Mia's finally back home from the hospital.
Three weeks ago, we took Mia to her doctor for a fever that had climbed up to nearly 103 degrees and wasn't showing any signs of going away. We had already been to the doctor four times that week for Kelsey, who had broken out in hives and had a swollen upper lip. The doctor suggested we take her to the hospital. We called the branch president of our church, who picked us up and took us to the Imabari prefectural hospital.
After I filled out some forms, a doctor checked Mia and said that she most likely had some sort of bacterial infection. She recommended we admit her to the hospital for a few days so that they could treat her and keep an eye on her. They gave her an IV and prepared a room on the fourth floor. The nurse said that Stefanie would have to stay with Mia at the hospital, sharing a full-size crib.
I planned to visit Stef each day after Kelsey's afternoon nap and bring dinner for all of us to share. When I came back the second day, Mia was grumpy and her fever was persistent. I asked the doctor what he thought, and he said that even though her fever had climbed to 104 and wasn't coming down, she wasn't having any serious problems like convulsions. He still anticipated a quick recovery.
A couple hours after speaking with the doctor, Mia started to have febrile convulsions. I pressed the nurse-call button and asked them to come to the room. When nobody seemed to show up, I ran out to the nurse station to ask them to hurry. The nurse sitting at the desk told me that Mia's nurse had already left for the room. I ran back to the room, and the nurse was looking at Mia, who was sluggish and unresponsive, and still convulsing. She asked how long she had been like that, and I explained that she had just started shaking. She quickly exited the room and was soon joined by Mia's doctor and another nurse, who picked Mia up and whisked her away to another area of the hospital, leaving us behind. I consoled Kelsey as she reached out and cried, "Oh no, baby Mia!" as they disappeared with her little sister. Stef and I looked at each other, and I could tell that we were thinking the same thing.
When Mia was born sixteen weeks premature on a boat, Stef and I both felt a calming assurance that everything would be all right. When they rushed Mia away, neither of us felt that assurance. I embraced Stef and told her how much I loved her, assuring her that we'd make it through everything okay.
I'm not really sure how long Mia was gone. In the 45-120 minutes that she was with the doctors, I had enough time to consider nearly all possible outcomes. All I could do was pray that she'd be all right and that we'd have enough strength to deal with the outcome.
Mia and the doctor's entourage finally returned to the fourth floor, where we were waiting. The doctor said that they had stabilized her with some medicine for the convulsions. Her fever was still high, but she was going to be all right. They moved her into a room that was right across from the nurse station, allowing for constant supervision. Stef slept with Mia that night.
The next day, her fever dipped slightly, but came back in full force. The medicine for the bacterial infection didn't seem to be helping. When a rash broke out on her arm, the doctor realized that we might not be looking at a bacterial infection. It's almost unheard of in kids Mia's age, but it seemed like Mia was suffering from Kawasaki Disease, a condition that targets the heart. As a preemie, Mia already has a heart condition called Atrial Septal Defect, which is, to put it clearly, a hole in her heart. So, we knew from the moment the doctor mulled the Kawasaki diagnosis that we needed to be worried about her heart.
Mia's convulsion medication left her sluggish and unable to eat, so we had to feed her with a medicine dropper, 2 milliliters at a time. She had difficulty swallowing, and so a lot of the milk seemed to be going down the wrong tube. But since I had a way to feed her, I stayed at the hospital so that Stef could have a break.
Along with the fever and rash, Mia had conjunctivitis, cracked lips, and another symptom (that I can't remember), which all together pointed to a diagnosis of Kawasaki Disease. The doctor started administering treatment of antibodies (immunoglobulins), which are generally very effective in treating Kawasaki Disease.
During the first stage of immunoglobulin treatment, Mia wasn't responding very well. The nurses left it up to us to remember when to administer her oral medication. The idea of us forgetting to give her an essential drug frightened me, so I asked them to remind us.
Stef stayed with Mia the next night, and I slept at home with Kelsey. Stef felt guilty about sleeping that night, because she wasn't sure the nurses would always respond promptly to problems. At home, a package from my mom that had a crib sheet had come while I was gone. Without Stef around, a simple thing like seeing the unused crib sheet or Mia's empty jungle bouncer was too much to handle.
The next morning, I went in to the hospital to check on Mia, because Stef was worried about a patch of raised skin above Mia's right ear. She wasn't sure if it was a skin reaction or if it was coming from inside her head. Stef had noticed it when she went to check Mia's temperature, which was up around 104 degrees. Up until that point, there hadn't been much difficulty communicating with the hospital staff. However, when Stef tried to describe her concerns to the nurse, things got a little complicated. I arrived at the hospital and took over, since my Japanese is much better than the nurse's English.
Since Mia is so young, using fever control medication is too risky. The only thing they could do to control her body temperature was put a cold-pack under her neck. When Stef woke up, the cold pack had returned to room temperature. I asked if the cold-pack shouldn't be replaced, and the nurse got a bit defensive. I explained that we were worried about her fever being so high and that we wanted to do everything we could to keep Mia from burning up. After a few failed attempts to explain our worries, the nurse broke down and started crying. She was tired and had forgotten to come and check Mia's temperature and change the ice pack. She felt guilty that we couldn't trust her to watch over Mia while Stef slept. As she sat there with tears streaming down her face, Stef leaned and gave her a hug, which seemed to make her even more uncomfortable. The doctor on duty came in and the nurse calmed down. Soon after, Mia had a new nurse. Her shift might have been over, but I think that they gave her a break from us.
I had a meeting with the doctor, various nurses, and a translator, in which they described Kawasaki Disease and the treatment plan. I only needed the translator for two medical terms--the rest was clear. There were two more stages of immunoglobulin treatments--if one didn't work, they'd step it up to the next level. If the next level wasn't effective, they'd have to try the immunosuppressant Cyclosporin A, which is only administered at the Matsuyama Central Hospital, where Mia spent the first four months of her life.
The thought of having to go back to Matsuyama made me queasy. I was trying to wrap my head around all the information so that I could pass it on to Stef, who was watching Kelsey during the meeting. Just ten minutes after the meeting, while I was in the middle of explaining the plan, the doctor changed his mind. Mia had chest congestion, and the results of her ultrasound had them fearing bronchitis and pneumonia in addition to all the other problems. They said that they needed to transport her right away to the ICU in Matsuyama.
Stef and I took Kelsey to our friend Kris' house to stay for the night. Stef and I rode to Matsuyama with Akiko-san, a lady who works for the International Center in town. We got to the hospital at night and met the huge team of doctors that would be taking care of Mia. We saw a lot of the doctors and nurses who were in the NICU when Mia was there, and they all greeted us and asked how Mia was doing. I stayed the night with Stef at the hospital, and returned to Imabari the next morning to pick Kelsey up.
We were told to expect at least a week for recovery. The doctors said that Mia had stabilized from earlier but that her fever was still high. Over the next few days, her fever would briefly drop, then climb back up to the 102-104 range. I called the missionaries in Matsuyama to see if there was anywhere Kelsey and I could stay for the next few days. The Sumida family, who used to give us a ride to church when we lived in Matsuyama, let us stay there. They have young kids, so they agreed to watch Kelsey the first day while I went to see Mia. They were also kind to prepare meals for us in the morning and evening. We even got to take rice balls that they had made with us for a snack.
After two or three days in Matsuyama, it seemed as though Mia might be getting better. Her temperature was close to normal, so I planned to take Kelsey back home with me to Imabari after visiting Stef and Mia for the day. When I was getting stuff ready early that morning at the Sumida's house, I received a text message from Stef that said, "Maybe you shouldn't go back to Imabari today. Doctors afraid of cardiac failure." I asked the Sumidas if they'd be willing to watch Kelsey again while I went to the hospital. It was impossible to keep my emotions in check as I described the complications. They agreed to watch Kelsey, and I rushed to the train station.
I got there right as both trains were arriving, so I was unable to board. Had it just been my train that was there, I would have had no problem getting onto the platform. But since a train was coming the other way, the railroad gates came down and I was forced to watch the train as it pulled up, waited for people to load, and then pulled away. The gates opened up and I went up to the platform and sat down on the bench, sobbing uncontrollably as I waited for the next train to come. All the people around me avoided making any kind of eye contact with the big, blabbering foreigner.
When I got to the hospital, the doctors handed me a laundry list of all of the problems that Mia was facing. Normally, doctors will explain problems and then go over the possible treatments, phrasing everything in a tactful way so as to give you hope for your child's recovery. With the language barrier, all information given in English was supplied without any such optimism. Just a list of the problems and their ultimate outcomes if treatment is ineffective.
Mia's pericardial effusion (swelling of her heart due to fluid retention) was getting worse, and her heart rate was getting dangerously high. Her fever was back in full force, and the immunoglobulin treatment had stopped having any effect. The doctors explained that they were going to have to begin Cyclosporin treatment, which was risky.
After explaining the treatment plan to me, the doctors huddled around me and asked if there was anything I wanted to "kiku". In Japanese, the word kiku means both to hear and to ask, so I said that I'd like to "kiku" that Mia would get better the next day. The doctors frowned and apologized that it wasn't something that they could say. They patted me on the back and encouraged me to "ganbatte," which roughly translates to hang on or stay strong.
The next day, things got even more complicated. Kelsey's rash, about which we had seen the doctor multiple times, got even worse, and she had a fever of about 101.5 degrees. I had forgotten to bring her hives medication with me to Matsuyama, so her rash wasn't getting any better. She was lively and happy, but her rash, fever and previous mouth-swelling made me worry that she might have Kawasaki disease, too. It's not contagious, so it would have been a huge coincidence. Needless to say, the last thing we wanted was to have to worry about Kelsey, too.
I set an appointment for Kelsey for the next morning. It turned out to just be a bacterial infection that came from the scratching when she had hives. What a relief. We got medicine which we faithfully applied until her rash went away.
Mia's doctors started the Cyclosporin treatment. Brother Sumida came to the hospital and we gave Mia a priesthood blessing right after the new treatment. I gave Stef a blessing, and then rode back to the Sumida family's house. When we got there, I asked if Brother Sumida and his son (the Branch President) would give me a blessing as well. I struggled with not knowing if Mia would get better. All I wanted was to see her smile again. The Sumidas blessed me with faith in the healing power of the priesthood. Having received this blessing, I remembered part of my patriarchal blessing, which discusses my children and the strength of their spirits. I felt strongly that Mia would get better.
The next morning, Mia was doing a bit better. The medication was working well. Her heart had shrunk slightly with the diuretic that she was taking, but was still way too big. Over the next few days, her heart returned to mostly normal size, and her fever completely subsided. She was getting better. She no longer needed to be in the ICU, and they were going to transfer her back to the Imabari prefectural hospital.
When Stef was leaving the hospital, the nurses asked her to pay her hospital bill before leaving, which was 240. They asked if she had the money on her, and she responded incredulously that she didn't. Why would she keep 240 bucks on her in cash? She went down to the ATM with the nurses, who kept asking if she was sure that she didn't have that much on her. Frustrated with the persistent questioning, she pulled out her change purse and said, "This is all I have on me." The nurse swiped the change purse, unzipped it, and pulled out 240 yen, the equivalent of about $2.50. Our hospital bill in Matsuyama wasn't even three dollars.
Back in Imabari, Stef again stayed with Mia at the hospital. The nurse who had broken down was once again on duty, and happy to see Mia in improving condition. The doctor and his staff monitored Mia and performed echocardiograms to monitor her heart, which was steadily improving. They estimated her treatment period at two weeks, but said that it could go quicker.
That was bring-your-daughter-to-work week. I was lucky to not have a grueling work schedule during this time. Kelsey came with me and ran around on the top floor of the city office building while I talked with the other English teachers. As inconvenient this whole experience was, there was no better time for it to happen than Summer break.
After a week in Imabari, Mia was all better and ready to come home. When I asked how we could pay the bill, the nurses said that we wouldn't be receiving one. She's covered 100% under our insurance. Whew.
Not being able to speak to family through all this really stunk. The only way I could keep myself from emotionally falling apart was to stay close to Stef. Stef really missed her mom.
It's great to have Mia back at home, jumping in her bouncer. I've promised myself to be more involved with Mia and to take more pictures and video of my children. Nothing is more important than family.
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