Last night was a rough one for Hope! She had two more seizures. Here are the details . . .
Hope was tired when she woke up to get ready for school Friday morning, understandably after the sleep-deprived state she was in for her EEG test on Thursday. However she had a good day at school and arrived in the afternoon with nothing notable. I sat down to do some homework with her around 4 pm, and noticed that her speech slowly became a bit slurred and difficult while we worked. I knew she was still tired and so I told her she could have a break and rest for a bit, before we picked back up on her homework. I told her though that I would leave her bedroom door open so we could listen for her if she started getting worse or needed to call us.
Within an hour, we noticed that her speech had deteriorated even more. She was also have occasional jerks with her eyes. We told her that she needed to come out into the open living area so we could watch her more closely. It wasn't too much longer before Hope's control of her tongue and mouth became so bad that she could not even move her tongue to form the slightest word. She could just nod yes or shake her head no and was using her hands to try to communicate with us. She finds this very upsetting and scary. I do too! It certainly takes us back to some really difficult and dark days where Hope was unable to communicate at all. Again, another reminder of how far our gracious God has brought her!!!
We took turns sitting at her side watching over her, and holding her hand so she could squeeze it to let us know something was wrong (her idea!). Gabi had just left to go to the youth skating night. Hope had her first seizure at about 7:40 pm. It lasted for about 1 1/2 mins and although she was aware during it, she was unable to speak at all. Her eyes fluttered really quickly and her mouth twitched at the same rate as her eyes. A funny thing was that her dad was sitting next to her, holding her hand, and when her seizure started, she raised her arm in the air (Does that sound familiar from the post "Sister Knows Seizures?!?!" Yep, little sister called it again!). He noticed it but it didn't catch his attention until he felt her squeezing his hand, and then asked her, "Hope, are you having a seizure?" She was able to nod her head just as the seizure took over.
Hope was able to talk again immediately following the seizure and seemed to be much better. We were relieved. Figured it was just related to her being over tired from the happenings of the day before. But about a half hour later, her speech started to deteriorate again. By the time Gabi got home from youth, Hope's speech was really bad again, and she could barely speak at all. We wanted her to get some sleep, but didn't feel it was safe to leave her without constant monitoring as she couldn't call for us. So we kept her resting in the living room in her recliner chair while I sat at her side and held her hand. We decided to start moving them towards bed and I was going to stay sitting with her in the bedroom for a while until she was asleep.
Before we could get her there, as I was talking to her, she started having another seizure at 11:00 pm. This one was really bad. It was only 1 1/2 minutes again, but it affected her breathing and was a really vicious seizure. She was making really awful noises and it was very scary, knowing that it was likely affecting her ability to breath properly. We were told by her neurologist to give her the additional dose of Ativan (a fast acting seizure medication) with a second seizure now. We did give her an Ativan after this seizure. We are also supposed to call the neurologist, after giving one. Of course it's the weekend, so obviously we can't call them. We do have the appointment with the pediatric epilepsy doctor in 1 1/2 weeks, so I don't think any changes will be made before we see him anyways, so not too big a deal, I think.
Back to Hope's seizure. . . she was again aware during the seizure but completely unable to speak. Today
when she was able to speak again, she told me that the terrible noise
she was making during the seizure was her inability to expire (breathe out) again like
the one seizure she had in January, as well as 3 years ago. She said
she keep sucking air in, which was the awful noise, but she couldn't
push any air back out. I hate thinking about how scary those moments
must feel for her. It's so different now that she is fully aware and
remembers it in detail. A praise for sure of her amazingly improved
cognition, yet also something that makes those moments much more scary
After the seizure, she started choking and coughing, as she started getting air into her lungs again. She spent a while coughing up stuff from her lungs afterwards, and we're pretty sure that she was aspirating or breathing saliva into her lungs during the seizure. After the seizure all the muscles of her airway, her mouth, tongue, and lips were so weak, it was like they were paralyzed. This lasted for over an hour! She could not move her mouth or tongue and was upset that she couldn't talk, but also was drooling as she couldn't control her mouth muscles. She also was struggling to even have the strength to cough properly and that's why I think she coughed for so long afterwards. This part of the night was the hardest for her. It was heartbreaking to see tears run from the corners of her eyes as she looked at you in desperation and fear because she couldn't breathe well and couldn't talk or move her mouth. Even the drooling was very upsetting for her.
We kept her up with us watching her closely until she stopped coughing and seemed to be breathing more safely. We put her bed around 12:00 am. We stayed up until 1:30 am, checking on her frequently. She fell asleep quickly but we were still concerned about her breathing, and just wanted to be sure she wouldn't have any more problems. Her breathing seemed more deep and relaxed by 1:30 am and so we headed to bed.
I checked her early this morning, and she was still sleeping deeply. And deeply she continued to sleep until I woke her for her morning dose of seizure medication at 9:30 am. I wanted to make sure her speech had recovered and that I was able to wake her. She did wake easily and although very groggy, she was able to swallow her pills as usual, and her speech had returned to normal! Ahhhh, music to our ears!!! We let her fall back asleep and she again slept soundly until we finally woke her up at 1:00 pm. When I did wake her then, I asked her, "How are you feeling honey?" Her response was great, "Well, my tongue is working to its full capabilities again!" I chuckled at her response . . . this kid has been around a LOT of medical jargon, eh! I then said, "Well that's good! You look like you were drugged though!" She again replied in her great matter of fact, yet oh so witty way, "Well, I feel like I've been drugged!" Indeed sweet girl, indeed!!!
Hope has stayed in her bed all day today. She has refused to eat all day. She's been happily listening to her audio book though! But she looks just wiped, with eyes half mast and completely exhausted. For sure the seizures wear your brain and body out. Also, I think she's still trying to recover from her sleep-deprived state on Thursday. So we've just been thankful for a day where she can try to recover, and are hoping and praying that she will be able to attend church tomorrow am and feel much more rested and well.
Well, I'm going to end this so I can finish a game Gabs and I started playing earlier and then get our girlies to bed in the next few minutes. We're hoping that Hope will be able to go back to sleep tonight after I give her the evening dose of seizure medication in a few minutes, even though she slept so late this morning . . . ahem, afternoon! We think her body and brain desperately needs serious rest! Should be a great reminder to all of us how important rest is for our bodies . . . how God created us!
Thank you for your sweet notes of encouragement and continued prayers, dear ones! We are so thankful for you as you continue to walk this journey with us! Please praise and thank the Lord for His protection over our girlie last night, as you also keep her needs in prayer. Trev mentioned to me earlier that these scary moments remind him that as we think and plan ahead for months, even years down the road and think about what we're working towards for our sweet Hope, and her continued recovery, we must never forget that every day, every minute is a gift from our gracious God. We need to live in today, and treasure each moment that we are blessed to have, not knowing what tomorrow holds. Plans are great, but only as much as we hold them loosely and don't get so caught up in them that we miss out on today! Matthew 6:33-34 says it best . . .
"But seek first the kingdom of God and His righteousness, and all these things will be added to you. Therefore do not be anxious about tomorrow, for tomorrow will be anxious for itself. Sufficient for the day is its own trouble."
You are loved, dear ones!!! Have a wonderful Lord's Day worshiping and serving our Lord of Lords and King of Kings!!!