That is so wonderful!!! How great that she still sounds like herself and still has her own humor and personality. I'm so happy for you. Still thinking of you, your mom, and your dad. What a tough time y'all have had but together y'all are getting through it. (((HUGS)))
Let’s see, what has been going on with Mom? I feel like the further along I get in the pregnancy…the more procrastination I do.
Mom has been really just doing the same for awhile. No huge changes really. There are days that we go see her and she is totally “on”…..and there are some days when we see her, and she is tired and in a real relaxed mood and very sleepy.
My SIL went with me to see mom on Monday night. It was the first time she went with me. I acted like my normal self with Mom….you know, I kept giving her a hard time…and she would laugh at me and respond well to me. My SIL realized that you don’t have to walk on eggshells and be all soft with her. So that loosened my SIL up a bit and she started to have fun with mom too. I think that’s why her and my brother wouldn’t go see mom as much…it’s hard to stand there and think that Mom is not there. It would make anyone depressed and not know what to do. Well the next day, she took my 2 year old rambunctious nephew to see mom. I guess my mom was totally into having him there. Now, he tried to tear that room apart from one end to the other. The nurses were laughing and so was the lady who sleeps on the other side of the room. Mom was enthralled with him. Every where Jason ran, mom would follow him. Jason would jump up and try to crawl on her bed, push buttons on her machine, yell out….mom would laugh and laugh. She even raised her arms to try to take him out of my SIL’s arms. My SIL was really motivated, I could tell, by mom’s responses. She has brought the 10 and 5 year old girls to see her…but the girls are more afraid of mom right now. Afraid of seeing her like that. So that’s why my SIL brought Jason while the girls were at school. My mom’s whole world is her grandkids…I’m so glad she was excited to see Jason. The nurses could tell a difference in mom while he was there.
On Tuesday, I had my Dr.’s appt. I called Dad for an update on Mom and he said they were all going to dinner and wanted Brian and I to go. I told Dad that I wouldn’t be able to go see mom then. So he ended up going to see her before dinner. I told him I didn’t want a day to go by where she has no visitors. Well it was a good thing, because when he walked in, Mom was sitting almost straight up. WTH! She was hunched over on her side; the trach tube was stretched out. She was sobbing like crazy and tears were just falling out of her eyes. She was obviously in so much pain. Dad freaked out and laid her down so she was almost flat. Mom went into a horrible coughing fit. She has been coughing really badly lately. We think it may be because she is even more aware now…and she really knows that thing is in her throat. Hence, coughing spells. Who leaves someone with her heart condition, in a position like that????
Her coughing gets so bad now that she chokes almost, she turns beet red, and her eyes almost bug out. Poor mom. The RT is going to get the doctor to give her some kind of steroid to help. Dad went to get the nurse and raised heck about the condition he found her in. She also was so wet with sweat. They didn’t change her sheets and clothes because of her coughing. Just hearing about it made me nauseous because I can’t imagine if this happens more frequently. With mom more aware, she must have felt so helpless. I hate that feeling. Do we need to be there 24/7 so this doesn’t happen again???? Dad said her oxygen saturation was really low and her heart rate high. After she was properly lying down….she went back to her normal. What really makes me upset is that her alarm for her respiration was on. So there was a light above her door. Any nurse that was in the hallway could see the need to go in there…knowing we weren’t there. What if she had a heart attack or something….and no one went in there to check on her!!!! Grrr. Her alarm does go off frequently whenever she laughs or coughs. The nurse will sneak in behind the curtain and reach around and turn the alarm off without actually checking on her when we are there. That makes me mad, but I guess they figure we are there. Her alarm just beeps a few times, then the light stays on and the hallway light goes on. No loud noises like there were at the hospital.
Last night Brian and I went to see her around 7pm. She was sleeping when I walked in. It seems so weird to see her sleep now. At first, that’s all she did….and now when I walk in, she is usually awake. I went over to bug her to wake her up. I’m so bad. Well she was so funny because she would open her eyes and then close them again. I kept teasing her to quit being rude and look at me….what did she do but laugh at me with her eyes CLOSED! She would respond to everything we would tell her to do….., but with her eyes closed. I kept telling her what a lazy brat she was. She would just laugh at us. She lifted her hand several times to try to touch my face. I told her to quit punching me and again…she would laugh. But she got real serious about touching me and actually made it to my face several times. I made it hard for her to reach me too. I’m so proud of her. Again, she kept her eyes closed for most of it. ha ha. She is still shaking her head with a slight yes and no in response to questions. She still laughs at the appropriate times and rolls her eyes at things. She has been trying to move her legs too…but they are so shaky.
Today my dad, brother, and sister-in-law went to see mom. I guess they brought the kids to see her. Mom was so excited to see them. The 2-year-old is a typical boy…into everything. He was running around like crazy and mom was following him and looking at him. He ran up and down the hospital room. Well my brother and SIL have not heard mom talk yet. They tried the speaking valve one time and mom didn’t really say anything. That has happened with me one other time, where she didn’t talk much.
So they RT put the valve in and mom was a rockstar today. She talked up a storm, especially with the kids there. My dad was tripping. She said:
“Hi”, “Hello”, “Goodbye”…
“I love you” after my niece said it to her.
My dad asked her what his name is, and she said “Walter” and laughed. My dad’s biological name is Walter. But he hates that name and goes by Skip. So that’s why it was funny.
When Jason started crying because my brother was telling him to stop...mom couldn't see him. So she turned her head all the way to the side to look at my SIL and asked, “What’s wrong with Jason?”
She started crying when they were saying goodbye to her. Tears were actually coming out of her eyes.
My dad said that he was now having to run my grandpa (my dad’s dad, but like my mom’s dad) around to do errands for him (that used to be her thing to do) and she said, “yeah, I was wondering about that.”
Dad asked if her arm hurt her and she said, “yeah”. She was propped up weird and her arm was supporting all her weight. So dad helped her move.
They are starting a huge program with mom. First, she gets speech therapy 3 times a week. She is getting more physical therapy. Dad and I are going on Saturday to meet with the PT. She is going to show us how to stretch her properly when we see her. They are being more aggressive about weaning her off the trach. She is up to 3-4 hours of breathing on her own.
I can tell that she is gaining strength slowly. I just can’t believe these huge jumps she makes. She’ll kind of stay the same for a week…then she will show bounds of progress. It’s going to be an interesting ride.
My uncle called my dad and is going to move out here after all. He is staying with my dad and going to work with him. I am SO HAPPY. Dad really needs someone…and we’ve been trying to get them to come “home” for years. They moved back to MA for my uncle’s mom….now they will be moving here. I think it’s going to be a good thing for everyone…including mom. My aunt might come back out to see her in the next few weeks. I’m so happy about that. She will even get to see the baby….I’m due in two weeks! So my aunt has my nephew who is finishing high school this year….and joining the Navy afterwards. So as soon as school is out in June…I’m sure they’ll move out and probably stay at my parents until they get a place. Woo hoo!!!!!!
High fives to your mom from Alaska!
I can't read your posts without feeling happy!
High fives to your mom from Alaska!
I can't read your posts without feeling happy!
Well my dad picked up my uncle today and it is real good to have him around. Dad is going to take him to see mom tomorrow.
The last few days, mom has been funny. She is usually sleeping when I walk in. Then when I bug her to wake up, she keeps her eyes closed and just laughs at me when I give her a hard time about it. The Physical Therapist (PT) sat with Dad and I on Saturday and showed us how to do the exercises on some paper he gave us. Apparently, the Head PT wants us to focus on her upper torso. But I asked about her legs because they are soooo shaky and he also showed me how to do the same exercises for her legs as her arms...just modified slightly.
So when I was there today, she kept resisting me when I was trying to stretch her out. Again, with her eyes closed. Yet, when I spoke about a family member or friend of hers...she would open her eyes and look at me while she listened. I kept teasing her that I must be so boring because she won't even look at me anymore....little stinker.
So I put on some gloves and got some A&D ointment and massaged her fingers straight for awhile. Then I put some lotion and massaged her feet. Her skin is starting to flake off her feet. From all those years of going barefoot. Within months, she'll have smooth feet again...all her callouses gone. I stretched her feet to keep them from pointing straight. That's something else we have to keep up. If we don't stretch out her fingers and feet (the nurse does it also during the day)...then she could end up with contracted and bent up hands and feet....and I don't want that to happen. Dad also does the same routine when he visits.
So now we also have to move her shoulder, elbow, and wrist joints in all directions.....Again she resists me. If I pull her one way, she pulls the other. Then she keeps her eyes closed and laughs at me when I get on her about it. Brat!!! I need to remember to set up another appointment to get her hair trimmed again. I don't want it to get bad again. When she is sitting up in a chair, then we'll let it grow out for her again.
She also kept trying to talk to me. So when she wanted to say "yes" she would again, push air out of her trach in such a way that it would make the dolphin sound. So I gave her a hard time about that too. She enjoys it.
Other than that, nothing really new. I think my Sister In Law is going to bring the kids by to see her tomorrow. So it wil be interesting to hear about that.
Sounds like she's doing great and is SO blessed to have you and your family taking such good care of her...and protecting her!! I can't wait to hear what her first interaction with Dylan is like!!
Sounds like she's doing great Teresa, just wanted to let you know i'm still thinking of you and praying!
Yeahhhh Mom! I'm so jazzed for you all-- even on a molecular level your mom is determined to get through this. What an amazing woman!
One of my fave bloggers is here-- he's going through this http://madmikey.mu.nu/ Another blogger is keeping us updated on his progress. Before this happened his blog was interesting and now I am glued to it and praying for his recovery!