Thursday, December 13, 2012
Sunday morning Jayson started having some severe tummy pains. He was constipated and I had to assist him in having a bowel movement. Even after two bowel movements he was still uncomfortable. He was crying, fussing, arching his back and bringing his legs into his tummy. I felt so helpless. I tried to give him a suppository in the afternoon and it didn't seem to help. I didn't think he was constipated anymore. I had vented him 8-10 times out his G-port throughout the day and I got a LOT of yellow frothy liquid out. Not normal at all. At 6 PM I turned off his feeds to give his tummy a break. Shortly after he stopped fussing and started playing. He was really uncomfortable. I emailed my Special Care pediatrician. I had no idea if she would read her email on a Sunday evening, but I really didn't know what to do. To my surprise, she emailed me back. She advised me to put him on Pedialyte overnight and give his tummy a rest after being constipated. Jayson seemed to tolerate the pedialyte just fine. He was able to relax and get some sleep.
Monday morning Jayson seemed to be doing better. He slept well and didn't seem to have any tummy pain. I changed out his pedialyte for his formula and began his feeds. He seemed to do pretty well for about three hours. Then he woke up in pain, crying, fussing, arching and bringing his legs in to his tummy. No bueno. I turned off the formula and ten minutes later he relaxed and went back to sleep. Clearly, I couldn't keep this up. I started his pedialyte again to keep him hydrated and called the pediatrician. I think he needed an xray of his tummy to check the tube. He also started rubbing his ear, so I thought it wouldn't hurt to have his left ear checked. We got into an appointment at 4:10 that afternoon. I started getting ready for the appointment two hours early knowing how long it would take me to get him and myself ready and in the car without any help. I felt strongly I needed to pack a hospital bag and prepare Jayson's diaper bag for a hospital stay. I hate when I have those feelings, but only once have I been wrong. Even thought I started preparing early, I was running about frantically trying to leave on time. In my frantic state, I dropped my iphone on the floor and the screen shattered. I couldn't help but shout a couple of bad words and wanted to sit on the floor and cry. I decided that it was time to call for help. If only my cell phone wasn't broken... I picked up my phone and got shards of glass in my hand. I tried dialing my neighbor, and it worked!!! My next door neighbor who came over and helped me load up the car and get Jayson settled in the car. I threw my phone in a plastic ziplock to protect me from the shards of glass and headed out the door. My sister met me at the doctor's office to help me get Jayson inside. The pediatrician gave him an exam and thought he looked pretty good. He said he doesn't know why he wasn't tolerating feeds, but he didn't think it was tube related. He recommended adding some formula to the pedialyte later that night and slowing transitioning his feeds back to formula. He also gave us a can of expensive EleCare formula that is sensitive on his tummy in the case that our plan doesn't work. I asked two more times about an xray. I really felt he needed an xray. The doctor suggested we try a couple of more things before getting an xray. He didn't see any reason for concern about the tube. I tried to put my parental instincts aside and trust my doctor. It seemed reasonable. On my way home, the GI doctor's nurse finally called me back and told me to try something similar. He told me to try 1/4 formula to 3/4 pedialyte for 12 hours, then 1/2 and 1/2 for 12 hours, then 3/4 formula and 1/4 pedialyte for 12 hours and then back to full formula feeds. At ten that night, Mike and I mixed 1/4 formula with 3/4 pedialyte. Jayson was moaning throughout the night and was bringing his legs up to his tummy, but he didn't wake up crying so I let the feeds keep running. We woke up at 3 am to Jayson's machine going off. We thought maybe his feeds ran out, but it said there was no flow. We checked for a kink in the tube, but found nothing. We discovered that Jayson's cream colored bed was now bright orange. His machine fed the bed for who knows how long. It was a sticky, nasty mess! Mike tried flushing the tube. Nothing moved. He worked at unclogging the tube for 20 minutes without success. I tried for another 20. Barely any water was getting through. I decided to just try running straight pedialyte. The mixture of milk and pedialyte was thick and somehow clogging the tube. We changed out the feeding bag again and ran the pedialyte. It seemed to go through even though the tube was still partially clogged. I spent the next hour and a half researching online trying to get an idea about what was going on.
Tuesday morning I woke up and started making calls to our pediatrician and GI doctors again. I googled all sorts of questions trying to see if anyone else had this problem. I posted questions to the online support groups for parents of special needs children I belonged to. I sent in requests to join new support groups. I called my nurse friend and emailed my Special Care doctor. I frantically searched for an idea about what was going on. Our pediatricians nurse returned my call and suggested we try the new formula. Some of my online friends suggested trying a very slow rate of watered down Similac. I thought it made more sense to try and see if Jayson would tolerate his own formula before switching his diet completely. I watered down his forumul and ran it at 25 mls per hour. It only took five minutes for him to show signs he wasn't going to tolerate it. After 15 minutes, he was hysterical. I shut off the feeds feeling very frustrated. I called my pediatrician's office back and asked for them to send in an order to Primary Children's for an xray. I really needed that x-ray. I started packing again, certain we weren't coming home. I decided to try some of the new formula with Jayson while I packed. To my surprise, he quickly calmed down and seemed to tolerate the food! I called our nanny Shelby who came to our rescue and helped get us ready and loaded for the hospital. We headed on our way to Primary's and went right to Radiology. He was called back and they took two abdominal xrays. I went to a waiting area and called my pediatrician's office to let them know the xray was taken and we would be waiting for a call about the results. About ten minutes later, our doctor's nurse called. "Well, Jayson's mom, he's really backed up, I guess he's constipated, and well, the tube isn't in the right place." I echoed, "The tube isn't in the right place?" "No." It was silent for a couple of seconds. I didn't know what to say. She said, "So I don't know what you are to do right now. Probably see somebody." Yeah. Probably. "We're still at Primary Children's. We'll just head right over to the ER. Thank you." I immediately got sooooo sick to my stomach. If the tube isn't in the right spot, that likely means that they'll choose to switch out his tube. Which we just learned can be risky and threatening at this point in time. I felt terrified for the first time in a long time. I called Mike and told him to leave work right away and come to the hospital.
We arrived at the ER and they got us back to a room quickly. The doctor pulled up the xrays and surprised us with her reaction. "His tube is in the right place. It seems he has a kink in his tube." I stood up and went to the computer. Sure enough, in the upper part of the intestine, there was a distinct kink. That explains why his feeds had a difficult time going through. This explains Jayson's discomfort. This explains my feeling that something was wrong with the tube. And this is much better news than the tube is in the wrong place. I was still worried about the solution they might come up with, but I suddenly felt more comforted and calm. I didn't feel this was going to be the crisis I feared. I informed her of what my pediatrician told me and she pulled up the official report. My pediatrician must have misunderstood. There was a kink, and his fluids were moving slow through his intestines due to the kink. That was likely causing his discomfort. We waited for a ridiculously long time to hear our options, and then the decision of the team. Initially the resident returned to inform us that our two options are to try and pull part of the tube out to remove the kink, or to replace the entire tube. They were calling the GI doctor on call to get his thoughts. I knew we could just try to pull it out and unkink it. I didn't feel they would need to replace the tube. I didn't feel as fearful. Sure enough, that was their decision. Let's try and pull it out 3 centimeters.
We weren't prepared for what happened next. The nurse said, "okay, let's do this. I've never seen a tube like this before. It looks like it's taped together. Let's have you start working on taking the tape off and then we'll have Dr. Dad pull the tube out three centimeters." What? Really? We're doing it right here? Not in radiology in case something goes wrong? Without a doctor? Mike is going to do it? Mike used scissors and his steady hands for fifteen minutes to take the tape off of the tube. Yes, his feeding tube is taped together. Quality work. I assisted Mike where I could, but I held Jayson steady so he didn't pull on the tube. While Mike was hard at work, a couple of thoughts came to mind. Why isn't the nurse or a medical official doing this? Because they don't know how. They don't want the responsibility (or liability) or pulling the tube completely out or messing something up. They hadn't seen this tube before and didn't even know where to begin. That is so reassuring. We are in the hospital working on our own son. I wondered if we were being billed for a procedure we were doing on our own. That would be amusing. I wondered how Mike was feeling inside. I think he felt a little nervous, but almost relieved that this delicate situation with the tube was in his hands instead of these clueless nurses and doctors. I was right. He whispered, "I'm kind of glad I'm doing this instead of them." I could tell we must have been having similar thoughts. There were layers of tape, two different types of tape. Just as Mike got the cap to the port free, he tried to open it to find that there were layers of tape on the inside of the cap around the tube as well. It might be jimmyrigged, but at least it was done up right! haha After another few minutes it seemed the tube might be free to move. The nurse said 3 centimeters. There were numbers on the tube, but it was clear they were not measurements in centimeters. The nurse tried to look up information about the tube on the internet to tell us out to measure 3 centimeters, while Mike figured out the system himself and explained it to her. She said, "Oh, you're probably right. So you're going to want to move it to the dot. No, the number. No, the dot after the number. Hmmm... well, let's just move two numbers. Hopefully that works." I just put my trust in Mike because this girl was cute but completely clueless. I felt relieved that Mike was in control. He slowly pulled out the tube, little by little, until he reached the goal number on the tube. I helped Mike TAPE the tube back in place. We used one type and one layer at this moment to see if the kink was gone before adding more security to the tube. The nurse commended Mike and I gave him a big smile. I was so proud of him. The nurse said, "Well now we're going to turn on his feeds at full rate and see how he tolerates them. Then you can go home." Hmmm... how will we know if the kink is gone? Mike was feeling pretty good about himself. He started going through cupboards and drawers. looking for medical supplies we needed to get him ready to go home, since Mike was now Dr. West. He started ready medical facts that were pulled up on the computer screen in his professional doctor voice. We entertained ourselves for a long period of time and ate some cafeteria food in the room. At this time, Jayson seemed happy, playful and content. I hadn't seen this all day. Finally a doctor came in to say it seems like he's tolerating feeds and we can go home. They would start filling out the discharge paperwork. I asked her if we were going to do another xray to confirm the kink is out. She said not at this time. We were to go home and see how he does, and if he has anymore problems we can come back. Awesome. I felt like we'd probably be back. I asked her if there was anything else we could do to test and see if we think the kink is out, since his machine would run for a while with a kink before it would refuse to run. She said nothing came to mind and left. Suddenly, I realized that it is apparent that these ER doctors and nurses have no clue about GJ tubes, or tubes in general. I was the expert. I could figure out a way. I realized I could try flushing to tube. If it goes easily and without resistance that would be a great improvement. That would lead me to believe the kink was gone. Mike checked the cupboards and drawers as Dr. West for some sterile water and we flushed his tube. Awesomeness!!! It flushed so easily. I felt much better. I once again arrived to the point mentally that I usually do while in the hospital-- I was ready to go home. It was clear that Mike and I knew more about Jayson, his conditions and his issues than the medical professionals. I just wanted to go home before they did something to screw it up. We signed our paperwork, and we hit the road. My nanny Shelby rode with me, and we followed Mike home.
While on the freeway about to exit, Shelby realized Jayson's head was completely forward and he was asleep in his carseat in the backstreet. How strange. That's difficult for him to do with his neck control and quite an uncomfortable position for him to fall asleep in. I asked her to lay his head back to support his neck and open up his airway. Shortly after, Jayson's monitor began beeping. More often than not, it goes off because it's not a good reading. The signal was good and Jayson's oxygen levels were in the 80's. Sometimes he obstructs while breathing, and when his airway opens up his oxygen goes back up. Nope. I quickly cut off a car and pulled off into a closed car shop parking lot. Shelby and I hopped out of the car and went in the backseat to check on him. He was breathing loudly, but his airway was open. I couldn't tell why he wasn't getting oxygen. I checked his tank. It was a little low, but there was plenty to get us home. I turned up the oxygen and stimulated him. He stirred a little bit, opened his eyes, closed them again and his oxygen went back up to the 90's. Shelby and I got back into the car, and I was about to pull out when the alarm went off again. It was in the 70's. Good signal. Bad sign. His O2 levels tanked fast. Shelby and I jumped out of the car super fast and my heart was racing. I carried the monitor into the back seat and watched it drop. 64. Flashing. Beeping. Jayson was pale, unrepsonsive. Not breathing. I shook his belly. Shelby rubbed his legs and grabbed his toes. We shouted his name. Shelby smacked the bottom of his feet. I lifted up his head, which fell forward. He was unconcious. I pinched his cheeks and looked at the monitor. 61. Flashing. Beeping. I was yelling now, begging Jayson not to make me breath for him. He wasn't listening to me. He wasn't there. I got his seat belt off as quickly as I could. It was difficult because he was so limp and floppy. I kept watching his lips. I wanted them to open. I wanted them to move. I watched his nostrils. I hoped he would suddenly take a deep breath. I started pulling him out of his carseat to begin CPR when I felt an abdominal muscle tighten and I heard a moan. Still no breaths. I rubbed his shoulders then held his face and yelled at him to breathe. He started crying. Still no breaths in, but I was feeling relieved. He gasped and took two large breaths in and cried. The most beautiful sound in the world. He was crying, breathing, living. My baby boy was alive. Floods of memories filled my mind and I can't remember the first minutes following the episode. I saw myself back in our bedroom, holding my floppy baby's body screaming to the ENTs on the phone to hurry. I remembered laying my baby on the floor ready to give him CPR. I remember the fear, the terror, the feeling that my heart had stopped. I just relived my worst nightmare. At some point, I snapped out of it. Shelby was on the phone with Mike the entire time. I was scared for him. I told him to come to our parking lot right away. I called my nurse friend. I assumed we would be going back to the hospital, but he was breathing now. We were just there. Would there be a point in going back. Jayson had stopped crying and looked like he was in a daze. Tired, confused. In shock, maybe. My nurse friend didn't answer, but she sent me a text. I text her what happened and she said we definitely needed to go back. Mike arrived and he checked things out. The monitor was on and functioning. The oxygen was running. He switched out the tank for a new one so we'd be sure to have enough oxygen to get back to the hospital.
We analyzed the situation and realized that Shelby needed to go home, and Mike and I needed to be in the same car so I could ride in the backseat with Jayson. So Shelby rode in the back with Jayson while I dropped her off, and we stopped by our house to transfer everything to Mike's car. Mike sped his racecar to the hospital and we rushed Jayson inside. In the meantime, Jayson just sat in his carseat, in a daze. His oxygen levels and heart rate were stable. The nurse checked us in and we sat in the waiting room.... for 30 minutes. I was shocked that a child can quit breathing yet it's not seen as an urgent enough problem to avoid a long waiting room visit. We finally got into a room and I relayed the terrifying experience four or five times to four or five different medical personnel. They got us up to a room surprisingly fast where we would stay the night for observation and come up with a plan in the morning. In the room I spoke with a doctor about my concern for this being related to his vertebrae issue. Our neurosurgeon told us that if his breathing or swallowing ever got worse, we would need an MRI right away. Jayson had his head forward, and then shortly after moving it back he had his apnea episode. I felt like they might have been related. He sent in a request for neurosurgery to come by in the morning.
Wednesday morning, bright and early, a neurosurgery resident came by. He got my whole story and was concerned. He said we would need to get some more flex xrays of his neck and we could compare them with the xrays from October. He didn't think they would look vastly different, but if there was a difference it would tell us we need to look into an MRI. We got the xrays in the morning and waited for results all day long. No word. FInally, at 5 o'clock our nurse told us she received a call saying the xrays were different enough that Jayson needed an MRI. Dang. That means anesthesia, right after a life threatening apnea event. I don't like the idea of that, but it was what I really felt would happen. So given that information we knew Mike couldn't miss a whole additional day of work, so I needed to go home with him and get my car. And a shower. I won't mention how many days I had gone without one. Our nurse for the day coincidentally ended up being someone from our stake I had met at church a few weeks prior. I never ever leave Jayson at the hospital, but I trusted her to care for Jayson, and I called my sister and asked her to come stay with him when she could while I left.
I was literally shaking and struggling to breath from the panic attack I brought on just by leaving Jayson. It felt wrong. I couldn't handle being at home without him. I saw his things everywhere and I started to pray that I would never have to come home for good without my baby. The pain would consume and destroy me. That was for certain. I couldn't even enjoy my shower or my meal. I had a big day at work planned for Thursday that I had to get covered, and I had to create a couple of documents and send some emails. Finally, I was able to head back to the hospital. I felt so calm walking into the building doors of the hospital realizing I was once again in the same building as my sweet baby. My sister said Jayson was active while I was gone and they had a lot of fun playing. He had some strange activity, similar to his seizure-like activity, that I had also seen earlier that day. I spent the later evening playing and cuddling with my little man. His strange activity developed into seizures around 10. Nurses came in to observe him and were debating whether or not they should call in a neurologist. They were mild and not incredibly noticeable. He was in a daze, bobbing his head, his eyes deviated, and he wouldn't blink. He had some tightening of muscles as well, with some fussing. He had short clusters that lasted for about a half hour. Then he was drained and exhausted and fell right asleep. He had a rough nights with episodes. He kept jerking and waking himself up. He woke up crying and screaming a couple of times due to the fear of waking up after a severe jerk. I was awake until about 3:30 rocking and comforting him back to sleep after his episodes. Finally I was able to get a couple of hours of sleep.
On Thursday Mike had to work, and I was at the hospital on my own. Jayson slept a lot of the time and I tried to keep my mind occupied by writing this journal entry and watching my favorite show- Boy Meets World. The BMW seasons have become my hospital companion. Jayson had a couple of his strange new episodes while awake that I got on tape. I got him a birthday balloon and staring and playing with it even brought them on. His MRI was set for 3 PM, but they were ready for us at 2:40. I was super emotional at the time he was getting transferred to a new crib. I was nervous about the anesthesia, and I was even more worried about the news we would get after the MRI. I had a feeling it would be bad.
I went downstairs with him and held his hand until he fell asleep. His poor face was covered in sparkles from my lipgloss because I couldn't help but drown him in kisses. I put on a courageous face and went upstairs to wait in the waiting room. The MRI took a little longer than expected which made me a little uneasy. Finally I could go back and see him. I was relieved to see the smile that appeared on his face when he saw me. He didn't require much anesthesia for the MRI so he was awake and alert. Jayse was pretty happy as we resettled into our room, and he and I spent some time playing. I tried to hold on and treasure those last few moments before knowing the truth, the results. A resident doctor came in with the news. Brief. Without explanation. Cut like a thousand knives. "This MRI was significantly worse than his last MRI. Things are really tight around his spinal cord and brain stem. There isn't a lot of spinal fluid getting through. You definitely won't be going home. The neurosurgeon will be by tomorrow to talk with you about your options." And then she left me alone, with my thoughts, fears and worries. I felt consumed in my emotions for a moment, and my head was spinning. I forced myself to think about my true feelings. I already knew this, deep in my heart. I know the heavenly spirit was telling me it would be okay, and comforting me. We were meant to get admitted and find out this information. It probably saved my son's life.
I called Mike and had to be the one to share this awful news with him while he worked late. I wanted so badly to hug him and cry. I know he felt the same. A neurosurgery resident came by and relayed the same information. He said this does not constitute an immediate emergency to be taken care of today or even tomorrow. But we needed to address this problem sooner rather than later. He asked me if I had questions and I just laughed. I told him my head is flooded with them, but I need to sort through them and I can ask our neurosurgeon tomorrow. He asked me if there were I couple I could ask, and he could try and address them. I asked him about the affect on Jayson's brain if the spinal fluid is not freely passing. He mentioned the condition 'hydrocephalus' which is fluid on the brain. Oh no. He said that Jayson looks great right this moment, but his life is threatened by this constriction on the brain. Our doctor is still trying to think of our options and the risks involved with doing something right away and the risks associated with waiting a little longer until he's a little bigger. He several times referred to Jayson as a "Chiari kid" and I recognized that term from my personal research. I asked if a collar would help out at all, and he said it would help stabilize the C1 vertebrae, but it wouldn't help with the tightening. He explained that the pressure being put on the brain is causing his swallowing and breathing issues, and maybe even the seizure activity. I thanked him and he left.
That's where we are now. I'm in a bad place. I know bad news, but not enough information to appropriately process it. I'm just sitting here, rocking my baby and letting the tears flow freely onto his curly head. I know he feels my fear, and I want so much to be able to hide it. But tonight I can't. Jayson can read my soul. We have such a special bond. In my moment of weakness, he sat up straight, lifted up his unstable neck, opened his mouth and threw his face at me. My face is now moist from tears and baby kisses. He told me it will be all be okay.
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