Sarah, Bob, and Lanadoodles...

On Friday afternoon we had a visit from Sarah, Bob and Lana.  Even though I feel horrible, look like crap and am always in my PJs, it felt really good to do something that felt 'normal'. I haven't been able to get distracted by anything since Mom's heart attack, but having Sarah, Bob and Lana here did the trick! 


Just today I talked to Mom about continuing to use my blog to update on how she is doing, but also returning to some sort of normalcy by blogging about topics I normally would have blogged about. The transition feels strange, but also important to moving forward with our lives.

This was my first time meeting Lana (also known as Doodles or Lanadoodles :)). It's impossible not to be cheered by her joyful personality and her big smile.  Six months is such a fun age, and Doodles let me hold her and give her a bottle. Sarah and Bob were so laid back about letting me do all of this. My ability to focus on a conversation wasn't too good...so I apologize to them for that!

While they were in town Sarah and Bob took care of shopping for treats for Asher, bringing in our mail, bringing in the trash cans and recycle bins, returning our overdue (oops!) library books, and bringing me new music to listen to (very excited about this!). They probably would have cleaned the whole house if that's what I had asked for. :P

In times like these we often don't know what it is that we need, but Sarah and Bob knew what I needed that day, and I'm so very grateful. Doodles knew too (Her shirt said: Everyone is thankful for Me. :)). 

Blessings,

Emily

Photos: Sarah, Bob and Lana; Doodles flashes a smile for the camera.

Recovering

Mr. Fuzz has completely become "Mom's dog" since she has been home. He also is a huge bed hog (we think he finds the air mattress extra-comfy). 


I miss him like crazy, but it also comforts me that he is 'keeping watch' on her during the day and especially at night. I have, of course, suggested that we just need to get another dog--one for each of us. Ha! Just what mom needs when she is supposed to be reducing her stress.


We have had a very quiet weekend, thankfully. Mom is resting and recovering and trying to pace herself. Thank you for all of the awesome snail mail you've been sending to brighten our days!


I'm still struggling with a lot of anxiety and panic, and a bit of a set-back from all of the 'excitement'. I'm driving her crazy with my hypervigilence. Yes, I have emailed my doctor to see what we can do about this!


As always, we are thankful for you, at this season and always. We hope you had a blessed holiday.


Blessings,


Emily


Photo: Asher taking care of Mom. :)

Happy Thanksgiving!

Thanksgiving Blessings to You!

We hope you are having a day surrounded by those you love.

We are so very grateful for YOU!

Our 'big' plan is to watch a cheesy movie together (with Asher too, of course). We're both exhausted. I haven't been able to relax at all since this happened. We're just now having a little time to talk about how this is affecting us.

We don't have much news. Mom's rash is MUCH better today and we hope this means it was the ACE inhibitor and not the Plavix. She's still extremely tired and gets fatigued easily. I'm still very, very scared and worried, but I also think we have three good 'theories' as to what is going on. It's just sorting out what's what. I think that either she is 1. dealing with some form of anemia, 2. struggling with adjusting to the medications, and/or 3. just plain exhausted from the entire experience. I also think we cannot minimize that she has not stopped being a caregiver for over 12 years and her body finally sent her a strong message. It wants some rest. And no, the cardiologist did not call today. :(

At this Thanksgiving we are grateful for many, many things. As difficult and awful as this experience is, the continued kindness of others reminds us that we can get through each day. We also know that we are blessed to be sharing this holiday together. 

Now, go enjoy your turkey and the company of those you love!

Blessings,

Emily

Mom is Home (and It Takes a Village)...

Here I am with my nightly 'news report'. I know, you just can't wait to open your email every morning for this. It beats Huffington Post, People.com, Facebook,The Onion, The Daily Beast, Salon.com, and even the NY Times. Ha! I've been so crazy lately, I think I may have kicked my addiction to Facebook! (I have not, however, kicked my pajama addiction. In fact, it seems to be worsening. :))


Anyways, Mom is home and she and Asher are asleep in the den. He decided to 'guard' her tonight. 


We don't know much more than we did yesterday, but here is what we do know:

• Mom is definitely having an allergic reaction to one of the meds. Right after the stent is inserted they start so many medications at one time it is difficult to figure out what is causing which side effects. She has already stopped the ACE inhibitor (Vasotec), but it can take up to two weeks for it to completely leave the body. Her rash covers most of her body and is still super itchy. The other possibility is the Plavix. She may start an alternative to Plavix tomorrow just to see if she can clear up the rash.
• Mom DID get to see her cardiologist today. He did a stress test on her. Because of her back and neck problems, she had to do the test in which a medication is injected to increase the heart rate. Despite the fact that she said she felt as if her head was going to explode during the test, her heart muscle, the valves, etc. look VERY GOOD. She got to see all of the pretty pictures of her heart. Everything looks good.
• She is anemic and they don't know what is going on. We have some concern about this because my uncle developed hemolysis or hemolytic anemia around the time he had his stents put it. This is an extremely rare, but dangerous, form of anemia. The cardiologist took the anemia very seriously and did a bunch of specialized tests. Mom's looking kinda yellow. 
• We have no answers as to the cause of her angina-type symptoms, except that she has not had any since yesterday (good news!). The cardiologist said that if the symptoms were truly angina the nitroglycerin would help immediately. He doesn't feel her symptoms are heart-related, but we also don't have alternative answers other than something like indigestion. :P EVERY doctor that Mom saw (ER, hospitalists, cardiologist) said that angina was NOT normal after having a stent placed, so we were rightfully concerned.
• The cardiologist wrote on his OWN notepad to call Mom personally tomorrow to see how she was feeling. Keep your fingers crossed!

The nurses all reassured Mom that she absolutely made the right decision to go to the ER. Understandably, she's just frustrated with all of the waiting and another hospital stay, but Oh, how she reminds me of my grandmother and my uncle. They are all very crabby patients! 

We are also learning that Mom is a lot like me when it comes to medication sensitivities, and we will need to have patience as we try to find what she is going to tolerate and what is going to help her to feel better. As even Mom will admit, patience is NOT her middle name.

She also has a follow-up next week with the PA, but her cardiologist said he would be in the office also that day, as Mom mentioned that she did not feel comfortable with the PA. 

Mom seems much less 'rattled' than I am over all of this. Whether rational or not, I worry that she won't wake up in the morning...

Tonight our neighbor delivered a home cooked meal of salmon, rice and asparagus already served on plates. I am so grateful to my friend who suggested the Take Them a Meal site! (Note: If you emailed me for a password to our site and I never got back to you...um, could you remind me? I know, this is embarrassing!)  It was the first time Mom and I ate a meal and actually enjoyed it since this all happened. We both wanted to lose weight, but this wasn't quite the way we had planned to do so! Food tasted good tonight, and we took that as a good sign for both of us. Dad also made me eggs for lunch, which he was very proud of. :)

I never end a post these days without expressing our gratitude for each and every one of you. I want to thank you all for reaching out in many different ways. We truly have been surrounded by a village, one that I think we never truly trusted we had.  I think we've felt so busy surviving and taking care of ourselves, that we don't feel we give back in the ways we wish we could. So, the generosity that continues to come our way often feels 'undeserved', and is certainly overwhelming and humbling. 

Thank you to each of you for doing what you are good at, whether it is prayer, emotional support or physical support. All are equally valued.

Without Mom home, I rely on help for almost everything from helping to get out meals, feeding Asher, letting him out, etc. Today, we were blessed with a grocery delivery, a Farmer's market delivery, a dog groomer pick up and drop off for Asher, and dinner, as well as continued help from Dad and Abbie. While today had to be spent focusing on the physical needs of the house, emotional support continued to come in--through cards, flowers, emails and calls. Mom was so excited to come home to cards and flowers after her not-so-pleasant hospital stay. I want to thank those of you who continue to email, call and text with support, understanding, information, and love. I have not been able to do much email beyond taking care of coordinating things...  

Thank you to ALL of you for being our village.

May your Thanksgiving be blessed, peaceful, full of gratitude, and spent surrounded by those you love most.

Blessings, 

Emily

Mom Readmitted...

Hello Friends and Family!


Despite our hopes for no more 'excitement', Mom is back in the hospital. Dad took her to the ER at 4 in the afternoon, and she was finally taken to her room sometime after 9:30. To say is she is not a happy camper is putting it mildly! She feels that it was a mistake to go the ER, but she's been overruled by everyone else. :P


Unfortunately, she hasn't gotten any answers, they didn't speak to a cardiologist yet, and she won't see someone until the morning.


It's been a frustrating day. She continues to have an itchy rash that has spread from her core to her arms and legs body and has not improved despite stopping two of the medications and taking a lot of benedryl. 


Of biggest concern is the continued angina attacks, which are occurring 2-3 times a day and the fact that she feels so lousy overall. When she called the pharmacist this afternoon to refill her nitroglycerin they were alarmed at how many tablets she had needed in such a short time. Thank goodness for good pharmacists. The ER doctor was also concerned. I think this was the primary reason for her being admitted.The angina attacks are what have really had me feeling on edge and on the verge of panic. (I know, this doesn't help anyone or anything.)


Other than showing a little anemia on her blood work, other work ups appear normal at this point. 


We're so frustrated because Mom had already called regarding the rash yesterday and was told to stop two of her medications. When she called to follow-up this morning at 11 AM, the nurse seemed very attentive and assured Mom she would speak with the cardiologist and get back to her. After we did not hear back and had also spoken to the pharmacist, Mom called again at 3 PM at which time they said they hadn't spoken to anyone yet. She called again at 4 PM at which time the nurse asked her if she had requested an appointment. What? No. We had been told they would speak to the cardiologist and get back to us. He was up at the hospital when she had called at 11. 


The rest of the conversation wasn't pretty. Mom was told that she should go to the ER or she could be seen by the PA at 10:00 tomorrow morning. We're terribly frustrated to have had to make an ER trip, when we took all measures to get in touch with the office and they still sent her to the ER during office hours. 


Her cardiologist is very good. It's just getting messages TO him that is the challenge.


I have been a patient for 12 1/2 years. Mom has been one for a week. I hate watching her go through the same frustrations that I do and watching how hard it is to advocate for yourself when you are so confused and tired and exhausted and overwhelmed. It's so frustrating to be told they will speak to the doctor and then they don't. The whole day is spent waiting for the phone to ring. And it ends with no answers.


Dad took Mom to the ER, and again, Jeannine was there to be with Mom when the doctor came in to see her. Jeannine will be on duty again all day. I know she's the person to do this all, but it is so much to ask of one person. Plus, she has to deal with all of my panic! 


Dad and Abbie came over tonight to help me and will again help tomorrow. Asher got a walk with the neighbor girl today, a friend is grocery shopping for us tomorrow, another is going to the market, another is bringing dinner, and we have been getting some wonderful snail mail. We will never be able to repay the kindness we are receiving. 


In my world, I'm feeling pretty awful physically.  And I'm very scared, worried, and overwhelmed. I feel so helpless. I feel like I should 'know better' what to do. I miss Mom and I hate not being able to take her to the ER or be at the hospital with her.


May your Thanksgiving week be MUCH more peaceful and healthy! 


And as always, thank you for your continued prayers, su.pport, and love...


Blessings,


Emily

Weekend Update

Hello Family and Friends!


Mom and Asher have already hit the sack. I'm here with the update! :)


We're still navigating things, trying to figure out what's what, and trying to recuperate. Mom has continued to have episodes that we think may be angina. The nitroglycerin seems to help. We've been using it, but we need to learn when to use it and when not to--I don't want to keep handing it out to her like candy! She has episodes at predictable times each day. She's also having an allergic reaction to one of the medications, so she has a nice itchy rash all over her middle. The on-call doctor had her stop her Ace Inhibitor and Lipitor until she can get checked out.


Looks like she'll probably be heading to the doctor again tomorrow! I think I come by  my med sensitivities and complications honestly! :P Of course, I've had about 12 years to get used to this, and she's used to being healthy as a horse. 


It is a bit overwhelming to have two 'patients' in the house. I'm trying to navigate an entirely new path medically for my treatment, and we are trying to learn about all of the things we need to do for Mom's health. Mostly, right now we just want to REST, but it's hard to get it when our bodies don't always cooperate!


Saturday we both completely crashed out in the living room together. We 'watched' the football game (mostly we slept). She's been sleeping pretty well--much better than me, as I'm the hypervigilent one.


Today, Mom said she 'felt like a human being' for the first time since her heart attack. And overall she did much better today. This was very encouraging. 


We also felt well enough to watch a movie together, which was such a nice 'normal' thing to do and a good distraction. It was the first time I've been able to be distracted since this all happened. And, we both felt hungry for the first time today. We had been living on Scott's chicken soup and applesauce as nourishment for body and soul. Today we branched out a bit. :)


So, that's the update for now! 


Continued thanks for EVERYTHING!!!!!!!!!! 


Blessings,


Emily

Friday Night Check-In

Hello from our camp out in my room! 


Mom is already snoring away, after watching some Martha Stewart.  Asher is again keeping watch on her side of the bed. 


Last night was a long night. Mom slept, but I was feeling so anxious I didn't sleep much at all. I was extremely unsettled about what happened right before her discharge. Thankfully, a friend who is also a doctor, emailed me and validated my concern for what happened. Jeannine, too, was very upset. 


Actually, when Mom had her episode, she had already signed her discharge papers--so I think the nurse did not want to deal with the possibility of re-admitting her, etc. and calling the doctor. He overstepped by giving her Zofran for symptoms that were classic heart attack symptoms. (She wasn't just having a little bit of nausea).


Mom called the doctor this morning but was unable to get through. Thankfully, as soon as they received the report from the hospital that an 'episode' had happened right before she left the hospital, one of the nurses from the cardiologists office called to express her concern and see how Mom was feeling. They were NOT happy that a doctor had not been called. 


Mom went to see the PA this afternoon, had another EKG and some blood work. The PA thought the event may have been med-related, but we really aren't convinced of this. He lowered her dose of Lipitor and the beta-blocker based on some of the side effects she is having, including low blood pressure. Upon standing she had numbers like me! :P She is very weak and tired which is to be expected, but we also think some of it is from the medication. We're thankful she was seen before the weekend.


The PA said the the risk of a second heart attack is highest within the first 24 hours after a stent is placed, and then again after six months when the scar tissue is forming. The risk now should be very minimal. 


We have a new 'normal' and a new lifestyle to get used to. And tonight we have the nitroglycerin on hand. Mom is a terrible patient! And I am learning how easy it is to go into caregiver mode and not take care of myself. I really hope that I can learn to sleep again! It's difficult now to know what to worry about and what not to. Tonight she woke up complaining of indigestion (something new and more frequent in the last month), and I didn't know if it was the side effects of the Lipitor of if I should give her a nitroglycerin. She seems to have fallen back to sleep...


We are hoping for a peaceful weekend of resting, wearing pajamas, watching some TV, and eating the wonderful soup and applesauce we have here. 


I can't ever say thank you enough for the prayers, the food, the rides,the grocery shopping, the laundry-doing, the messages, the love...we have been so blessed during this time and always. I started reading some of your emails and messages to mom today and will hopefully do more of that this weekend.


If you don't get any blog updates assume no news is good news and that Mom and I are just getting in some recuperation time. My ANS is an unhappy camper!


If you are still looking for ways to help from in town or out of town, please head over to www.takethemameal.com. Shoot me an email for our password. Mom thinks she's going to be ready to do things right quick. :P I told you she is a difficult patient!


Blessings,


Emily