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.
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.
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 ***! 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.
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.
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.
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.
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!!! 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.
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!