A Midnight RIde

On Thursday I was told that Dylan would be transferred to Loma Linda on Friday. This came as good news because his condition was not getting better despite the surgery and powerful antibiotics. Dennis came to relieve me from my long day at the hospital just in time for me to go to taekwando. He thought I needed the distraction and a way to get my frustrations out. He was right of course. It has never felt so good to kick and scream!

As soon as I walked in the door after taekwando the phone rang. Dennis told me that a bed had opened up at Loma Linda and that they were going to transfer him now, within the next 30 minutes. I wasn't packed, hadn't showered or slept. I quickly changed out of my gi and grabbed a toothbrush and some PJs, kissed my kids good-bye and raced back to the hospital.

When I arrived, my parents were already there. Dennis and Dad gave Dylan another blessing. It was absolutely beautiful and soothing to my ravaged soul. Dylan and I would need it to get through the next few days. How grateful I am for the priesthood. How grateful I am that my husband and my father carry the power of Jesus Christ to bless and heal my family. Looking back now, I wish I would have heeded my sister's advice, and had them give me a blessing that night too.

Soon the EMTs came with the gurney to take him down to the ambulance. It was decided that I would ride with Dylan in the ambulance, and and Dennis would go home. Dylan was rolled into the ambulance, and I climbed in after him. Dennis handed me my bags, then the doors were closed. As soon as we took off I realized Dennis had forgotten to give me the wi-fi card for his computer. That meant I'd have no internet access. Darn. Then we were off on a midnight ride - a ride that still hasn't ended in some ways.

It was a rough ride.

Despite all my mom talk, i.e. "Wow, Dylan, an ambulance. Isn't this cool! You brother are going to be so jealous that you got to ride in a real ambulance..." I knew and he knew that it wasn't that neat, but I had to say it, and he dutifully smiled and feigned slight excitement.

It wasn't neat at all. It was just bumpy. Poor Dylan felt every jolt and bump as we sped down the I10. I was amazed at how rough the ride is back in an ambulance. Can't they put better shocks on an ambulance, of all vehicles? Every bounce and jerk registered on poor Dylan's face. Sometimes, over a large bump he'd gasp. There is one spot of the freeway near Banning that is extremely rough. We might as well have been off-roading, the way we were bouncing around. As I watched, every bump and jolt was translated onto Dylan's sweet face, and then I felt the same expressions on my own face - my jaw tightened each time I saw his tighten.

It was a long ride. We were both so tired! It was just over an hour, but seemed much, much longer. The clock hit midnight as we bounced along. I had no idea where we were, could not look out the window for exit signs or any familiar landmarks on a road I had been down thousands of times. I felt like we were be transported to another world. I guess we were.

When we arrived I only got a glimpse of the round towers of Loma Linda Medical Center before we rolled Dylan though the big double doors of the basement, down long white corridors, and up an elevator to the 5th floor of the Children's Hospital. The ward is located in one of the towers, so it is round. The rooms are around the circle like spokes of a wheel, and the nurse station is the hub. There is an undersea motif. Whales and dolphins are sprinkled among the ominous hospital paraphernalia, in an attempt to make a scary place feel a bit playful. It wasn't working for me. I was scared.

We were both so tired, but it wasn't until 2am that he had been checked in, checked up, hooked up, and got to bet. I slept in a fold out chair next to his. Some doctors make early rounds so I was woken up at the crack of dawn by doctors who wanted to know everything about Dylan's history, etc. They kept popping in, so I didn't ever have a chance to get back to sleep. Between these frequent guests I got to look out the 5th story window. Except for few ugly buildings, the view looked very much like Italy with the rolling hills and tall cypress trees. I was thinking how grateful I was that I had this view, so I wouldn't be stuck looking at a hospital room all day, when the nurse came and informed me that we were moving to another room, because there were two isolation rooms in this ward, and a girl had to come in this room. They were transferring Dylan two doors down to a room with a 14 year old boy roommate. Guess who already had the window? He kept his curtain drawn on his half of the room, so I never got even a peak of the outside. What we got was two large windows on the double doors, so everyone walking by can look right into our room, and we have a spectacular view of the nurse station. Dylan has a curtain that fit just around his bed for his privacy. I have no such curtain for my sleeping chair, so anyone could just watch me sleep. Nice.

I asked if his brothers could visit. "Sure." That's great! "But they have to make an appointment. I'll see if there are any spots still available for this weekend." An appointment for a sibling visit? I supposed I should have made the appointment weeks ago. Silly me. Nice.

They brought in breakfast. Just one tray. "They don't feed the parents?" "No." Nice.

I picked up my cell phone to call my husband. "No cell phones." I have to disrobe and walk down the hallway before I can make a phone call. If the phone is ringing, it will always stop before I even got my robe off and got halfway out the door. No phones. Nice

I was told that the bathroom in the room was only for the patients, since they had to share it. Parents had to go down the hall and around the corner to use the bathroom. Nice. So when Dylan was settled I gathered all my stuff together and headed down to the bathroom for a much needed shower (remember, I hadn't showered after my workout, and was disgusting!) I found the bathroom. It was a single bathroom, and there was a line in the hall to use it. Nice. There is only one bathroom on the entire floor for all parents, visitors, and staff to use. When I finally got inside it was just a toilet and a sink. No shower. Nice. So I tried to wash up as best I could with a sink, and changed my clothes, knowing I had to make it quick because there was a line of folks waiting outside. I went back to the nurses' station to enquire about a shower. There was a shower provided for parents' convenience - conveniently located several floors down on another wing, oh, and you have to make an appointment. Excuse me? You have to make an appointment to take a shower... somewhere else? How is it that I have to make an appointment to have my kids visit or take a shower, but anyone can waltz into our room at anytime, day or night, to do anything, or we sit around for hours waiting for some test or procedure whenever they get around to us? Can they possibly do anything else to make things any harder on parents, especially those parents who are far away from home? I'll bet the shower is coin-op too, and that they provide no shampoo or towels. Of course I don't know because I couldn't get to a shower. I had been away too long just going to the bathroom and a few doctors were lined up in the room, waiting to grill me and poke a prod Dylan.

Dylan has 3 different teams of doctors: a pediatrics team, a pediatric orthopedist team, and a pediatric infectious disease team. That is like a dozen doctors and that is awesome because that is a dozen heads trying to figure out what is happening with my kid. At Eisenhower, He had three doctors: a pediatrician, an adult orthopedic surgeon, and an adult infectious disease doctor. They had all been very concerned and had tried their best, but obviously this is a much better situation for Dylan to be in. Unfortunately, it is also a very uncomfortable situation for Dylan to be in, because with a dozen doctors, there were a dozen examinations, some attended by half a dozen med. student observers (It got a little crowded!) Dylan is in isolation, that means everyone entering his room has to don a lovely yellow gown and gloves. But that didn't dissuade any of them from coming in. All the doctors' exams went something like this:

Dr: "Hi Dylan, I'm Doctor_____. How are you feeling today?"

Dylan: "OK"

Dr: "How old are you Dylan?"

Dylan: "nine"

Dr: "What grade are you in Dylan?"

Dylan: "4th"

Dr: "Dylan, do you mind if I take a look at your incision?"

Dylan: "OK"

Dr: "Does this hurt when I touch it."

Dylan (holding his breath): "yes"

Dr: "How about here?"

Dylan (wincing):"yes, yes"

Dr: "And here?"

Dylan (jerking away): "Ahw, oooh, ya!"

You get the picture.

After a while, Dylan caught on.

Dr: "Hi Dylan. I'm Dr. _____. How are you feeling today?"

Dylan: "OK. I'm nine and in the 4th grade." Then he'd dutifully uncover his hip for the doctor's poking pleasure.

After they were each done poking a prodding the nice little sick kid, the questioning for mom began. Did Dr. so-and-so come yet? I didn't remember - all the name tags are under the yellow gowns. When did the fever start? the leg pain? Had he had any injuries? any pets? any...? I told them all about the "spider bites" and these doctors actually listened to me and believed me when I told them about everything. Cool. Not one of those doctors told me they were just spider bites, so I knew we were in good hands. But still, the constant poking and prodding was difficult for my little man to take too many times. Difficult for mom to watch.

The fevers remained. The pain remained. Next came the tests. All the same tests that had been done at the other hospital, and some new ones to boot. Blood tests. (Every time I looked at Dylan he had a different color tape on his arm to hold on the cotton ball where someone had drawn blood.) X-rays. Ultrasounds. Etc.

Each time they had to take him for a test, they have to move him onto a gurney, and moving is pure hell, frankly, for that little kid. He can't move himself. It is so painful, that his body won't allow it. So nurses would have to lift him up by the sheet and slide him into the gurney. Sheer torture! The little boy who has always been so brave and never cried, screams out frantically as they moved him over just two feet, a look of pure panic on his face. This is too much. Too much for my mom heart to take! But I smile and kiss his burning forehead (the only spot that doesn't hurt, I think). "I right behind you, baby," I whisper as they wheel him out of the room for another bumpy ride.

Even though it was noon, and quite possibly light outside (I don't know for sure, since I never saw a window), it was my darkest hour, and a long, long, walk to who knows where. Walking behind my son, I knew he couldn't see me, and that the sound of the gurney on the cold tile would mask my sobbing, so I decided to cry. I looked at the top on his little head, and saw his hands grasp the blankets tightly as he went over a little bump, and I cried, and cried, and cried. What else could I do? I couldn't cry in front of him. I couldn't have a good cry in the shower, and there is no time for a good cry in the bathroom when people are lined up outside waiting. Where is a mother supposed to go to cry? Had anyone ever thought of that?

Tears rolled down my face as we slowly walked down one hallway and another. What is going on with this kid? Why can't they just figure it out? How much pain can one little body endure? How much pain can one mom endure? How long can a little body take fevers like this. He's been burning up for a week already! What can I do for him? What can anybody do? Someone find an answer! Look at that sweet little boy. Oh, how much I love him. Lord stop this, stop this please!

At somepoint the thoughts turned into prayers. They always do.

Somewhere in the back of my mind, I knew that there were so many people who loved Dylan, loved me, who were praying and fasting for us, who were bringing meals to my family, giving rides, or offering to do anything. I knew his name was in temples dotting the land, and that lots of prayers were being said on his behalf. But at that moment, that all seemed so far away. Faces passed by me as I walked. Lots of faces. Faces of strangers. Doctors and staff looked straight through me and my tears. They had seen a lot of tears. Parents saw my tears, and looked away quickly, to prevent their own upwellings, I imagine. I felt so exhausted, so alone. How does one possibly feel so lonely in a place so bustling with people? So many faces. The only face I recognized, the only face that mattered was the angel face of my little boy.

We were still on that midnight ride. When would this ever end?

We arrived at the ultrasound room, and I quickly wiped my tears and forced a smile. "Don't worry, honey. Ultrasounds don't hurt." It hurt.

Then the long trip back to the room, winding through the white hallway. I cried more. As we walked I saw something I had not seen through my blurry, tear-filled eyes, on my first pass through these hallways. There was art on the walls, large paintings. One of surgeons operating on a child. One of a doctor at his desk, trying to make a diagnosis. One of a mother sitting next to a sick child on a hospital bed. In each picture, Christ was standing behind them, whispering in their ears. Wow... Wow. Tears flowed back, and the images blurred quickly. as we passed. I knew the Lord was with these doctors, and the Lord was with us. Another picture had Christ surrounded by children in hospital gowns. "Suffer the children to come unto me." I didn't have to read the title. I knew what it was.

This gave me strength.

When we got back to the ward, I insisted that they didn't transfer Dylan back to his bed until they pumped him with pain medication. It was a long wait and crowded in the room with a bed and a gurney, while we waited for the orders to be sent to the pharmacy. I didn't care. I wouldn't let them move him without doing something to ease the pain.

Finally back in bed, he tried to sleep. But the peace was soon broken by the mystery boy on the other side of the curtain who turned on a movie, a rather loud movie, with a few too many profanities. I peaked over and explained to the teenager that his roommate was very sick, and hadn't had any sleep the night before. He turned down the volume a notch or two in compliance. Still, each dirty word made me flinch like the bumps on the road had made Dylan flinch. Plan B. I opened the computer and pulled up some classical music on iTunes, turned the volume down, and plugged in some headphones for Dylan to listen to. "Maybe this will help you sleep." It worked. He fell asleep, and I got to listen to the "bleep, bleepity, bleep." Nice.

Then came the doctors for another round of poking and prodding. There were a few more obscure questions. Has he done a lot of camping? Been to any third world countries? and the like. But mostly there were the possibilities. It could be this, or it could be that. The infection could be here, or it could be there, or it could be everywhere. Probably not, but just wanted to keep you informed. I wished they had just said "bleep, bleepity, bleep." I started crying again. They were kind enough not to notice and kept giving me prognoses, and possibilities and treatments. I was so tired and drained, and unable to compute what they were saying. They were giving me explanations, and all I really wanted was a hug. None were ever offered.

This was a long day. This was my worst day.

It was Dylan's worst day too. The doctors explained that blood work results showed that he had been getting steadily worse since day one. The antibiotics did not seem to be working. They were working to try to come up with a cocktail of different antibiotics to find something that would work. The good news is that his hip seeped to be getting better, and the infection was pretty much gone from his hip. The bad news was that the infection was still raging- somewhere, but just where, they were still trying to figure out. He had a large patch on his left side that was red, inflamed, and warm to the touch. Excruciating with even the slightest touch. Could be in the flesh. Could be in the muscle. Could be in the pelvic bone. The doctor pulled out a ballpoint pen and drew around the boundaries of the inflammation, to see if it grew bigger. Hopefully it doesn't because that would be very, very bad, apparently. Leaving me to those very happy thoughts, the doctors left. Dylan slept, and I turned my chair so my back was to him, just in case, and cried again.

At some point I looked up and saw two people outside the door window putting on yellow gowns. They were two faces I recognized! I can't tell you what it did for my soul to see a familiar face. They were the faces of my dear friends, the Muchejes, who used to be our martial arts instructors, but had moved to Riverside. They lit up my dark day in an instant. They brought me a large burrito, which also worked wonders for my mood, since up to this point I had had only a few of Dylan's leftover tater tots and carrot sticks. Dylan was so happy to see them to. We sat and visited. I talked and they listened as I unburdened my soul. What would we do without friends? It could have been the faces of any of my wonderful friends that could have pulled me out of my despair at that moment, I know, and so many of them would have hopped in a car and driven down to rescue me in a heartbeat had they known I needed it. I knew that. I just hadn't known that that was what I needed - a familiar face, a listening ear, a hug, a friend - until they arrived. Salvation had come in the form of a friend. God is good.

At one point I stepped out of the room to answer a phone call, and a nurse told me I had to go somewhere else to talk. I am ashamed to say that I competely lost it at that poor nurse who was just following policies handed to her from on high. "At the last hospital we had our own room, I could use the bathroom, I could shower. They brought me food. We had privacy. We were close to home and we had lots of visitors. Here you make me leave my kid to go to the bathroom, leave my kid to take a shower, leave my kid to eat, leave my kid to take a phone call! We are far from home. I am all the support system he has right now, and he is all I have. They tell me I can go to Ronald McDonald House, but that is 5 stories down and across the street. I can't do that. I CAN'T TO LEAVE HIM! " I was hysterical, obviously. More tears. Out in the open for all to see, and hear. Only this time there were arms around me. My friends were there in their yellow gowns, to bring me quickly to my senses. The nurse was sweet, and compassion was in her eyes. "I see what I can do." She smiled, and the scene was over.

Thank heaven for friends.

The Muchenjes, so good to spend their date night hanging out in a hospital, stayed for hours, until a gurney came to take Dylan away to do another MRI. It was 10pm. This time some good soul had the brilliand idea to use a board to transfer Dylan over to the gurney. It was smooth and much less painful. We said our good-bys to our friends as we rolled Dylan away , downstairs to the basement and a metal room where the MRI machines were. Once the technition had left the room, and Dylan was safely inside the tube, the tears started to flow again. This MRI was much quieter than the one at the other hospital, but it was plenty loud enough to mask my sobbing. It was the first real private time I had had since I had been here, and I took full advantage to let it all out. Who knows when I'd have another chance, right?

The MRI was hard on Dylan, as it became painful for him to stay in one position without movng for over an hour. But he was very brave, and stuck it out. Poor little guy.

When we returned to the room it was nearly midnight. A doctor was waiting for him. He ordered no food or water after midnight, just in case Dylan might need another surgery or some kind of procedure the next day. Happy Thoughts. When my head hit the pillow, was so glad that this day was over!

Yesterday was saturday. It was the weekend, so things were quieter in the hospital. This time only a half a dozen doctors came to poke and prod. We waited to see what they had decided about the test results. Dylan seemed tp be feeling a bit better today, and wanted to watch some movies. His fever was down, and I began to hope that we had turned a corner. Dennis and Mom were bringing the boys over - we had gotten a 2pm appointment, and we were both looking forward to that. The nurse brought in a tray for breakfast. She knew Dlyan had an order not to eat, but had ordered his tray anyway, so that I could have it. I was so grateful! I waited until he was sleeping to eat it. As the day wore on, he got hungrier and thristier. The doctors were still deciding what, if anything needed to be done.

The boys finally arrived just in time for their appointment, but the woman they made the appointment with never arrived. Of course. So the boys stood in the hallway and waited, and waited. Dylan could hear his brothers but coldn't see them (Except for Luke, the 2 year old, who took off through the ward so mom could chase him down.) They had to page the lady and it took her 30 minutes to get there. "We had an appointment" I told her. She ignored me. All she did was tell them to put on the yellow gowns and gloves. We had to make an appointment and wait in the hallway a half hour so she could tell them to wear yellow gowns before entering the room. Nice.

Even little Lukie had to wear a full size gown that he tripped all over. That didn't last very long. Derek kept trying to blow up his gloves while still on his hand. What an adventure. Maybe we should use this picture for our Christmas picture. Darn, we can't. Alex isn't in it. He was at a stake YM missionary activity. Dylan was so happy to see everybody again! I was happy that he seemed to be feeling better. Finally.

When the kids started to get a bit stir crazy in that tiny space, we had to leave. Dennis was relieving me, and I was taking the kids home. It was easier to leave knowing that Dylan was feeling better and hadn't had much of a fever all day. The worst was finally over. Yesterday really was the worst day. The antibiotics were finally working. It would be better. I kissed him goodbye, kissed my husband - I sure miss that man - and headed downstairs, into the lobby, and out into the warm sunlight. Nice. No, really. So Nice.

I needed a distraction, and I knew the perfect place just up the way, good old Tai Pan. Nothing lifts my spirits like a trip to TPT. The kids were indulgent. I called Dennis a few times while I was there. All was good. Afterwards a quick stop at Krispy Kreme, and then we stopped back at the hospital to deliver a few donuts to Dennis and Dylan, who was finally, at 6pm, given the OK to eat something. The antibiotics had seemed to be working, so the doctors had decided against surgery or a procedure and just wait and see.

We drove home and I was getting ready to crawl into bed when the phone rang. Dennis. Dylan's temperature had spiked up to 105.9! He had horrible pain in his other side, and he had been wisked away for more xrays and ultrasounds to try to determine the cause.

I started shaking uncontrolably. "I'm coming," I said. "You better not," he warned. "You are exhausted. You'll fall asleep in the road. I'm here. You need to sleep... for Dylan." What could I say? What could I do? He was right. But I just laid there and shook until he called again, and told me that Dylan was back, his temp was back down, thanks to a lot of ice, and he was feeling pretty good. I had to talk to Dylan. "Hi mom." He was perky. "I'm fine." I couldn't have hung up until I heard those words. I finally fell asleep, and fell hard, until I woke up at 3am and had to write this post.

Will this jolting midnight ride to who-know-where ever end?