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

Mom is Home! And How to Help...

Mom is HOME!!!!

She got home about 6:00 tonight. So, I'm signing in for my nightly report!

Right now she's asleep in my bed. We have been cuddling and resting. We crawled into bed very early, at which time she said "I feel pretty awake". Ha! Within about five minutes she was snoring. Asher is lying right next to her side of the bed. I think he missed her too, and is worried!

She can only do stairs 2-3 times a day, so for now she's up here with me. 

I haven't come down from 'hypervigilent mode' (even though I know this is supposed to be Asher's job!). I am a nervous wreck and getting a feel for what I've put Mom through over the years! 

Just after the doctor came to see Mom and discharge her, she had an episode similar to those she had been having leading up to her heart attack: Nausea, flushing, and chest tightness. It was also at the exact same time of day she had an episode Monday evening. The nurse gave her Zofran and still sent her home. She said the episode really scared her, and both of us feel unsure about whether she should have been able to come home. But the nurse did not call the doctor and still sent her home. If any of my doctor friends who have offered heir expertise have any advice or things I should know, please tell me! I'm so scared right now!

She has promised me that she will wake me (if I ever fall asleep anyways!) immediately if she has any symptoms and we will call 911. We haven't gotten her nitroglycerin or baby aspirin yet because she got home so late. None of this calling 911 and leaving without telling me! As of now she has not had any more symptoms and is sleeping. I'm praying hard we have a peaceful night.

The wonderful offers for help and support continue to come in. Today I wasn't able to do as much as I had hoped, as I finally crashed out after the adrenaline from the past two days subsided a bit. It was the first day that I felt so unable to cope with having Mom away and needing things done. I called our neighbor, who is so motherly to me, just to hear her voice. She kept saying: "What do you need?" I said: "I don't know." She said: "Well, do you need me to do your laundry?" Bingo! That was what I needed today. So, a laundry fairy came to get my laundry! :) Oh, and that 'fairy' gave good 'Mommy hugs' too. I also feasted on food from others.

I was able to set up a site on Take Them a Meal. This site allows people to sign up for meals, see what sort of things we need, see what other folks are bringing, etc. In the 'directions' area I have also listed some other things that we may need help with such as grocery shopping, so I will update that as I am able. I will know more after Mom and I have more time to go over her restrictions and limitations. I feel very scared about protecting both of us health-wise and not overdoing it. If you have called and offered help or a listening ear and I haven't gotten back to you yet, please know that we will continue to reach out and need help over a period of time so the fact that we may not have been in touch yet does not mean that you aren't needed or appreciated!

The site is www.takethemameal.com. You will be asked to enter our last name and a password, so you will need to email me for that information, as this blog is not a place that I want to publish any information that gives personal details about our address, last name, when we are home or not home, places of employment, etc.

I'll try to get out more information as I'm able. We are hoping for some quiet time together to rest and recuperate from the 'excitement' of the past three days.

Right now, I just want to be with Mom. And I want to make it through the night with her safe. 

Blessings,

Emily

The Mom Update...

Hello Friends and Family!


Mr. Fuzz and I are missing Mom like crazy. I've talked to her four times today! She is very ready to fly the coop, but we are not sure if she is going to get to come home on Thursday or not. Boo!  


I guess the first 3-4 days after a stent is placed are the highest risk time for any complications from the stent such as a heart attack. In some ways, it gives me comfort to know that she is being monitored so closely. Yet, I know she's really ready to come home. And, it's not like the hospital is a good place to get any rest. It's boring, but also not at all restful. 


She is still in the ICU with a wonderful view of the roof and air conditioner. Too bad because the hospital is actually positioned so that many of the rooms have a beautiful view of the mountains. The only reason she was not transferred to PCU today was because there were no rooms available. The one nice thing about the ICU is that she doesn't have a roommate. But she has to deal with being tethered to the wall all of the time. 


We don't have a lot of news to report. The cardiologist she saw today said that he would consider Mom's 'incident' a heart attack based on her EKG. I'm not sure what to make of this technicality. In the end, what we need to do to make sure we don't have any more 'incidents' is the same, regardless. And the fact that her heart is in good shape is the good news. Also, they were able to insert the cath through her wrist, rather than her groin which reduces the risk of bleeding complications. And if bleeding does occur, it's easier to catch because it's in the wrist.


I'm starting to get more details of what actually happened the night she called the ambulance. And more details of the symptoms she had been having leading up to that night. She definitely fit the classic women's heart attack symptoms, especially with the nausea (she is never nauseous!).


Thanks to the folks who brought food and did a grocery run today! Hooray! Thanks to Dad and Abbie who put in more hours today. Abbie is really helping to keep the house 'running' by loading and unloading the dishwasher, picking up, etc. and also helping me get my hair washed. D and A have been feeding Fuzz Face, letting him out, and all that good stuff.


Thankfully I got a good night's sleep last night. The wonderful thing is that I can call the ICU at any time and get an update on Mom. So I did this last night at 1 AM right before I wanted to go to sleep. When the nurse told me how well Mom was doing I felt like I could go to sleep. I knew Jeannine would be there early in the morning. 


I am going to do the same thing tonight!


Continued thanks to the many people who have called, emailed, texted, and gchatted me today. It's really keeping me going and sustaining me to have news and support from you all. I'm completely overwhelmed by your continued kindness. 


I so appreciate the offers for help, and for letting me know what things you feel comfortable doing. I hope to have a more quiet day tomorrow where I can write down who has offered to do what jobs and figure out what kind of help we might need. Sometimes I just don't know what it is that we need! :P I know many of you who are far away are feeling especially challenged with how to help...but your emails, texts, prayers, and support ARE helping! :)


Blessings,


Emily

Update with Good News and Many Thanks!

Dear Friends and Family!


I don't even know where to start. I've slept about 6 hours in the past 36 hours, so I'm beyond exhausted. But wanted to get out an update to let you know what we know right now. First, an update on how things are going, and then some more details on the help I think we will need as we've been blessed with an abundance of generous offers. I wish I could respond to all of you individually, but right now that is not possible. Know that I've cried and smiled a lot today because of the love we're receiving. We are so blessed by you!


The very good news is that it appears that Mom did NOT have a heart attack. While in the ambulance it went down to 16 beats a minute, but never stopped. She never lost blood flow to the brain. Her heart muscles looked good and her enzyme levels did also. She literally called the ambulance just in time. 


The cardiologist said she was 'trying very hard' to have a heart attack. :P I think, in fact, she's been on the verge of one for a while now. Right now I'm just thanking God she called the ambulance when she did, because she literally lost consciousness right as they were pulling up to the hospital entrance. 


Still,l I noticed when I was able to get out of bed today that she had somehow seen my note asking her to bring some cough drops upstairs to me. I think she went back downstairs AFTER calling the ambulance and brought them up for me. That is just classic Mom. I even watched her WALK out the door with the EMT at 4 AM.


She also kept waiting to call the ambulance because she didn't want to wake me up. She was trying to wait until morning. Oh my.  I want her alive more than I want my sleep! My biggest fear is losing my mom, so this experience has been terrifying. I am still in fear mode.


I'm fighting the coulda, woulda, shoulda's right now....we have a lot to learn from what happened, but right now we just need to get through this time.


I've gotten to hear her voice three times today. This was wonderful. She sounded really good this morning, but exhausted tonight. 


The AMAZING woman known to all of you as Jeannine, and to me as my 'sister' and best friend and to my mom as a 'second daughter', has been up since 4 AM and with my Mom every step of the way. She called me constantly with updates, she popped in and out of Mom's room all day long (she works at the hospital), she spoke with the cardiologist and the neurosurgeon (Mom was scheduled to have surgery on her neck on December 16th), she told the doctors about Mom's med sensitivities and family history, she took care of my emotions, she sat with Mom during meals, and well, just did it all. 


It stinks not being able to be there with Mom, but I honestly think Jeannine is a hundred times better at doing this than I am! :P Sadly, that is from too much experience with her own mom.


I also could not have made it through the night without my friend, Kristen, who I met through DINET. I was so scared and alone and she was awake. She spent those morning hours on gchat with me. I desperately wanted to pray, and she prayed with me over gchat! She also knows a lot about cardiology and the heart, so she could talk me through what was happening to my mom. The blessing of her presence got me through.


Soooo, I think that Mom will get to come home Thursday. She is still in ICU for the night, but will be moved to PCU (Progressive Care) tomorrow. She will like having a few less wires I am sure.


Abbie took care of me and Asher today. Dad was scheduled to go to a conference in SF from Wednesday to Saturday, and has cancelled his trip, so I have people to be here with me right now when I need it. Dad is not good at anything domestic, but he can be good at just 'being' and hanging out. :) Abbie is doing the domestic work. I am sure Dad's sisters are laughing at this right about now. 


I have not been able in any way to respond to the overwhelming amount of support we are receiving. Getting your text messages, blog responses, phone messages, and emails all throughout the day really helped me to feel less alone. I really appreciated those of you who shared stories of your own parents going through something similar and doing well now. I needed to hear that! I also appreciated the many offers to be a listening ear....I will probably have to take you up on that soon! You also helped me to feel less afraid of getting the support we need when Mom comes home. We are going to need to learn to ask for help. I also can't wait to tell her about all of the messages and make her smile!


Your offers to do everything from walk the dog to cook have been so very generous and overwhelming. I am not sure where to start or how to ask! I don't know what we will need or what Mom's restrictions will be, but I anticipate the biggest thing we may need is food--meals ready to go or freeze and groceries--especially over the next couple of weeks. Otherwise, we may need rides to appointments. For those of you who are enthusiastic about walking Asher, I am sure he would enjoy a walk, as he probably almost forgets what that is by now. Poor guy.


Right now we have two pots of soup on the way. I requested some Jewish penicillin (chicken soup) from our neighbor when he asked what he could make. And Rebekah has a pot of Tuscan bean soup (or something like that) on the way tomorrow also. We have fresh pears and apples coming. And homemade applesauce already arrived. I haven't felt like eating much today...so the soups are sounding very good and I think they will go down easy when Mom comes home and is tired.


I think this should get us through the weekend. Many of you have asked about food, and what my restrictions are. I cannot eat gluten or dairy, but a tiny trace of either will not be a problem. We eat a lot of fresh fruits and veggies, organic foods, lean meats, fish, etc. 


I have no experience running the house or being head of the household, so I'm slightly lost and overwhelmed! I need to try to make a grocery list with the special foods I eat from Wegman's so we'll have some of those items around. So, I am looking for someone comfortable with going to Wegman's for some of the foods that I eat (I will make a very detailed list of the gluten-free items). 


Otherwise, I'm focused on getting meals lined up.


I was so scared (and still am) about managing things so that Mom is less overwhelmed when she gets home. I am scared about managing with two people who are so limited in functioning. 


First though, I just want her home. I want her healing well. I want to hug and kiss her. I'm still in the freaking out/hypervigilent mode! 


I am completely at a loss for how to thank you all for your continued kindness and generosity. Thank you to everyone near and far, who offered both emotional support and physical support in a multitude of ways. We are truly, truly blessed to have people like you in our lives. Thank you so much for all of your prayers for my mom. Just as Kristen was praying about a catheterization, Mom was taken back to the cath lab. So, please keep your prayers for her coming! 


Blessings,


Emily

Mom had Heart Attack: Prayers and Good Thoughts Needed

I am not sure of any other way to distribute this news to friends and family, quickly and easily, since blogger sends out my posts at 7 AM.

Mom had a heart attack early this morning around  4 or 5 AM.

She called the ambulance herself and went to the hospital. I called Jeannine, who is there with her and calling me constantly with updates.

At this point we know that her heart stopped in the ambulance. She was stabilized, put on IVs, and the Heart Alert Team was immediately called in. I spoke to her before she went into the catheterization lab and she was awake and coherent.

She was having a heart attack at the time the Heart Alert Team arrived, and was taken back to the cath lab immediately to locate the blockage. My understanding at this point is that she has two blockages, but neither was a complete blockage, meaning that she continued to receive blood to her brain throughout the procedure.

At this time, one stent was placed.

Jeannine just spoke with the doctor, and Mom is resting comfortably. She will be in ICU and monitored closely. Tests will be run to assess the damage to her heart. They will decide whether or not another stent needs to be placed later.

I will use my blog as a place to keep you updated throughout the next couple of days, so please check www.adancinglight.blogspot.org if you are looking for new or up to date information. I will post as it comes available to me and as I am able.

In many ways we were very very fortunate that Mom called the ambulance when she did and the Heart Alert Team arrived within 15 minutes.

We are blessed to have Jeannine (who is a pro at this sort of thing) go to the ER at 4 am to be with my mom. At this point, I do not know if I will physically be able to visit Mom or not, which is absolutely awful.

Please pray for my mom and send healing thoughts that she will be safe and heal well.

Blessings,
Emily

A Good Ending to the Week: Rebekah and Kale

Two of my favorite people came to visit on Friday afternoon last week!

Mr. Kale had lots of smiles for me and we played lots of peek-a-boo.

Last week was a really rough week with doctor's appointments (for myself and Mom!) and really struggling with ANS symptoms. Rebekah and I had been planning this visit for a while, and my body COOPERATED for the visit. 

Unfortunately, it did NOT cooperate afterwards and I was up sick the entire night. Very frustrating.

We had take-out from a new local Thai restaurant and then sat outside in 65 degree weather for the rest of the visit. Clear blue skies, sunshine and no ragweed!

Kale was kind enough to mow the lawn for us while he was here. He is very serious about his 'mow-mow' and spent an hour mowing so that Rebekah and I could chat. After that it was time for both Kale and I to take a nap.

Kale is finally warming up to me, and he let me take him to the mailbox. This was my exercise, for sure!

I managed to get dressed in nice clothes, put on make-up, fix my hair, and have visitors. It was a big day and a good day.  Even though I crashed big time, the time with a good friend and a cute little man was much needed.

Thank you Rebekah and Kale! 

I'll try to update this week on the craziness that is our lives...but thought this was more fitting to start off a Monday morning (Mondays are already hard enough, right?)

Blessings,

Emily

Photos: Rebekah and Kale (who did not want to pose for photo ops); Kale playing peek-a-boo; Kale mowing the lawn; Me and Kale at the mailbox.

Go Hawkeyes! No. 1!

This shirt arrived in the mail yesterday as a gift from Mom. I've officially added to my Iowa Hawkeyes collection, and I'm dressed for the game today! (Not that I'm actually watching...that would require a HUGE change in my being to start watching football! Plus, with FB you all keep me in the loop anyways!)

This photo is for YOU my dear Iowa family, whom I love and miss so very much. And for my Mom and Dad who both got their Ph.D.s at Iowa. I'm very proud of them both.

Go Hawks! And I love you "Iowa family"!

Emily

P.S. Spending time outside in the 65 degree weather we are having today. Glorious sunshine. And awesome Hawkeyes gear.

Me and Mom

During the Princess Party, we went outside to take some photos. I was actually wearing something other than PJs and Jeannine was there as photographer. I was Princess Emily and mom was Queen of the Kitchen. (She is definitely that! I am sooo spoiled with good food.)

I love how Jeannine captured these moments between Mom and I. We weren't posing for the first two photos.  We are so fortunate that we enjoy one another's company so much since we live together and she is my caregiver! 

We have so few photos of the two of us together, so I wanted to share these. 

I love my mom more than anything in the world. 

Blessings,

Emily

Photos: Mom and I in our yard.

The Princess Party

As my 35th birthday approached, Jeannine said we had to talk about a way to make it a celebration. My goal for the party and for my 35th year was this: to have more FUN. And fun we had! 

She said to me: Do we need a theme? What do we need to do? At this time I was still on the rocephin, and wondering how I was going to have any birthday celebration at all, no matter how small. I wanted the them to be just fun, simple, and positive. 

We decided on the theme of a Princess Party. We are all queens of something, right? 

The 'party' was just three of us: me, Mom, and Jeannine, as I really can't handle much more than that at a time right now. We started out with an amazing treat of take-out Thai food from a new restaurant. 

We topped that off with gluten-free, dairy-free pumpkin spice cupcakes. Some of my friends may be amazed that I did not have vanilla cupcakes with chocolate frosting. :)

I just love this photo of me and Jeannine outside after lunch. How she manages to radiate so much joy in her face with the trials she faces, I do not know. 

Jeannine arrived at our luncheon with a big brown shopping bag labelled "Emily's Bag 'O Fun". It was filled with tons of fun crafty supplies like glitter pens, stickers, paint pens, paint, feathers, fluorescent hair spray, and masks to decorate. Apparently finding crowns or wands to decorate is a challenge, so she came with masks instead.  I, of course, made a princess mask as you can see in the photo at the top. Can you guess which one is Mom's and which one is Jeannine's?  It was really amazing to watch how much our personalities came out in each of the masks.

I have missed crafting so much. I used to love to do creative things, and was constantly engaged creatively. This 'party' may seem silly, but it was just perfect. The craft was doable in the sense that it could be done in a short time, and it was something that was disposable--I didn't have to make something perfect to keep. Just something to have fun with (and which I ended up wearing for Halloween). 

I feel like a kid in a candy store with my Bag 'O Fun, and can't wait to have energy to use some of the goodies again. 

After the crafting, we spray-painted our hair with the fluorescent colored hair spray. Jeannine picked purple. I picked, um, pink of course!  That stuff is seriously gross (it STINKS!), but it is also so much fun.

After so much stress and challenges, being silly, goofy, frivolous, 'un-grown up', and having a Princess Party made for the perfect birthday. I was grateful to have those two hours of feeling well enough to enjoy the party, and have FUN. 

Major thanks to Jeannine for coming up with the theme and the craft! You did good, as you would say.  

Blessings,

Princess Emily

Photos:  Masquerade masks--top to bottom: mine, Mom's, Jeannine's (hers is definitely the best one); Thai spring rolls; Making a birthday wish (gee, wonder what I wished for?); me and Jeannine outside; Making our masks; Jeannine and her purple hair; Me and my pink hair.