I wouldn't wish this on my worst enemy (meningitis)

I wanted to share my experience with everyone so that if anyone else has to go through this they will go in with more info than I did.  I asked on average 5 questions every time the Doctor walked through the door at the ER, hospital, Dr office and although I definitely don't feel as informed as a Doctor now, I do feel informed enough to share this.  Just a warning that some of the pictures and descriptions are pretty pitiful. 

My previous post into Max's odd ailment was written Wednesday October 24th.  He had a great day that day and was even able to go get his fall soccer pictures made with his team that afternoon.  All of his tests came back normal and we thought things were looking up.  Thursday around 3:00pm I got a call from his school that he was crying and complaining of his head hurting but didn't have a fever.  Well because he didn't have a fever I didn't jump right away to go get him, we already had proof there was nothing wrong (that we could see), and we thought he was just going through a tough time emotionally with some of the things he was dealing with at home and that he was just needing extra attention and didn't want to be at school.  School commented maybe he would feel better if we just brought him some Tylenol down there (since they can't give it to him) so I start to make the trip to the store when it dawned on me that he was supposed to go home with a friend (Grayson) and his Mom should be picking them up soon and maybe I could just get her to bring some Tylenol.  After setting that up and calling school back to let them know and to see if there was any improvement and found out there wasn't I decided to talk to him on the phone.  Max is very good at verbalizing his feelings for a 3 year old as that is what most of our car ride conversations consist of.  I thought telling him he would be going home with Grayson and that Miss Melissa would be bringing him some Tylenol would get the normal "Yayyyy!" reaction and it didn't, he was absolutely pitiful sounding saying "mommy, I still sick.  I need you.", so I decided it would be best for me to come get him.  After I picked him up around 4:00pm he started crying inconsolably to the point of hyperventilating where I had to pull over the car saying his head hurt and since I had just given him Tylenol we just rode home with him screaming and crying to give it time to kick in.  About 30-45 minutes went by and he was still inconsolable so after consulting with Mom we decided it was time to go to the ER.  Immediately after arriving there right at 5:00pm (we were the only ones in the waiting room at the time) and I picked up a clipboard to start filling out, he said his "throat was going to come out of his mouth" (how he verbalizes throwing up) and of course we didn't make it to the nearest trash can and he threw up all over the waiting room.  We have deducted this incident was due to the pain he was feeling since he didn't have any other incidents like this until several days later.  After getting in a room minutes later thus began the test and wait phase. 

During this time Max was having hysterical inconsolable crying fits and banters where he would just repeat over and over again "I just want to go home.  I just want to go home.  My head hurts."  This went on about an hour until he realized that was not going to work and he saw a Taco Bell commercial and we think he decided well if these assholes won't let me go home surely they won't let me starve so he yelled and cried for another hour "I just want a crunchy taco!  The crunchiest taco."  This gave a little comedic relief to a scary situation for days afterwards.  And dummy smart ass mommy said "don't worry babe, they are open late for the 4th meal, we can get one on the way home" (unknowing there wasn't going to be any going home).  This poor kid just wanted a crunchy taco.  So exhausting what felt like every option, the kid is obviously still in pain but was good a hiding it when the nurses and Doctors came in (I don't think he likes being seen like that) I started thinking about what my friend Joanne said a day or two previous about being worried her son had meningitis because of him complaining about his back and vomiting and because it seemed to be more prevalent this year.  Mom had her I-Pad so I had her look it up just as the nurse was coming in and saw him screaming in pain and immediately went and go get the Dr.  Without me saying anything she sat behind him pushing on his back and asking if it hurt back there and decided she thought it would be best to exhaust all possibilities and run a final test, a spinal tap.  Scary stuff, and I even weighed my option as far as do I really want to do this, do I really think it could be this.  He had a lot of the symptoms but this is very evasive.  I knew I wouldn't be able to leave not exhausting everything though so we went ahead and did it.  They had to put him in a conscience sedation with me talking to him to keep him calm while he went to La la land, (how they go to sleep is normally how they wake up, if they are calm, they will be calm, if they are agitated, they will be agitated) which was by far the most difficult thing I had to do the entire hospital stay.  Mom had to leave the room and I sat there bedside and watched his eyes dilate and stay open how I would imagine it would be to watch someone die.  I know, its terribly morbid but that's the only description I can give it.  It still haunts me.  After 15 long minutes in the waiting room I was able to come back and see him and much to mine and the nurses surprise he was wide awake and upset.  She said typically they will stay asleep the whole 45 minutes they have to lay still on their back after the procedure and seeing as it was now 12:00 am  I thought he would do so.  Not the case, so I'm back in the chair holding his hand again trying to calm him down to go back to sleep again except this time no sedation with his eyes closed (thankfully, don't think I could handle that again).  Lindsay had gotten back to the hospital by this time and since she works in a different department in the same hospital and he knows that he looked up at her and said "Cici, can you just make all this stop?" before he lost the fight and went back to sleep never letting go of his lovey during the entire procedure.

Shortly after I finally got him back to sleep the Doctor came back in and told us that after staying 4 hours past her shift and there was still 25 minutes left on his spinal fluid test she was going to go home but good news was that the spinal fluid was clear and typically it is cloudy with meningitis so she was going to prepare our release papers.  At this point we all were exhausted and ready to go home but frustrated again with no answers for a little boy in so much pain.  The nurse brought in the papers, I set them in my purse and sat it on the end of the bed and we just had to wait for the final say from the Doctor who took over for the other very sweet wonderful Doctor who stayed with us almost the whole time we were in the ER.  Shortly before 1:00am (I thought to myself uh oh, we missed 4th meal, hes going to be pissed) I see the also very sweet nurse who we bonded with during our long time there come in the room and start hooking up an IV bag.  At this point, I said "That can't be good" and my heart and gut just sank.  Of course the nurse can't give us any results or tell us anything but Lindsay started asking questions in a round about way and the sweet nurse's facial expressions said it all.  At that point I had to turn around and walk to the corner of the room and try to compose myself as tears started streaming down.  I was filled with confusion, relief to finally know what was wrong, angry at myself for doubting for a second that what he was feeling was not just an emotional reaction to a confusing time, scared for what was to come.  How long would we be here?  What am I going to do with a bouncing 3 year old in a hospital room?  When the other Doctor came in shortly after it became a blur.  I heard her say something about a week stay is average but if they find it to be bacterial could be upwards of several weeks.  Now we have to wait on the Doctor on call at his Pediatric office then they can get us a room.  She came in looking way better than myself at 2am but I could tell she had just rolled out of bed.  She studied the file for what seemed like 10 minutes although I'm sure it was only a couple.  When she came in she began to explain the process to us of how we find out what type of meningitis is it and how he got it.  Immediately she remarked that they were leaning toward viral which is the less severe, shorter stay mostly because bacterial causes a painful itchy rash which he didn't have and the virus that causes the viral kind was going around.  She said it would take 48 hours to get the results back from the spinal fluid test where they basically put it in a petri dish and wait to see if it grows bacteria on it (in which case its bacterial) but there was another blood test that has to be sent off that could come back as early as the next afternoon but was somewhat unlikely since we were getting on into the weekend, was possible we would have to wait until the spinal fluid test but if he was feeling better in that time we should be able to go home when they ruled out bacterial.  Max stayed asleep during all of this after they had forced us to wake him up from the sedation to check on him briefly (which was impossible by the way) and since now at 2:00 am we were just waiting on a room, Lindsay who had to be to work at 7:00am graciously said she would stay for me to go home to take one of the quickest showers I have ever taken (because lord knows when I would get a chance to do that again), collect a bag of clothes and personal belongings for me and him and toys and movies of course (all the time thinking, how the hell am I going to entertain a 3 year old in the hospital?).  Takes me 20 minutes to get home, 20 to shower and pack, and 20 to get back after forgetting to turn off several lights in the house so I arrive right at 3:00am.  The sweet nurse who had taken such good care of us had waited for me to get back to take him to a room so less than 10 minutes after I arrived we were headed up to room 406.  After finally getting settled and him back to sleep after being moved and having to explain to him that we could not go home for a while because we had to get him better (2nd hardest thing I had to do in the hospital) and they explained to me that we were in isolation because of the dangerous contagiousness of the disease if its bacterial and personnel would be entering with full sterilization gear, I finally got to my nice comfy (not!) couch and passed out around 4:00am.  The Pediatrician on call came in at 7:15am that morning much to mine and Max's chagrin where he further explained viral meningitis to me and how the meningitis itself is not contagious, the enterovirus that causes it is contagious and that it has been going around and causes the doubled over extreme stomach pain.  In order for it to turn into meningitis there has to be an underlying weakened immune system we deducted that was most likely caused by the virus he got one week previous to all of this that was a terribly nasty stomach bug I thought was the flu and had taken him to the Doctor for.  Mom came up shortly after that since she was so worried and couldn't sleep and the rest of the day Friday and Saturday was spent trying to keep him entertained (luckily had lots of good people help us with that), keeping the pain regulated coordinating lunches and dinners with great friends who helped (finally got that crunchy taco as soon as they opened the next day BTW),

updating people via text message and Facebook, and the most daunting task of taking him to the bathroom.  It wasn't bad enough this poor guy was hooked up to the IV stand we had to maneuver for him everywhere but he didn't even want to walk, his legs were weak and shaky, it would cause bad stomach pains and he would double over and scream, his back was sore so I had to carry him while Mimi followed with the IV stand and throw up bucket (hurt equally as much standing up and sitting down to pee so he would become nauseous).  And both days went back and forth between having good times and bad times, he would feel good one minute and the next he was in great pain which I found out from my favorite nurse during his stay that was normal with meningitis and they would even have good days and bad days much like his good day the Wednesday of soccer pics and bad day Thursday trip to the ER. 

Finally Sunday rolled around and since we still hadn't gotten the blood work sent to the Mayo Clinic to see if he tested positive for the enterovirus I was hoping to see what the bacterial test turned up.  The Doctor on call that day told me it had not grown bacteria yet but he really wanted to give it one more day and get those blood results back.  Ugh, frustrating, its been over 48 hours.  The Doctor encouraged us to encourage him to get up and walk more after he showed him how he could do it coming back from the bathroom (so pitifully weak and wobbly and bent over) so I went to go ask the nurse if we could walk the halls which she agreed to with a mask on since we still hadn't gotten the final word on it being viral.  Well by the time this all happened he wasn't having the mask and decided he would just walk to the couch.  Well, something switched in his brain and he threw the most massive Exorcist type fit I have ever seen, screaming at the top of his lungs, would scream at the nurses when they came in to check on us, hit me, tried to bite me, it was terrible (3rd hardest thing to deal with in the hospital).  The nurses were just picking up the phone to call the Doctor to come restrain him and sedate him when he finally calmed down because he wore himself out and fell asleep sitting up on the couch.  Well another symptom of meningitis is extreme confusion at times and that's for sure what sparked his outburst and he would say "I want to watch a movie!  I don't want to watch a movie!  I want to watch a movie!  I don't want to watch a movie!"  When the Doctor came by in the evening he told me his primary Doctor would be the Doctor on call Monday and would be the one making the rounds so that gave me some comfort for a new day.  Right as I was drifting off to sleep that night around 9:00pm the nurse came in and told me the test for enterovirus came back positive definitely finally declaring it the viral less severe type of meningitis.  After that I couldn't sleep for several more hours from adrenaline.  Finally his Doctor saw us around 8:00am Monday, Max woke up feeling better than any other day since we had been there, we knew it was viral, and were so excited to hear the words fall out of his mouth, well if you all are feeling up to it and get him around and moving more and pain is manageable you can go home later.  Then I was able to confirm with the nurse he was not in isolation anymore and could walk up and down the halls (with IV stand in tow).  We walked, we played, he went to the bathroom with no issues, just a little wobbly and hunched over like a drunk little old man and things went great so we decided we were ready to go home. 

After finally napping peacefully together in the comfort of my own bed, he woke up in a great mood again after being disoriented waking up half way between.  That should have been my first clue that we weren't in the clear because what proceeded was the absolute worst 24 hours of the entire virus.  He was in so much pain he was screaming at the top of his lungs, his head hurt, his tummy hurt, then came the vomiting.  Finally after talking to the on call nurse twice the Doctor called in some Tylenol with codeine to give him some relief to the only Pharmacy in town that was open at 11:00pm 25 miles away (thank the lord for Mimi).  Well he couldn't keep anything down but was able to at least keep it down long enough to get the drowsiness and us get some rest (not to much for Mimi who kept him company on the couch).  The next day was more of the same, extreme pain, still couldn't keep anything down including water and medicine so we got him back in to see the Doctor.  At this point we are thinking, what the hell did we do leaving the hospital yesterday?  After getting the okay from him that everything he was feeling was unfortunately normal and giving us some more medication that could potentially help including anti nausea, we went back home, drugged him up, and was finally able to give him a little relief for the remaining afternoon/evening.  Wednesday was Halloween and although I knew it wouldn't be possible to take him trick or treating with the previous day we had we woke up with new encouragement.  He had much more of a pep in his step that day and looked like he was actually feeling a lot better but we couldn't be sure, could it just be another good day after a bad day?  I'm happy to report that it was just him getting better.  The next day came and went and he was still doing good, then Saturday came, he hadn't had a fever in several days and throwing up for more than 36 hours so he got to go to his best friend's birthday party.  He still wakes up with some stiffness, soreness, and a little crankiness but he's back to the normal, fun, energetic little guy I know and love.  Okay...aside from the excess spoiledness caused mostly by his Mimi.  So I have to fix the fact that he now screams "Mommyyyyyy!!!!" throughout the whole house just to get me to cover him up with his blanket, turn the channel on the TV, or get him some more Cheese Its.  We are working on the "only yell if its an emergency, otherwise you need to get off your butt and come tell me what you need" but believe me, I would take that any day over what we went through.

Thanks to everyone who so graciously brought us food, toys, movies, visited, and asked about him.  We truly are surrounded by some great people.