As many of you know, a couple weeks ago Ellie started having these episodes of rapid blinking. This was very concerning to us and to her neurosurgeons because that was the only symptom she exhibited leading up to her major stroke last year. Last year they couldn't explain the cause of the blinking but after her major stroke it was thought maybe the blinking had been TIAs (mini strokes) prior to her major stroke. After her major stroke last year, she never once had a blinking episode until recently. So when it showed back up, we called her neurosurgeon who had us drive to Texas Childen's in Houston that day for an EEG and appointment with her. She didn't do the blinking during the EEG and the EEG showed no signs of seizures but we were told to put her back of the seizure medication that we had weaned her from over a month ago. Her neurosurgeon was concerned enough to offer to admit Ellie into the hospital that night in order to get an MRA the next day to look at her brain. Ellie just had an angiogram a couple of months ago where the blood flow looked great, so we told her we would rather just go home to monitor the situation and would consider an MRA soon if things didn't improve.
The next day Ellie came down with a virus that caused high fever, vomiting, a cough, and a runny nose. I know every parent is concerned about their kids when they are sick, but I can tell you my concern level about Ellie getting sick is much greater than my concern level when my other two get sick. The water, medicine, and formula we were putting into her feeding tube were oftentimes coming right back up and she had little desire to eat. She had just had an appointment with the chronic care pediatrician and nutritionist the week before and had found that instead of gaining weight she has been losing weight for the past 6 months so this wasn't exactly what we wanted to be dealing with right now.
Fast forward a week later (this past Tuesday), Ellie was still sick and had gone days with very little calories staying down in her belly. And she was still doing the blinking. She woke up from nap screaming so I went in to get her out of bed. When I tried to pick her up, her body was completely stiff and her back was arched. It was very hard to carry her like that but I carried her into the kitchen thinking that if I offered her some Halloween candy or an iPad that it might fix the problem. But no, she kept screaming, stiffening, and didn't respond to my offers. I then carried her to the couch and tried to get her to sit on my lap to watch a video on my phone. She continued to scream and arch her back so that she wasn't even able to sit. Instead I stood her in front of me and held the phone out for her to watch. She finally stopped screaming and started paying attention to the video. While watching the video she kept swaying back and forth, almost falling but just barely catching her balance in time. I held my arms out to surround her so that I could catch her should she fall. She started to scream again, stopped and her body shuddered. Then she took 2 steps forward and her body suddenly looked to go completely limp as she fell to the floor.
Now I am with Ellie pretty much every minute of every day and I see her fall a lot. I see her lose her balance and fall. I see her hyper-extend her knee because it's still weak from stroke, I see her trip over her toe because her stroke caused foot drop, and I see her throw herself to the floor because she's hurting or upset about something. There are only two other times I have ever seen her body go limp like that and those two times were the strokes I watched her have. So I immediately feared she had suffered another stroke. I immediately started assessing her and I could see that her pupils looked okay and I didn't see any signs of facial weakness. But her body seemed limp and I couldn't get her to sit up. I was terrified and called 911 but told them I wasn't sure if she had suffered a stroke or if this was a seizure.
I picked Ellie up and started walking around trying to find my shoes and wallet. A few minutes later I stood her up so that I could put my shoes on and noticed that she was able to stand and walk. The EMS showed up and I was relieved to see that it was my friend Joe. Joe tried to see if they could get permission to transport Ellie directly to Texas Children's Hospital but was told they were the only available unit and so they would have to take her to UTMB here in Galveston. Payton was able to stay with our friend Emma who lives next door and Skyler came with us in the ambulance.
At UTMB, Ellie acted herself. They wanted to do blood work and get an IV going but after sticking her 4 times we agreed she would need to wait to get to Texas Children's for an IV. Finally by evening Joe and his crew were given permission to transport Ellie to TCH. At the TCH ER they too wanted to get an IV on her and so we explained that no one is capable of getting an IV in Ellie except for VAT team, the TCH specialized IV nurses who use an ultrasound machine to see the veins. But the nurse insisted that she had to try before she could call VAT team. It's heartbreaking to see your baby poked again and again. They tend to insert the needle and then jab around for awhile trying to get it into the vein. Then when they think they might have it, they try to flush it with water but instead of it going into the vein it infiltrates under the skin. I've had this done to me before so I can tell you that IT HURTS. And Ellie had already had this happen to her 4 times that evening and we weren't interested in putting her through it once again. So Charles told the nurse, "You're not going to get it and when you don't you owe me $10."
The nurse didn't make the deal and stuck Ellie anyway and of course she blew the vein just like all the other nurses. So she called VAT team and when they showed up hours later, this nurse stood outside the only half closed curtain to our room and said, "Just a heads up, Dad isn't nice." I can't help but wonder how nice she would be if in the past year her baby had been poked again and again and again, being put through all kind of unnecessary pain, for no good reason. Unless you are God, you aren't getting an IV on this baby unless you have an ultrasound machine or she is under anesthesia. Period. And it's scary that UTMB, the hospital we have to go to in an emergency, are unable to get an IV in Ellie at all.
Thankfully the lady from the vascular access team was successful on the first try. With an IV we could finally be given a room so we fell asleep around 4 a.m. By 5:45 a.m. the first doctor was in our room to start asking us questions again. We were told they would do an MRI/MRA around 9 a.m. We always have the concern of Ellie being put under anesthesia because of the risks she could encounter with her moyamoya disease but this time we had the added concern of her having an upper respiratory illness and an uneasy stomach. Thankfully the anesthesiologist was reassuring about the illness not causing much of an added risk and she ended up having zero issues with the anesthesia.
Later in the morning, Dr Dauser (Ellie's neurosurgeon who invented the brain surgeries that Ellie has undergone) came to see us. He had just viewed her MRA and you can tell he is really thrilled with the results of Ellie's surgeries. He told us she had one of the most severe cases of Moyamoya disease that he has ever seen. Her disease was fast progressing and left her with basically no blood flow to her brain. But because her brain was so thirsty for blood, it took to the new vascular system immediately and now she has the best blood flow he has seen in a post-surgical Moyamoya patient. Because of those results he felt like the episode I described was likely a seizure. He mentioned possibly doing a 24 hour EEG but that it would be up to Dr Lam, Ellie's primary neurosurgeon.
A little later the EEG technicians showed up to do another 45 minute EEG. Thankfully Ellie had a blinking episode during the EEG and no seizure activity was noted on the EEG. Having caught the blinking spells during an EEG, we didn't feel there would likely be any benefit to putting her through a 24 hour EEG so we requested to be discharged. We talked to the neurologists who wants us to continue her current seizure medication and they said they would be in contact with Ellie's primary neurologist to get her take on things.
So Ellie got discharged last night and we were glad to get home to sleep in our own beds. We were also happy to get back to Payton who was thrilled to be able to see her daddy on his birthday. She is still a little under the weather from whatever virus it is that she's had for over a week now but otherwise she seems back to herself. I am beyond relieved that she didn't have a stroke and that she is doing well. I am praying that whatever it was that happened Tuesday afternoon never happens again. Unfortunately I'm pretty sure I will never stop worrying about Ellie and on weeks like this, that thought it especially exhausting. Thank you all so very much for the prayers and concern. It's reassuring to know of all the people who continue to pray for Ellie and to know that God is always in control.
