Where do I begin. I have been completely MIA for awhile. Monday night we had our breastfeeding class, Tuesday night we had our child prep class, Wednesday night we went grocery shopping at Costco's, Thursday night we went over to my mom and dad's and had Carne Asada... mmmm.... then Friday we came home and ate first, went Christmas shopping then we went to see mom late at night. So here I am today. I have been so exhausted getting all of that accomplished and trying to get my stuff done in the classroom before the Christmas break that I haven't spent much time here on my journal to post about mom.....
Well so much has happened this week. We found out on Monday that we had to find a place (nursing/rehab facility) for mom by Thursday this past week. I guess they figured she was stable enough to move her. She is off IV and her BP is really doing well. I honestly think they want the bed space because the place is over crowded.....okay maybe she is really ready and it's me that isn't ready for her to move on. I know it will be better for her....but I'm so nervous about this next stage.
So my dad was given two options (those were the only two places Kaiser would cover that do respiratory care) and he and my SIL went to visit both earlier in the week. One was a dump and made my dad break down and cry, knowing that he would have to put his wife in a nursing home. The other was the better of the two...although nothing spectacular.
Kaiser put her feeding tube in her belly on Tuesday. That went really well and they did it at her bedside. So her face is completely clear of all tubes. She looks so much better...although she still does not look like my 'Mom'...if that makes any sense. Without her personality and her smile and laugh, without her jokes, it's not the same.
So Thurs. came and they moved her. This place is supposed to be a good rehab place. They are going to try to wean her off the trach/respirator completely. They plan to do physical therapy on her and eventually be able to put her in a wheelchair and move her outside for a bit to get some fresh air. They have a beauty salon and my dad has made arrangements for her to get her hair cut. She has a big rat's nest on the back of her head. There is no way to comb it out (I've tried almost every day since I found it). So we figured if we cut her hair to like shoulder length or shorter...it won't be as hot and sweaty for her. I think her hair is the least of her concerns....although selfishly I don't want to go too short because I still want her to look like her....ya know?
The podiatrist came in and told my dad that she needs her nails cut. I guess because she is diabetic, she has to have them properly cut by the doctor. That's fine with me because it seems so much healthier...especially when they prick her finger everyday to check her blood sugar.
More in the next post.
So because of her move on Thursday, I didn't go and see her. I had to wrap all of my "kid's" gifts from me that night too. Dad seemed really down when we had dinner with him. I can completely understand why. I don't think he's sleeping in the bed at all. The living room table is stacked with mail and papers. He has lost weight.....although he tells me he is eating. I am so glad my grandpa is at least there with him because I can only imagine how much further he would sink without mom. I can't help but worry about him, ya know? He didn't seem too thrilled with the place mom is at and said that he already had to get into it with the doctor (who is from Kaiser by the way because they are still paying for this). The doctor.....AGAIN...wants to know about resussitating her. GRRRR!
Well when DH and I went Friday night to see her...I can totally see why he would be down and out. It is not a hospital like setting. It is a rehab facility. She is in the sub acute section because she has the trach. The place has that "nursing home" smell to it. It's an older facility (that's not to say that they aren't good). The room that mom is in has a total of 3 beds (she had her own room in the hospital). She at least is by the window. It feels really stuffy and overwhelming in there. She doesn't have all the regular "hospital stuff" hooked up to her. No big machines for me to look at (not needed anyways, I'm sure....).
Dad is going to bring an extension cord in to plug in her fan....she is always hot and sweaty...even before all this. My brother already hung up pics of his kids and we have an u/s pic of Dylan up there.
Now for mom's behavior. She is moving her legs up and down on the bed now. Meaning she bends her knees and slides her heel up and down on the bed. She can also lift her leg and cross it over the other leg now.
She can pull her arms up to her chest still..but she is still posturing herself (meaning, she still has her hands in fists curled up to her chest). There are times when she will have them relaxed by her sides. She is turning her head on her own and about 6 out of 10 times will 'look' at me when I'm talking to her. She is also still moving her tounge around in her mouth and making some grimacing faces. The nurse at the hospital, before she came here, said she was tracking her around the room....you know, follow her with her eyes and the nurse did stuff in her room.
The same nurse said that she couldn't believe that this was the same person that the first and only neurologist wrote about in her chart when she was first brought to Kaiser. She recommended that another neuro check her out. Mom would turn her head if you said her name out loud. Well I was visiting her at Kaiser in her regular room, when this old guy comes walking in...he looks like one of those doctors who does house calls back in the day....he said he was here by request and why did we request him (mind you, he was very sweet) and what did we want him to do. Are you kidding me? I'm not the doctor!!!!! He spent only 3 minutes with her and he left. Well he asked her to stick out her tounge and I couldn't see if she did or not. So after he left she was staring at me and had a look of confusion and seemed scared. So I told mom who he was and she seemed like she had a heightened level of arousal. So I thought....hmmmm...and asked her to stick her tounge out...SHE DID!....and I told her to keep it out.......then told her to put it back in....SHE DID...then I kept saying 'keep it in, keep it in'...okay, stick it back out...SHE DID....I couldn't believe it. She was following my directions. So who knows what was actually going on...but it was pretty neat.
I went to see her today and she was the same as Friday night. The nurse came in and said she was going to give her a bath. FINALLY!!! I've been waiting for someone to wash her hair and bathe her since Day 1. So the nurse went to get some supplies and came back and took her temp in her ear and put a wrist blood pressure monitor on her. Well as soon as she took it off, DH tells me to 'look quick'.
Now I have never seen what I'm about to tell you on anyone I have loved so deeply. Mom was looking straight at me and she was "crying" out loud with her mouth wide open. Her eyes wide open. And she was making these awful sounds thru her trach. It sounded like horrible sobs. She had a look of horror on her face. It looked like the faces people make when they are getting strangled. I will never forget that look. It scared me so bad. I just kept telling her 'it's okay' and 'what's wrong'....I didn't know what to do. I've never seen a look like that ever.
Luckily the nurse was right there and I asked her what was going on. Since she was a CNA, she didn't know. So she said she will get the RT. Well he was very nice. He came in and told me that the sound was normal for the trach...I said I wasn't worried about the sound...but I was worried about the look on her face. He proceeded to tell me that it really was normal for a person with brain damage from lack of oxygen to go through all kinds of emotions. Her brain probably drew out a memory and it elicited that facial expression and emotion. He likened it to a dream/nightmare where you break out in a sweat....she was all sweaty. He took her oxygen and heart rate...and it was all normal.
I felt like she just became aware of what happened to her and what was done to her....etc.....and she was horrified about it because she couldn't do anything about it. Almost like a "why me"..."what's happening to me" kind of thing. Chances are she still hasn't really connected what's happened to her and that her mind was doing it's own thing. I just did not like it AT ALL!!!!
So DH and I went out to wait for her to finish her 'bath'. I was bawling and scared. DH made me feel better and let me know that she has made lots of changes this week and this is one of them. It may be a good thing that she is showing emotion. It may be just the thing to snap her back to "reality". He's right. Just the touch of the plastic monitor, elicited that response. I called my dad to warn him about it, so he wouldn't freak out like I did. Apparently it happened to him 3 times yesterday (I thought he sounded extra depressed when I talked to him yesterday). He had the same reaction and freaked out like I did. It affected him the same way and scared the crap out of him. What a YUCKY and HORRIBLE thing to experience. I knew that people with PVS would show emotion and cry...but I never thought it would affect me the way it did when mom did it. I feel sick to my stomach about it. I know it could all very well be positive...but it still sucks!!!!!
So we went back in the room after her bath. She looked so much better. She was back to her usual relaxed state and looked at us and was more mellow. I wonder what will happen in the days to come? They want to monitor her for a few weeks and then set up a rehab and therapy schedule for her. So hopefully...we'll see more changes when that happens. I just need to remember it takes baby steps and those steps come with some nasty tumbles sometimes.
I'm off for two weeks, so I'll get to see her during the day more and not at night all the time. I'll also be more consistent with my posts.
Thanks for the continued prayers and for listening. Love ya!
Just checking in on your mom! We are praying for her and especially your dad. I read this out loud and my 9 yo said, "That poor man! I just want to hug him and make :fairy: his wife all better!" Then she crossed herself and turned to St. Rachael and asked her to go visit your mom. . . St. Rachael is pretty cool. With this dd I was a divorced, single mom of two when I got pregnant and right before I was to get an abortion, the saint made her presence known to me and I didn't do it. I can't promise miracles for you but I love the saint and dd is praying with her.
Don't sweat the facial expressions. Keep talking to her, keep telling her what has happened and that you are working of helping her and keep massaging her hands and feet and the rest of her body if you are able to. I was a CNA for a while and I saw this.
Encourage they give her showers-- running water makes you feel alive. It's a pleasant experience. Also-- can you brush her hair? That is a sensate feeling. I am not guaranteeing miracles or even suggesting these will lead to them, but I saw many families do this and it helped them.
Oh my goodness, Teresa. What a crazy, crazy week you've had!! Not on the same level at all, but I remember going through all of those placement changes with my grandpa. It's HARD and EMOTIONAL, I know. I wish there was more to offer than just this overly used
but know that you are prayed for daily and loved by so many. I'm so, so glad that your hubby is such a great support for you, and you're doing such a good job of making sure dad is hanging in there. Love you!!
Wow Teresa. Up and down go your emotions. Sounds like things are going well though with mom. Sounds like she is definitely making progress which is so good to hear. I'm so sorry about what you went through the other day. I know that must have been very difficult for you. Hopefully you won't have to see anything like that again.
How are you feeling, doing, etc? Are you getting plenty of rest?
Big hugs to you and your family. I agree with Tara that your DH sounds like a wonderful man. Give him a big hug from all of us for taking such good care of you!!!!
With much love~
Wow. I can understand why the crying and her frightened look would elicit such a strong response from all of you--it must have been so hard to see. But on the positive side, it seems to me like a sign that there is a part of her in there that realized what had happened to her, and she was terrified. I'm sure your mom is "in there" and just the very thought of her current situation has got to be frightening for her. But the good thing is, it sure sounds like she is aware and becoming more awake all the time. Keep thinking good thoughts, Teresa. You guys are showing such amazing strength and support for your mom.
You really did have a week of emotions going up and down, bless your heart. I can see how you feel down about them moving your Mom, in a way it feels like "Well they don't worry anymore, they are just moving her on to someone else to get her out of the way" I felt the exact same way when my Dad was put in rehab, something about being in a hospital and being in a rehab center was different to me..hard to explain, I know you feel the same, but I do know what you are going through there.
Not a day goes by that I don't say a prayer for you, your Dad, your Mom, and the rest of your family and please know that it will continue.
Bless your heart! I wish that you lived closer so that I could come up to the rehab center and be with you. I know how emotional this is for you and how difficult it is to see your mom in this situation. I am praying that all of her responses are signs that she is returning to you and will live a healthy life with you and your family. My situation with my mom was different but watching her suffer and slowly die was agonizing especially the last 2 days when I wanted so much to talk to her and her respond and she couldn't. My heart breaks for what you and your family is going through. Keep talking to her and interacting with her. She hears you and sounds like she is responding to you also. You are the light for her right now and I bet that she is relishing your time with her. I hope that your dad will keep strong. I can imagine that this is hard on him but he needs to keep his strength and eat and rest. Take care of yourself also. It sounds like you are doing a great job! Your love for your family will get them through and carry you through also. I am continuing to keep you and your family in my prayers. Take care of yourself! Lots of hugs and love for you and your family!
Theresa, You & your family continue to be in our thoughts, hearts, & prayers. Please keep the faith that things will get better, and the "bad" days will be balanced with the truly miraculous days. Your mom is a fighter, and I believe she knows that you all are right there beside her fighting for her as well. Keep your chin up and never stop fighting!
This nursing facility that mom is in...really is the pits. It has that "smell" to it. I wish that we had more money to put her in a place that is like what you see in the movies...ya know? At least we would have more options on where we can put her. Kaiser only gave us two options. The one she is in is the better of the two......I guess the two options were the only ones that do respiratory care. I wonder if when mom gets weened off the respirator....if we have the option to put her somewhere else. I'm not saying that the staff may not be wonderful here...but the place is old. I guess newer isn't always better...newer places could have worse staff. I would never tell dad about my concerns...because I know that it kills him to have to put her here anyways. If he knew I had the same feelings as he does about the place...he would probably feel even more guilt (even though there is nothing we can do about it, but be her advocate when we are there). Like I said, they have been nothing but wonderful with her since she's been here.
Well to date mom went from laying in bed with her eyes barely opening, no movement, no reactions...to the following....now she can:
1. Moves her head back and forth on the pillow. Looking side to side. Today she actually was trying to lift it off the pillow and succeeded once.
2. Keeps her eyes open 80% of the time.
3. Today she started tracking me around the room with her eyes. The nurse at Kaiser said that she did the same to her. It was the first time I have seen her do it.
4. Coughs, yawns and gags by herself. She tries to clear her trach by herself by clearing her throat. She knows when the nurse is sponge cleaning the inside of her mouth because she either closes her mouth tight so the nurse can't do it (she is being onry).....then eventually opens it so the nurse can get the sponge in.
5. If something loud happens (i.e. something is dropped in the room) she will jump like she is startled.
6. She reacts to pain. If I brush out her hair or sometimes if she gets a shot she will grimace or her body will pull back. She seems really sensitive. If I kiss her cheek or forehead or if I just stroke her face she will pull back from it or she will grimace.
7. She has a variety of facial expressions. She mostly moves her tongue in and out of her mouth. She grimaces, puts together her eyebrows, wrinkles her forehead, shows frustration, shows a scared face, shows a sad/crying face. So far no smiles, laughs or happy faces.
8. She turns her head to sound/voices. If you say her name (about 60% of the time) or if you just talk to her she'll turn your way. I was telling her about my Xmas shopping and what I got everyone and she turned her head and looked at me the whole time. She also turns her head when the nurse comes in and starts talking to us.
9. She lifts her arms up by using her shoulders. It's more of a gross motor movement...not so fine motor. But she can get her right arm sometimes as high as her head.
10. She bends her knees and slides her feet up and down on the bed. She has started to kick her pillows that are under her knees off the bed. I have seen her cross her left leg over her right. She was moving her right leg up and down the most today.
11. She started to make a sobbing type sound on Friday. This is normal with PVS patients, from what I understand.
12. She eats with a feeding tube in her stomach and breathes with a tube inserted into her trach. She has a full catheter to collect urine. She can't turn by herself. She doesn't follow commands yet (I'm not really counting the time I told her to stick her tongue in and out and she followed).
That's all I can think of for now. Pretty amazing especially since my aunts and uncle last saw her that first week she was admitted to ICU. I'm trying to be positive and excited about these baby steps. I hope that when they start treatment and therapy...that she will show more growth.
Another thing about the nursing/rehab place...the lady who was there previously had left behind alot of her stuff (including her teeth!!! ewwhh) and none of that was removed. So one of the nurses collected all of it (after I questioned it and said I would hope none of it would be used on my mom) and apparently they were supposed to have disinfected everything before mom got there. So...that's my biggest gripe so far.
Mom had blood in her urine today. So I called the doctor and told the nurse....so hopefully tomorrow I'll find out why. Dad is sick right now. Could it be because he isn't sleeping? His body is sore and hurts. Could it be because he falls asleep on the couch? So I told him tonight to take the night off from seeing mom. He said he feels so guilty. I told him it's more important to take care of himself. There is nothing he can do for mom right now and if he gets worse...he will be of no use to anybody. So he agreed..but I know it is so hard for him. So I hope he took my advice tonight.
I have a prenatal checkup tomorrow and told him that I would be at the facility early. So he may be there too. We always go at separate times, it seems. I'm sure he likes his alone time with her too.
Love you all and thanks for listening and continuing to pray!!!
Teresa--sounds like lots of baby steps. That is very exciting. You should be excited about them...wow, mom sure sounds like she is working hard to get herself back. That is GREAT news.
Sorry the facility leaves something to be desired. I know what you mean...there is a "smell" sometimes to facilities like these and sometimes the older they are, the worse it is.
I will continue to pray, like always, for you and your family. God Bless you and much love!!
Since everyone is posting here, I think I will go ahead and do so as well.
First of all, I am so proud of you right now. You have such an amazing strength and no doubt about it, your relationship with your family reflects that right now. I know how tired and frusterated you might be about all of this, but I agree with you on one aspect, she is definately showing alot of signs. There has been an improvement with her since all of this has happened. Continue to do what you are for your mom, she can hear you and she can feel you.
I pray daily, as I post that each time I post about your update. I worry, it is a natural thing for me and I hope you are getting the rest you need for you and Baby Dylan as well. Eric and I love ya and hope that things continue to go smoothly with this transition. Great update to hear!!!!
Any step counts, sounds like your Mom is doing very well! Any odd she can beat that a doctor said she'd never accomplish...that is a gigantic step! Good luck at your appointment tomorrow and I am sending prayers and **GET WELL** wishes to your Dad. I am sure it is a combination of a lot of stuff, bless his heart.
Teresa, our thoughts and prayers are with your mom. *big hugs*
Just catching up after being away. It's so positive that you are seeing some improvement. Keep positive. I hope things improve some more and your Dad really is taking care of himself. I'm still praying for you all.
Keep us updated on how you're doing
(((HUGS))) Sounds like there are some positive things going on. Sorry the place isn't what you would like. That makes it so much harder to deal with. Hang in there. We're continuing to say prayers for you, your mom, and your dad and the rest of your family. (((HUGS)))
Wow! What a day today. My friend Misty graduated from Chiropractic school on Friday. She drove down to visit with Brian and I. She and my mom got along really well and she wanted to go visit her.
Well my mom was in major alert mode today. I couldn't believe it. Just yesterday she was so calm and relaxed. It was like looking at a different person today. She was so "aware"....she let Misty do some ambulatory movements on her. So she stretched her out and moved her joints around....legs, feet, arms, hands, shoulders...etc. My mom was totally responding to her...either with facial expression or with compliance. Mom was tracking both of us around the room and around her bedside. When nurses came in...mom would look at them.
Misty would talk to mom about getting better and about getting stronger (the reason for the stretches) to be able to hold Dylan...and mom had that look of distress on her face. I swear it was like she wanted to tell us something...like she had something to say. She closed her eyes and began to "sob"...and when she opened them, she had tears welled up in her eyes. I just know she understood and she wanted so bad to convey that. It seemed like anytime Misty brought up the baby, she had this type of reaction. It broke my heart...but I also was happy to see something "alive" in her. Also, everytime someone would talk, mom would turn her head to look at them. It was like she was laying there listening. She would occasionally get that "look" on her face of frustration and would well up her eyes again and again. If this isn't just normal PVS stuff and she really is trying to speak.....I can't imagine how hard this is for her. So I hope they can wean her off the trach...so she can maybe start some speech therapy...I don't know...start something!!!!!
At one time while Misty was stretching her fingers and hands, I leaned over and kissed mom on the forehead. Mom proceeded to pucker her lips and make a kissing sound. I am not kidding. So I looked at Misty and was like...."what the?" and we thought it was just a weird coincidence. Well later I sat down next to her and held her hand to talk her thru some of her frustrated "sobbing"....I blew her a kiss and she puckered up and made a kissing sound...twice! I'm not kidding. Now, Misty said that the nerves and muscles you use to make that facial expression (along with grimaces and all that) are usually from the brain stem.....so could be just PVS stuff....but the tracking and the response to us (grimacing when Dylan specifically was mentioned) is higher order brain function. So Misty and I started to debate the whole possible "stroke" idea. Her right side is definitely stronger than her left. But because she does have movement on her left side....it probably isn't a stroke. With a stroke, she would have a better chance to gain back her body...but also would have more chances to have another stroke. We were thinking maybe she had a stroke and a little part of the lack of oxygen due to cardiac arrest. It's just nice to start thinking more outside of the "PVS" box. Ya know????
They had a mitten on her right hand that had some mass to it. I guess she pulled out her trach in the morning. So they had to do this to stop it from happening again. Poor thing. When we were putting it back on, after taking it off to stretch her hand, she cried a little about it. But for her to be safe, she has to have it on. We told her that.
After awhile of visiting...she was getting noticeably more distressed...she had her arms curled up on her chest and had her knees brought close to her chest. I knew I had to leave and I didn't want to leave her so visably upset. I almost wanted to call my dad and tell him to get his butt over there to take my place. I decided to move my chair away from her and stop stimulating her for awhile. She then did calm down and she started to straighten her body out. So I realized that stimulus is good...but too much can possibly cause her harm (i.e. her heart may work harder...BP, etc.). Well the lift team came to turn her and change her...so it was actually perfect timing for me to kiss her goodbye and leave.
I called my dad and he ended up getting there just as they finished turning her and changing her. He said she was all mellow and calm. I guess we wore her out physically and mentally. Dad couldn't believe all that I told him. It seemed to bring his spirits up. Misty also just finished her EMT/paramedic license...and was telling me that CPR is actually seen to not work all the time and that the life kits they use are what is working in cardiac arrest patients. This just means that even if Dad knew professional CPR....mom's heart would probably not have responded anyway. So he doesn't need to carry out the guilt about that anymore. It was really nice to have her around. She will be very straight forward with me and so I asked her what she thought about the whole situation...were we too optimistic...were we reading too far into it...were we seeing what we wanted to see....Misty said no. That she thought that mom was going to be a lot worse than she was. She was really impressed with her movements. She also said the place was nice that she was in and that she has seen really bad places before. (I hope I'm getting all this right Misty!).....
As far as the blood in her urine....well Squeaky Wheel Teresa got the attention because after questioning it with the charge nurse...they changed the entire bag because it was the same one from the hospital. They are running a complete blood count (CBC) tomorrow and we should have results by evening. They will have discussed removing her urinary catheter in about 2 weeks (she has a few bed sores that they are caring for right now..those happened at Kaiser by the way....). I also questioned the physical therapy and range of motion exercises that she should be receiving. Well Misty showed me some I could do with her when I see her...but the nurse is going to get back to us tomorrow with that. He started to tell me that she was already getting those services...but found nothing in her chart....so that's why he's getting back to us....mmm hmmm!!!!!
Also, last night my dad talked to the activities director. She wanted to know mom's likes and dislikes. So what music she likes, does she like books, does she go for walks...etc. So the lady said that she will play country western for her, read to her, and take her outside for a walk. That was kind of cool. Who knows when that will happen, but you better bet on it that I will be finding out.
So overall, a great day. Yucky faces and yucky to see her 'crying'...but all such great baby steps. I still hold on to the kisses....those had to have been from Mom...ya know?
More updates tomorrow. But I couldn't wait to share.
I got misty thinking of your mom working with Misty! Oh-- I am rethinking my stance on what to do with me if I am ever in your mom's situation. I have nine kids and a lot to live for. They would need me if I could come back. Tell your mom she is inspiring people she doesn't even know!
I am so proud of you. I used to be a theraputic horseback riding coach. A lot of family members wouldn't come see their athletes because it was painful to be with other people who had problems. It wasn't pleasant. I know you can't imagine doing anything but what you are doing, but not everyone can handle it.
Went to see mom. Mom was much more calm and relaxed today. She recognized me immediately and stared at me as I sat next to her. They cut her hair short and it looked so much better. The rat's nest of tangles is gone!!! I can only imagine how much better she must feel. She still had a few of those frustrated/crying looks on her face while I visited. She did blow me a kiss again. She raised her arm to me (her right arm is much stronger) and I held it and kissed her hand. That's when she puckered her lips and slowly let out the sound of a kiss.
Good news is that she is starting physical therapy today. Well just range of motion stuff...but I'm happy about that. The doctor came in today and did some reflex testing on her (he's not a neurologist). He does work for Kaiser though. She responded appropriately to the stimuli (again just low brian stem responses). Well the doctor was standing there rambling on about how they aren't trying to wean her off the trach because (and this is me rewording his awkward words) we do not have a DNR on her. So if he challenges her by weaning her off and something goes wrong..we could hold him liable for challenging her and that's why she passed. But if we had a DNR on her...he could be more aggressive with therapy. Whatever, but I understand. So for now, she'll be keeping the trach in.
He looked really nervous speaking to me. He looks like he is a newbie doctor...they usually put them in places like this first. This is actually a good thing because he knows how active we are about my mom's care and he knows how active we were about it at the hospital. So I'm sure they'll be keeping a really close eye on her.
Well as he was rambling on, I glanced over at mom and she was smiling. Then she kind of laughed. I thought I was seeing things and was like "no way!"....Well the doctor finally left and I had to go and say goodbyes to mom. I called my dad and he was just getting there again. I filled him in on all the information.
Well, he calls be back like 45 min later and says "wow she is on a rollercoaster of emotions today!" I guess she saw the family of the lady next to us (this lady is like mom was when this all first happened). Mom raised her head off the bed, raised her shoulders off the bed and tried to sit up. Then she lifted out both her arms to the kids (around 10 years old) in the family. She then gave up, fell back onto the bed and started sobbing actually tears. My dad wiped them off. She also laid there and started laughing at a different time. Now my mom has one of those laughs where sound doesn't come out....but she just shakes. (I, by the way, also inherited that laugh). Her laugh is so contagious. Well she started doing that for no reason....and my dad couldn't believe it. It was like she thought of something that really got her going. How neat that is to have a bit of her personality back!!!! So, I'm looking forward to seeing her again to see that. I know smiling is very PVS...but laughing is more higher order brain function. How interesting. Again, it's all baby steps....but so far something new everyday!
Wow! Wow! I just have to say I am so amazed by the good news you've had to share with us lately, and am so happy for you and your family. I know the life support decision was something your mother firmly believed in, and the fact that you all stuck by it when all the signs pointed otherwise is just getting vindicated every day.
Huge belly hugs to you. I can't wait to hear her reaction to when she first sees Dylan.
Still sending LOADS of prayers that your Mom makes a recovery!!! All of this sounds amazingly positive and reassuring that it IS a possibility!!!!!
HUGE hugs to you Teresa!! And thank you for keeping us updated!
Lots of Love,
Wow Teresa!!!! Everything sounds so great for Mom!!! That is SO wonderful and I'm so happy that your family is getting good news at Christmastime.
Much love & HUGE HUGS!!!!!!!!!!!!!
She continues to amaze me. I'm so glad you're getting these glimpses of your mom again
Wow, Teresa! WONDERFUL news about your mom's progress. It sound like all of you are getting an early Christmas present! HOORAY!
I am sitting here crying, Teresa!! I am so so proud of your Mom, what a fighter!! You know, I can remember those moments where I just couldn't do anything but be in awe of my Dad's progress and thank God for the miracles I was witnessing....and I pray you get those same feelings. They truely are indescribable.
Merry Christmas to you & your family, hon!!
Well it's Christmas Eve. We usually celebrate with my parents on Christmas morning...but I don't think anyone is up to that. So we are just opening presents and having a turkey dinner tonight at their house. DH and I will stop by the house to see Dad in the morning, go see my mom, and then head out to Los Angeles area to hang with the in-laws. We always spend Christmas dinner with them. It will be the first time I have left San Diego since mom got sick.
I went to see Mom around 2pm this afternoon. I think she is much more active around this time and I wanted DH to see her be active. Usually he goes at night with me and she is very relaxed then.
Today she was awake...not as active as she was with my friend...but still aware. She blew me a few kisses and then... She blew my husband a kiss when he asked her to. She was also staring at him. So I was telling her..."isn't my baby handsome! Quit staring at my handsome husband" ..She started to smile and have a smirk on her face. Like she was laughing about what I was telling her. Then she shifted her gaze to my chest. So I told her to quit looking at my boobies...you're my mother!!! She again, started to smile and smirk about it. It was so neat!!!
Another baby step.........she stuck out her tongue and was trying to reach a corner of a towel that was by her mouth. She just kept reaching out with her tongue. She eventually did reach it and she started to play with the corner with her tongue. I've never seen her do something like that before!!!
I am really liking the place she is in....well the people that take care of her anyways. She has one RT that is just the nicest guy and he talks to her like she is fully aware of everything he says. He took her oxygen saturation and heartrate and he actually lifted the machine to her face so she could see it. She moved her eyes to look at it.....like she was actually reading the information. I asked him about weaning her off the trach and so he took her off of it for a few seconds...but she didn't try to breathe on her own. He just said "well she must not be ready for that yet.." I was so happy to hear the optimism in his voice and I know my mom appreciates it too. We will go and see her tomorrow for Christmas.
Love ya all!!!!
I love coming here to read your journal! If hope is that thing with feathers that perches on the soul. . . you have a flock of hope! :animalrooster: :animalrooster: :animalrooster: :animalrooster:
Christmas day was amazing! I really did have the best gift....Mom giving everyone smiles and kisses.
Well my aunt and uncle came, my Dad, and DH and I. So we were all hanging in the room with her. At first she was just looking around the room at everyone. I was sitting in the chair and she kept looking through everyone to look at me. I just kept smiling at her and letting her know it's okay.
I wanted dad to see her give kisses, because he still hadn't seen...or received one!! So I went up to her and told her to give me a kiss for Christmas....well she puckered up and I kissed her on the lips. It was so nice!!!! My dad was aglow!!! Mom kept raising her arms up in the air. She was even raising the one on her left side, which seemed so much weaker. My aunt was teasing her and telling her that she was trying to pick out her Keno numbers so they can go gamble (my mom loved to play Keno). Well my mom thought this was pretty funny and started to laugh a little. I couldn't believe it!!! My uncle asked her for a kiss goodbye...she gave him one. My husband told her that he was still sick, so he couldn't kiss her, she looked at him and gave him one from across the room.
Later, I talked with dad and he said she also gave him one when they were alone. Yay!!! So all in all....I had the best Christmas present ever!!! I can't believe how far she has come. I hope her heart just hangs in there and waits for her mind to catch up...so maybe they can help her heart too. I missed seeing her today....I was up in Los Angeles. But I really look forward to seeing her tomorrow. Baby steps!!!
Yeah-- but you give birth to your baby and go in and her hands will fly out to you to hold it! This lady is wired for affection!
You are in our prayers. It sounds like your family is doing everything right!
Teresa, that is amazing news! I am so happy for you! :bighug:
Oh my gosh!!!!
I know I need to be ready for the "downs" to come....but it is so nice to focus on the ups for a change. Mom was so funny today. I mean literally funny.
I walked in to her room today and she seemed to recognize me from the doorway. She was blowing out bubbles from her mouth. So I went over to help her get out the excess fluid from her mouth. I later found out that this "foaming" is due to her being awake a lot more and being unable to swallow. I told her about my doctor's appointment for the baby and how much he has grown in my belly. She looked at me and listened to what I had to say. I showed her my belly and how big I have gotten, her eyes moved to my belly and looked at it as I described what the doctor did. I moved to the other side of the bed and she followed me with her eyes and head. I brushed her hair and put lotion on her feet and hands and talked to her about Christmas and how spoiled the baby already is.
The RT (respiratory tech) came in and asked me if she responds to me more. I said that she does and showed her how mom will kiss me on command. The RT couldn't believe it. She commented about how much more she is showing progress in this pass week. She told me how to use the suction tube to help mom clean out her mouth from the excess fluid.
After she left mom was laying there staring at me. I told her if she was going to keep blowing bubbles...that she needed to make a sound with them. So I stuck out my tounge and made that vibrating sound. She started to laugh. I then started to laugh. So we sat there for about 10 minutes just laughing our butts off! We would stop and she would stare at me, I would look at her from the corner of my eye. As soon as she saw my eye looking at her....she would smirk and I would say "mom don't start it...don't you dare!" and she would start laughing uncontrollably again! We did that for the whole two hours I was there! The nurses would come and go and they too would see her laughing with me. They couldn't believe it. The RT came back in and I told mom to stop it and let her do her job.....mom would giggle...then lose it again!!! The RT told her "Linda, you've been holding out on me!! I'm not gonna let you get away with just laying there anymore...now I can give you a hard time".....mom laughed at her. Well, while laughing, mom was making these dolphin like noises because of her trach...so the RT told her she sounded like a dolphin...and mom lost it again. It was incredible.
It felt so good to laugh with her again. Mom, my cousin, and I all laugh without sound. We kind of just shake and we don't really breathe....and it usually doesn't take much to get us started once we have already been laughing. This was my mom. Not some lady who is in a vegetative state. This was my mom coming through to me, to the staff. The RT commented again about how much progress she has seen since she first came to the facility. I'm so glad that they saw what we see!!!
Dad has been sick and feverish. I know it's because he isn't taking care of himself. I offered to bring him dinner, soup, or medicine. He thanked me and denied all of it. So I told him to stay home tonight and get some rest. He doesn't need to bring all that to mom. Her medical application was submitted today, so hopefully that all goes thru and she will have continued medical coverage after her Kaiser insurance stops covering her.
WOW, WOW, WOW!!! So much progress in the last couple of days. I am so happy for you all. You had me laughing over the whole bubble thing. Praying that everything continues to go so well with her and every medical advance involved. HUGS!!!!!
Oh Teresa! I'm so happy to hear about your Christmas present from your mom. You and she continue to amaze me. Hang in there and keep the faith. Prayers and hugs still coming your way.
It just keeps getting better! Your mom is such a fighter and she has a wonderful family to back her up. I'm so happy for you all!
What an AWESOME update Teresa!! It just made my heart smile to read about your mom laughing with you!!!
Lots of prayers that she continues to make strides ahead!
Awwww....I was smiling reading your post because I could just picture the whole thing. Wow. You have such an amazing impact on your mom. I'm so glad you have something to smile about and celebrate!!! Big hugs.
That's a neat experience. I'm glad you were able to connect with your mom like that. --Katie--
Went to see mom at about 3:00. When I walked in the RT (Mary) and the CNA were standing around my mom. I told them hello and walked past the first two beds (they both have people in them). Mom is at the far end of the room next to the wall with the window. Mary said she was upset (jokingly) because mom wouldn't do any of the things she did for me yesterday. I told mom to quit being stubborn and laugh for everyone.
Well I sat with mom after they left and began tidying up her bed and her body. I always get a cool rag and wipe her face down, lotion her hands and feet, and brush her hair. I was telling her about what we did in my birth class the night before and she laid there and looked at me while I told her the story. She would move her head and follow me to whichever side I was standing on. Mom started to blow bubbles again and I told her that if she keeps that up they are going to put her in with the circus as the amazing bubble girl....she immediately started to laugh. What a stinker! So it started for the afternoon and we just laughed together. Mary walked in a few times and smiled and just shook her head in disbelief.
Everytime I suctioned her mouth, mom would clamp her mouth down on the wand-like thing I use. Which then wouldn't let it suction. I told her to let go of my wand and I pointed it at her and said "bibbety bobbety boo" and she would crack up. I told her it wasn't funny, she didn't seem to care. I also tried to practice with her to shake her head yes and no. She wasn't able to do that. It seemed that if I asked her if she was okay, her head would slightly make a "uh-huh" kind of look. Yes, you would have to know my mom and seriously look to see it...but I recognized it. So I thought maybe...if we practice, she may get it down. She would just laugh when I would get frustrated with her (of course playing around).
So we ended our visit and I stopped off at the nurses station to talk to the charge nurse. I asked the nurse about her urinary catheter and he said that on the 30th, they will look at her friction sores again and make a decision. I personally think that she would be much more comfortable with it gone. What do I know though...ha ha. He told me that he wanted to give her a flu vaccine. So dad (who has been sick with the flu for the past two days) needs to go in and sign some paperwork for that.
Mary was sitting there listening and told me that she was up last night thinking about my mom and she was cracking up. She said that mom really lights up when she is with me. Mary said she was so excited when she got in at 6:30 am that morning to go make mom laugh...and was bummed when she just looked at her. I told her that mom and I have this special thing between us....we would always tease and laugh together like that. Mary has only met me so far...so she hasn't seen what kind of relationship my dad or brother has with her yet.
I asked her if they marked in her file about the laughing and kisses, she said she did and I guess they have a meeting with the doctor on Th or Fr to discuss patients. She wants to suggest to the doctor to get mom a speaking valve because she thinks she might try to speak with me. I don't know about that yet....I mean who knows really...but it's taken her 2 months to get to this point ...Mary said she thinks it's worth a shot. So we'll see what "Doctor Wonderful" thinks. I told her thank you for thinking of my mom so often and taking care of her. I really appreciate that she is recommending taking a chance with mom. Luckily, this won't affect her heart at all....because we still don't know how weak it really is. Mom is still on meds for her heart and the last CBC (complete blood count) they did, her white blood cell count was a little high. They were giving her a 10 day series of antibiotics to fix that....they weren't sure where the infection was. I guess she also had a bit of a fever...but that's gone now because of the medication. Today (Thurs) I'm going to go see her again for a bit. We'll see what happens today!!!!
I am glad that you had a great visit today. I keep praying that everything keeps improving, which it has. A speaking valve would be great, if she is ready for it. I think she might try to talk to you too. Hoping her blood count goes down and the infection goes away soon.
I just love all of this good news! Keep it coming!
You need to go into the phsyical therapy field-- you may have a gift at this!
I am so excited for your mom! Keep up what you are doing!
I'm so glad that you and your family have managed to get your mother to this good place, Theresa! I mean both a good place - physically (a really nice, supportive facility, with good staff), and emotionally (where your mother feels secure enough to become more and more responsive and give you some really nice mother-daughter moments.) I'm really in awe of what you've managed to accomplish, and very very happy for you. May all these steps forward keep continuing!
I love the good news as well!!!! So wonderful to read!!! No doubt all of your love & support has gotten her this far!!!
I'm glad she's doing better. I'm glad you're getting some nice moments together and are LAUGHING. That's the best medicine. Hope your dad feels better soon.
Just thinking of you. How are things progressing?
Okay everyone....I have the best news! I have been so busy this month that my brain is spinning and my body is aching. I have been
planning for my sub, cleaning my classroom, organizing
visiting my mom
finishing the nursery
going to childbirth class
going to doctor's appointments
getting my guest room ready for my IL's when Dylan gets here
Sooooo, I have not had a chance to update. Thanks for asking about me you guys. It really means so much!
Well we tried out the speaking valve that the respiratory therapist (RT) ordered...and my mom spoke!!! That's right she actually talked to us. She responded appropriately to our questions and even said some things on her own.
How do you feel? fine
Say Hi. Hi
(my mom wear's dentures...when asked about her teeth that she hasn't worn in 2 months) It's been awhile
What's my name (asked by my husband)? Brian
What's the name of your new grandbaby? Dylan
The RT was joking with her and said if she was going to lay there and laugh all day or talk to her.....I'll talk to you.
Tonight with Dad and I:
I love you momma. I love you
Say Skip (my dad's name) Skip
Say I love you (by my dad): I love you
Do you know what happened to you? yes
What happened to you? my chest
Do you feel pain? my hands
She also says other things but they are hard to hear mostly because it's so loud in the room with the other lady's TV on, the oxygen running, and breathing machines. So hopefully with some speech therapy, we will be able to understand more of what she is saying.
She also is shaking her head yes and no. She raises her eyebrows for an "I don't know" kind of answer. She raises her arm on command. Today she pointed with her finger.
Her hands are really painful right now because she keeps them balled up in a fist most of the time. When we try to straighten them out she wells up in pain and starts to almost cry. It hurts me to see her like that. But the nurse said it has to be done. They are coming into her room more often to stretch out her hands...but I can't stay there looking at her because it makes me feel sick to my stomach to see that look of pain on her face. I know that if we don't do it...she will later have to get casts put on to stretch them out. I told mom that I didn't want that to happen because then I'd have to wipe her butt and I really didn't want to do that...she just laughed at me.
She can only tolerate having the speaking valve in for about 15 minutes and then she gets tired. We don't want to stress her body too much because her heart is still so weak. She sounds just like my momma and when she laughs and coughs....it's her sound. The speaking valve doesn't make her sound robotic or anything...it's all her. She is able to breath on her own, but because we don't know the extent of her brain damage...we don't know how much or how long her brain will control her self breathing. It may be 1 hour or all day...we still don't know.
Dad had a meeting with the nursing staff (doctor wasn't there) and he went over some logistics. Things like what meds she is on (they need to relook at these because she has the same presciptions from the hospital). They want to take her down from 2 shots of insulin a day, to 1 shot a day. She receives 2 different heart meds, meds for her breathing, blood thinner, pepsid for her stomach, etc. She is not on IV right now.
We told them to leave a fan on her and to leave the TV on (she actually watches it). We asked about bathing and they said they still have to sponge bathe her because of the trach, we asked about removal of the trach and they said that it is the doctor's call but they need to be careful to not stress her. Same with putting her up in a wheelchair...we need to watch her heart and blood pressure. They are starting more aggressive physical therapy and speech therapy with her though. So she should be talking soon.
So ultimately we now need to contact the doctor and get a re-eval on her for her heart, lungs, and her brain. She has shown so much growth...that they really shouldn't deny it.
One more thing...I kept bugging her yesterday to look at me because she was watching TV or looking around the room. So I was like "mom look at me, I swear I'm going to leave, mom turn your head....etc. etc. etc." Well mom turned her head toward me, bugged out her eyes and 'stared' at me...almost like saying 'there, you happy I looked at you'. It was so damn funny and we both started cracking up.
So after all this....if she's not in there....call me crazy!!!! Again, baby steps.....but wow what a feeling!
What wonderful news!!!!!!!!!! I am SO happy for you!!!!
Oh my gosh-- I can't read this without crying! I am so happy for you! How is your dad? He must be so happy he can't stand himself!
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)))