There's so much to talk about so this is going to be a long one!
Ella has suffered from migraines for years now. Back when she was younger she would get a headache and then throw up. We were always worried this was a sign of her shunt malfunctioning since basically any flu type symptoms are what we are supposed to be on the lookout for in regards to that. That led to a lot of worry on my end anytime she would throw up or not feel well in general.
A couple years after her brain surgery we met with the new pediatric neurosurgeon. The surgeon that performed Ella's brain surgery retired and I wanted to make sure we met his replacement. Not that I thought she would need brain surgery again anytime soon, but I thought it would probably be nice to introduce ourselves in case there ever was an instance that she would need to possibly have a procedure again it would be nice to be like...Hi nice to see you again...vs...who are you?!
He was the one that first mentioned that migraines can actually be caused by an allergy to food dyes. We started down that journey of purging food dyes from Ella's diet. We noticed right away that her migraines all but disappeared. She would have a couple every now and then, but we narrowed it down to she was also allergic to paprika so we cut that out too. Still there would be breakthrough migraines occasionally, but overall they were very minimal.
As Ella has gonna older and gone through puberty things have been more and more volatile. She was getting migraines much more frequently and there really wasn't a rhyme or reason as to why. This summer they had especially kicked up a notch.
On the third day of school, August 19th, Ella had another migraine....that was her third migraine of the week. She was really not feeling good so I told her to take an Ibuprofen and go sit on the couch for a bit while I did school with the boys in the dining room. I kept checking on her and then I decided she should probably go upstairs and lay down. I thought a nap might help...she had been sleeping in a lot during the summer so maybe the 3 days of earlier mornings was contributing a bit to the headache. I had taken her temperature and she wasn't running a fever so that was good.
After I told her to go upstairs, I was walking by the stairs and I heard a funny sound. I looked up and noticed that Ella was just laying on the floor in the upstairs hallway. I rushed up to see if she was okay...I thought she might have gotten dizzy and fell over. She was sitting there rocking back and forth saying....I don't feel good....over and over again! I helped her get to her bed and one of the boys brought up a bowl so if she did puke she didn't have to get up and go to the bathroom. That's when I decided to make a doctor appt. I tried calling her neurologist, but I could not get through....I was on hold for so long. I tried to make an appt online, but they don't let you do that even though the website said you could. So I made an appt with Ella's pediatrician instead. Her appt was for 1:45pm. Ella did not want to go because she felt so bad, but I knew we needed to get her seen.
I kept checking on her while also doing school with the boys. I knew that it would take a bit to get her down the stairs and in the van to go to the doctor appt so I headed upstairs just a bit before 1pm. She was not feeling good at all. I felt for her pulse and I also felt her chest. Her heart was pounding it was beating so fast. Her skin was all clammy and sticky. She was breathing so fast. I tried to get her to slow down her breathing and breath in through her nose and out her mouth, but she couldn't do it. I had put her fan in the window earlier to cool down her room, so I asked her if she'd like me to take the fan out and actually point it at her body to help cool her down. She said yes so I turned around to move the fan. By the time I set the fan down I heard that guttural noise you hear right when someone starts to puke. She had leaned forward and grabbed her bowl and was puking. This in and of itself is not uncommon in our house. Ella is a pro at throwing up. She has a migraine, she feels like crap, she throws up 5 or 6 times and then she's right as rain!
I started rubbing her back to comfort her and I had my hand on her right shoulder, but then I started noticing that her shoulder was getting really heavy like she wasn't bearing any of her weight. I also noticed the her hands weren't really holding the bowl anymore and she was almost vomiting outside the bowl. I immediately grabbed the bowl and held it with my right hand while also hold her right shoulder with my left hand keeping her upright. That's when her active vomiting turned into more just fluid running out of her mouth and it was bubbling around her mouth. She also turned her whole upper body towards me, both her hands turned in on themselves. She was staring right at me and then she gritted her teeth and moaned while her whole upper body shook. It was kind of like if you were trying to flex your muscles really hard. She never did fall back on the bed and shake violently thank goodness.
After she was done shaking she did fall back onto her pillows and she went very still. Just a couple minutes prior her heart had been beating so fast and she had been breathing so hard and then it all stopped. Her heart was beating, but it was terribly slow, she wasn't moving or responding. Of course by this time I had been yelling at the boys to get me my phone I needed to call 911. I think Owen brought the phone up. I called 911 while trying to get Ella to respond. I was squeezing her hand and saying her name. I was opening her eyelids to see if her eyes would respond at all. I was asking Jesus to help my baby girl. I told the 911 operator what happened and she was sending helping. She did tell me that I needed to roll Ella over just in case she vomited again so she wouldn't aspirate. Ella's legs were like concrete. Getting them to move was very difficult. I did get her to roll over a bit on her side though. The 911 operator told me help would be there soon. Once I hung up I immediately called Michael....he told me he was already on his way home. One of the boys had called him from the house phone. I also called Ga-Ga and told her to just pray. She initiated the pray chain at our church.
After around 3 minutes....I finally got Ella to grunt. It was shortly after that when the firemen showed up and came to check on her. There were 3 of them. They were asking me what happened and they were asking Ella questions too. She was able to say her name and what year it was. She was exhausted! They checked her vitals and they even checked her glucose levels which were normal. They asked asked her if she remembered doing the things I was telling them she did, but she has no memory of what happened.
At one point we were discussing if we should just take her to Mary Bridge or if she should actually go in the ambulance which hadn't even shown up yet. In the end they decided they wanted to take her in the ambulance because she would bypass all the emergency room protocol stuff and just go right into a room. I rode with Ella in the ambulance to the hospital. She still had a headache at this point and was feeling very tired.
We got to Mary Bridge and they got her in a room. Everyone there is just so amazing! We love Mary Bridge. She was very dehydrated so the first thing they wanted to do was get an IV in her. The doctor also wanted to get an MRI. The normal wait time for an MRI in the emergency room is about 6 hours. Ella ended up getting one about an hour after we got there.
By that point Michael was at the hospital. He had packed a back for me and Ella and brought the boys with him since they were so worried about their sister. Unfortunately due to Covid protocols they wouldn't let anyone under the age of 12 come into the hospital if they weren't a patient. So the boys had to sit outside with Zeke on a bench next to the doors to ER. We contacted Papa & Ruth and asked if they would be able to come get the boys and take them home. While Ella and I went for her MRI, Michael went out to sit with the boys and wait.
When we got to the MRI area in the hospital, Ella was not feeling good again. She was starting to breath really quickly again. The technician wasn't sure if she was going to be able to get the MRI if Ella wasn't doing well. I knew that this was such a gift to be able to get the MRI so quickly so I tried to comfort Ella and we decided that I would go into the room with her just to help. I had to change into a hospital gown as well in order to be in the room with her. Once we got in the room, Ella threw up again all over herself. We had to get her cleaned up and redressed, but thankfully after throwing up she felt better and she didn't have another episode! Her MRI was only about 5 minutes long and then we were taken back to her room.
By this point her headache was still there so they ended up giving her morphine to help with the pain. The order of things gets really mixed up in mind by this point. We saw the on-call doctor for the ER, we saw the registration lady that took our insurance information, we saw a Pharmacist that was talking to us about different seizure medications. One of the meds they were talking about putting her on had a high percentage of headaches as a side effect so that didn't make us feel good. And we also saw the Neurosurgeon that Ella and seen all those years ago. He even walked in and said....I remember meeting you guys years ago. It was like the exact situation I had planned for and it happened. He wasn't a stranger to us, nor were we to him! There was this immediate connection and common goal of figuring out what is happening with our girl!
Her Neurologist did say he looked at the MRI results and he wasn't impressed by them. Then he went on to say he didn't think that surgery was necessary and I was so confused. I asked him what he meant by they didn't impress him and he said...there wasn't anything usually that made him get excited about. Surgeons are so weird! :)
They did want to admit her for observation overnight so we were moved up to an overnight room. We ordered dinner for Ella, but she still wasn't super hungry. Michael went out and got me Jack in the Box for dinner and then he headed home for the night. The on-call Neurologist wanted to get an EEG done by 9pm so that got underway. It was all really happening quite quickly which even the staff were surprised at how quickly things were coming along. The EEG was hooked up for about an hour and then after that her and I were spent. We went to bed...thankfully the pullout chair was actually pretty comfortable. Of course like any hospital stay the nurses come frequently to check on you so the sleep you get is really broken up. Ella didn't sleep that great because she was hooked up to the IV and things were beeping, but she did at least get some rest.
The next morning Ella was actually feeling hungry so we ordered her some breakfast. She also go to watch a bunch of movies on the TV. I spent a good deal of the morning on the phone talking to friends or family. Michael came back, but I don't remember at what time. The on-call Neurologist came by to see us and she gave us her theory as to what happened.
Ella had a migraine, she was dehydrated and had lower sodium levels, she was nauseous and she was hyperventilating. All of this put too much stress and strain on her body so it reacted by having a seizure like episode and then she passed out.
The doctor said that basically everyone gets a "one-off freebie" seizure type episode in their life. The EEG didn't show anything worrisome at all. So they were not going to label her seizure as Epilepsy. They said they are very careful to not do that because once you have a diagnosis like that it will stay with you for the rest of your life and have major life impacts. Of course if she does end up having more episodes they will reevaluate and diagnose appropriately, but for right now they didn't want to place that label on her. She also told us that the one seizure drug we were worried about was off the table. She decided to put her on Topamax which in low doses helps prevent migraines and in higher doses can prevent seizures. So it's a win win really!
After the visit from the doctor it wasn't very long and we were out of there. Michael picked up Ella RX and then headed home.
Our sweet girl was feel much better than the day before! Such a difference from 24 hours before!
Going forward we were supposed to have an appointment with her actual Neurologist in 2 months, but he ended up wanting to see her earlier than that. He decided he wanted to go even deeper looking into Ella's condition. So the past few weeks have been filled with all kinds of appointments. Ella's gone to the Ophthalmologist to have her eyes dilated so we could make sure there wasn't excess swelling on her optic nerve. That looked great! Next Ella had an hour long MRI at the hospital. According to the findings that I read online in her My Chart records that looked good as well. Our next appointment is in October where Ella will be having a 48 hour EEG. We will go to the hospital get her all hooked up and then go home. The next day we'll have to go back to the hospital to make sure all the connects are still holding and adjust anything that needs it and then go home again. She'll come back the day after that and have the connections removed. The week after that we'll go back to the Neurologist and hopefully hear amazing news that everything looks great.
Right now Ella is taking Topamax twice a day, once in the morning and once at night. It did make her a bit tired in the beginning, but I think she's gotten used to it. She is also drinking more water to stay hydrated and we are using some of those electrolyte powders in her water which she really likes. So far she has not had a headache since August 19th which is an absolutely miracle!!!
Thank you for praying for our girl and please continue to pray for her that all these test will be normal and she won't have to do anymore. Pray that the meds keep doing their job and that we never have to go through another scary episode like that again. I'm super thankful that Ella has a great Neurologist that is being proactive and wants to be confident that we aren't missing anything.
Recently I heard a song on the radio that said....I don't know what tomorrow may hold, but I know who holds tomorrow! I know God's got this and He's going to take care of our Ella Grace. He's going to use this as part of her story for His glory and He is so faithful!
