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!
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