to go to a Dr. appt of his own and then teach his class, so Adam and I hung out in his room. When the doctors and nurses mentioned going home he told them he didn't want to!
I ordered us both French Toast and I sat at the end of his bed and fed him and myself. I told him we were having a date. I asked him why he didn't smile for this picture and he said "I did." (I should mention that you can see that one of his eyes was droopy in these pictures. That seems to have been an effect of the brain swelling. His whole face was droopy but it's getting better.)
Then he barfed up his breakfast. I was just getting him undressed and was going to give him a bath across the hall for the first time (boy did he smell bad!) when I came across the team of Drs. in the hall coming to see him.
They had me go into the room and wait and then had me help him walk to them. He did it! He could walk a little (this was progress) although it scared him to death and maybe hurt him? I stood in the hall talking to the Drs. who were telling me we could go home soon. He didn't know the good news though, just that he had thrown up and was half naked on the way to the bath and now the Drs. were making him walk and he was sad, with his head on my shoulder.
Then down the hall came a nice lady carrying balloons from Adam's friend Zac!!! Oh how this cheered him up. I can't tell you how much a simple gesture like this from friends means. Look how sad and miserable he looks in this picture, but the balloons made him happy. (He was mostly very sleepy in this picture).
And then we sat and waited for them to give us the all clear to go home. Someone got playful while we waited:
Do you see that? He was smiling! For the first time all week!
The only problem with going home was that he had barfed on his last outfit and I had nothing to take him home in, so Josh had to drive back up (it's about an hour drive to this hospital) with new clothes. Right after Josh got there they let us go.
I thought he would fall asleep right after we got in the car but instead he grinned and talked to me half the way home. It was just so nice to see him happy. Then he fell asleep and we moved him to his bed once we were home and he slept all afternoon.
At that point I took a shower (hallelujah!) and a nap. Josh went to run the kids to various after school activities and then he was going to take a nap while I took over. But instead, while he was driving down the freeway his back tire blew out. Luckily he was able to put the spare on quickly and then headed straight to Big O for a new tire.
In the meantime, Josh's mom came over and stayed with sleeping Adam while I took her car to pick up Adam's prescription and Nathan from his art class...and I got rear ended. Seriously. Luckily it did no damage.
He's been home for two days and we can tell this is going to be a long road of recovery. He is on Zofran for nauseau and it helps and he is eating well. He naps a lot and sleeps about 13 hours at night. My two goals each day are for him to eat a lot and sleep a lot. I can't tell you how happy it makes my hear to see him smile:
He looks good there and is doing pretty well, but it really is going to be a long road. He can't sit up and certainly can't walk. He's very weak and still somewhat dizzy and his neck and heard hurt from the swelling. So while he's content and happy on the couch, he's got to be on the couch. And it's going to be a while before that changes I think.
I love him so much and I am so grateful that he is ok! The past week of caring for him has actually been very fulfilling. I feel like I am doing what I was born to do-to love and nurture and care for my child. It feels very right to slow down the pace of life and focus on him. This isn't a luxury that we can have all the time. At some point we have to see to errands and laundry and making dinner and paying bills and things, but for now I get to worry about those things less and about my sweetie more and I love it. (Remind me of that after I have been home bound for weeks)
Sunday night, when Adam was sick but we didn't know what was going on yet, I was talking to my parents on the phone and mentioned that I love my life-that I have everything I could ever want. My mom told me to knock on wood-that I shouldn't say that out loud or a trial would be coming. I told her I think the Lord wants us to recognize our blessings and be grateful. But the trial came anyway.
I will say it again, even now at the end of this week, I love my life. As always, this trial has only brought that into more clarity. The amount of love and support we have felt this week is amazing. I have a mother in law who took care of the kids for several days while we were in the hospital and has been helping out the rest of this week too. (And her husband was out of town too so she did this alone which is no easy task.) I have a best friend who checked in with me through calls and texts the whole week and let me know she cared and got me groceries and picked up kids from school and all that jazz. I have parents who prayed and checked in each day (of course!) and brothers who have come to visit and care for Adam. We have a Bishop and wife who drove a long drive to come visit us. We have friends who have brought presents and meals and have called and check in. A Relief Society present (friend from church) who has called and visited and made sure we are ok. The list could go on. I love my family, friends, neighborhood and my life. Thank you to everyone who has cared. And thank you to the Lord for taking care of my little one.