Maddy - Update #2

Saturday - I got up early and headed to the hospital. When I arrived they told me that Maddy had a fever the night before but it went away with the fever meds. The English speaking doctor was not in so we had another doctor. She told us that the MRI came back normal and that the neurologist we were waiting on was not coming in today or tomorrow. We were very disappointed and thought about taking Madeline out of ICU but upon discovering that Maddy's blood culture results (to determine if she had a blood infection) were not back yet and should be back tomorrow morning we decided to leave her in until those were in since stopping antibiotics in the event of a blood infection could be dangerous. I asked the doctor if I could do my video watching of Maddy earlier since I was pregnant and would like to go home and rest. She agreed but by 3 she had not come to get me and she had actually disappeared. One of our Chinese friends that came to visit went in and went to bat for me and 5 minutes later I was seeing her on the screen. I thought seeing her would make me happy but it actually did the opposite. Madeline was a zombie. They told me she couldn't sit, stand or walk. She looked miserable. They then told me she wasn't eating or sleeping and I broke down. How could my child get better if she isn't getting rest or food? I went home to rest and Nathan came home later that evening. We then decided that though the doctors wouldn't like it we needed to get Madeline home asap.

Sunday - Nate and I went to the hospital together and when we arrived the doctor told us that we could take Madeline (though we later found out was a miscommunication). We took her to get a 24 hour EKG monitor attached to her and she still looked awful but was happy to be with mommy and daddy. Once the EKG was on we went back upstairs and the doctor said, "Now you have to give her back to me." Nathan then told them that we would be taking her from the ICU asap. They said it wasn't possible and Nathan stood his ground and demanded it by 11 a.m. We were then sent to the head of the department to discuss this plan of attack. It wasn't hard to get her out but during this time with the head of the department we were told a few new things: 1.) Maddy had a fever that morning (though I was told she did not) 2.)The discharge form listed all the diseases that had been ruled out (and some we never heard of) as diagnosis for her. 3.) That she needed new clothes because when they took her from us hours earlier she threw up all over herself. At this point we reached the limit. If they left so much information from us what else were they keeping. They told us her life was in danger if we took her out, were speechless when we asked them what their plan of attack was (since they had told us they tried all they knew to do) and finally concluded that she didn't need to be in ICU. Chinese hospitals!?!? Cultural differences exist. The paper was signed, she was given to us along with her thrown up on clothes, her blanket that was pooped on (possibly not even by her), her antibiotics were stopped (and not given to us), and most of the food we had given her for the last few days was returned to us. We were busting at the seams. We just wanted to get home by now. The neurologist was not in at out patient so we made an appt. for tomorrow, got plenty of fever meds and headed home. When we got home Maddy didn't eat but was so exhausted. She went to sleep at 1:15 and woke up the next morning at 7:15. We woke her every 6 hours and gave her fever meds to decrease the chance of another seizure.

To top this evening off we had friends come to visit in the p.m. and I started having contractions. I laid on the couch and drank plenty of fluids (thanks to the care of my hubby). They stopped and I was fine the rest of the evening.

Monday - Nate stayed home from work (since he had such a great Thanksgiving break!) and we got up at 7 and headed back to the hospital to see the Pediatric Neurologist. We got her EKG removed and told the report would be ready at 3. Then we headed down to wait for our appt. with the Neurologist. After looking at all Maddy's tests the neurologist said she didn't have a seizure disorder but it was simply febrile seizures. I needed to give Maddy fever meds anytime she had a temperature of 99.5 or above and if the fever persisted after two hours to alternate to another fever med. She also prescribed some meds to help boost Madeline's immune system. I agree with the idea of instead of treating the end result (seizure) let's treat what leads up to it (fevers) but I was disappointed. We had heard so many say we'd get seizure meds and now I just have to live every day praying my child doesn't get a fever and if she does that I can give her meds fast enough to lower it. Every mom's dream, right?!? We got the prescription filled, headed home, put Maddy down for nap after lunch and we napped. I returned to the hospital to get the EKG results at 4 and fill out insurance papers. I then found out that Maddy's EKG was slightly abnormal. She apparently has a premature beat every minute. I am not sure what this means. I helped a friend with some report card stuff and while she was over Maddy had a good helping of spaghetti and while she played with her Daddy she stood up and walked (wobbly) over to us at the table. She was playing and laughing and doing very well. She had a slight fever in the p.m. so throughout the night I woke her every 6 hours to give her meds. Nathan also started running a fever - oh, brother!

Tuesday - Nathan awoke with no fever - PTL! Maddy got up at 7 on her own and she had a good breakfast. She played with me and looked about 90% herself. We decorated the Christmas tree and put up Christmas stuff. At one point in time I was holding her and she leaned around to see my face (that was turned away from her), grabbed my cheek to turn my head to face her, smiled and me and kissed me. I think mostly Maddy is dealing with separation anxiety right now. She didn't try to walk as much but did here and there. I let her practice walking so we could get back in the routine of it. We had an early lunch (which she ate well also) and Maddy went down for nap at 11:30. I had a 33 week baby appointment today so I left Maddy with my helper (Maddy was sleeping) and headed to the doctor. My appt. went a little long. We did an ultrasound to see if my body has started preparing for labor and luckily it has not. The baby looks great and healthy (PTL!). We also did the NST (Non-Stress Test) and the first 10 minutes was negative because our little girl was asleep but once I moved to wake her up she was moving around and gave a positive (good) result. So despite all the craziness the baby is doing well. Maddy's doctor wants to get another opinion about the seizures (which we are grateful for) from an American doctor and we made an appt. to see him on Thursday morning to do a follow up. I didn't get home till 5:30 and some friends came over for a quick dinner and to check in on us. Nathan came home early to care for Madeline (since the whole separation thing is an issue). He said she was grumpy when she got up so she slept again from 5-6, got up and had spaghetti and some of Mommy's pizza, then went to bed at 7:15 (though she squeezed in a few laughs for Mommy and Daddy at the end). She had a slight fever when she went to sleep but was given Motrin and checked two hours later - no fever. We will continue to check her tonight every 6 hours to see if there is a fever. One highlight from today was just laying there during the NST and listening to the baby's heartbeat - I just enjoyed the sound of that life inside me - then I felt a peace come over me and the Father say, "I will take care of you!" I need to be reminded of this daily.

Maddy is doing better and we are getting another opinion to see what is going on. It is hard not knowing what is up with your sick child. When all the tests come back negative it just seems so frustrating. I just want an answer. I want something to blame this all on. I feel like I can't breath sometimes. Before this all happened I was enjoying the calm before the baby came and day to day was maintenance to be sure the baby didn't come early. Now I just feel like my heart can't settle anywhere cause I'm waiting for my child to not be in the "danger" window of potential fever. I'm waiting for Maddy to be normal again. I can't be too upset about Maddy because it could endanger baby #2. I am functioning in fear. It's lonely! It's tiring! "I will take care of you!" I need to rest - rest in that peace!

Tomorrow we will meet with a woman who counsels families who have just gone through big transitions or events in life with specifics to their children. She could not have come at a better time. More to come in Update #3 - Post consult and follow up appt. Thanks for your thoughts, they are much needed.