Maddy - Update

Many of you have kept up with our status with Madeline's seizure on facebook or email so I thought I would update all of it here on our blog so that if you want to know more details you can find it here.

Tuesday - Wednesday: Tuesday evening Madeline started having a fever and the next morning it occurred throughout the day as well. She also was having these little moments of zoning combined with increased heart beat and a spiked fever. We gave her infant's tylenol to keep her temperature down and Wednesday night it hit 102.5 so we gave her meds and put her to bed.

Thursday: By the grace of our Father, Nathan was walking by Madeline's room and heard this noise. He went in and found her having a seizure. She had also bit her tongue so she had a bit of blood in her bed. Nate immediately came to our room, gave her to me, got the cell phone and we called the doctors. We were told to go to the hospital down the street and that Maddy's doctor would meet us there. We then called one of our General Managers and asked him to drive us to the hospital. We wrapped Madeline in a blanket and headed to the hospital. By the time we arrived we took her to the Pediatric Emergency Room and through my limited Chinese and the help of on of our GMs we were able to get her immediately seen. Her temperature was 105 degrees and she had been seizing for 45-60 minutes by then. Then did asked if they could admit her to the Pediatric Intensive Care Unit (PICU) but the downside would be that we could not see her or touch her for the first 24 hours and only via computer screen from 2-4 on other days. We were not happy about it but Maddy's doctor assured us it was best. We went to the PICU, admitted her, had to first put a down payment of 5000 rmb (about $1000) (our insurance will pay us back but we have to put the money down first), and then hand her off to them. I then headed back home to get some stuff, shower, call family, and make preparations for our Thanksgiving dinner that would take place in our absence.

I made notes to all the guests who would be here, gave the key to a friend to set up everything, washed Maddy's blanket and headed back to the hospital. While I was gone Nathan told me that they took Maddy back for a CT (which he got to go with her for), lumbar puncture and chest scan. When I returned to the hospital we got the results back. The CT was normal and the lumbar showed some infection but not severe (ruling out meningitis). The doctor and I had a unique discussion about how my child did not need to drink formula but whole milk and then they told us she wouldn't be able to eat solids for two days or so. The doctor then informed me that we would not be seeing Madeline through the monitor today because you are not allowed to see your child the same day as she is admitted. I had a break down! The hardest thing was knowing that I couldn't hold her or see her. That I spend every day with her and was now restricted. That hurt the most! I know as a foreigner I can pull the "exemption card" but when I saw those Chinese families outside feeling the same pain as me I knew that I couldn't. So Nathan and I sat down to wait for any new information. Chinese hospitals are not at all like American. You pay before you get treatment or don't get treated. You go to the doctor rather than the doctor coming to you. You don't often get a private room but either share one with 3 or 4 others (where you have to take care of the IVs and details) and you don't get comfy spots to sit. Nate and I have spent all the time at the hospital sitting on small foot stools or sitting on the floor. There are no comfy chairs or beds to be found for those of us waiting. The no comfy chairs is surprising to me mostly cause Nathan or I had to be there the whole 24 hours. Not a promising evening! Around 5 the doctor called us back and said that Madeline was awake and playing. Despite what they thought she did in fact refuse any milk but whole milk, pulled out her feeding tube and demanded real solid food. I was so happy! They said she was doing so well and since we lived so close we could return home and just come back in the morning. I left then and Nathan came around 8. We were able to spend the last part of the evening with 18 great friends celebrating Thanksgiving at our house and able to get our minds off the situation for a few seconds. We called family to update them and then headed to bed.

Friday: I woke up around 6:40, took a shower, ate breakfast, read all sweet encouraging posts from friends, cried a bit, then headed back to the hospital. I brought Madeline breakfast, snacks, lunch and dinner - and more whole milk! I sat on my stool and waiting for Bed 10 to be called. Around 10 the doctor called me back and said we'd have to do a MRI for Madeline. Good news = I get to carry her down for it. My heart was so happy! Even better the doctor took her camera out of her pocket and showed me pictures of Madeline. I was so thankful for her kindness. We took Madeline down for the MRI and she started to wake up so I got to sing to her to put her back to sleep but in the end the sedation was wearing off. The MRI could not be done. When we returned to the PICU Nate had arrived and she said we could give her a bit more sedation and try again. If we didn't get the MRI today we'd have to wait till tomorrow and each delay pushed her to staying in the PICU longer. They originally said they wanted to keep her in the PICU (without us being able to see her) for 5 days. We refused! Nate got to carry her down for the 2nd attempt, Maddy's doctor joined them, and the attempt was successful. Then the doctor let us go back into PICU and we were able to hold Madeline for 5 minutes while she slept. Those were the best 5 minutes of my whole day. I just savored them so much. I am double grateful for this. Contact with my child was so refreshing. Last night when I came home from the hospital I grabbed the child of some friends and held her so tightly and cried just cause I missed my Maddy so much. We debriefed with the doctor and she said that once the results come back for the MRI they hope that they can move Madeline to General In-Patient Observation where she will be in a room with us and under the observation of a Pediatric Neurologist. They are thinking that since the tests say there is no infection that maybe she has a seizure disorder. Many of you know that Madeline had a seizure at the beginning of this year in January that was only on one side but also sparked by a fever. This seizure was both sides and lasted just as long (if not longer) than the one in January. They were both brought on by fever so the thinking is that since she is at that young age where fever can affect so much that maybe she has a complex seizure disorder that can be irritated to a compound seizure. I am not sure what all of that means but right now it looks like she may be getting medicine that she will talk a few times a day to avoid seizures and be evaluated as time progresses to see if she may grow out of it (since the first 5 years a child is more prone to seizures).

I returned home to rest a bit while Nathan stayed at the hospital. They still would like to do a heart ultrasound and EKG since her heartbeat was high yesterday but both can be done as out-patient. We are hoping that Madeline will be moved to a room tonight or tomorrow so we can see and touch her. Our community here has been so great and is providing food and some have come to visit us in the hospital (though they can't see Maddy).

Me and Baby #2: Many are also wondering how I am doing as an expectant, prone to pre-term labor, 32 1/2 week pregnant mom. I"m doing ok. Since this has happened before it wasn't too shocking and there is a part of me that is grateful for this cause now we can examine why these seizures are happening more closely. I am resting, NOT staying the night at the hospital, and taking care of myself. No contractions or signs of early labor so far.

Thanks for lifting us up and for all your encouraging words. They help so much! I will return to the hospital at 4 and we have some friends coming to visit at 5. We hope to hear the results of Maddy's MRI tonight. We will keep you posted via blog and facebook. Thanks so much!