My mom's situation

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My mom's situation

Hey ladies....

My 50 year old mom went into cardiac arrest tonight. She was sitting in her computer chair next to my dad and started having seizure like movements. Then her heart stopped and my dad tried to give her mouth to mouth.

Her vitals are stable...and her heart is beating...but she is intubated. I feel so numb and can't believe this is happening. She is my best friend. I can't imagine living without her. She's my everything. My dad, who is so emotionless, is falling to pieces. Blaming himself that he didn't know if he did mouth to mouth correctly. We try to reassure him..but.....

Please pray for her. Please pray that this is just a wake up call for her to stop smoking, lose weight, and take care of her diabetes. Please pray that she'll see her new grandbaby. I finally left the hospital...it's almost 3am here. I know I need to take care of the baby. I feel so selfish, like I should be right by my dad's side. He told us all to go home and get some rest...yet he is staying there. My mom has 3 sisters, and they were all basically raised by my mom. So they are flying out tomorrow. Thankfully they'll be here. ....I appreciate all of you coming together to send wishes and prayers for her. Her name is Linda. 11-11

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Thank you so much for your prayers and well wishes. Tears are still flowing as I type this. It's so hard seeing her hooked up. I got about 3 hours sleep last night. I feel so sick and nauseus. I just want to throw up! They moved her to ICU early this morning. She is pretty much the same. Still unconscious. Still on the breathing tube. Her heart is beating very weakly on its own. The tube is currently breathing for her. They took her completely off sedation, in hopes that she will wake up. Apparently she has had several heart attacks in the past and she never knew she had them. I guess diabetes numbs the nerves to it. So she has a heart trouble for years and no one knew it. Seeing my dad and husband cry just kills me. My mom is this universal mom. Everyone loves her and needs her in their lives. I can't begin to tell you how many people she has touched. She also asphixiated and now has pneumonia and fluid build up in her lungs. So they have to suction her every 10 min. She hates that. She balls her hands up and has this look of despair on her face everytime they do it. My dad has only been home once to shower and change. I'm just glad he's going to eat right now. I feel so bad for him. He is truly lost without her. Please keep praying and thinking of her.

I came home for a bit to get some rest and eat. I'm going to try to nap. I still need to make sure I'm okay. 11-12

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Again, you don't know how much your words of encouragement and prayers mean. Well she is pretty much the same. We've seen some positives and some negatives. She opened her eyes a few times today when she was "coughing" . So they suctioned her tube. Her eyes had a blank stare...but it was nice to have that hope. Yesterday they cleaned out her lungs with a deep suction and so her pneumonia is doing better. She has less fluid in there. When she does get that urge to cough...she starts breathing faster and you can tell it's coming. I love the hospital that she is at. They have been amazing. Her nurse is only taking care of her...so she is getting a lot of attention. I can't believe how wonderful they are. They talk to her and are constantly in and out of there making sure she has all of her comforts met...from vaseline on her lips, to a rolled up towel on the side of her head to keep pressure off her smooshed ear....etc.

The last I heard was that she has brain swelling. This swelling was caused by the trauma her body went thru. They are waiting for the swelling to go down, her low grade fever to go down and hopefully we will see better things. They can't do anything for her heart right now because she is still unstable. They have been able to back down on her heart rate and blood pressure meds and she is able to maintain pretty stable numbers almost on her own. Most of the movements we are seeing is all physiological. They want to see her ultimately open her eyes and respond to commands (lift your hand, blink your eyes)...that's the immediate goal after they get her temp down. The doctor order an EEG today. This will tell us more about the electrical activity of her brain, to see if there was any damage to the brain. They are hopeful because she does cough, gag, etc. Tomorrow the doctor will meet with us and tell us all the results. But our nurse told us on the side, that ultimately they are just tests and numbers...in the end it's really up to her body and how it heals. He as seen people in worse shape get up and walk out ...and he has seen the healthy ones, not make it. Most of them went against what the "tests" said. SOOOOOO, it's all a waiting game. Thanks for waiting with me. I look forward to coming home and reading your replies. I wish I could take you all up on the meals...but I feel so sick to my stomach most of the time...that I'm afraid the meals would go to waste. My DH is able to eat...he says it makes him feel better. He and my mom are very close.

I got about 10 hours sleep last night and feel much better today. I ate a bit more too. Dylan seems to know that something is up because he keeps kicking all over the place. This is the most movement I have ever felt from him. Bless his heart. So I have lots of people looking out for me and making sure I'm doing the right things for myself and Dylan. Thanks for also being my lookout! More updates later. 11-13

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Well things were starting to look up. She was kind of opening her eyes...not much behind them but moving them regardless. Her hand would move...not from the shoulder...but her hand itself. She yawned a few times. The nurses and doctors tell us it's all reflex and neurological...but I want so bad to think different. All 8 of us were sitting in her room and talking...just like we do at home...the nurse was taking a blood sugar...and we hear alarms go off. She was going into V-FIB...just like she did at home...and the nurses called out Code Blue. So we all rushed out of the room. I was numb. As soon as the guy got the crash cart to the door..within a few seconds...she got herself back on rhythm. It was like nothing happened. I swear every nurse and staff member was rushing in the room. They said that it could of happened because her electrolytes were low. They also said a day ago, that this might happen as her brain stops swelling and her fever comes down. Her fever is normal now.....and they are regulating it with Tylenol and a chill blanket under her.

The attending doctor at that time was the same doctor that treated my grandmother up until she passed a year ago exactly. I asked him if he remembered my mom, because she used to take my grandmother to all of her appts...he said at first he didn't with all the tubes...but now he did. My grandma passed two doors down from where my mom is now. He said he would make sure to keep a 'private eye' out on mom. That felt really nice. He really took his time with us.

The EEG results came back. She has activity in her brain. She is not brain dead. The activity is slow, but there. She has not had seizures or strokes. So tomorrow her neurologist prescribed an MRI. So this will tell us if there is any damage to her brain.

As I was leaving tonight, I leaned down and held her hand. Her hand muscles were quivering slightly...like if they were weak and she was trying to lift her hand. I whispered that I have to go home to take care of Dylan and I would see her tomorrow. She opened her eyes and looked like she was trying so hard to focus them on me. It killed me!!! I told her I see her..and what she is doing. My dad and brother took over for me. Earlier, I was rubbing her hand and head and was telling her how I loved her, and her bottom lip moved and a tear rolled out of her eye. She had her eye opened just a tad and I looked into it and she would move it side to side. Again, all of this could be normal neurological stuff....but I have to have the faith and hope that it is real. Thanks so much again. I'll post more later.

By the way, I had my doctor's appt today and the baby looks great. My blood sugar from my GTT test (110), my blood pressure (120/80), my weight (only 24 pounds gain for the pregnancy), my urine, his heartbeat (very strong), his measuring (27inches).........are all wonderful. So despite the stress...he's just fine. 11-14

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Today's update....hope you all don't mind. This is a good way for me to vent and let it all out. She has lots of positives today. My aunt ran her finger down her feet and she curled her toes up and she had some leg movement. She hates her feet being tickled or touched. Yesterday, she didn't do this. The cardiologist came in and we told him about her movements. So he went to her shoulders and pinched that muscle on top of your shoulder, side of your neck. Usually this kills if you do it to someone. Well he did it to her and she opened her eyes all the way. Again, she wasn't focused...but still she reacted. He also tested her foot and she did the same thing to him. Then, I had just arranged her pillows under her arms and while he was standing there, she moved her hand off the pillow. He saw it and said that's a good sign.

We've been seeing these kinds of things all day today. Yawning big yawns that make you shake. Foot movements. Eyes opening. etc. I know that these could mean nothing. But boy do they mean something to us. Well just as our day with her was coming to a close...the neurologist came in and he pretty much ruined the day for us. He basically said that because it's been over 72 hours, that it looks "guarded". He made it seem like it was hopeless. Apparently, this dr. has horrible bed side manners...but is supposed to be a great dr. I say that he hasn't seen all that we have. He isn't with her all day like we are. So how does he really know all the answers? He knows what is textbook....but miracles happen every day.

They are talking about moving her to her actual insurance hospital (Kaiser) tomorrow. She is at a different hospital right now. This is really hard for us to swallow. We've heard not so good things about Kaiser (it's the only insurance my mom could get with her prior conditions). We know what this hospital is capable of and seen my mom have excellend nurses and care here. So we are not happy with her being moved. But, it has to happen. So I'm worried. What also sucks is that this hospital lets us have sometimes up to 9 people in the room at a time. Kaiser may only let us have the 2 at a time minimum. That would suck! So we'll see.

I love her so much....and want the best for her. She is my life and I feel my heart knot up when I actually think about what is really going on. I'm so glad work is covering for me and taking care of my lesson plans. Thanks for following my stories and praying for us. We can use daily prayers..always!!!! 11-15

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Hey everyone. Well today was really interesting. I walked into the room and went over to give mom a kiss and she opened her eyes. Still no "substance" behind them...but it was something. They did move her to Kaiser today. My dad and I had this immediate chip on our shoulder about the whole thing. So we get there and the hospital is noticeably different. The remodel at the hospital we came from was only a little over a year old. The ICU was new with new equipment. Kaiser is older and has less to offer. This was noticeable when we walked in. Okay we can deal with that. We were so worried about the level of care she would receive as compared to the other hospital. Well we go to the room after they got her settled in. She had an uneventful ride and did well.

Her heartrate was lower...which is good. She was covered up with covers...at the other place they still had her on a low temp pad, no blankets because of her fever...so she would shiver ever so often. But I guess because her temperature was stable enough so they covered her. I bet that felt good to her. The problem is that we talked to the nurse about our need to have more than the TWO ONLY vistor rule. The nurse immediately became defensive and was like well the law is blah blah blah. If other people saw more than two in here they would blah blah blah. My dad and I were like, look we don't care what other people say or think...we know that my mom needs this and we know that she is showing small improvements because of having family in the room. She said well people get in the way. We said, well we were not a problem at the other hospital...and we had up to 8 people in there at times. So she said she would go get her supervisor. Well this lame ass nurse supervisor comes in and immediately wouldn't even listen to us. She started spouting off about the laws...and we said, look we aren't looking for much...we know her desire would be this....and she said...and I quote...."well you'll have to take it up with Sacramento". Can you believe that!!!! Then she said 'well we are the only hospital that allows visitors 24/7'. We were like that's bull because the other hospital let as many as we wanted for that long!!! So she said 'well I'll go get my supervisor'....so quite some time passes and our original nurse said the manager wants to meet with us in the office. My dad said 'you know what I'm not about to go in there...we care about her and her only right now." So she left.

I know we were spoiled at the other place...but we weren't asking for much. I saw gains from mom when she had those voices and love around her. They were gains to us.

So her lung doctor..who ended up being wonderful...met with us and told us that her heart is pretty messed up (my words) and we are still unsure about her brain. We told her our concerns about the visitors...and she was like...you know don't listen to them. I'll have a talk with the nurse. You go and visit and close the door if you need to. My brother said, we'll even stand..and she said...'oh I think I can rummage up some chairs for you'.....so we felt so much better. That's all we were asking for. I swear when it was just me and dad in the room, with everyone else in the waiting room...it felt so hopeless and like I lost all faith. I hated it. I feel better now.

I ended up leaving kind of early tonight. I thought I needed a break. Dad did too. I heard she opened her eyes again for my brother and my aunt in response to them. Not sure, again, if there was any "vision" behind it....but it still is exciting.

So in a nutshell...that was our day. I still appreciate all of your prayers and love you all!!!! 11-16

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Did I mention that I hate neurologists and the internet! I spent some time last night looking up my mom's condition. I just kept reading bad stuff over and over again. It's kind of like when I started reading about that parvo thing I got early on in pregnancy. It felt hopeless and desolate. ya know? Well we met with the new neurologist today and it was basically the same. He said that the signs we've been seeing and the "growth" we've been experiencing is just typical 'persistent vegetative state' behavior. Her eyes opening and making "roving" movements is something that you only need a brain stem to do. Same with moving her hands, coughing, etc. Her feet reacting to tickling is just a spinal reflex. Apparently you don't even need a brain stem to do that..... After possibly being without oxygen for over 5 minutes....he said that damage starts to set in. So we don't know how long it was that she was without...but we do know it was over 5 minutes....even though dad did mouth to mouth...the paramedics had to take 4 tries to bring her back. We don't know what damage that caused...and there really is no way to see. MRI's, EEG's don't even tell that.

So can you imagine how we felt after we heard all that? How hopeless it all felt? He then proceeds to ask us about her 'wishes' regarding life support. We told him that she has always made it clear to us (even though we may not feel the same about ourselves if we were in this situation) that she wants us to go above and beyond to keep her alive. (Who would of ever thought we would have to implement these wishes). Well this doctor begins to question us about her wishes. "Would she want that knowing that the longer she is in a persistive vegetative state...that more serious complications could arise (bed sores, degeneration, etc.)" We just said yes we understand that could happen and yes she would still want this. He then goes on to refer to the Terry Shiavo case and how she had all the movements...but there was no 'consciousness". Mom told me when that was going on that she thought the husband was an SOB for doing that to her. And above all that.... I mean it's been 6 days and he wants us to make the decision now. So we just told him that when we are ready to talk about that, then we'll do it when it's time....with my brother, dad and myself. For now, keep her alive by any means possible. When she is ready to give up...then it will happen on its own. She may have another heart arrest...and they won't be able to revive her. She may, months later, develop something else wrong that can't be cured. But at least we know we did all we could to follow her wishes.

I mean should she get bed sores if she has proper care? If she is turned? I understand that the doctor is text book and he needs to follow that way of thinking. I also understand that neurologists don't really have a bedside manner. I wonder, when do we look past text book and start looking into feelings and hope and faith. Is it stupid to do that? Should I be more realistic and follow what a doctor and the internet says? Do I just let go? Give up? Or, should I keep hanging on to the possibility that months from now, she'll just wake up. I just don't know. Does it sound like I am already giving up on her?

I'm so worried about my dad. Worried about what he's going to do while she is in the hospital....worried about what he's going to do in the worse case scenario. My aunts are leaving on Saturday...and I'm so scared of that void that we're all going to feel. Tonight we made dinner at my parent's house. I can't say that that was easy. Seeing her things laying around, as though she just left to go to the store....like she'll be right back. It was so hard. I went into the office, my dad was in there alone doing some billing for work. I asked him how he was doing and if there was anything i could do to help out. I then started looking at her desk area. There was a list for my shower....things to do....that's all it took and I was crying. My poor dad didn't need to see that. I just couldn't help it. I'm crying as I write this. It kills me. What are we all going to do without her? It's just not fair. Not fair. I'm usually so optimistic...and I hate this. I feel angry....and I know that's one of the 'stages' we go thru. I'm angry about so many things. Angry especially that "the collective we" didn't push her more (even though she was a stubborn ox and wouldn't have listened to us anyways). Angry that she didn't take better care of herself. Angry that I wasn't there that night it happened and couldn't help with CPR. Angry that this is happening to our family. Angry that my mom is laying in the hospital room alone right now and I'm not by her side because I'm pregnant and I have to look after my family to be. Angry because I'm a text book kind of girl...and I hate being realistic. Angry because my mom would not be a text book kind of person and she would rely on faith if any of us were in her spot. Angry that the doctor's didn't catch this early on...that they should have monitored it. Angry that my son may not experience my mom..her love..her cushy belly...her cooking...etc. Angry that I can't just pick up the phone and tell her something funny that happened that day. I don't like this stage very much....can you tell?

We've gotten so many prayers, love, and support. I can't even wrap my mind around how much love is out there for her. I know it's a Wait and See thing.....but the more time that passes...the more I feel hopeless. I hope I pull out of this funk tomorrow. Dylan is doing fine. I'm taking care of him and really trying to keep it even for him. These emotions come and go. This is just a time where they came. Thanks for listening and making it to the end of this looonnngg letter. 11-17

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Well yesterday was pretty uneventful. "Neurologist of the year (NOTY)" poked his head in when we were in there. Mom had just went into a deep sleep. So he asked how everything was....no body wanted to answer him. My dad finally said that she is keeping her eyes open for longer periods now. He just shook his head to say okay, then left the room. Well she went into one of her coughing/choking spells. That's been happening more and more now because of the 30+ years of smoking...all that tar is starting to come up. She has a wicked gag reflex anyways. So for some reason NOTY poked his head back in quite a few minutes after he first came in and saw my aunt talking to my mom. My mom's eyes were open for quite a while already. Yesterday, he saw her when her she was in a deep sleep. If I was in a deep sleep you could probably do anything to me and I wouldn't know it was being done. So anyways, he asked if he could do some things to my mom....so he proceeds to yell her name, tell her to look one way, then the other....then he moves his hand in front of her face....and she blinked. Well he tried that yesterday and she didn't react because she was 'asleep'. He said 'hmmm' to himself and tried it again, thinking it was coincidence...she blinked again when he came close. I was so happy...it felt like mom was saying "take that a-hole". He said, "well I do have to say that she is keeping her eyes open longer." Ya think????

So he ran some other "pain response" tests and she responded to all of them.....then he again says...well this shows you that she is still in a persistent vegetative state. If she was in a coma, she would be showing none of these signs...if you are in the veg state....you show more of these symptoms. He goes to shake our hands goodbye and my uncle completely ignores him...then finally shakes his hand because the NOTY didn't take a hint....GO AWAY! After he left, my uncle (from Mass.) then says yeah I guess if she got up and walked out of here then she would for sure be even deeper in the vegetative state. We all had to laugh. He's such a wise ass....we needed that though. Other than that, the day was pretty typical. We all went to my parent's house and bbq'd some hotdogs and hamburgers. My 5 year old niece was sitting next to me and her mom and my dad...and she says out loud to her mom that she misses grandma, when is she going to see her..etc. It broke my heart...and I know my dad's too. My mom is so close to her grandkids....

Brian and I finally decided to go home. My family all left today. I know my dad can't be taking it well. I asked if he wanted to get together for dinner later and he said he probably wouldn't be up to it, with everyone gone and all. He's been at the hospital for most the day. We'll be going to the hospital, later this evening. 11-18

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Today was different than other days. Not with mom, but with the family. My dad left early in the morning to take my aunts to the airport and then he went over to the hospital to see mom. I guess he bought a book (he never reads novels!) and read it while he sat with her alone. He said he got up when she opened her eyes to talk to her and then sat and read when she slept.

Brian and I spent the day really just sitting around the house. After spending up to 5 hours a day at the hospital each day...I needed to spend a day at home. I worked on report cards for most of the day. A teacher (my mentor and close friend) came by with groceries from Costco. She took up a donation at my school for me. I was overwhelmed by the love. She bought fruits, vegetables, cheeses, dinners, cookies, etc...for me to feed the baby...too sweet. We ate dinner and then drove over to see her. I bought some detangler for her hair and brushed out her hair and braided it for her. She had all this goopy stuff in her hair from when she did the EEG, brain wave test. She looked almost refreshed after I did that. None of us saw any doctors yesterday...so that was nice.

It was weird because I didn't see my dad all day. He came and went on his own. I asked him on the phone if he ate and he said he ate some of the leftovers from our bbq. I know it's not enough..but it's something. My dad is a big guy (tall and husky)...so it's weird to see him not eat much. Dad said he took my grandfather (his dad) over to see her today too. He lives with them...has since the 1980's. My mom is like his daughter...so this is affecting him too. She always took care of him too. (who didn't she take care of?) He has all his wits, strength about him...so he has a hard time coming to see her too.

My brother and sister-in-law came to the hospital about the same time we did, so we had people in there with her to hear. My brother recorded the kids (3 of them, ages 9, 5, 2) saying hi to mom and that they love her. So he put that next to her ear.

Other than that....not much change. Dad said that they came in and turned on the light and her eyes went straight to the light and then closed....She opened her eyes several times when I was combing her hair.
It's still a day by day thing. I'm eating and sleeping. Dylan is a maniac kicker. So all is well in that department. I go back to teaching on Monday....that's going to be different. I only have two half days then I get 5 days off. So it shouldn't be that bad. I'll post an update after I see her today. 11-19

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I am stressing about going back to work tomorrow. I feel really nervous. I've been out for just a week...but I think I'm more worried about people coming up to me asking me how I am..how mom is. I wish I could take more time off...but I need to keep days for my maternity leave. I feel so guilty even saying that. I know that mom would want me to take care of me and the baby. She'd kick my ##@ if I didn't.

I went by to see mom tonight. Nothing has changed. I get so mad about that. Why can't there be change? I need her so much...I just can't imagine life without her. Everything is going to be so different now. I have no clue what Thanksgiving or the holidays will be like. I'm not much in the mood. I know dad isn't. My brother and SIL will be having something at their house. They have to for the kids. I keep struggling with what is the right and wrong thing to do. I'm so glad that I only work a few days this week. I'm so worried that this is as good as it is going to get. I need her to talk to me, to smile with me......to help me and give me advice.

I talked to my dad and he said that the nurse said to bring a fan in for mom. She is getting really sweaty and clammy. He also said that the doctor came in and said that she still wasn't sure about the feeding tube or the tracheotomy for the breathing tube. She said she had to consult some ethics board. Have any of you ever heard of something like this? PM if you have or if you understand it. So now dad has to talk to the doctor some more tomorrow about it. The whole thing makes me just sick to my stomach. He bought some shampoo and conditioner for her hair. I can't wait until they wash her hair for her. She needs it.

Please continue to pray for her. She has to pull through this. She has to get better. November 20

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November 23

Well going back to work was pretty difficult. It wasn't the kids that made it difficult. It was the grown-ups. There were some that would just walk by and squeeze my arm and smile....that was perfect for me. Then there were others that wanted the story...wanted to hear me talk about it. That was when it got difficult. Immediately my eyes would well up...then I would need to go to my kids to pick them up. That was too much. Tuesday was much better at work. I welled up a bit, but was able to talk about mom much more.

Mom is still the same. She is still in the "PVS". She is keeping her eyes open longer. We ask her to look at us, but she stares off into space. Sometimes I wonder if she is watching TV or watching the movements....sometimes I wonder if she sees anything....or does she see..but not understand. They are still working out her blood pressure meds. We know that if she wasn't on meds..she would pass. So they are trying to wean her off the blood pressure meds. When they do, her pressure will get too low...so they put her back on. She is still coughing and gaggin quite a bit, they put her on sedation yesterday on Monday for a bit to relax her. I hate it when she is on sedation because she never opens her eyes. On Tuesday and today, she was much more awake. She usually goes into a yawn, then she realizes she has to cough or gag, then she goes into a period of trying to figure out how to get whatever it is out of her..so she turns red and 'stops breathing'....the machine still breathes for her though.

My dad met with the ethics board. There were two doctors there. One was the doctor (internist) that she has been with all week and the other doctor was the new internist. I guess they take a week's rotation to work in the ICU. There was also the social worker and the ethic's lady. The social worker and ethics lady were there for the family. The ethics lady apparently doesn't work for Kaiser...she is a kind of mediator.

I didn't know they were meeting. It was a coincidence that my dad and brother were there when they wanted to meet. My dad made a decision for me to not be there. Mainly because I'm pregnant and I am very emotional lately. Dad knows my concerns and he knows that I fully support and trust him to respect mom's wishes. I'm actually glad I wasn't there. I guess the first thing the new doctor says to them is "well you know if she goes into cardiac arrest, there is nothing they will do for her"...my dad was like "ummm, yeah you will". Then the doctors try to presuade him that she wouldn't be worth saving....it "wouldn't be worth it". Dad was so p'o'ed that he wanted to slam his fists into the table. What do you mean she isn't worth it???? I guess the ethics lady and the social worker's jaw dropped when the doctors said this. Dad made some great points with them and eventually they all walked away with the understanding that EVERYTHING will be done to keep her alive and save her.

I was so glad that he was there to fight for her. He said everything I would have...of course mine would of been between tears. He told them things like
--if this was your family member would you feel the same
--I feel like you are trying to rush her out and rush another in to save money
--it sounds like she is a dog at a vet clinic and you are deciding to 'put her to sleep'
--I don't care what you know, what books you've read, what research you've done...we only care about her and even if we have a tiny bit of faith and hope....don't you dare take that from us
--I don't want you coming to us anymore with your words of "it's hopeless because of xyz...especially when my pregnant daughter is in there"
--do you think it's easy for us to walk in every day and see her like this....it would be "easier" for us to just let go and start healing now...but we will not betray her wishes and what she wanted.
--if it was me, I would not want to be like this (they then just say OHHH now that you put it that way, we see that you are doing this for her.......ummmm duh!!!!!)
--she will do anything for anybody....even if you are a complete stranger, she will go out of her way for you...for your needs....even if that meant sacrificing her own
---family is her life. Has always been her life. All of her sweat, tears, emotions, work is about family.

And on and on. So I'm glad that everyone is on the same page right now. It was nice to have advocates on our side. So some of the things that have gone wrong....Dad walked in one dad and her IV was leaking all over her bed...it was her blood pressure medication. You could have wrung out the meds. The nurse was at first telling my dad...no that's not happening...it's her sweating....hmmm

I walked in and her head was hanging to the side...one of her heart monitor cords was across her neck, pressing in. It looked like she was strangling herself. Then she had her band that holds up her breathing tubes, sinking on her top lip...so her tounge was resting on it. Ummm that's not comfortable.

Today she had blood in her urine. The nurse said it was because her blood pressure was low (because of all the adjustments to her meds). We talked to the nurse a few hours later and apparently it was clearing up, after they adjusted her meds to increase her pressure. She is starting to develop another fever about 99 degrees. I hope they aren't related, the blood and the fever. When I walked in her head was kind of hanging to the side. So I adjusted her and straightened out her head.

They finally washed her hair. But I look at her fingertips and she has blood all over them from the blood sugar tests. They usually just take her sugar and stick a cotton ball under her finger....so as the blood dries..the cotton sticks to it and her tips are full of cotton and blood. So everytime I see her, I clean off her fingers with a wet towel.

On a good note, her blood sugar is in the 70's right now. So they will be able to take her off the Insulin drip and just give her shots as needed. Also, they are taking a gastric tube out of her throat. So now she will only have her feeding and breathing tube going down her throat. The gastric tube is kinda thick. So I hope that eases up the yuckiness of having all that stuff down her throat.

For those of you who still read this and have made it through today's post. I thank you for listening. Please keep praying for her. I had a dream last night that I received a phone call from her and she was doing better. I asked her in the dream if we did the right thing by keeping her on all of the support...she shook her head yes. It was so nice to see her talking and being mom again. She still had to stay in a wheel chair because of her heart....but she was awake and alert and she kept getting better each day. I can't interpret dreams...but it did give me more faith and hope. If any of you interpret dreams, let me know your thoughts.

Thanks again!
Teresa

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November 25

Thanksgiving ended up being really nice. My brother and SIL busied themselves with cooking and my dad, DH and I hung out with the kids. It felt odd to not see mom there...but I somehow felt her presence. Dad visited with her in the morning and then left an hour after dinner to go back to see her. DH and I went to see her in the evening and my brother and SIL showed up about an hour after us to see her too.

Her urine cleared up. I'm so thankful for that. She looked a bit flushed because her nose and cheeks were pink, but she felt relatively cool. I was so glad for that. She also didn't have a temp. So I still don't understand why she was flushed. They are still trying to play with her BP meds. I know they can't do a tracheaotomy (sp?) without getting her off of them. So I guess it's just another waiting game with that. That's what this all is WAITING! That's the worse part for us...the best for her because she needs time to heal.

After they took that extra gastric tube out of her throat, she has been moving her mouth and tounge around more. I'm glad she can do that. She also didn't open her eyes as much today. That's another thing that kind of worried me. But this whole PVS things is so unpredictable. We watched the Charlie Brown Thanksgiving special with her. I just stood and rubbed her forehead and told her about our day. Dylan was moving alot so I put her hand against my belly.

DH asked his mom if we can combine the shower that my mom was going to give me with her shower....we still need so many things. His mom seemed okay with that. We said we would pay the difference. My dad offered....but with a $100 a day copay and not knowing financially what the future holds for mom and him....I can't even think about asking him for money. So we'll find a way to pull through.

DH started to show signs of grief the other day. I feel so bad because I want to reassure him we'll all be okay. He and I rely on my mom so much for things and now with that not an option...we have to really start thinking about our future. Mom was going to be our daycare provider...so knowing that you need to give these people so much notice.....I need to start looking for someone. He's also worried that we won't have enough for the baby. My mom always said that everything always works out...it always has....and I know if mom has anything to do with it....it always will.

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November 25

So I lost it today. Today is two weeks since mom had her cardiac arrest. It's been two weeks since we spoke, since I lost my everything. I was doing fine. Just fine. Then I found out that my MIL and FIL were driving down to see us....see me. I invited them earlier in the week because I thought it would be nice to have them here. So DH and I have been cleaning house. We haven't really done anything since all this happened with mom so the house is in disarray. Well I came across the bag of shower decorations and plates, forks, etc. We were supposed to have my shower on Dec 3. I just started thinking about how they were going to waste. About how they will not be used for their purpose. About how we picked crystal looking plastic to make it extra fancy. About the discussions we had about which to choose and how hard it was to find the right colors to match the prints. Then I lost it. I was looking through all of it and tears are falling down my face. I went to the bathroom and sat there and cried. Sobbed. I felt so stupid hiding in there....I didn't want my DH to see me cry. I don't know why. I'm crying as I type this and he could walk in at any time and see me. But at that time....I wanted to be alone.

It's so unfair!!!! I hate this and I'm so angry and I feel so lonely without her. I want so bad to get mad at someone. So bad to just kick and scream. Then I feel bad for acting so "whoa is me"...ya know?

I really need to be thankful that I can still go see her. That she didn't die that night. That I can still rest my cheek on her hand and tell her I love her. That I can still kiss her and brush her hair and take care of her. Is this ever going to get easier? I thought I was doing so well....and here I am sobbing. Thank you for all the PMs. Thank you for still praying.

I went over there today and she is the same. Really no change. I brushed her hair out again. Somehow that makes me feel like I'm taking care of her. I rearranged her pillow and wiped her forehead again with a cool cloth. Then I sat with DH and watched TV with my cheek on her hand. The a hole doctor came in and said "I will be in next to check on your loved one." It's my mom you ass! I debated for about 10 min whether or not to stay and talk to him....hear his lame diagnosis. Let him make me feel bad. He's the one that told my dad that they weren't going to do anything for her .....it's a waste of time.....so I decided to leave. What is he going to tell me that's different? Anything positive? Then I don't need to hear it.

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So I thought I lost it earlier...ummm no. My DH saw me crying as I was online....he came over and sat on the couch next to me and let me vent. To be honest it was the first time I really let loose. It all came out and I just talked and talked and cried and sobbed. He was really good and didn't say anything. He said he knew this would happen eventually because I haven't had a moment like this yet to vent.

After, he gave me a hug and he had tears too. I acknowledged his pain too and we sat numb. I feel better today. My eyes are puffy and red and I have a headache from all my crying...but I know it was needed. I haven't really confronted the whole thing yet.

My IL's are coming today. So I'll go see mom with my MIL. She is really amazing and I love her so much. She doesn't have any daughters, just 3 boys. So she treats me like a daughter. She has really been so supportive during this and it will be the first time I see her since this all happened. Thanks again for the prayers.

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November 27

IL's just left. It was really nice having them here for the last 24 hours. They brought a huge icechest with them and had all the leftover Thanksgiving stuff. We had a great dinner. When they first got here, they walked in with a mattress for the crib. They bought it off of our registry and surprised us with it. Now Dylan's crib is starting to look more complete. Mom was supposed to buy the crib set....so I don't know if I should ask Dad if he still wants to buy it for him.....how do I word that? MIL helped me focus more on Dylan this weekend. So it was nice to be excited about that again.

After my big meltdown on Friday, Dad called Sat. morning while I was in the shower and told Brian that Mom was completely off of her BP meds. That the whole morning she was moving her head on her own and she was keeping her eyes open more. He also said she lifted her right arm once by herself. Of course none of these were on command...but it was interesting to see how much she was doing without the meds. My dad kept saying that she doesn't handle medication well (she's a lightweight). So I'm wondering if being off of the meds....made her "come to" a bit. I hate getting my hopes up...but it felt so good to hear it.

So my MIL and I went down to see her in the afternoon and mom was big time sleeping. She barely roused at all for us. I told mom that I guess she used up all her energy to show off for dad. She looked really relaxed and peaceful. So I brushed her hair out again and she didn't even stir. I told her that she just didn't want to show off for my MIL. So before we left, they turned her and she started up coughing and gagging again. Her breathing was more labored. She always does that when they turn her...but they need to every 2 hours to prevent bed sores and to clean her up. So she wasn't too peaceful anymore...but more distressed.

Dad went back two more times after us.....I guess he couldn't sleep so he went at almost midnight. I know he needs to get through this in his own way....but I feel so bad for him. It must be so hard for him. I can vent to Brian, but he doesn't vent to anyone. I try to give him opportunities to talk to me....but I'm sure he wants to appear strong for me. He said that she was moving around more late last night and again this morning. So she must be more active in the mornings and at night. I'm bummed that I missed it. That's okay, at least I know it's happening. Ya know?

So that's pretty much the update. We're going to see her in just a bit. So I'll update my journal then.

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Just got back from seeing my mom. She looked so comfortable on her left side. I was happy because she did move her head quite a bit today. It was like she was adjusting her position. It was so nice to see her move on her own. Usually she just lays there and we move her if we think she might be uncomfortable. So as little as it is...it's a step in a good direction. She moved her arm a few times on her own too. Again it was like she was repositioning herself. She also opened her eyes a few times. All vitals looked good.

Well right before we were going to leave, they turned her. This always upsets her system. So her BP starts to dive too low. The nurse tried to move her into several different positions. She was on her right side. I guess because her heart is still so weak, putting her on her right side put some stress on her heart and that's why her BP went down. So the nurse put her on her back and elevated her feet. She suctioned her (which always raises her BP) and eventually it went up a bit. So we left. I hope they don't have to put her on meds. It seems like that would be such a set back....but I know we have to keep her heart as stable as possible. The respiratory therapist told me that they are also weaning her from the machine. So she is doing okay with that for now.

So some goods and bads....but we just have to hang in there. I talked to my dad and he still sounds the same. I wish I could take all his hurt away. Right now it feels like I have both parents "out of commission" right now. Sad

We'll just see what tomorrow brings!!!!

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I've been working late and then leaving to see mom at the hospital until late. I have a lot to post...so I'll catch up tomorrow! Love all of you that are thinking and praying still for me!!!!!

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December 3

Well I can't believe that it's been a week since I last journaled. I've literally been consumed with teaching, then trying to leave in time to see mom before dinner. Or I work in the classroom until late, go home have dinner, then go see mom. After I've checked email and the board....it's time for bed.

It seems as though a lot has happened this week....but to any passerby, everything is still the same.

Mom is really still the same. She is moving her head back and forth a lot more. It's almost like she is in a feverish state (that's the only way I can describe it....although she doesn't have a fever). She opens her eyes, but she still doesn't really see anything...or can't focus on anything. They have her (as of today) off blood pressure meds again....this is in hopes to be able to put the trach in so they can pull that breathing tube out of her throat. She was taken off the BP med (used to keep her BP up), at 10am Thurs. As of last night, she was still off of it. So we'll see if she can keep her BP up. If not, they'll put her back on the IV drip. As of right now she only is using one IV drip. She has a feeding tube that goes down her throat. She gets shots of insulin if her blood sugar is too high (that goes up and down usually). She gets a shot of medicine to make sure that her heart doesn't go into the same rhythm as it did at their house.

She is still unresponsive to commands. However, on Thursday night, she was responding to pain. I know the doctor's said she can't feel pain in this state. Well she is. I was pulling some of her tiny hairs out of this sticky bandage thing that holds the tubes up from her mouth. She was in a sense, wincing from the pain. I kept telling her I was sorry. She does that a lot now. Kind of squinches up her eyes and grimaces. I wonder if she is in pain from the breathing tube. When they cleaned her mouth out the other day with this wet sponge thing on a tube.....she also would kind of shiver from the weird, sweet taste of the stuff on the sponge. Then, the nurse came in and gave her a shot in her side...her body actually reacted to the pain of the shot. I told the nurse that she seemed to react to that. The nurse said, "yah she's been reacting to pain a lot today." This, to us, is progress. Especially if a person in PVS is not supposed to feel pain.

She also lifts her arm by bending at the elbow. She does this more when she has the grimace, ouchie, yuckie face. Dad said she is also starting to raise her shoulders, as though she is trying to adjust her position.

Yesterday, she began to blink with her eyes open or closed, if you snapped your fingers by her ears. So it seems that a startling sound will cause her to react. She also blinks her eyes if your finger comes close to her eyes.

So the question is....can she hear? Can she see and if so how much? Does her brain not allow her to move her body in response to commands, even if she is willing it to happen? Are all of these movements normal to a person going deeper into PVS (Persistent Vegetative State)?

Yesterday was my grandma's birthday. She passed a year ago from when my mom had her cardiac arrest. Today was supposed to be my baby shower that mom was throwing for me. I talked to mom last night about it. I told her that I don't care about a shower and that I just want to have her back.

On to my favorite topic....her doctors!!! :evil: So the "doctor of the week" calls my dad every few nights. Remember, she gets a new Intensivist each Tuesday. The doctors rotate thru for a week in ICU and then go back to their regular doctor's hours. So her doctor of the week calls my dad every other day just to tell him "there's no change"....even though they aren't with her as many hours as we are. She said she would only call my dad if there is a change. So she proceeds to call my dad the next day to tell him AGAIN if mom goes into another cardiac arrest, they will not try to restart her heart. My dad was like...oh yes you will. So the battle began. She said that it would be worthless to try and that it would cause more damage than good....etc.

So Dad called me and told me this. I can't believe...even after that "ethics meeting" that we are still having to express my mom's wishes. So I had enough and called the Social Worker...who, by the way, is supposed to be on our side. So she proceeds to tell me that it's ultimately the doctor's decision on what happens in the event my mom is coded. So I told her that my mom's wishes mean nothing...even if she had a Living Will, etc. She said that even if my mom's Living Will said that every measure (medicine, machine, doctor, etc) was to be taken to keep her alive...that the doctor could deny that. As an example (are you ready for this?) she said that it's like if I walked into the doctor's and said I wanted my hand cut off....that a doctor wouldn't do it because it wasn't ethical. She then said or if I wanted a hysterectomy...the doctor wouldn't agree to it because it would cause more damage...etc. I told her that that was a completely different case and not even comparable. I was so mad when I finished that conversation. I was proud of myself because that was the first time that I ever stuck up for someone besides myself. Good practice for the baby. So I called my dad and he felt hopeless. Like it didn't matter what we said.....what mom wants....we really can't fight this. Do we get a lawyer and battle this???

Well, not even 20 min later....the Ethics lady (she is contracted by Kaiser as a type of mediator...she doesn't work for them) called my Dad. She basically claimed BS on what the social worker said. She told my Dad that Kaiser has an obligation to find a doctor that will fulfill my mom's wishes. That is their responsibility. She was so upset by the whole thing that she called a meeting at noon on Friday. Dad said he and my brother would go. I had to work...and I really didn't want to go and get upset, especially being pregnant.

Dad said there was 9 other people there. Doctors, other ethics people, social worker....and he had to basically fight for mom's wishes. The ethics lady did such a great job fighting for us. There were 3 doctors there who said they could not follow our wishes...that they didn't feel it would help to resussitate mom. Everyone else there said they would follow thru and find mom a regular doctor who would. I guess these types of meetings rarely occur....only if the situation gets to the point where we might call a lawyer...as in this situation. Dad basically expressed that he hopes we don't have to call a meeting everytime we get a new "doctor of the week". The ethics lady told us to not worry about that. She also told Dad that Mom would be proud of the way we are fighting for her. Dad spent some time telling her about how wonderful mom is. How I am pregnant with my first and how hard it is for me to not celebrate that with mom. That mom may not see my first. I guess he was so emotional that the Ethics lady cried. My brother did really good fighting for her in there too. Especially when the doctor said, "It's not LIKELY that she will pull out of this." My brother was like, what do you mean LIKELY? What percentage do you put on that word. See they can't even say that this is all a for sure thing.

Dad said there was a doctor there, that told the panel that he couldn't believe that this is the issue. Why are they draggin this family through this when we are going to have to make more immediate decisions regarding her health later. Like if she develops a kidney failure and we have to decide to put her on dialysis. We shouldn't have to be fighting over whether or not to restart her heart.

We know her heart is weak. We know she needs to "wake up" before we can even attempt to work on her heart. But we are going to do whatever it takes to sustain her life. Sure it would be easier for us to let her go, then we could grieve and attempt to move on. We wouldnt have to see her like this....but you know what we will not betray her like this. If she passes...it's not going to be because we betrayed her wishes.

Sorry this was so long....but that is a complete update.

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Dad and I had a good talk about him. He doesn't want us to feel like we HAVE to spend time with him. I told him he is not on our "to do list". That we want to see him and spend time with him. When we would go visit him and mom, it wasn't just to see mom, but to see him too. So now that I know he is acting the way he is because he feels he is putting us out....I can now go spend more time with him and not feel as though I am taking over his grieving time. ya know? I feel much better that we talked. I told him we have to be closer now than ever!

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I have been thinking about you. Thanks for keeping us updated! Take care of yourself. You and your family are still in my prayers!

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Always in my thoughts Teresa. Keep your head up and keep as rested as possible.

Love & Hugs

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Goodness, Teresa...you've sure had your fair share this week, haven't you! I'm so proud of you and your family for fighting for your mom...I'd do the same if it were my mother. Keep your head up, you're doing a great job!!

It sounds like your mom is doing better. Her responses to stimuli (like pain) sound promising...I sure hope this is a sign. You and your family are always in my thoughts...stay rested and make sure you're eating well...(((HUGS)))!!

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Thanks for the update. I am still praying for all of you. Lots of Love coming your way.

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Thinking of you and your mom and praying for you guys all the time.. keep your head up.

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Love ya all! So DH and I went to Costco with my brother and SIL to buy some stuff for dinner. We told Dad that he is going to have dinner with us tonight and he can't say no. So we went over and made dinner. DH cooked and I cleaned up the kitchen. Dad is practically living in the living room. I don't think he sleeps in the bedroom and I don't think that he stays in the office (that's where she went into arrest) unless he is paying bills or doing stuff for the business. The coffee table has mail stacked up on it. He moved his laptop into the living room (it used to only be in the office).

The kids were there too. I know it's hard for Dad to hang out with the kids because they make him think of Mom. She is in love with her grandchildren. They are her and Dad's pride and joy. He is such a great grandpa. He plays all the girly games with the girls and plays with tools and stuff with my 2-year old nephew.

The girls wanted to spend the night and Dad said yes....but I think my brother realized that it is still hard for him. Later on the phone, Dad told me it would have been difficult for him to have them there. I told him it will get easier the more it happens. He opened up a bit to me over the phone tonight. He said that it is so hard for him to sit there and look at all the stuff in the house. Everything reminds him of mom. He will kind of sit in a daze and then snap himself out of it and occupy his mind on something else. I told him I understand. I also told him that he has to get rest and take care of himself. He said it is so hard. I told him that we need for him to be healthy and not end up sick like mom. He said he knows.

I went to visit Mom after we watched a movie together. I was so tired..but I knew that if I didn't go to see her....something would happen and I would regret it. The nurse actually told us that she read that Mom is being a lot more responsive, she's just not following with her eyes. I know she is showing more responsiveness. I was brushing her hair again and she kept wincing as I was working out the knots. I kept telling her that I was so sorry. I told her we are just taking it step by step, but I was so proud of her and the growth she's made. They put her back on the BP meds. Her BP started to drop too low again. Well...hopefully with time. It seems that 48 hours without it is the max her body will let her go without it. I can't seem to help thinking that taking her on and off the meds...must be not good for her body. But what do I know? Thanks again for the well wishes and support...keep praying for her!!!! I don't have a problem with you all replying directly to this journal. I like to have all the prayers and wishes together.

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Tell your dad to hang in there! I was touched by how much he loves his wife-- that's an amazing marriage they have!

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Still praying for you and thinking of you Teresa! :bighug:

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Your Dad sounds like a wonderful person and obviously is still completely in love with your Mom. I'm so glad you've got eachother - to fight for your Mom and keep eachother going.

I think you need to fight for your Mom's wishes. If it's what she wants then you need to keep going, you're doing a great job so far and something tells me your Dad isn't going to give up.

It's great that she's getting more responsive, I'm praying that she keeps improving and gets off those meds long enough to put the trach in.

Keep us posted and take care of that little bundle of joy!

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Always thinking of you and we are praying for you and your family too. Love you always, call me if you need anything, D

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Saw mom today. She was in her relaxing state today. Her eyes were open almost the whole time I was there. I brought a book to read...but felt guilty when I wanted to read it because I felt like I should be talking to her...since she was "awake". I'm reading "A Million Little Pieces" it was an Oprah's book choice and there are a lot of cuss words...so I couldn't really read it aloud...I could just imagine the nurse walking in on that!!!

Anyways, the nurse (and later I found out that the doctor told my Dad) said that the doctors are going to have a consultation meeting tomorrow to put a trach in mom and a feeding tube in her stomach. I can't wait. Having those tubes out of her mouth and throat are going to make her feel so much better. I know that other complications may arise...but she's had this in a few weeks too long. Mom is still on BP meds...it's interesting how it was black and white about how she can't be on BP meds and have the trach put in....now it doesn't matter???? I don't get it. So that proves that there is a gray area in medicine.

The "doctor of the week" also told Dad that mom seems a lot more responsive lately. Hmmm. Ya think? If they spent more than 15 minutes in there at a time, they'd see that. I can't believe the doctor actually admitted that to my dad. Especially because she was the one who denied medical treatment in the event of another heart arrest.

So we'll see how it goes. I'll let you know what happens as soon as I hear. Hugs and kisses to your messages of support and prayer....

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That is damn good news! I'm really pleased for her. I hope it all goes smoothly and like I say - she continues to improve every day.

Smile

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You and your family are in my prayers. I'm glad that she is being more responsive. Keep your head up, you are being so strong standing up for your mothers wishes! It is hard sometimes, I know a went through a 2 years cancer battle with my mother almost 3 years ago but things happen for a reason. Who knows why but they do.

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That is very good news! Is there a possibility that she might be able to communicate a little if the tubes aren't in there? I'll keep my fingers crossed. (((HUGS)))

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That is wonderful news!!! I am praying always for your Mom and family!! Hang in there, you are doing an amazing job! Much more than medicine could ever do!

((HUGS))

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great news! i'm thinking of you and your family and praying for you!

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I'm sure having those tubes out will make her feel a TON better. Please let us know how all that goes and give your dad a hug from all of us.

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Wonderful news! Your mom sounds like a fighter and she has such a wonderful, loving family on her side. :bighug:

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Congrats on the good news, I'm so happy for you and your family. Still thinking about you and wishing the best or your mom...(((HUGS)))!

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December 5

I guess they didn't want to wait any longer. Dad called me today and told me that they went ahead and put Mom's trach in. So I was so surprised because I didn't realize it would happen so fast. I went over to see her as soon as I could.

She looked definitely out of it, which makes sense because she is just coming out of anesthesia. She opened her eyes a lot and they are bloodshot. Her trach looked okay. She had a lot of blood still around the cloth that is between her throat and the tubing. She also is coughing a whole lot because the mucus and blood is oozing down her throat. I can't wait until it all heals!!! It was really quite awful to see her today. Since mom is showing small growth...and we rely on that growth...this seemed like such a setback today!

Her hands were curled up tight against her body. It took all my strength to straighten out her elbows and fingers. She also had this weird eyes wide open...kind of painful look in her face. As I was leaving, I noticed she broke out in a sweat...all over her face and body. I also noticed that her trach was leaking a lot more blood. Her nurse was on break, so I asked another nurse to look at her. She changed her cloth....but didn't seem too concerned. The nurse kind of made a comment that I may be stimulating her too much (I thought PVS patients couldn't be stimulated?????)...so I decided to go ahead and go home. It takes about 20 minutes to go home....so I'd be in time for dinner. I was already there for almost 2 hours. So it was okay to leave. I called Dad and talked to him about it. He said that maybe he should just stay home and let her rest, I said that sounds like it would be a good idea.

I know it will take a few days for her to heal....it's just so hard to see her trying to come out of the surgery. I'm sure her throat is raw and yucky from having that tube put in.

They said that they are going to wait a bit to move her feeding tube to her stomach because she is on blood thinners. I guess that the insertion of the tube is done blindly...so if they hit a vessel, she would be in trouble. So I'm not sure what they will do about that.

The doctors (surgeons) were really comforting to Dad. So I'm happy about that. They also said that now she can have some Physical Therapy to start stretching her joints and muscles.....that makes me very happy.

Her face did look more comfortable without the big tube...but like I said....I hated to see her look like she is in pain. Pray for a speedy recovery!!! I guess with the trach...she will have less chances to get pneumonia. That's a good thing! So again....we are living on patience and time.

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Good to read some more positive updates Teresa!!!! You will continue to be in my thoughts and prayers. Keep your head up and get lots of rest!!

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Praying for that speedy recovery Teresa. Make sure you take care of yourself too. I'm glad they put the trach in even if it means that she is in a little discomfort right now. Hope she heals quickly and starts that PT soon.

Hugs, Naomi x

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Teresa you and your family are still in my thoughts and prayers, I am sorry for all you are going through, but take care of yourself.Bless your heart.

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It's all ups and downs, huh? You just keep hanging in there!! You know you and your family are positively surrounded by loving thoughts and lots of prayers, so try to take comfort in that. Love you!!

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Big fat hugs, Teresa!

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I'm glad there are so many positives to putting the trach in--it must be difficult to see her go through the discomfort of the process, though. Just remember that it is all for the good and she'll be so much more comfortable once things heal up. Thinking of you and sending more big belly hugs!

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Thinking about you and your family. I am so glad your mom is making improvements. Huge hugs & lots of love!!!!

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I can't believe it's been so long since I have posted. Well Tuesday I went to see mom. She looked so much worse since this surgery. She is taking on more of the vegetative state characteristics. I don't know if she is moving further into this PVS thing or.....if she is getting better (even though it doesn't look that way).

Wednesday and Thursday I was really sick and didn't want to give it to mom. DH has bronchitis and I think I'm following close behind. So it was the first time that I missed seeing her into 4 weeks.

Friday, I went to see her and DH met me there....he works around the corner. She looked better. They put her feeding tube in her nose. They are supposed to move it to her stomach...and took Xrays of her abdomen just before I came. So we'll see. They have her on blood thinners to prevent clotting...but I guess they can't put the feeding tube in until she is off those.

Her mouth looked like normal. Nothing in it. She was moving her tounge around her mouth a lot. Her face was flushed and had color to it. She was acting totally different. If you kissed her, touched her hair or face, or even just spoke to her....she would grimace, jerk her head back and 'posture' her arms and hands (clench up her hands into fists and draw them to her chest). It almost looks like she is in pain...but I guess this is really common in PVS.

What was really interesting was that she really does seem to be stimulated easily. I had went to the side of her bed and took her hand and used all my strength to pull it down to be straight. I wanted to hold her hand. Well I was telling her about what's been going on. She started to pull her hand away from me back to her chest. (It wasn't because I asked her to...it was a reflex like thing she was doing). So I told her..."mom, stop it you're hurting me"....she was pulling and squeezing hard..."mom, you are so strong...give me your hand"....as I was saying that I was laughing...making a game with her. Well her eyes went from the corner of the room, straight to me. (Now I don't know if that was a coincidence or what). I looked at her and smiled and told her to stop being so onery. I swear a smirky look came over her face. It was like she was playing the game with me. I know it may be 'what I wanted to believe'....but it felt so real for that moment. So we played the me pulling her arm down and her moving it up game. I want so bad to believe that she was moving it intentionally. That maybe she just can't squeeze my hand. Maybe she needs to use her upper body to move her arm. Who knows. It was nice to think that I had a small piece back.

Well my husband came in after he got off work and I told him about what she was doing with me. He said he noticed that she looked thinner and that she looked more "responsive/aware/stimulated"....something like that. The nurse came in to change her trach bandages. As the nurse was doing so, mom was moving around a lot. Like she was trying to get her to stop. She started coughing because the tube was moving in her chest and then lifted her arm straight up like she was going to fight the nurse away. Later the nurse had this sponge like thing with a suction inside to clean mom's throat and mouth. As soon as the nurse started to put it in her mouth, mom closed her mouth tight and wouldn't let her do it. I was laughing and keep saying "Mom! Quit being so bad...let her clean your mouth!!" It was like I had to reprimand her! So the nurse waited patiently and mom finally opened her mouth just a bit and the nurse got it in.

Now like I said...this could all just mean that she's "further slipping into this PVS thing"...but again....it's different and it's a change. So I don't know. It just felt nice and warm. I had a dream about her again last night, probably because of what happened. She was awake again and standing in the kitchen making herself a sandwich and was putting on mayo. I walked in and her hair was styled and pretty. (my mom never styled her hair or wore makeup really...she was very plain jane....I used to call her a hillbilly because she was so simple). I remembered trying to talk to her and again...she said some words but mostly it was facial expressions and looks she would give. It was nice...but bad to wake up and realize it was real.

Baby Dylan is moving around and seems to be very happy and active. I had mom feel him yesterday...so hopefully she felt something. Thanks again for your love and prayers. Baby steps!!!!

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December 10

Just got back from visiting with mom tonight. I guess because she is still off the blood pressure meds and doing okay, they are moving her into a regular hospital room. No more ICU. It's a good thing because she is stable. I can't help but feel a bit sad by it because I feel like she's as good as she is going to get. I know I shouldn't be so pessimistic....think good thoughts Teresa!!!!

She was moving about the same tonight. No big difference. I walked into the room and her foot was hanging off the side of the bed. She's moving her leg by herself....in a reflex sort of way. She also moves her toes. It seems like her right side is a bit more active. She opens her eyes when you speak to her and reacts to voices. If you stop talking, she will close her eyes for a sleep. My husband yelled out her name and told her to wake up, she roused her body and opened her eyes. I don't know if she recognizes our voices, but she responds to them.........Baby steps!!!

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Teresa,
Please forgive me for not posting on your journal sooner. You and your family have been in my thoughts everyday and I am praying that your mom will make a full recovery. I know how hard it is to see your mom lay there but it sounds to me like she is responding very well to you and others. Keep your faith and believe! THis will help you through. I am so sorry that you are having to go through all of this right now. I know that it makes the holidays difficult. You are in my thoughts and prayers and if there is anything that I can do...PLease, let me know! WE are here for you anytime! Take care! Lots of hugs!

Karensa

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Hi Teresa

Glad you and Dylan are doing okay. Sorry to hear that you've been sick, but I hope you're on the mend.

Don't be discouraged. I think you should hold on to whatever positive signs you get from your Mom, nobody - not even the best doctors - truly know what somebody feels or experiences at these times. When it comes down to it your gut is probably a better judge, you should trust your intuition.

I hope she is going to continue to develop and that you have some concrete sign soon, but in the mean time, stay positive. I am thinking of you all and I hope your Dad is coping okay.

Take care of each other.

Lots of love and hugs

Naomi x

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That's great that your mom can be in a regular hospital room now. Maybe there will be less interference with her and she's now in a more comfortable, less intimidating environment. Keep giving us updates--thinking of you all and sending love!

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