The Grandest Mal of Them All- Part 2
During the 20 minute ambulance drive over to Fremont the EMT kept checking her vitals. Her heart rate was now up to 155 so he put in an IV and started her on fluids hoping that getting her hydrated would lower it. Her temp had also gone up to 100.9. I just sat there and held her hand and talked to God. “Well, God, I did just tell you on the drive over here today that I release my kids to You. Is this what You were preparing me for? It’s okay God. If this is Your time to take her, I understand. She is Yours and You know best. I know You are for my good, Lord. I know that You will walk me through this just as You have walked me through horrible things before. I trust You.” I felt a peace that was so indescribable. I felt God sitting there beside me with His arms wrapped tightly around me. It was okay and no matter what happened it was going to continue to be okay.
Now, please don’t go assuming I’m some super spiritual, amazing, completely God-focused super being. I am not. Oh, I wish I was/were like that all the time, but I fail miserably ever single stinking day. But on that day, God had used my failing earlier in the car as I was thinking I had control over my children’s lives to prepare me for this moment. He had brought me to a place, on highway 99 earlier that day, of relinquishing my children to Him so that later that day on interstate 880 I could be calm and know that no matter what happened He knew what was best. I didn’t have to sit in the back of that ambulance and waste time wrestling with God. I had already done that wrestling earlier, so all I had to do in the back of that ambulance was hold my sweet daughter’s hand and rest in the assurance of Christ.
We got to the hospital just after 11:00. They wheeled her into an ER room while I gave the Dr the same run down I had given the first responders less then an hour ago. He ordered all the tests and over the next 45 minutes we had a constant turn around of people coming in and out doing tests, asking questions and a million other things that were unpleasant for this adult child of ours to have to endure. Just before midnight they came in to do the blood draw. They asked all the identifying questions... first and last name, birthdate. As I said her birthdate out loud I realized that within minutes it would be her special day and she would be 20. She had been completely out since the anti-seizing meds had kicked in. I informed the tech that it was just about her birthday and he was, unfortunately, giving her her first present which was a blood draw. He felt bad. Especially because he then couldn’t get a vein and had to keep sticking her. She was starting to become restless because, even though she was unconscious, she could still feel the pain, so a nurse had to come in and help hold her down so he could do the draw. I just kept whispering in her ear what a great job she was doing and that it was almost over and praying that it really was almost over. The nurse complained about having a bad back and how she was hurting standing like she was so I had to jump in and help hold my daughter down. As the clock struck midnight and the tech finally got a good vein, while I and a nurse used all our might to hold Gillian down, I leaned over and quietly sang “happy birthday to you, happy birthday to you, happy birthday to Gilly, happy birthday to you.” Not the birthday we were planning and yet here we were, in the ER, not together as a family (Howie and the kids were getting the room packed up and headed our way), not in a hotel room, not going to The Boardwalk.
Howie arrived at the hospital and came back and sat with Gillian while I went out to hug and check on the other two kids. Gillian was still out of it when I left her room and we were still waiting on all the test results. It was good to just sit in the waiting room and hold my kids. Nolan was pretty clueless as to what had just happened and was excited to be up in the middle of the night at a hospital. Lol. Emma is a slow processor like me so we were just happy to sit there together and talk about pointless stuff for awhile, I knew that sometime in the next week she and I would talk through all that happened and how we felt and how we were dealing with it.
Howie kept texting me updates as the test results came in. The kids and I walked out to the car where all the snacks we had bought for the trip were stashed and had ourselves a midnight snack at 1:00 a.m. That part was fun! At 2:00 Howie texted and said all tests were back and they were going to discharge her soon so I headed back to the room. She was awake now and had a little smile on her face when I got back there. My mama’s heart did a little happy dance. All tests had come back normal except her blood sugar which was high so they were running more tests for diabetes but those would take a few days to get results for. No need for us to wait around the hospital as all her vitals were back to normal and she was perking up. At 2:00 a.m. we were in the car ready for our hour and a half journey home. This is when we realized that Nolan, Howie and I had all now been up for 22 hours straight! That’s when it hit me how tired I really was. I told Howie that if he would drive home I would stay awake and keep him company. I figured he would actually enjoy the commute home this time as there would be no traffic. Normally it takes him over two hours to get home because of commuter traffic. Well we encountered road work and got stuck in gantry traffic and it took us Ivey two hours to get home. Geesh.
We pulled into the driveway just before 4:30 a.m, Howie and I had now been up for over 24 hours. We got every one in bed and then crashed out ourselves. Everyone woke up at about 11:00 a.m. Gillian was wiped out and spent her birthday laying on the couch. About an hour after she woke up she started throwing up and continued to do so the rest of the day into the next day, Sunday. She couldn’t keep anything down, had lost control of her bladder functions and was completely lethargic. She was also mixing her words up which was really scary. It reminded me of my dad after he had had his stroke. We also keep an eye out for regression after a grand mal. There’s always a little something but she usually gains the skill back within a week or less. But we were seeing a few things that were concerning so we just decided we would keep a close eye on her for now. Fortunately over the course of the day her speech returned to normal.
The on-call doctor emailed me on Sunday letting us know that her king X-ray had come back with some inflammation and if we noticed her having trouble breathing or coughing a lot to take her back to the ER. Well we weren’t seeing any of that but we did have other concerns. We called the advice nurse who asked a million questions and then got an ear full on what had been going on over the past 48 hours. She consulted the on call doctor who told us we needed to take Gillian back to the ER. At least this time we were in our town and we knew what ER to go to. We got to the ER and I have never seen things move so fast. They bypassed triage and took her straight into a room where they had waiting for her techs to do more X-rays, another EKG and more lab works, within 20 minutes all the tests were done and she had been administered zofran and we were just sitting there now waiting for more results. Less then an hour later the doctor was telling us that her lung X-ray was now clear, her blood sugar was normal and the only thing she suspects is a UTI but those labs would take a few more days. She sent us home with an antibiotic and zofran (I love zofran. It’s such a magical pill when it comes to nausea and throwing up.)
The first day of school started on Monday and we decided to keep her home for the first couple of days as she continued to recover. She still had no bladder control, but we were assuming that was due to the UTI. And she was exhausted, beyond. exhausted. Her poor body had been through so much in the last couples of days. She just needed to rest. I had been keeping in contact with her neurologist and her regular doctor since the seizure happened just so we were all on the same page with information and next steps. We were all assuming that most of what we were seeing was beside of a UTI and that that’s what caused the grand mal as a well. On Tuesday we got the results from the urinalysis back and it did. It show that there was a UTI. Ugh. This meant something else was going on and that her lack of bladder control was regression and something that would need to be relearned. The neurologist ordered an EEG to check for seizures wave in her brain, an MRI of her spine and brain and another CT scan (we just did one a couple months back) to check for brain damage from the 20+ minutes seizure. More tests. More waiting for results.
What we know today.....
-Her EEG came back showing seizure waves in her brain. This is the first time she has ever had an abnormal brain scan of any kind. What does this mean? She will have more grand mals. But wait, you said she has epilepsy so wasn’t that already a given? Yes and no. Her seizures are usually complex partial seizures which basically looks like she is a day dreaming. 99% of the time we don’t even realize she is having them. Even after her last gran mal 7 years ago, which lasted about 10 minutes, her EEG came back normal so the fact that we are getting an abnormal EEG now means recurrence of grand mals will happen. We normally can tell when a grand mal is going to happen but this one came with no warning signs except that she was super aggressive with her brother, which isn’t a normal warning sign. So we are now more prepared for recurrence. We have emergency meds on hand, a seizure plan in place at school and have told those who around Gillian a lot what to do if she has another one and how to administer her emergency meds. This was we can, hopefully, stop the seizure quicker which is easier on her brain and body and will keep us out of the ER.
-Her CT came back normal which is good.
-Her MRI came back with two findings. 1)The left side of her brain is underdeveloped. They consider this an “incidental finding” and say that, basically, it’s no big deal and nothing to worry about. 2)There is a calcification on the right frontal lobe of her brain. Where it is is a spot that could cause seizures. They need to do ore checking on this so next month we go in for another MRI and they will be injecting die into the arteries and veins that surround this calcification to check for blood flow. This will, hopefully, give us more information on how to proceed or if we even need to do anything.
-We are watching her right hand which has had some muscles issues since after the seizures. Neurologist said that the longer the seizure is the longer it takes for your body to recover. So it could take a month or so for everything to go back to her normal. If it doesn’t get better we will try some physical therapy.
-Bladder control is hit and miss. This is just something we my have to live with the rest of her life but we keep hoping and praying that it gets better.
I know this was a long post but wanted to get you all up to date because you have been so kind in asking how Gillian is doing. God has truly blessed us in this time and in the midst of all the tests and waiting and worrying I forced myself to sit and write down the list of blessings and there were many....
-It didn’t happen at home. No one would have heard her at home at the outcome would have been much different.
-Friends who stayed up all night praying for us and checking in on us.
-Howie was there when it happened. The last one I was home alone with the kids.
-Our amazing kids who sat in a hospital waiting room all night long and never complained once.
-Family bonding time in the midst of a traumatic event.
-A hotel room that fit seven firefighters, two EMTs and five Howards.
-Kaiser and their computer system that links all their facilities together so I don’t have to explain all of Gillian’s diagnoses every time we go in.
-Kaiser nurses. We had about six different nurses over that traumatic weekend. And each one was absolutely amazing and loved us well and took great care of Gillian.
-Primary and secondary insurance that takes care of everything so we don’t have to worry about medical bills.
-Friends who brought us delicious dinners and treats for Gillian.
-My special needs mom group who gets the lingo and the worry and the juggling of life amidst the chaos.
-Prayers, phone calls, texts, FB and Instagrams messages from so many amazing people. We never felt alone and always felt loved and cared for.
-The Howard 5. I am beyond proud of my family and how we all came together and got done what needed to be done while waiting for the paramedics to show up, after they came, packing up a hotel room and not forgetting one thing while I was in the ambulance with Gillian, and so much more. They really are all amazing people whom I love with all my heart.
-I know there’s a million more little blessings that I overlooked because God is just that amazing.