My mom's situation
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
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
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
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
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
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 *** 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
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
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 ***....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
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
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