Hell and Back

Hell and Back... I've heard that phrase a lot lately. Many people have used those words to explain what we've been through. Perhaps it's true. Perhaps Mike and I have been to hell and back. But if so, then I know God will enter the gates of hell to comfort his children. He never left us as we walked through the valley of the shadow of death, and he placed many angels in our path to care for our dear son and to comfort us as his parents.

So far, our story is a trilogy of three hospital stays. Here is the diary of the first:

Wednesday, February 8, 2012

I dropped Jayson off at day care Wednesday, February 8th and there were big signs on the door saying, "RSV confirmed!". I said to the manager, "Please tell me it wasn't in the infant room." She told me the confirmed case was in the infants’ room, and he was at day care with Jayson all day on Monday. The little boy wasn't showing any symptoms of illness, and it was discovered at his 4 month checkup. I had an important meeting and didn't know whether I should leave my baby there or not. She told me about all of the precautions they took to clean everything. I decided to leave Jayson, but picked him up early just a couple of hours later.

Thursday, February 9, 2012

Doc visit #1-- I scheduled an appointment with the doctor the following day, just to be safe. Jayson was still sick with a mild cold after 3 weeks, and I was concerned it might be worse. The doc checked him out and said he was just fine. I pushed the whole RSV thing out of my mind.

Friday, February 10, 2012

Mike and I had plans with our friends in Layton Friday night. Jayson was running a really low fever and we almost didn't go, but he wasn't acting sick. On our way there, he began coughing and sneezing. As the night progressed, Jayson was getting really sick. He was super congested and had a hard time breathing over night.

Saturday, February 11, 2012

Doc visit #2--I got him back into the doctor the next morning. The doc said he was showing some mild symptoms of RSV, but his oxygen levels were good. They did a test for RSV and sent him for an X-ray to check for pneumonia. I would get the results of the RSV test on Monday and the X-ray possibly the following day. The doctor had to leave quickly without answering my many questions because the baby in the room next to us had RSV bad and had to immediately go to Primary Children's. I did get a chance to ask what I do if he seems to be getting worse, and the nurse said to take him to the hospital. I began to feel scared and worried. I had no idea what was coming...

We got home from the doctor's and got a phone call a couple of hours later from a technician. Jayson had pneumonia. They called in a prescription and Mike came home from work early. Jayson was getting worse by the minute. I asked my mom to come stay the weekend. I needed someone to help me watch him and decide when and if he needed to go to the hospital. It was seriously the longest day and night of my life. We sat and watched my baby breathe in and out... for hours... trying to decide how bad was too bad. I got on Youtube and watched videos on RSV and CPR, just in case. We took turns sleeping and watching him overnight, although neither of us really slept. By morning, we decided things were probably bad enough.

Sunday, February 12, 2012

Doc visit #3-- I got the idea to go to Instacare first. I called them and they said they could check his oxygen levels, without us even seeing a doctor. They were expecting us when we walked in. The nurse instantly began looking very worried and somewhat frantic when she saw Jayson. She called for backup, and two other nurses came out to the lobby. She took his oxygen levels with the monitor, and one nurse left to make accommodations for us in a room. Another nurse said, "Okay honey, he's going to need some help in a hospital for a couple of days. He's in rough shape." His oxygen levels were at 71%.

The next hour was a blur. The doctor's office basically shut down. We had all nurses and doctors in and out, hooking Jayson up to all sorts of machines and oxygen. He was so upset and scared. A doctor informed us we would need to go to the hospital via ambulance because Jayson desperately needed the oxygen. He asked us if we wanted to go to Riverton Hospital or Primary Childrens. Riverton was closer and sounded less serious, so we chose Riverton.

Riverton Hospital

As we got settled in at Riverton, the test results came back positive for RSV. The doctor told us that we were "On Watch" for the next 8 hours, and would probably go home later that night. As much as I wanted to be back at home with my baby, I did not want to sit up and watch him breathe for another night and be back the next day. My family and dear friends, the Faulkners, harassed the staff enough to convince them to let us stay. I love them. Mike and I cuddled on the single fold out bed and were thankful that Jayson was getting the help that he needed.

Monday, February 13, 2012 – Tuesday, February 14, 2012

It's good we didn't get sent home, because the doctor the next day told us we would be there for at least a couple of days. Jayson was still in the beginning stages of the illness. He was working incredibly hard to breathe, and had to be suctioned often to get the mucous out of his airway and lungs. Mike and I celebrated Valentine's Day together in the hospital and really made the most of the situation. Jayson was sick, but I was still able to feed him, cuddle him, and love on him. Things didn't seem so scary.

Wednesday, February 15, 2012

Wednesday we were told we could go home. Jayson was doing great. We were going to go home with 1/2 liters of oxygen. In fact, we had discharge papers signed and the oxygen rented when I got a feeling we weren't supposed to go just yet. I took one last look at him, and it seemed to me like he was doing a little worse. I called in a nurse. She agreed. The nurse called the doctor, and she agreed. We weren't going home yet. The doctor said she’d check him often and there was the possibility of a late discharge.

Each hour, Jayson seemed to be doing worse. The hope of a late discharge disappeared, and I began to get scared and worried again. My favorite doctor ended her shift, but assured me she'd be here in the morning to check on him again. My least favorite doctor was working that night. We hadn't seen him all night, until I requested he come see Jayson around 10:00 PM. He had his oxygen levels turned up and called for more frequent suctioning. I laid Jayson down for bed around midnight, knowing the respiratory therapists would be back at two to suction him again. I tried to get a couple of hours of sleep and had no idea that he was about to take a turn for the worse.

(This is a container of all of the secretions (snot) suctioned out of Jayson's lungs, throat and nose)

Thursday, February 16, 2012

It is best to feed the baby right after he is suctioned, and that's just what I did. He seemed almost to vibrate as I held him to my chest to feed him. I was tired and out of it, so I didn't know what was going on. Finally I pulled him away to see he was breathing incredibly fast and was taking frequent gasps of air trying to get a deep breath. I yelled for Mike to wake up and had him page a nurse. She came in and immediately called the respiratory therapist. She came in and immediately called the doctor. The doctor came in and stood some distance away. In his monotone voice he said, "I don't know what else to do. Take a blood sample. Prepare the IV. I'm going to order another X-ray." I began to panic. I knew it was bad. I felt it. I was terrified.

Things again began to feel chaotic, and the next hour was again a blur. I watched as they X-rayed my baby, took his blood, and stuck him four times before they got his IV in. He was struggling so hard to breathe, and they couldn't increase his oxygen anymore. I had no idea what was really going on, and the doctor was MIA. Finally the doctor came in and stood at the door and said, "He's going to Primary Childrens" and left. I frantically began packing our things and sent a text to my mom. A sweet, concerned nurse put her arm around me and said, "Just so you're not surprised, they'll be taking him by helicopter. That is why we're preparing the IV." I began crying and just wanted to fall apart, but I couldn't. They hooked Jayson up to High-flow oxygen at 7 liters, which was administered through a mask instead of the cannula. Jayson hated it and just kicked and screamed. The doctor played "hero" when the life flight crew showed up. HE worked on my son. HE tried everything. HE saved my son. I prayed for Jayson to calm down. I really didn't want to imagine him hysterical and freaking out in the middle of the air without his mommy. He did calm down and fell asleep. The crew placed him in an incubator that was nice and toasty warm. I kissed him on the head and we began walking out. The jerk of a doctor said, "Well, hope for the best," as we walked out to the helicopter pad. I would have been a blubbering mess if I wasn't too cold to cry. The air was below freezing, and the wind from the helicopter made the air bone chilling. Mike and I jumped in the car and headed to Primary Childrens praying out loud, praying in our minds, and praying in our hearts that everything would be okay.

Primary Children’s Hospital

Our little boy was taken to the Pediatric Intensive Care Unit (PICU). I hated that place. It was chaotic and scary. There were many very sick children which made me nauseous. Crying children. Screaming children. Moaning children. My child just slept. He was finally able to breathe with the high-flow oxygen and he just slept. Over the next few hours, the nurses worked to wean him off of the oxygen from 7 liters to 5 liters so he could go to the floor. My sister Angie and my stepmom Terresa came from Idaho to support us. Jayson was in the PICU from 4:00 AM until nearly 4:00 PM.

We celebrated when we got to a room on the floor! The rooms were shared, and we quickly made friends with our roommate. I felt like I could breathe again and that things might be okay. The next two days were spent trying to wean Jayson off of the high-flow oxygen, and he was doing quite well.

Friday, February 17, 2012 – Saturday, February 18, 2012

Late Friday night and early Saturday morning, Jayson's respiratory therapist disregarded the notes of the doctors and her protocol and weaned Jayson from 3.5 liters of high-flow oxygen to regular oxygen at 2 liters overnight. She didn't wake me up, and she didn't notify nurses. Instead of weaning one step every 4-6 hours, she weaned him 4 steps in 9 hours; once while I was in the shower, and the other times while I was sleeping. Jayson crashed pretty hard in the morning. I was crazy mad and upset!! They got him back on the high-flow and I felt like we were back on ground zero.

Sunday, February 19, 2012 – Thursday, February 23, 2012

It took Jayson three and a half days on high-flow 3 liters until he could recover well enough to begin weaning again.

Finally, he was able to wean off of the high-flow oxygen and onto regular oxygen. He even got weaned to room air and was doing well for 8 hours until he started struggling again. I decided that we just wanted to get out of the hospital, after twelve days. I didn't want to wait until he could be successful on room air. I wanted to take him home on oxygen. Finally, Thursday, February 23rd we were able to take Jayson home.

At Home

The next two weeks at home went pretty smoothly. We were grateful Jayson spent so much time in the hospital, because it made it easy for him to recover at home. He was over the worst of the symptoms.

We took him to be suctioned twice, and they didn’t really get anything out so we knew we were getting over the RSV. We quit the Daycare and found a family member to care for Jayson, who is an experienced nanny. After 2 ½ dedicated weeks at home, Mike and I decided to take Jayson out! We went shopping at Ross for new work clothes for Mike, and went to eat at Astroburger. The following day, I decided to take Jayson to Logan to go wedding dress shopping with my sister. Jayson seemed to be sounding more congested than usual, but it was hard to tell. I also noticed that he slept most of the day, but he was also in the car a lot. I had no idea that our worst nightmare was about to come true…

Here is a video of Jayson working to breathe with the RSV. I took this so I would remember what to look for if my next child is showing symptoms of RSV.