What a crazy couple of weeks it has been. I've been promising a blog post about our California trip. So, here it goes.
Just a bit of a preface...A few years ago we went on a Disneyland vacation with some friends (the Starrs & the Larsens). We had such a great time, we decided to make it a tradition. So, we decided that every leap year we would meet in California for a week, go to Disneyland and just basically enjoy a vacation together. This year we were scheduled to go February 4-11th.
The Intro
Let me start by reminding you that in my last post I mentioned Isabel had been sick with some sort of intestinal/stomach virus. That illness began on a Tuesday and seemed to be over with on Friday.
On Sunday, Izzy began telling us that her knees hurt. Then she told us her ankles hurt. She seemed to be in genuine pain and was having trouble sleeping at night because of it. I normally wouldn't have taken her into the doctor so quickly, but we were scheduled to leave for our Disneyland vacation on Saturday. So on Tuesday, I took her to the pediatrician to see if he could give us some insight. He did a bunch of blood work, a strep test, a urinalysis and a few other things to help rule our certain diseases.
All of her tests came back within normal range except for one. It was an elevated enzyme that would suggest inflammation of the muscles. So, we were instructed to give her Tylenol or Motrin to help ease the pain and just wait it out. They figured it was probably the virus she had just working it's way out of her body.
Friday came and she was still in a lot of pain. In fact, we had spent most of the previous two night massaging her legs and putting heat on them trying to help her rest. So, once again I phoned the pediatrician's office and asked the nurse what she thought I should do. Once again, they reviewed her blood work and figured it was just the virus. The pediatrician called back and said he was concerned about her pain level, but was confident in the blood work results.
Side Note: Carter woke up Thursday with the stomach bug Izzy had the week before. So, that just added to the crying and unhappiness at our house.
Friday/Saturday
We spent the day on Friday going back and forth about leaving on vacation. After all, it was a 10 hour drive or more and we didn't want to get to California and have problems. Jarad and I thought and prayed about it, and still felt good about going. We also hoped that being with friends on our trip would help take her mind off her woes. So, Saturday morning we packed up the van and headed out. The drive was a bit rough with Izzy complaining about her legs, but for the most part, she did really well as we traveled.
Sunday
Sunday we went to church. Izzy spent most of the time out in the hall with Jarad because she just couldn't seem to find a comfortable position for her legs. Sunday afternoon the guys stayed back at our rental house (another post in and of itself) to watch the Super Bowl while the ladies took the kids to the beach. They had a blast! I had to call Cole back from the deep quite a few times. We even found a live hermit crab that Cole begged to bring home. (We didn't by the way!) Isabel seemed fine. She was walking a bit weird, but it was cold and I thought it was that combined with a bit of pain.
Sunday night was horrible! Izzy was up most of the night with leg pain which meant Jarad & I were up most of the night too. We had begun to notice the more she used her legs during the day, the worse the nights were. However, Monday morning came and Izzy insisted she was okay enough to go to Disneyland. So, we headed out.
Monday
We were in Disneyland for just a few hours when we noticed Isabel's face started to droop on the left side (Bells Palsy like). It wasn't too pronounced, but we could definitely see it when she tried to smile. Then she started walking, well, like she was drunk. She was tripping on herself and just couldn't seem to make her muscles do what they were suppose to. That scared us! So, we left Cole with our friends and packed up Izzy and Carter and headed to the emergency room at St. Jude's.
We chose St. Jude's because it's a children's hospital, right? Well, apparently not in Orange County California. After the ER doctors had checked Izzy out, they ordered a head CT and told us we would be sent to the Children's Hospital of Orange County (CHOC). Did I mention there was more blood work and an IV involved in the ER? Did I also mention that Isabel HATES needles?
Tuesday
Anyway, Isabel had her first (and hopefully only) ambulance ride in the early hours of Tuesday morning. We arrived at CHOC around one o'clock in the morning, where we soon learned that most rooms in California hospitals are still shared. Poor girl on the other side of the curtain. We found out later she was there because of a massive migraine. Isabel had spent most of the night crying/screaming that her legs hurt. I'm sure our roomie was glad to see us moved to another room.
May I just interject here how grateful we were at this point to be in California with great friends! They took our boys through this whole process so Jarad and I could both stay with Isabel. We can't thank them enough!
Tuesday morning brought more doctors and the neurology team to see Izzy. The first neurologist that came in was a bit puzzled by what he saw. However, the head neurologist, Dr. Anne Tournay, spent about five minutes examining Isabel and gave us a diagnosis: Guillain Barre Syndrome. You can read about it here www.ncbi.nlm.nih.gov
Dr. Tournay then ordered an MRI and a lumbar puncture. The MRI was to rule out any form of encephalitis. The lumbar puncture would prove the diagnosis and confirm the course of treatment.
A few other things we were told at this point:
1. This syndrome is extremely painful, especially in children. I think it was at this point I started having major guilt about making Isabel ride in a car for 10 hours. It was a relief though to finally have a diagnosis.
2. Treatment for this syndrome would include at least a 5 day hospital stay and would be administered through an IV. Goodbye Disnelyland vacation!
3. Isabel would be moved the Pediatric Intensive Care Unit (PICU) for careful observation for the first 48 hours of treatment as the syndrome had the capability of moving to her chest region and causing breathing difficulties.
4. Most people fully recover from Guillain Barre. It just takes time, and maybe some physical/occupational therapy. That was good news!
The MRI was completed on Tuesday evening. (The results later confirmed that she didn't have encephalitis.) The MRI was the hardest part for Jarad. He went into the procedure room and helped Izzy keep her "sleep mask" (aka sedation) on until she fell asleep. I think we thought we knew what to expect since we had spent 3 months of our lives in the NICU with Carter. But, as Jarad put it, Carter never reached out to him and called out "Daddy" ..Isabel did.
Tuesday night ended with Isabel's first Intravenous immunoglobulin (IVIG) treatment. IVIG is a product derived from human blood. Basically the antibodies Isabel's body produced to kill the original virus she had didn't quit working there. They went on to attack her nervous system & muscles. So, the IVIG is given to attack those antibodies and kill them (I think that's how I understood it). Anyway, nobody quite knows why this treatment works, but it does.
Wednesday
Wednesday, I spent the day in Disneyland with Carter & Cole. We figured we couldn't cancel our boys' fun...especially Cole's fun. I think our NICU experience with Carter helped us cope a bit more rationally with Izzy's situation as we realized it wasn't necessary for both of us to be by her side around the clock. For me, Wednesday brought a bit of stress relief as I was able to see sunlight and focus on my boys.
Jarad and Izzy's Wednesday wasn't quite so pretty. Izzy underwent the lumbar puncture that day. Jarad was able to remain in the room, which was a relief to both of us I think. I was glad he was there, because I don't do well with needles. Like mother, like daughter! The results of the lumbar puncture showed an elevated protein count in her spinal fluid, confirming the Guillain Barre diagnosis. Isabel also endured a new IV that day. It took 3 pokes to get in right.
The bright spot in Izzy's Wednesday was Grandma Oborn flying in from Salt Lake. Aunt Sandra picked her up and together the two of them spoiled Isabel for the afternoon. That night, Grandma took Carter and went back to Sandra's house until Friday. We were so grateful to have one less child to worry about at this time. Thank heaven for my mom coming to the rescue.
Thursday
Apparently Mom just isn't as much fun as Dad when it come to the Disneyland rides. Cole and Jarad spent Thursday & Friday doing the Disneyland thing while I spent those days at the hospital caring for Isabel. These two days were mainly spent trying to figure out what combination of medicines were right for Izzy. There were some good moments, but a lot of ugly ones too. Isabel's nervous system was so messed up. Even a touch felt like a poke to her. The blood pressure cuff was the worst. If a touch was painful, I can only imagine what a squeeze of the cuff was like. We had a hard time getting her to hold still long enough to get a good reading. However, we were blessed with some very patient nurses who were willing to work at Isabel's pace and in her time frame. We finally figured out that the blood pressure cuff on her leg while Jarad held her leg was the best route to a decent blood pressure. When Jarad wasn't there to hold her leg, she was sure to tell me I didn't do it quite as well as he did.
On Thursday, Izzy was moved from the ICU to another floor. We were kinda dreading the shared room situation, but found that we had a private room still. I think the amount of crying Isabel was doing factored into that decision.
Another thing we learned about Isabel...she does not tolerate Ativan well. They gave her this drug to help with some of the anxiety she was having. It seemed to work at first. She calmed down and was able to rest, but when the effects of it were wearing off, she did not do well at all. At one point she was crawling to the top of the hospital bed. She saw things that weren't there. She was not our little girl. It was just all together an unpleasant drug for her.
Friday
Friday started out pretty rough. Izzy was still in quite a bit of pain and was suffering the emotional effects of being in the hospital. That morning all our friends came to visit her. She spent most of the time crying and being irrational (I think she was coming off Ativan then) (I also think she might have emotionally scarred Courtnie.) After the visit with friends, Jarad, Todd & Trent were able to give Izzy a blessing. I can't say enough how thankful I am for those three worthy priesthood holders. That blessing was a turning point for Isabel. She began responding better to everything around her. Her medicine seemed to be working better.
Friday afternoon things only got better as Grandpa Oborn flew in to visit. Really, he flew in to take our van and boys home on Saturday (Jarad, Izzy & I planned to fly home to prevent her from sitting for such a long time). Once again, we are so grateful for parents who were willing to come spend their Saturday driving from California to Utah.
Saturday
Saturday brought a little relief to Jarad & I as we were no longer trying to be at the hospital and on vacation. It was hard to send our boys on their way back to Utah, but we really didn't have a choice. Cole had to get back to school, and Grandpa had a flight to catch in SLC on Sunday afternoon.
Sunday
Sunday was the happiest day of all as Isabel was released from the hospital. It took us a bit to get some of the medications she needed since the hospital pharmacy was closed for the day, but we finally broke free around five o'clock that evening.
