We are HOME. Hallelujah and PRAISE THE LORD!!!
(Because this is such a long post, I bolded the paragraph that explains the latest news)
Yesterday was a LONG day, and I never guessed that we would be home this soon.
Let me try to do a quick update (which I am never, ever quick).
Yesterday started well, with Ada waking on her own, smiling, with no seizure. (The seizures only happen when she is waking, usually when something wakes her up before she is ready to wake on her own). She was so cute, because the door to the hospital room was open, and she spotted her name written on the door, and a huge smile covered her face. She looked at me and said, "mommy!!! That's my name!!!" (written in pink, to top it all off!!!) However, they had to draw blood several times yesterday in order to check her glucose and potassium levels, so her happiness quickly wore off. She was absolutely worn out and terrified and everything in between, which broke my heart, and I had to work really hard to keep it together for most of the day.
By afternoon, her glucose and potassium levels were normal, but she had two more seizures, which, of course, proved that the dehydration was not the cause of the seizures (though I am not convinced that there is no relationship there--I don't think it's the cause, but maybe brought the problem to the surface?)
Just when Ada had fallen asleep yesterday afternoon (after getting maybe 4 hours of sleep the night before), the girl came in to do her EEG. So, I had to wake her, which resulted in a seizure. When she "came to," she was so upset, and she continued to cry and cry as the girl (nurse? Tech? what is the title of someone who administers the EEG?) put the wires in her hair. If you're not familiar with an EEG, it is not a painful process, but Ada was OVER IT and terrified of anyone that walked into her room. The whole situation was a bit of a nightmare because I was trying to comfort Ada, which was not working, I got my mom in the room because Ada was asking for her, Scott came in with John because I hoped John might make her smile (John was visiting at that point), and I think the girl doing the EEG was a bit annoyed with us. I didn't realize that I could hold Ada in my lap during the process. Plus the overhead light was on, and I wasn't aware that I could turn it off. And in the midst of this whole thing, Ada really, really needed to tee-tee, and the tech wanted her to go in her pull-up, but Ada is not used to a pull-up, and she wouldn't do it. My mom, as frustrated as I was, went to find a nurse or someone who could help us, and I just started crying. It was so bad;) I was a bit of a nut case at that point. But when the tech(?) saw how upset I was, she began to work with us. She let me take Ada to the bathroom, which calmed Ada a lot, and that is when I found out that I could hold Ada during the EEG. Once I held her, she fell asleep in my arms, and everything worked out. We were SO GLAD when that was over!!!!
Now, to balance out the above story, let me just say that we had a WONDERFUL nurse last night. She was so great with Ada, and she even made Ada smile, which was a huge accomplishment. Ada is still talking about that nurse. Ada was able to go to bed at 9:00 (as were my mom and I--per Ada's request, Scott went home with John last night instead of my mom, which was the original plan), and the nurse honored our request to not check Ada's vitals throughout the night. She did have to come in once or twice to check her IV, but she just used a little flashlight to do that. My mom and I so wanted Ada to get a good night's sleep. She was a miserably tired little girl. She did not have any seizures during the night, though there were two different times that she began the crying that she does during the seizures, but she settled herself back to sleep before an actual seizure occurred.
Well, the nurse came in at 6 am to take Ada down to radiology for the MRI. Again, Ada woke with no seizure, and smiled at the nurse when she saw her. We were so thankful for that full night's sleep!! (and again, for that nurse!!) The prep for the MRI was a quick and fairly painless process, since they put Ada to sleep. She cried a bit when we walked into the actual MRI room, but the sedation kicked in so quickly (which, as a parent, was very disturbing to watch. One second she's crying, the next second she's out), that it really wasn't a big deal. And she did great waking afterwards-- NO SEIZURE. I was prepared for her to have one after such a strange sleep.
The neurologist talked to us at that point, letting us know that the EEG and the MRI both looked normal, which is GREAT news. It does mean the we don't know the cause of the seizures, but I think it's pretty common not to know the cause. The main thing--It means that nothing really dangerous or scary is causing them. The neurologist did suggest that we put Ada on medication, which would be a two year commitment, and the medication has some fairly strong side effects, which I don't want to deal with unless it's an absolute necessity. We saw about 3 or 4 different doctors while at the hospital, and the general pediatrician, whom I LOVED, agreed with my decision to wait. Now, I am a reasonable person, and if Ada continues to have seizures, I totally agree that we should put her on medication. I just want to see if she continues to have the seizures when she is healthy and not on a sleep-inducing medication. (This is total gut instinct on my part, since the doctors assure me that the seizure were not caused by the virus or the zofran). We will have a follow up with the neurologist in a week, and we will see our general pediatrician in a day or two. Also, they sent us home with an emergency medication to use in case Ada has cluster seizures (what she was having Monday night when we took her to the ER) or a seizure lasting longer than 3 minutes (hers last about 30 seconds). The emergency meds should stop the seizure. So, there is the quick update. (by the way, Scott and I are more thankful than ever for insurance!! The emergency meds which would have cost us about a thousand dollars total, only cost ten because of insurance. Thank you, Lord!!!)
Now, just a few thoughts, and then I promise I will close this thing. I can't help but "write this out" as it was my scariest motherhood moment to date.
Let me just say that God has been so good throughout this whole process. I did freak out when Ada was having the cluster seizures, and we made the decision to head to the ER. I was standing in my bedroom crying, looking around the room, and saying, "I don't know what to do." But after I snapped out of it, I was able to think clearly and not panic (which is a huge deal for me. I am a panicker!!) Also, when we got to the ER and the nurse confirmed that Ada was, indeed, seizing, and we heard that they were going to do a CT scan to check for tumours and masses on Ada's brain, I was able to think, "God is good and big and He will give me grace for whatever we are about to face." That is just God. I couldn't think that on my own. I was also able to take things a few minutes at a time. At one point, after the doctor said the word tumour, Scott and I both had tears in our eyes, but I looked at him and reminded him that we didn't know anything and we could not worry about something that was not truth. I am currently memorizing quite a bit of scripture, which is not something I am normally disciplined with, and on that night in the ER, it was a huge help to say those verses over and over in my mind when I was tempted to go crazy with worry. DO NOT BE ANXIOUS ABOUT ANYTHING, Paul says in Philippians. I normally assume the worst. That is so, so, so my tendency. But I found myself thinking in the unknown moments, you don't know that this is a tragic situation. If it is a tragic situation, God will give you that grace then, but until then, don't go there. Those thoughts are a huge praise for me. (Edit: Let me clarify. For me, who tends to WORRY, these thoughts are a huge praise TO GOD)
And so many little things that I prayed for were answered. My main prayer on the way to the ER? That a nurse or doctor would witness the seizure. I knew that if they saw it, they would much more know what we were dealing with than if I simply described it. (For example, I thought the seizure was lasting 3 minutes, it was only 30 seconds--huge difference!!!) Well, almost immediately the nurse saw the seizure. Praise God for that!! And, dehydrated Ada needed to tee-tee in a cup or they were going to have to do a catheter. Scott, Ada, and I were in that hospital bathroom FOREVER, Ada crying, and Scott and I praying that she would use the bathroom (she wanted her potty seat that she has at home, but the hospital didn't have one). We didn't think it was going to happen. Truly, we were in that bathroom for so long, and then, SUCCESS. When we heard that urine hit the water, Scott and I grabbed hands, and both of us had tears of joy in our eyes (I kid you not). Now that's marriage, right? Being equally excited about your child tee-teeing;) Also, little John slept all night at Jessica's--miracle, right? I prayed and prayed for that on the way to the ER too. Jessica has a little baby (plus two other children), and I just hated the thought of her being up with baby Kate and John. God answered that prayer. And today, John stayed with Tutti while Scott joined us at the hospital, and again, he was great. Tutti said he was so happy and cuddly the whole time. Praise the Lord!! (And thank you, Jessica and Tutti. I appreciate both of you so much!!) God absolutely took care of us. And what huge relief that nothing scary or serious is wrong with Ada. Obviously God could have chosen to take us down a completely different path, and of course, He is sufficient no matter the situation, but I am overflowing with thanksgiving that this time, He is not taking us down a scary path.
Thanks, everyone, for prayers. It was so encouraging to hear that you were praying for us. And I apologize for my extreme wordiness. It is a problem of mine;)
p.s. Children's Healthcare was great. I was very relieved to be there and not somewhere else. I was able to rest in the fact that Ada was being taken care of and was in good, very capable hands. (the HORRIBLE eeg being the one exception). Our night nurse--Jennifer, and the general pediatrician--Dr. Keeling, I think--were WONDERFUL. I was so comforted whenever either one of them walked in the room. (Everyone else was great as well, but those two stood out to me).
And now, I am off to sleep in my own bed. Woo-hoo.