Thursday, February 19, 2015

A Bit of a Set Back


     The last I updated on my mother, they were talking about weening her off the sedation medication because they wanted her awake and aware. They ended up just stopping it (which is okay, it is not a drug that necessarily needs to be weened). She woke up but she was not the same Lori she was over the weekend. Friday, Saturday, and part of Sunday my mom was sitting up, communicating, smiling, laughing, and joking around. Sunday night she had a 'anxiety  attack' (both Angela and I believe it was a seizure) and her whole demeanor has changed. Tuesday when I came in she wasn't sure who I was. After about five minutes she  remembered  but there was a while there she just did not know me. She was back to, if not worse then, when she first woke up from the heavy sedation a few weeks ago. All she could do was wave her hands around, she would attempt to mouth things but her mouth wouldn't really open up so there was no way of knowing what she was trying to say. There was no direct eye contact, her eyes were glassy and far off. Tuesday was a very hard day for my family. There was such a decline in her...everything, that it was so hard to be here.
     Yesterday (Wednesday) when I got here, Mom was sitting in a chair next to her bed. Which was a great thing to see! I came in and told her I was here, she mouthed to me that she hated her nurse and wanted her gone. My reply was I know, hopefully soon. Her nurse the last two days was not one of her favorites. When the doctors came around for rounds I listened in but as soon as they asked me if I had any questions or comments I cried. I have held it together with them but this time I just couldn't. I tried to get across that I was very upset about the decline in her mental health and that I thought it was from the episode she had on Sunday night. They said that they thought that the way she was acting was from all the medications she was on and that they were stopping and changing them around and that she would get better. All I could get out was I guess we will see before I turned my back and came back in the room. I told the nurse if there was anything I needed to know, such as a plan or something wrong to please tell me but I could not stand out there anymore. There is no point in my crying at them, it does not help them do their job nor does it help me. So I came back in and held mom's hand until I could gather myself then sat down for a few minutes. I say for a few minutes because all morning mom was trying to get up and go somewhere. She was very confused about her surroundings and what was going on. She kept trying to do something with her pillow, it looked like maybe she was attempting to sew something? She kept trying to open up her footstool (which does not open). She kept trying to mess with one of the things on her ventilator. All morning, I was having to tell her to sit down and stop touching stuff. She's been frustrated but yesterday she was angry. She kept threatening to punch me and the nurse (she was not saying this to the nurse though, she was just telling me). She was getting frustrated then it wold turn in to anger. It was hard to see because all I could do was try to calm her down and when I would do that she would say (and when I say 'say' I mean she would mouth the words) shut up, I am not five years old. I was glad that she was able to mouth things to me because on Tuesday she wasn't able to do that but she was not mouthing very nice things to me. She kept telling me whenever the nurse would leave that we had to go quick. Go quick? Yeah, go get the car. Then I would have to tell her that we had to stay here and she would get mad at me and try to push past me. She did not want to hear that she was attached to an IV pole and a breathing contraption. I just wanted them to put her back in the bed but since she has not been sleeping well at night they were trying to keep her sitting up for four or five hours then let her sleep, up for a few more hours then hopefully let her sleep through the night. Yesterday was very trying and exhausting but still progress from the previous day.
     Today when I walked in the first thing I noticed was mom was asleep with mitts on. I asked why and they said that they had attempted to do an MRI but she was turning and such so they had to sedate her (a different medicine then they have been using). They were getting ready to take her to the MRI. SO frustrating because the whole point of the last few days was to be getting all meds like this out of her system and they had to give her more  because  there was no way she was going to get a MRI without them. Which, I completely understand, it is just frustrating. Right now, I am just hanging out waiting for Mom to come back and for the doctors to do rounds to figure out what the plan is for the day.


   Just talked to the doctors. Last night when they attempted to do the MRI and mom was getting anxious about it, they gave her anxiety medication and when it didn't work they gave her a little more. It still didn't work and actually seemed to make her worse, which is why they had to sedate her so she could calm down and not cause herself any harm. They are thinking that the anxiety meds, from prolonged use in the hospital or maybe just randomly, has decided to have a reverse effect on mom and cause her to get more anxious and upset. This is just something that happens some times. The plan today is to ween her off the sedation and to start the process of weening her off one of her anxiety  medicines. Hopefully, we will see progress and since she is still in the MRI we won't have the outcome of that for a while. Most likely, I won't hear anything about it until afternoon rounds or possibly tomorrow morning. So, more waiting...

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Monday, February 16, 2015

Slow Progress but Definite Progress

     On Friday the 13th, Mom had a  tracheotomy after a failed attempt at taking out the breathing tube again on the 11th. Mom was not happy about it but after it was said and done she has been a lot more comfortable. The trach is hooked up to the ventilator and in order for her to get out of the ICU she has to be off of the ventilator. They have been trying her off the

ventilator with just trach collar. It is sort of like a mask that sits over the trach and puts out moist air so when she breathes in, it isn't super dry air.

"The nose and mouth provide warmth, moisture and filtration for the air we breathe. Having a tracheotomy tube, however, by-passes these mechanisms so humidification must be provided to keep secretions thin and to avoid mucus plugs." (Johns Hopkins Medicine)

On the 13th, only a few hours after her surgery she was off ventilation for two hours. On the 14th she was off ventilation for 12 hours, and yesterday she was off ventilation for almost the whole day. She's been doing great with her breathing! The site of the surgery (she had the trach put in, in the OR) is doing great.

     Yesterday we were able to bring up Haleigh to visit her. I explained to Haleigh that Grandma has a robot attached to her, helping her breath and making her feel better. At first Haleigh wasn't so sure about holding Grandma's hand, she just wanted to wave but she saw I was holding her hand so she did. It took her about ten minutes to be up in the bed laying with mom, kissing her, holding her hand, and talking a mile a minute. It was great to see the smile it put on both Haleigh and Mom's faces.

     Last night Mom had an anxiety attack (she had one the night before as well) and they had to up her sedation levels and put her back on the ventilator. It's frustrating because we have to back track every time we put her back on the ventilator. Plus it's taking most of the day to wake her up from the sedation that she's on at night to keep her calm. They've asked us for the last few nights not to spend the night, so she can sleep better. I don't know if the two or  correlated  or not yet. This morning in rounds we talked about her anxiety (obviously it sucks being in the ICU for 2.5 weeks), her being on the sedation medication is making it hard to communicate with her because it completely knocks her out and obviously she can't be off the ventilator while on sedation medication, and there looks to be some fluid in her lungs that they are going to try to get out today. Also, her RT (respiratory  therapist) noticed that she's not breathing as smoothly as she was so we are keeping her on the ventilator for a while today. They may do the trach collar later but for now she'll stay the way she is. I noticed her breathing seemed off and pointed it out to our nurse this morning as well so I'm glad the RT noticed it as well.

     The plan for today is just to hang out, try to get any fluid that's in her lungs out via expanding lungs with oxygen and medicine to make her urinate it out. They were talking about having a  psychiatric  come up and talk to her about the anxiety but that can't happen until she's actually awake. This damn medicine they use to sedate her is obviously needed but it knocks her on her butt for the night (which is good) and half the day (which is bad). There are talks of taking her off it completely and just using extra anxiety meds when needed. We'll see what happens.

     I don't like when mom has been sedated because she's not as mentally present as she has been and it's nerve wracking. Yesterday I was worried she was having a seizure because she stared off and didn't respond right away but two seconds after I had that thought she  responded. It was just her medicine that was making her daze out. Obviously, I'd prefer her to just be up and being a pain in the butt asking for mouth swabs, back rubs, and foot rubs. I know she has to have her medicine to help her it is just trying at times.

Continued well wishes and prayers are appreciated!

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Wednesday, February 11, 2015

Another Update, A Different Direction

     Things are going. Not as fast as we would all like the to but they are going. For the last few days we have just been waiting to see if the swelling goes down in her throat so the breathing tube could come out. Yesterday we heard a cuff leak - which means when they deflated the balloon surrounding the breathing tube they could hear her breathing around it. It was only a slight cuff leak but it was something. It earned me doing a happy dance, haha. The doctors decided during rounds that they were going to wait until today to attempt to take out the tube again. Only this time they were coming at it with a better plan. The plan: to sedate her because they think that her anxiety  definitely  didn't help last time. Then to stick a camera down her tube and see what is going on, what could be causing the inflammation. Then they would put a MUCH smaller tube down the breathing tube and pull the breathing tube out while leaving the smaller tube in. Then if she could breathe on her own for a few hours they would take that out. If she was still struggling to breathe then they would be able to just guide the breathing tube back over the small tube. Things were looking hopeful for today.
     I stayed the night last night (like I have every night, except one, when Wendy stayed) and was waiting for rounds. The doctors came around and we talked about what was going on and their plans for the day. Nothing had changed although today they weren't getting a cuff leak. They said that they were going to have a bunch of equipment and staff in the room so I couldn't be in there for the  procedure. Once they started setting up I went in to the family lounge to wait. Lucky for me I have a great friend who works elsewhere in this hospital and she brought me up food and sat with me for a while. Mom's nurse eventually came in and told me that it didn't work. They had to put the tube back in. They did find out what was causing them difficulties though. 
Apparently, her throat is fine, not swollen, it looks good but her larynx wasn't functioning the way it should. When you take a breath in your larynx opens and when you aren't breathing in it closes. Hers was doing the exact opposite. They have no idea why it was doing that but it does explain why they now had two failed attempts at taking the breathing tube out. I knew going in to this that if the outcome wasn't a good one then we would be talking about having a tracheotomy. I knew this would be completely devastating to mom but I was trying not to think about it because I was still hoping for the best. Unfortunately, that is what we are looking at now.
     It was a very hard day today. Not only had I been here all night but I was here until 3:30 in the afternoon with very little sleep and with Mom who was very upset. When she woke up from the sedation and was told what happened she was very overwrought. She is worried it will scare Angela and Haleigh. She's worried Haleigh won't love her anymore. She's just very depressed about the situation. I tried to reassure her that they do NOT think it will be a permanent thing but at this point there was no calming her down. I just tried to comfort her by reminding her we loved her, we were here for her, and that I thought things would be getting better.
     When I went home this afternoon, I was able to sleep for an hour or so, which I guess is better then nothing but now I'm back here. While I was gone (she is never alone, either Grandma or Angela is with her), the doctor came in and had her sign a consent form for the  tracheotomy. It looks like it will be happening some time tomorrow. So, now I'm going to attempt to sleep for a bit then we will see what happens in the morning. Please continue to keep us in your thoughts and prayers.

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Sunday, February 8, 2015

ICU: What has happened so far - an update for family and friends

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.
I sent Ang back to Sami's to call an ambulance and backup because I needed/wanted someone else there with us. I also called 911, which I got a glare from my mother about. I told her I was sorry but I had to. I kept telling her it would be okay and that I loved her. I thought she was having a stroke or a mini stroke. She was disoriented and flustered. I could tell she was frustrated that she couldn't get words out. Finally she looked at me, let out a big breath, and said oh my god (kind of like ..damn that was rough). But she couldn't say anything else. I took her blood sugar and it was 367. The ambulance arrived... when she saw the lights she panicked (I'm guessing?) And put her hand in the gear shift like she was getting out of there but I calmed her down and told her it would be okay and that this was for the best. They came up and attempted talking. She said okay and yeah a lot but I don't think those are the words she wanted to use, it's just all she had. She was able to walk to the back of the ambulance and get on to the stretcher. She was answering the same way 'okay' and 'yeah'. We started moving, they asked her to squeeze their hands, she didn't. They asked her if she could smile at them, she said yeah but she didn't. After a few minutes of that she dazed out, I saw the EMT thinking so I said I can see you're thinking something, what? He said  well  I'm thinking she's having a seizure. He pressed on her chest and she didn't respond. He did it harder, nothing. He leaned in to her and did really hard circles, nothing. As we were getting out of the ambulance she was coming out of it so I reassured her I was there and we were at UVA and they were going to help. They took her back to room 51.

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.
It was really scary, what if I hadn't been there? She has those mitts on so she doesn't touch the tube in her throat so there is no way for her to get a hold of a nurse if something goes wrong. They decided they were still going to go forward with taking the breathing tube out today despite this. One of the tests they do to see if she's ready is deflate the balloon surrounding the breathing tube and see if they can hear air coming through. They could just barely hear any air but they were still really hopeful. This is information that I wasn't made aware of until later on. I thought she had passed this test.

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.

It is not easy to sleep in a hospital, especially if all you have to work with is a chair that kind of reclines, a room that is FREEZING, and machines that are telling you how your mother is doing. Every time they went beep I froze and hoped they'd stop. By the morning my whole body hurt from tensing up.

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.

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