looking up

A beautiful morning I woke up to on Sunday. JD had seemed to be more at peace the night before, so I slept better. And he woke with a big smile! Such a joy to see again!!

Saw the doctor in the morning and we discussed the steroids. We could expect that JD would sleep less on these, so we were going to consider melatonin at night to help him sleep. Since the level of steroids was definitely going to keep him active. I was wondering how active, as he had spent the whole last week sleeping!

Within an hour of getting the steroids, little man was wanting to play! I loved it! It made my day. I grinned at hearing him want to play again!! His Aunt Sara had visited the day before, and brought him toys that he was excited to play with!

 I spent much less time sitting. The doctor was right. This was going to keep him up. But the best news was to come!

That afternoon, Bryan brought Kaitlyn to the hospital so I could spend some time with her, and he could see JD. I went in to the Ronald McDonald house room and he went to be with JD. It was great to spend a few minutes with Kaitlyn. We decided to do some video chatting. As I was sitting there, I thought about something, and we ended our video chat.

Bryan came back and I went to find JD's nurse. Since we knew what JD had was not contagious, could it be possible to let his brother and sister who had spent so much time without their brother, visit? And I was told, yes! So I quickly went and got Kaitlyn, and the smiles were huge!!

 After a short visit, as we didn't want to overwhelm JD or Kaitlyn, Bryan and Kaitlyn left. This day was great...or so I thought. JD had fallen asleep from the events of the day, so I got in my comfy pants, and relaxed.

About an hour after Bryan left, I saw his name on my phone.

"Hi baby!" I answered
"I rolled the jeep."
"That's not funny. what's up?"
"No seriously. I rolled a jeep. A driver hit us and the jeep rolled. We're ok."
"Where are you?"
"A block up from the hospital."

I flew out of the room to the nurses station. I needed to know someone would be with JD, as I needed to get to where my husband and baby girl were. JD was ok at the moment, but I hadn't heard or seen my baby girl. A nurse went in to be with him as he slept, and I ran from his room up the street.

Walking up on the accident site was horrific. I could barely breath. Because honestly, I'm not meant to run. I work out, but running always leaves me wheezing! I saw the jeep on it's side, firemen in the engine. Things everywhere.

"Where are they?" I shouted at a man. He just stared. "WHERE ARE THEY!! My husband and daughter. Where are they." He pointed to an ambulance and I ran. He told me to wait, but I didn't care. I went to the ambulance.

Thankfully, everyone was ok. It was just a precaution. They had to take Kaitlyn to the hospital due to her age. But the car seat did it's job. She complained of some ankle pain, and that was it. She was crying and clinging to her daddy when I got there. But she was ok. They both were ok. The EMT moved me to the front and we rode the block to the hospital's ER.

 Both of them lost their shoes in the accident. But that was in. A slight sprain to the Princess's ankle and a sprained collar bone for my husband. But no worries other wise. We found out later that it was a drunk driver that had hit them. My husband's jeep drove over the woman's car, before the axle broke and flipped. But that Jeep and my daughter's car seat saved those two.

Since we couldn't get a hold of anyone local. It ended up being a family sleep over in JD's room. I got up to his room before the other two did. He had woke up and was wondering where I was, but he calmed when he saw me.

Kaitlyn came up and chatted with JD for a little bit, and then everyone went to sleep.

For just once, I want a good day to remain a good day!! JD had such great morning, and to end the way it did was a bit upsetting. But my family is good again!

answers

That moment when you know things are about to change. One way or the other. Things couldn't keep going, and you have to step back. This was that moment!!

We woke up Saturday ready to get the MRI done. JD was still having difficulty with the swallowing and was very wheezy. I worried what that might do to my already weak little boy. But I sat around waiting and watching. Something had to change and help my little boy. What we were doing. All the rounds and massive amounts of antibiotics were doing nothing! I've seen him deteriorate day by day. We needed answers, something that might help him get better. Anything?!

No doctors doing their rounds in herd formation. The morning seemed quiet. Eerie! After all the rush and movement of the rest of the weak, this day seemed more calm! I had a little bit to think about, things in the light of a new day. I finally had Neurology involved. I finally had gotten my son some form of nutrition. It seemed we were moving in the right direction. Maybe, just maybe this was going to be the day of answers!

The orderly came up to take us down to the MRI. I lifted JD careful, like a newborn, and placed him gently on the bed to go down. Since it was the first time JD had left the room, and they still didn't know what was going on, they tried to put a mask on him. He freaked out. He hated it and complained that he couldn't breath with it. However, he was still very tired and in and out of it. As he had been for the last 4 days. So we gently laid it near him while he slept, and he didn't know. I listened and watched his labored breathing. I didn't like that! It worried me! With everything slowly getting worse, was he starting to lose the ability to breath. I stopped myself there. We were going to get answers today. Nothing was going to happen! I wouldn't let it!!

I walked along the bed side as he was being wheeled through the halls. He held my hand in his sleep. If I stepped away, he reached up for me. So I stayed. Being wheeled down into the radiology department, we went through the waiting room. The room where people who had come from their nice comfy homes were waiting for their turn. People stared. I felt almost a bit bubble like. It was Saturday, so there were not many people. But there still were some. Some wondering why this "patient" was being wheeling in ahead of their scheduled appointment. Wondering why that child was on the bed, and I'm sure questioning the mother standing beside his bed. She didn't look well rested or clean. The orderly got us down to the room and we waited for them to finish another MRI.

The doctor came to discuss with me all the precautions and what was going to happen. "We've noticed, and I've already discussed with his doctors, that John-Douglas appears really weak. I can hear that he is having some labored breathing." I started to shake. Where was he going?

"He's on his side right now?"
"Yes, he breathes easier and is in less pain on his side."
"We need to get him on his back for this."

He went through all the prep work that would be done. They were going to give him a sedative to help him sleep and then would move him to his back on the bed for the MRI. They wouldn't move him until we knew he was asleep. HOWEVER. There was a very big concern with his oxygen levels. He was so weak. There might come a point where they would have to intubate him. But he was going through this list as a precaution. Only a precaution!

I cried. The nurse hugged me. She said don't think of it like that. Realize it's only the precautions he must go through. Yes! That is all it is. He needs to tell me that. Just like I have to sign it's ok that I take certain meds that could make me sicker. I get it. I do!

But this is my baby!!

This is my baby I am allowing them to put to sleep. I am trusting them to keep a close eye. To keep him safe. I haven't left his side since this has all started, and I'm to just trust them?!?!

I signed.

We got JD into his pre-op room and started the medicine to help him sleep. I gave him a kiss, I told him I would be right there. I may have lied about the physical aspect, but my heart and soul never left that little boys side!

They watched his pressure. It appeared he started to sleep, so they went to put the oxygen mask on him. JD freaked out and started crying. So we waited longer. Finally he was asleep, the oxygen mask went on. I gave him a kiss and turned to leave and to wait. The technician, a very friendly gentleman, walked me out to the waiting room. Told me it was going to be at least 1 1/2 hours. So go find time for myself and handed me a box of tissues. I cried again. He rubbed my back. I asked him to make sure that my little man be ok, and that his lamb be by his side as soon as he was out. He promised me!

I watched him turn down the hall, and shut the outer doors and then through the glass the door to where my little man was. A lot of trust given!

It was 9am. I looked at the clock. I needed to be back no later than 10:30. I needed to do something other than pace the waiting room. So I decided to walk up the block to the CVS. I'd find a drink and a snack. Like I could eat. But it was doing something! I wandered the isles. Found things that JD would enjoy, picked out some snacks, and checked out.

 9:50am!

Well got some time killed. I slowly walked back to the hospital and went up to JD's room. It was so quiet in there. I looked at his empty bed. I cried! I allowed myself that time! I washed my face in the bathroom. JD wouldn't know!

Then I slowly walked back to the radiology department. It was like being a zombie. I sat down in the waiting room. 10:20am! He should be out soon! I checked with the receptionist to make sure nothing was said about him. But he was still in. So I sat and waited.

10:30 am....
10:45 am.... nervous leg starts bouncing
11 am.... started to pace. I checked up the hall, nothing. saw no one.

Panic... I could feel my heart hurting, throat closing.

11:15 am! I see the door open. I didn't even give him the time to fully come out. I saw the technician coming. I was at his side! He apologized! JD was still in. There were complications. My legs felt like they were going to give out.

"Complications?"

Things were behind because JD had a dramatic drop in stats when put on his back in the MRI. They had to pull him out and intubate him! So they still had another half hour or so more of imaging to do. But that he was ok now. He was stable and doing ok. He had saw the time and knew he had to come find me, for he had promised me news at 10:30. However, it was going to be longer to get him ready to go back. He would need to try and get off the vent, and would have to go to recovery to monitor him. And he was gone again.

Intubate! Stopped breathing!

So easily after saying that, he could say that JD was now doing OK. Ok, is done and back in his room. Not being on a breathing tube!

So I sat again. I mindlessly played on my phone, called family. Anything to keep me busy. The pacing started again at 12! I watched the technician come out and go back in with oxygen tanks.

Finally at 12:30, he was back. JD was done and was able to get weaned off the tube! But JD had an oxygen mask. He was wheeled out to me. I grabbed his hand. My baby! The anesthesiologist and the nurse maneuvered JD's bed through the halls to the recovery room. I was told he was doing very well. He explained it was what they expected. But it was good that JD could come off it so well. We walked through the doors of the recovery room, and they froze. Nurses looked like deer in headlights, frozen by what had just appeared in the recovery room door. Turns out that when requesting a room in recovery, they forgot to mention JD was on precautions. So the recovery team scrambled to get their gowns on. We moved into a private room.

Thankfully we didn't have to stay long! JD began waking up. "Mommy, I want a hamburger!"

Oh little man, as soon as you can!

Then he proceeded to tell me what he wanted. A hamburger with cheese, tomato, lettuce, ketchup and mustard... and don't forget the meat and 2 buns! He told me about his dreams while asleep of hamburgers and other food sources.

It was so great to hear him talk about food. Just maybe getting that deep sleep was what he needed. He seemed a bit brighter. The oxygen was slowly turned down as he began to breath room air again! And we were released to his room!

Once in his room, we talked! JD telling me again about his hamburger fantasy. While he was still awake, we decided to do video chat and allow his brother and sister have a little time. My husband was more than happy to see the little man after our morning fright.

But something was different. He seemed a bit brighter! His feeding tube was reconnected and he was getting nutrition again. So, we wait for answers! But didn't have to wait long!

Dr. Nora came in around 5. The MRI showed an inflammation in the spinal column and brain stem. So they decided to start a small dose of steroids. She told me that neurology would probably increase the amount, but that she didn't want to wait for the next morning to start something that would help.

Around 8pm, his neurologist came in. I knew I was going to like this guy more from that moment. He came in specifically to look over JD's results. He explained what was found. Then he thought better of it, and he took me out into the hall to show me the MRI on the computer. There was full inflammation of the spinal column, he also had an inflamed brain stem. We noticed some spots that were not fully developed, but not linked to what was going on. But he asked if JD was early, and I explained JD's birth history, and he said that explained it. But we went back to the inflammation. There was some more to the MRI, but he needed more time to review it.

So we know what was causing all the neurological symptoms! I was not wrong for pushing for the neurologist!

JD was going to go on a heavy duty round of IV steroids for 5 days starting on Sunday, and then we would start tapering him off with an oral round. I asked what he felt with this. He said we would see a lot of improvement.

By that night, JD was looking brighter. I don't know if it was just the small dose of steroids, or the food from the feeding tube, but I could see my little man turning a corner and things looking brighter.
He asked to come on my lap, so I carefully lifted him and put him on my lap. I was never so happy to cuddle with my little man!

what would be next

I was scared to start Friday. With seeing the steady decline every day, what more could be taken away from him. And how much longer till an answer was found. Something had to give! I just feared that it would be me or JD.

The morning rounds were a bit earlier. I was told we would see the neurologists again, and they had a plan. But we also should expect a visit from a speech pathologist. It would then be determined what we were going to do about JD's eating. He hadn't had anything of sustenance the entire week. His meals went without tasting. He would try, and spit it out because it wouldn't go down. The doctor said she wasn't worried about him not eating. She thought it could be that with him not feeling well, you sometimes just don't want to eat. But I tried to explain that it wasn't he didn't want to. He couldn't!

So the deciding factor of what we would do was left up to the finding of the speech pathologist. If she found he had no physical limitations limiting his ability to eat, then we would wait a bit longer to do something. But if she found any issues, then we would talk about placing a nasal feeding tube.

Which the idea of a speech pathologist in and of itself was another learning curve for me. I had to learn that speech deals with the larynx and swallow muscles as well. Well, wouldn't you know, I can learn something.

So we waited!

Mid-afternoon the neurology team were back. Another round of checks. He was showing more weakness on his left, even though his facial paralysis was on the right. It all was peculiar. They even found it odd that it seemed to switch sides. It was determined that they wanted to get an MRI scheduled for as soon as possible. It was going into the weekend, but it would get done by the next morning.

More tests! But maybe, just maybe, we are coming to the end of the tests. Just maybe, an answer is within. We can hope!

A short while later, the speech pathologist came in. She asked to raise JD's bed. He refused! We had slight behavior issues with this. With all that JD had going on, he never lost who he was cognitively and emotionally. Even though his body was regressing and losing it's ability to function. His temperament remained intact. JD had emotional lability, so these behavior issues and a desire to maintain his own equilibrium was by far the norm. A slight comfort to see he was still being himself. However it was upsetting when we were all stretching to find the best way to help him.

So the speech pathologist found another way to work with it. She asked if he would just take a sip of something while laying down. We had brought different foods and drinks into the hospital throughout the week to entice him. JD had a stockpile of gum drops, candy corn, sparkling juice and more. (It was always amusing to doctors and nurses that JD would sleep with his bag of gum drops, dreaming of the colors and flavor he so wanted to eat again.) So we mixed him up some juice to try. Though he would only try one very small sip.

We held our breath!!

The doctor listened, and the results were not what we hoped.

The muscles in JD's throat were not working correctly. She could hear them being very sluggish. She also could not hear his epiglottis closing over his wind pipe. His tongue was also not working correctly, and protruded out more then it should. Between that and his facial paralysis, he was not able to form a good seal and force the muscles to work correctly. She immediately called for him to be NPO, or no food by mouth. She feared he would choke on anything, especially liquids. She gave me some different tricks to work with him.  She also ordered for the nasal tube to be placed. She warned me that she wasn't to sure if the muscles would return soon or not, and to possibly look at longer termed feeding options, including a surgically placed feeding tube. But she'd come back after the weekend and she would do some more checks to see where we were at.

So the verdicts were in. JD couldn't swallow on his own. We had been right. AGAIN. Again, the doctor didn't listen when I mentioned something was needed. I am sure she had her reasons. But at some times a parents concerns should be addressed!!

The worst was yet to come. We had to place the feeding tube. JD was not in full agreement of this idea. And fought us. We explained the importance of the tube. He understood it, but he didn't like the placement. I sat with him through it. He cried through it, but we got it placed and taped. The feed was started. However, a couple hours after it began it was determined we had to shut it off for the night as JD was going for an MRI in the morning and he was going to need to be NPO (or tube) for the procedure.

Seeing a tube in your son is not what any mother wants to see! But it was a slight sign of comfort. For now I knew my son could finally get nutrition. Nutrition he was badly lacking since getting sick. How is a child expected to get better and battle whatever is attacking him, when he has no ability to build up his strength. Just maybe we were going to turn the corner!

steady decline

all he does is sleep

Thursday brought more questions than answers! However, by the middle of the day my concern with what was going on with my son wasn't relaxing. JD was having issues. He began losing the ability to swallow his own saliva. At first we thought it was just due to excessive drainage from the sinus infection that was noted at the ER on day one. However the drainage had stopped, but he still couldn't handle it.

We had begun using the wall suction during the night to help with the drainage and clear his airways. It was set so that I could suction him out when it seemed like he was having difficulties. Slowly we noticed the difficulties increasing. So I spent a lot of time helping him do it. However, by the middle of the afternoon, he had learned to handle it himself. I stood by, and watched him carefully but purposefully do it himself!

It was around this point that the doctors were making rounds. The group of students, doctors, and nurses were in. While they talked, I stood next to JD trying to help him, and answer questions. At one point something was asked about the need to use suction over the night, and I was paying attention to the doctors and not fully looking at JD.

I watched the head doctor watch JD closely. Her words after were some I can still hear resounding in my head.

"Let's get speech in to listen to him to make sure he is swallowing ok. Because at no point should a 5 year old know how to do that themselves! Or need to learn!"

Oh, you don't say!! I've only been bringing these things to your attention for a few days. But I'm just mom. I wanted to shout it at her! But where would that get me. No where.

Finally it was brought up that we still had no new results. Nothing was clear and we didn't know what was going on. All his tests were in, and everything, EVERYTHING, was negative!!! So what we knew was what it wasn't. It wasn't Lyme's. He tested Negative for the enterovirus-68 that everyone was concerned with. (He actually tested negative for all enteroviruses.) All major viruses were tested and everything came back negative. So it wasn't even some of the more obscure, including polio.

My heart was sinking. Something was making my son very VERY sick, and no one could figure it out. Not only that, he was steadily declining!! He was still exceptionally weak and tired. But he was also slowly losing the ability to control his body. First it was just holding weight, then it was holding his head up, and now we could see him losing the ability to swallow! His bed had to stay basically at a flat position, or he screamed in pain. When we tried to make him handle it, his body just slowly flopped to the sides, so he ended up in a very awkward position anyway. A position in which he couldn't correct himself from. So it became clear it was easier to let him keep his bed flat.

Doctor Nora addressed her concerns at what she witnessed the night before. It was asked if it could be pain related, as they originally thought. I had to step in!

"Listen. When you are in pain, or something hurts. You do everything in your power to keep that body part still. You become rigid and non-moving. JD is not doing that. Instead, he is not able to control the movement at all. His head just falls back and forth. He's floppy. Not rigid. IT IS NOT PAIN!!"

Doctor Nora agreed! And SHE advised we get Neurology involved. FINALLY!! Finally someone was listening. And it was set that they would call the team in. They didn't know when they would be around, either later that day, or the next. But they would call the team! They also would get speech around to figure out what was going on with JD and his swallow.

When the doctors left, I finally sat down. Finally feeling like we are getting somewhere. No we don't have answers. But finally they were listening to me. I had great hopes that Neurology could find something!

This whole time, JD was still in full isolation and for precautions. So the only people (other than his grandmother, dad, daddy and paternal grandparents) he had contact with were people coming in wearing yellow gowns, covers and masks. His brother and sister missed him terribly, along with their mom who had taken to living at their brother's bed. But it became obvious to JD who the doctors were. He would see them coming and just do their tests, mainly with his eyes closed.

When the nurses came in that afternoon, he saw the yellow and quickly shut his eyes tight. When asked to do something he pretended to sleep. I knew he was awake and kind of chuckled. There was my boy. He was in there! He knew he couldn't physically get out of the situation, but what he could do was manipulate it to suit him. And at that moment, he had no desire to do the Neuro check.

Finally that evening someone from Neurology came in. It was a small team of three. They did the general neuro checks that everyone else had been doing. The lead doctor sat on the bed next to JD watching it all. I had so many questions. I had spent those very lonely hours of the night looking up things online. I had found some different potential ideas. But I waited. I didn't want to bring them up. I wanted to know they were on this first. I'll be honest, I started looking at the possibility of a late onset of CP, MS and I found some newer ideas. ADEM or a newer syndrome called Acute Flaccid Paralysis. But I sat and waited.

The doctors talked and said they wanted to spend more time with his chart and would talk to me in the morning. They answered what few questions I had. The big being, do you see this being neurological in nature. And the resounding answer was, YES! What they couldn't answer is what it could or couldn't be, and if they should have gotten involved sooner.

But we were going in the right direction. Right?

We need Neurology

Wake up on Wednesday was similar to that of Tuesday. Flying off the couch at the sound of someone at my son's bed. It was Doctor Nora. She apologized for waking me. Just wanted to check on JD. I sighed, and said he whimpered and cried most of the night. She gave me a sad look. I asked if there was any way to change the med orders to be continuous until we can get his fever under control, and know whatever he was battling was gone. She said she would talk to the lead doctor. She said he seemed weaker by observation and tests. (At this point, JD was already able to do all the Neuro checks half asleep, after doing them every 4 hours.)

JD woke up the rest of the way and watched some tv. He was kind of out of it, and quickly fell back asleep. I felt that maybe it was best to just let him be. But when the doctors came in for their morning rounds, and JD still didn't wake up. I was a bit worried. I asked about any new results from testing, and was told they weren't in yet. I listened to their overview of him, watching from the sides. I didn't know what to think or do. It was determined we would continue on the Lyme's treatment. The thought was the results would be in shortly, and we'd be seeing a way out of the hospital in a couple days with a long term treatment. I again said I wanted neurology involved. Heck, we are doing neuro checks on him, right?! But I was told that was standard for all meningitis cases, getting Neurology involved was not.

"They don't know what is going on? They don't know how to help my baby!" - my mind was spinning!

Then I realized, if it is what they feel. Then just maybe we have an answer. It is fixable. We can make him comfortable. We came make him BETTER!

An hour later, JD woke up, rolled to the side and threw up all over himself. The nurses came in to help clean his bed. We helped JD sit up, and then to stand at the edge of the bed. He seemed very weak. So we got him a chair. As he sat down, his neck snapped back! HIS NECK SNAPPED BACK! No head should ever do that! The nurse went pale, and quickly helped me get the bed made. I asked is that normal for what we are going through, she said no.

Back in bed, JD went right back to sleep. An hour later, he woke up and said he had to pee. I tried to get him to the bathroom, and he couldn't stand up on his own. I pushed to get him to work with me, and he just couldn't do it. I called the nurse. She helped make him stand, and watched as his body collapsed under him and his head snap back. We both dropped to grab him. She immediately paged for a back up nurse. Said she needed someone in the room NOW. The second nurse came in, and the three of us did our best to hold JD up while his body went limp under us. All of this to get him to pee just at the edge of the bed.

My heart sank, I wanted to scream!!!

We get him back in bed and he quickly was back asleep. She tells me she's calling the doctor, NOW!!

My mom showed up shortly after. Being a support that I needed. I watched JD sleep. Knowing, something...SOMETHING ... serious was happening, and I couldn't do anything. He wasn't comfortable, he was in pain. He couldn't roll himself from side to side any longer. He was stuck. Only one thing seemed to be helping, he wanted ME. So laying with my baby I did. He pulled his head into my chest, and fell back asleep. This would be our new comfort for some time.

One of the floor doctors came in about an hour later to check in on what the nurses seen. I told her what I saw and felt, and the nurse did too. She said she felt that the pain was just too much for him to handle, and that is what was going on. I AGAIN requested a Neuro consult, but was told it wasn't time yet. But there was more news at this time.

JD DID NOT have Lyme's!!

I broke down. I cried. JD was asleep, he didn't see. I didn't know what to do. It seemed like my only net was just ripped out.

"What do we do now? Where do we go?"

The response. "We don't know." Just then, the lead doctor came in. She saw my face. She knew I knew! She wanted infectious Diseases to come in and look at him. I looked her in the eye and said "I want NEUROLOGY!" She said we'll see what ID feels and left. I looked at JD so small and fragile looking. I wasn't going to back down, not this time. Something needed to be found! He needed help. I was losing him. I could feel him getting weaker and losing parts of him he shouldn't deal with.

JD's other grandparents came in to visit. He was sleeping. So my mom forced me to step out. Get something to eat. What is food? I forgot. Every thing I did, caused me to fight back tears. How could I go? I gave him a kiss and walked out into the hall. We went down to the cafeteria and grabbed a sandwich. I may have had a bite of it, but I couldn't eat. My mom could sense the stress being away was causing, so we went back up.

To which I walked in on people over my son.  The doctors were addressing the paternal grandparents questions. I stood next to the bed, and I still wasn't addressed. At which time I stepped up and asked who and what was going on. The guy looked stunned at first. I found out he was part of Infectious Diseases. He asked the grandparents, again, what was the first symptoms. They looked to me. FINALLY the guy had to address me. He finally realized who I was. Yes. I was mom. I am the one he lives with. I'm the one who is his caregiver! Honestly not the best interaction with a doctor.

JD looked and asked me to come cuddle. Quick to address that one, I curled in as close as possible. The other grandparents left. They told me he slept most of their visit before leaving. I curled in and rested with my baby.

I got up and talked with my mom for a bit, watched JD and tried to make sense of everything. Nothing made sense! But I knew what I wanted, and I was getting hostile that they weren't listening. I wasn't going to be nice for much long. I wanted, and we needed, neurology to step in.

By around 7pm, we realized that JD hadn't used the bathroom since his 7am episode. Nurses got concerned, but JD said he couldn't do it. He cried. One of the older nurses came in and did some tough love. Told him he could do it from bed, but it must be done or else we would have to cath him. Knowing he could do it laying down, we got him to go. One of those moments in a mom's life where you never thought you'd be so happy to see your son pee!

We got him tucked in, and back to sleep he went for the night. I fought with this all night. My mom had left shortly after, but I knew she'd be back in the morning. I laid down next to him. Sleep didn't happen. Not at all! I got up and cried silently to myself in the bathroom, being sure to not wake him or let him see and know what I was feeling. When I was done, I returned to his bedside to listen to his shallow breathing.

The next day, I determined, I wasn't going to take no for an answer! I was going to get what I asked for. My son needed someone more than the resident doctor. This mommy was taking a stand!

Day one

Arriving at Children's at 2:30am was a whirlwind, honestly. We had to do all the registration. Everyone coming into JD's room was on precautions. They had to fully suit up. Talk about scaring an already traumatized 5 year old!

It was there they told me that they were concerned he had meningitis. Also not sure if it was bacterial or viral. The spinal fluid was clear from his spinal tap, but no real way to rule it out till it came back negative. So for the time being he was on full precautions. People coming in had to be gowned and masked. The part of this that didn't make sense, I was allowed to come and go from his room. I was able to wander the halls and go to the cafeteria and so forth. Shouldn't I have been a concern.

The good of the precautions... JD had a room to himself! At this point I'm still thinking we are only here for a couple of nights, right!?

After doing some neurological tests on him, meeting with the night doctors, getting an IV started, and all his vitals set. We are finally allowed to settle in for the night, or morning. It's close to 4am. I collapsed on the fold out chair that I moved as close to JD's bed as possible. He was already sound asleep, curled up with Lamby.

How was I to know it was going to be one of the shortest nights yet?

Jumping out of bed at 6am when I heard people coming it. The first people I met was a group of student doctors. And the whirlwind first day at Children's was begun. And boy do I mean a whirlwind! At 9am, the team of doctors came in to discuss JD's case together and with me. Many questions were asked, but I don't think anything ever was answered.

It was at this time we met one of JD's long lasting doctor friends, Dr. Nora. She was not the lead doctor on his case, but she was the most prevalent and always there doctor for him. The lead doctor said I shouldn't worry. He was textbook for Lyme's Disease. I'll be honest, that conversation took me by surprise. I said he tested negative. I keep a close eye on him. And no, he's never shown signs or the standard bullet. She said it didn't matter, he was most likely that. Since they felt it was that possible, and wanted to treat in case it was a bacterial infection, he was put on antibiotics.

The neurological checks done at this time, showed JD a bit wobbly on his feet. I honestly didn't think much of it at that point in time, as he didn't get much sleep. But we were able to get up and walk back and forth. He was able to make it to the bathroom himself, pulling along his IV with him.

At this time, I asked about having Neurology involved. I was told that it wasn't necessary, as they weren't too concerned with it, and it was obviously going to be Lyme's.

Throughout the day, JD was sitting up a bit in bed and playing video games. But as the day went on, I noticed it started losing interest and seemed weaker as time went on.

He was put on a liquid diet, as they were concerned with his mouth due to the droop, or Bells Palsy. So when lunch came, we had a little bit of the jello and liquid broth, but it had no flavor. So JD gave up. He laid down some more and rested. When the lead doctor came back that afternoon, she even came in without her precautions, stating that we know it's Lyme's so why bother. I was feeling very bad that this could have been prevented. But I still felt it couldn't be that. I again asked about the neurology. I said he seemed to be getting weaker. Her comment was "When you're sick, you rest, right? That's what he's doing." Than a comment that will ring in my ears for the rest of my life:

"If I'm not worried, you shouldn't be worried! I get paid to worry, you do not. If you worry more than me, then I have to pay you. I'm not ready to do that!" - just maybe a little more concern should have been had!

My mom came in to spend the day with me at the hospital. My husband stayed out of work to get Ptolemy to school and spend the day with Kaitlyn. That night he brought me a suitcase of clothes for JD and I, along with my computer and blankets. Little did I know, that little bit of home would be my welcomed companion for the next few weeks.

By the end of the day. JD seemed a lot weaker. He also complained more of pain. I asked to get him more pain meds. They said they were find giving it to him as needed.

A long day, a whirlwind of events. Little progress. I was told everything was a sit and wait game, as we had no where else to turn. All his tests were in waiting for news. So we sat it out for night two. I curled up next to my baby again, and tried to let the events go, but they never did.

The first leg of the journey

Everyone has a day they will remember for always. You know, the old speech by FDR. "This will be the day that will live in infamy." That is October 6th, 2014! That is the day that our normal, turned upside down. Honestly, going in, I didn't know how or which way it was all going to go!

JD had been feeling a tad under the weather over the weekend. The Friday before, Oct.3rd, JD went to school as usual. I noticed a slight cough that morning. I told his teacher about it, and asked her to keep an eye on it. If it got worse or disruptive to not hesitate to send him home! At pick up, she said she never even noticed it or heard it all day. At home, I noticed it a touch, but didn't think anything of it. Seriously, we all cough now and then. On Saturday, JD told me he felt warm. I took his temperature, and noticed it was a bit higher. But nothing serious. It was only 100.1. I gave him some extra cuddles, some medicine for the cough and told him colds do suck buddy. He should feel lucky he hasn't been sick before. (Yes, I actually told him to feel lucky. Do I regret those words looking back!) Though he was a bit under the weather, he still was playing and up and about. So, I figured nothing to worry about. Boy was I ever wrong!

Sunday he said he felt a bit sore. His legs hurt, his head hurt, and his muscles felt stiff. Again. I blamed a cold. Really, I had nothing else to think it could be, right. His fever was still lingering at 100, but nothing higher. I told him we would call his pediatrician the next day. And he had a ticket to stay home on Monday. He still played games with his brother, sister and I. He showed some more fatigue, but nothing I would worry about. Especially when fighting a cold.

Monday morning, I woke him up and we went about our morning. I called his pediatrician and we waited to hear back. That was until lunch. I decided that since everyone was tired, and a bit out of it, we would get a treat, and I got the three babies a happy meal. The boy toy that day was one of those robot kinex bugs, and the girl toy was a barbie toy. I know it seems like a strange thing to remember, but it is grilled into my brain. For the moment of doom was looming, and that fact is important.

When we got home, I handed out the boxes. I saw one girl toy, handed that box to my daughter and gave the boys the other two. Without looking. I went in the kitchen to get something and I heard the boys arguing. JD was crying and mad.

"That's my bug. I don't want the doll. I want the bug" - JD
"It's in my box" - Ptolemy
"JD just relax and I can get you the bug at the store later" - I called from the kitchen.

But the fighting continued. So I walked into the dining room to try and defuse the growing bomb I knew was coming. JD started getting angry again. And during that moment of anger, I watched in horror as the right side of his face stopped responding to his mind's cues. My son had facial paralysis on the right side.

Now, honestly there is only one thought in this mommy's mind at this time. "My son is having a stroke! Gods help me, my son is having a stroke!!"

I ushered the babies into the car, without a second thought of how long we were going to be, did I have something to entertain everyone, or any other thought. I needed to get him to the hospital and NOW!

The hospital was less then a 5 minute drive. We walk in and I tell the ER nurse that my son has facial drooping/paralysis. She told me to take a seat as there were others in line ahead of him. I did what she said, but I'll tell you I wanted to grab her and scream. Scream as loud as I could. "Did you not hear me...my son... my 5 year old son...has lost movement in his face!" 

I sat down looking around. What could be more important then my son right now. Was that guy having a heart attack? That girl with the cold, was she having an asthma attack. Now don't get me wrong, I understand there is a line of order. But at some point, someone should get priority, I would think.

But 3 people later, and about 30 minutes, it finally was our turn. We get into the room, the woman doesn't look at us to start. I explain why we are there. She finally looks at my son! She begins taking his vitals. She uses the head wand for his temperature and says he is actually cold. I tell her I don't believe that. If you touch him, he felt warm! So she gets out the old oral temp, and it reads 103.1! So much for that 97.5!

While in there, some guy comes to the window to complain that he needs to be seen. He fell off a roof. She tells him to take a seat, he had the nerve to say that his broken arm was more important than some sick kid. My eyes bulged, I told him off. Not proud, but I did. He's lucky a wall and glass window stood between us. No buddy, your broken arm is not more important than a 5 year old who is showing neurological issues!

smiling big for mommy, being brave!

And once all the information and registration is done, she disappears into the ER abyss. She comes back and tells us they have a room for us. The nurse comes in immediately and begins doing other vitals. She gives JD some tylenol to bring down his temperature. At this point he starts complaining he's hungry, and so is the other two. I tell him he can't eat until we see the doctor. And so we wait. I call my mom, I call my husband, I call JD's dad. All difficult calls. My mom lets me know she will come as soon as she gets out of work. My husband left work early to come get the other two and be with JD. My ex was at work, so I left a voicemail.

Three hours later, still no doctor. The nurse apologizes for how long it appears to be taking the doctor with all the other patients. Not really being as patient as I'd like to be at this point. She agrees that JD is important and what is going on is serious. She's trying to push the doctor along. She takes his temp and is happy to say it is down to 98.1. I say I don't believe it, as he felt warm again. I informed her the one in the office didn't work, can we try an oral. She gets the oral thermometer and it was 102.8. JD complained in front of her that he was hungry, and she said she would see if she could get him anything. Then he looked at me, sad eyes. "Mommy, I wish I brought lamby!" To which I sent a quick text to my husband, who showed up about 15 minutes later with that cute and cuddly blue lamb for that little boy!

Once the doctor finally came in, 6 hours later. (And I wish I was exaggerating!!) Things began to snowball. He immediately ordered a ton of tests. Blood work, chest x-ray, head CT echocardiogram. He seemed very on the ball about it, once he finally could spend time on my son. The chest x-ray came back clear. The head CT showed severe sinus infection. The doctor said maybe that is what caused the facial problem. He thought maybe it was just a bell's palsy. But he wanted to be sure. He called JD's pediatrician who said he wanted him seen at Children's to be sure he is ok. Children's decided they wanted a spinal tap to rule out meningitis. Watching him go through that was very tough. He did cry, and I held him as tight as I could to make sure he didn't move.

The doctor allowed him to have some popsicles to eat. As he didn't want food to interfere with any testing. Slowly things fell into place. We got a room at Albany Med's children's hospital. But we had to wait for it to be cleared and for an ambulance to come and take us. Finally at 1:30am, we headed on to our next leg of the journey. Who knew where it was going to take us.

JD on his first ambulance ride