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!