I have been trying to write down as much as possible, so I could remember everything later on because I know there are things I will forget. So here is what I wrote down on January 31st: Last night after a great family dinner at my Grama's, Angela, Mom, and I headed over to Samantha's to pick up books. Mom was driving, I was in the backseat and Ang was the passenger. We got the books and left. We were a few houses up the block when mom started stuttering. I immediately said to stop the car and park it, which she did. I got out and went to her door and opened it. I started talking to her but she couldn't respond.
They transferred her from the gurney to the bed, then she looked at the nurse like she was scared and/or in pain and she started seizing. She turned bright red, her right side of her mouth turned down, she was yelling/ choking out unintelligible sounds. I had to walk away, which I still feel ridiculously guilty about. There were at least six people there. I stepped in the hallway to catch my breath then I came back. Probably less then a min. I rubbed her leg and told her I was there and I loved her. I remember after she had the seizure her eyes looked like they were bulging, she wasn't moving her head or eyes to follow sound. She wasn't responding. They had to take her for a ct scan. I called Grandma who demanded that I shouldn't be alone and she was coming. Then I called Tyrone and asked him to pick her up and come in. Angela was home with Haleigh. I didn't want her (Angela) there if mom was going to continue to seize. She doesn't handle these things well. They brought mom back from the ct scan because she seized really badly and her oxygen levels dropped dramatically so they had to put a breathing tube in. I waited in the waiting room until Grandma came (Tyrone was parking). They almost immediately called us back to answer some questions. She was gagging on the tube and coughing. She was so uncomfortable, so they were giving her more meds to calm her down.
They were attempting to put in a line in her left arm and she kept trying to move away. I kept telling her I loved her that we were there and that they were helping her. She moved her head to look in my direction, which I was happy about. Then the woman doing the line did something and Mom tried to roll over to stop her. I thought she was going to deck her, I would have never been so happy in my life then to see that happen. I was just so happy to see a reaction, any reaction. They took her back to do a MRI, which lasted two hours. It seemed like it took forever! We went back to see her and were told as far as they could see it wasn't a stroke and there's no bleeding in her brain, thank God! They've put her in the ICU. I left last night at 4 am, they said rounds were between 8 and 10 so if I was leaving I'd want to be back by then. I went home, finished setting up my stuff for the craft fair. By that time it was 5:45 I laid down until 6:45, not sleeping because every time I closed my eyes I saw the panic in her eyes and her seizing. I got up, I wrote directions for everyone, called my Aunt and Grandpa to let them know what was going on, then came in to the hospital. They had her fully sedated almost like a medically induced coma. They didn't want to her waking up until they could find the reason for the seizures. They did a lumbar puncture among other tests to try to figure out what was going on. They started her seizure medication at 6am on the 31st. The EEG machine that she was hooked up to showed she had multiple seizures throughout the night and up until they started her on the medicine. They weren't seizures where she was shaking though, just ones the EEG picked up on.
My update on February 1st was: The plan for today is to drop her sedation 1mg an hour. We will be looking to see if she has any seizures (if she she's the meds go back up). Hopefully the breathing tube will come out and we will see her open her eyes. Today we are waiting and seeing how mom reacts.
My update on February 2nd was: No seizures since 6am on the 31st. This morning we've got her to open her eyes (no direct eye contact, but they are open! ) and respond to things like lift this arm, lift that arm. She still has the breathing tube in. They are taking her off one of her meds to wake her up more to do a few tests to see if we can take the tube out. It's still a waiting game but things are looking better.
Before I went to bed that night, I updated with: I'm exhausted. Long day. The plan was to lower her remaining sedative and get her to do a breathing test then take the breathing tube out. She got way too agitated, her breathing quickened so she wasn't getting enough oxygen and her blood pressure went way up. She also was trying to get up and throwing her arms and legs around. She kept trying to throw her legs off the side of the bed as leverage to get herself up and out of bed - even though her eyes were closed through most of this and she wasn't fully aware. It just wasn't good. So they changed to a diff medicine and decided to keep the tube in until tomorrow morning and reassess. The medicine combined with her blood pressure medicine sent her blood pressure way down 60/30. They had to stop the meds completely. We had to watch her then at first sign of her moving/agitation we had to call so they could start it slowly. We did, They did. Her pressure is back to normal. She's responding to open your eyes, move your toes, squeeze my hands. When she's attempting to take off mitts or mess with the breathing tube, I put her arms down and she gets frustrated with me and throws her hands down, pushes against me, or swats me away. She's still semi sedated so not a lot of eyes opening and she's not leaving her eyes open. So I'm headed home for the night and I'll be back 7ish to make sure I'm here for rounds.
February 3rd was when I started to see there might be a light at the end of this tunnel. My update was: God is good! I came in this morning and mom looked at me and mouthed around the breathing tube "out" I said soon and she threw her hands down and mouthed "no, now" then she asked what happened. I told her a basic "you had a few seizures and we brought you to the hospital." The breathing tube is bothering her but she's doing great! They will take out the the tube soon but not today because there is a little bit of fluid in her lungs.
February 4th's update was not a big one, there was more fluid in her lungs then the day before so they were concentrating on that, no tube out.
February 5th was a very hard day. I was sitting with mom and she coughed a few times then started obviously struggling to catch her breath. I pressed the call button saying I needed someone to help me move her up because I thought her being scrunched down in the bed was a contributing factor to her not being able to breath. I saw that there was some mucus in the breathing tube but I didn't think much of it. 30-45 seconds and she the struggle was getting worse. I had to run in to the hallway and yell I need someone now! Not only was she struggling to breath but she was panicking (obviously). They came in and immediately bagged her (took the part that sends the oxygen in to the tube off and put a bag that they manually use to get in oxygen). It took around 10 minutes from start to finish but they calmed her down and hooked everything back up. They said they thought it was just some mucus that created like a plug.
When it was time to take the tube out it seemed like a lot of people were in this tiny room. The nurse, two respiratory therapists and a RN. It was a very quick process, they deflated the balloon told her to cough and pulled it out. She said ow then turned to me and said get me a f***ing soda (her mouth has been really dry and she's been asking for a soda since she woke up)! Then everything started to go downhill. She lost her breath, so they started a breathing treatment but she was panicking because she couldn't get a breath in. She kept looking at me and mouthing I can't breathe, I can't breathe! So I said 'guys she's freaking out because she can't breathe" They were calm and collected and said they were handling it. I reassured her then I stepped away from the bed because more people were coming in. By this time my Grandma had gotten there. We stood outside of the door but I kept looking in so Grandma made me switch places with her so I wouldn't keep peeking in. After a minute of me standing there trying not to freak out, a few more nurses rushed passed us and in to the room. That's when Grandma pulled me away and we went to the nurses desk to let them know we'd be in the waiting room. She said she was pretty sure they were putting the tube back in. I cried. I have been pretty good at not freaking out but watching her struggle for breath obviously upset me. We went in to the waiting room. I have no idea how long it took because it felt like forever before they called and told us we could come back. We came back in and she had indeed been re-incubated. She was scared still. Apparently, she turned blue, which is terrifying. Absolutely terrifying. Mom has a card that has the letters on it that she points to and all she kept telling us over and over was how scared she was/is. I asked mom if she was okay with me leaving for the night and she said she wasn't. The reason I asked was because I was so nervous about leaving her. I didn't feel right. I mean what if she coughed something up and it got in her airway again. There is no way for her to call for a nurse. She has to just rely on them looking at the monitors. I just was very anxious about it and she was too. So we decided I was going to spend the night. I went home and got some stuff, ate dinner and came back.
February 6th and 7th were a lot of the same thing. Waiting and seeing what happens. We need the swelling in mom's throat to go down, we need to be able to hear air when they deflate the balloon surrounding the tube, we need her to be as calm as possible. They decided to change around some of her medicines because after what happened when the tube came out she was super anxious. It seems to have done the trick because she is much more calm the last day or so then she has been.
Today (February 8th) we found out that mom's fever had spiked through the night (I have been spending the night since the day the tube came out and went back in), they sent out a culture and it came back that she has strep throat. Well no wonder she's complaining her throat hurts! She has strep AND a breathing tube. UGH! My poor mommy. She's doing pretty well. She's frustrated because she just wants to be better and home. She's tired of the breathing tube. Our cousin Wendy came down from NY and I think that really cheered mom up a lot. I'm so glad she was able to come. Not only did it cheer up mom but it allowed us (Grandma, Angela, and myself) to take a longer break. Tonight Wendy is spending the night with mom so I can sleep in my bed tonight. I'll update more when there is more to update. Let me just say that it's been a long road and we still have a long road ahead of us but mom is here, alive, and functioning. She completely understands what's going on around her. This is more then I could have ever hoped for! If you are the praying type, please keep her in your prayers.