Happy Birthday Mom-You are loved.

prayingfornancy[at]gmail[dot]com

Please continue to send pictures as you pray.  

Celebrating my mom's birthday and baptism today.  Hoping for 54 to be the best year yet. Thank you for all the love and support. For those that want to see the best birthday card I have ever bought and aren't offended by our dark sense of humor, scroll to the bottom :)

Bartlett, IL

 Milwaukee, WI

 Clinton, WI

 Chicago, IL

 Haiti

 Gurnee, IL

Hoffman Estates, IL

 Clinton, WI

Buffalo Grove, IL

 Willow Northshore

 Willow Northshore

 PA and NJ

 Taiwan

 Boulder, CO

Chicago, IL

 Elk Grove Village

Aurora, IL

 From Elgin to Arlington Heights

Elk Grove, IL

 Elk Grove, IL

 Canadian Rockies

 Lake Zurich, IL

 Evanston, IL

 Glenview, IL

 Deerfield, IL

 Sox Game

 Statesboro, GA

 Alexian Friends

 On the beach

 Deerfield, IL

 Ft Myers, FL

 Atlanta, GA

 Glenview, IL

 Milwaukee, WI

 Deerfield, IL

 Rockport, TX

 Viera, FL

 Schaumburg, IL

 In the crapper.

In the sunshine

 Indianapolis, IN

 Crazy Town :)

 Elk Grove Village, IL

 Elk Grove Village, IL

 Evanston, IL

 Hoffman Estates, IL

 Hoffman Estates, IL

 Hollywood Hills, CA

 Pittsburgh, PA

 Skokie, IL

Elk Grove, IL

 Barrington IL

 Bartlett, IL

 Champaign, IL

 Elgin, IL

 Palatine, IL

 Schaumburg, IL

Barrington, Il

 Elk Grove Village, IL

 Elk Grove Village, IL

 Elk Grove Village, IL

Arlington Heights, IL

 Des Plaines, IL

 Pismo Beach, CA

 Statesbora, GA

 Plainfield, IL

 Roselle, IL

 Roselle, IL

Alexian Brothers Medical Center L&D

 Alexian Brothers Medical Center L&D

 Philadelphia

 Carmel, Indiana

 Mundelein, IL

 Alexian Brothers Medical Center L&D

 Northbrook, IL

 Wood Dale, IL

Alexian Brothers Medical Center L&D

 Barrington IL

 Barrington IL

 Barrington IL

 Barrington IL

 Buffalo Grove, IL

 Evanston, IL

 Evanston, IL

 Des Plaines, IL

 Des Plaines, IL

 Evanston IL

 Elk Grove Village, IL

 Elk Grove Village, IL

 Evanston, IL

 Galyon Family

 Glen Ellyn, IL

 Glen Ellyn, IL

 Evanston, IL

 Melbourne, FL

 Minnesota

 Evanston, IL

 San Francisco, CA

 Evanston, IL

 Elk Grove, IL

 Evanston, IL

Arlington Heights, IL

 Disney World

 Gurnee, IL

Everywhere

 Gurnee, IL

 Schaumburg, IL

Alexian Brothers Medical Center

 Bar Harbor, Maine

 Baudette, Minnesota

 The Bodie Family, Florida

 Champaign, Illinois

 Chicago, Illinois

 Disney World, my mom's favorite place

 Elk Grove Village, IL

 Elk Grove Village, IL

 Elk Grove Village, IL

 Oswego, IL

 Northbrook, IL

 Northbrook, IL

 Des Plaines, IL

 Hanover Park, IL

 Elk Grove Village, IL

 Niles, IL

 Elgin, IL

 Traverse City, MI

 The Maloney Family

 Itasca, IL

 Elk Grove Village, IL

 Hanover Park, IL

 Park Ridge, IL

Happy Birthday sweet momma.  So thankful for the opportunity to celebrate.
prayingfornancy[at]gmail[dot]com

Too Cool for Toes

Some people are too cool for toes.  Apparently my mother is one of them.  We are holding on to the big picture, and while losing half of my mom's foot was not the perfect solution, it is the one we have. The original goal was to wait and see what of her foot would fully come back, and while we have seen vast improvement from those days in the ICU when she threw the blood clots down her leg, we no longer have the luxury of waiting.

The doctors are now saying that for long term quality of life, they would like to evaluate my mom for a heart transplant. This is a super thorough process where they look at every body system, including your teeth. To be eligible to be a candidate for a heart, you can really have no other issues.  Her foot is a big issue.  While it is improving it is still a big risk for infection and would disqualify her from the transplant process.

Ultimately, we need a heart.  The original plan was to reconstruct the left ventricle and possibly place a pump.  That is like a 2-4 year plan, but can be done much more quickly than a transplant.  These doctors think that with this new medication management we can hopefully wait and only proceed with a heart transplant, pending that she qualifies, so that she will only have one open heart surgery.  Less is more my friends, less is more.  In the same breath, the plan can change at any time and we might be back to that very risky procedure to try and hold her over for a transplant if she becomes too unstable to wait.

I want to keep people informed, but it is hard when the plan keeps changing.

So next week we will move forward with foot surgery.  Please pray that it can be done as soon as possible.  We want to be done, so that we can start to recover, so that we can get as strong as possible before a possible transplant.  Since we were unable to have Goat Fest this year, I am now thinking we should craft T-shirts saying "Too Cool for Toes."  Too dark?  Whatever.  I'm grateful for more time with my mom, with or without toes to paint.

Friday Night

I really miss Friday nights.  I miss looking forward to a weekend and my family's Sunday night dinners to cap it off.  This is one of those posts where you want to walk away if you are not really in the mood to hear my gut level, brutal honesty.

I am always very honest in what I say and share, but usually I am not as ugly as I was yesterday.  In the same breath I think some of our ugliest are our most beautiful.

After working Wednesday night, I slept a whole two hours and headed to the city to be with my mom.  New place, new doctors, new plans. I needed to know what was going on.  We have also been trying to take turns staying with her over night since that was previously when she would have a ton of anxiety and panic attacks.  So I stayed over night and didn't sleep much at all.  Partly because they had removed the IV's from the cath lab and had to check the site often for six hours, and partly because I was trying to sleep in two chairs pushed together.

It didn't really matter to me that I wasn't sleeping.  I wanted and needed to be with my mom.  I tried to wait as long as possible to hear as many consults as possible before I left on Friday, but I needed to head back to the last hospital to pick up medical records before business hours were over.  Since governmental offices have no sense of urgency, I thought I would just fax them myself to get the ball rolling.

I know I'm pregnant, and I know I need to take care of myself.  No need to tell me again friends.  But really, if that was your mom in that bed, you would do the same thing.

So by the time I got home yesterday, my emotional, physical, and spiritual reserves were low.  My plan was to nap for two hours and then go see some friends.

Tears come pretty easily to my family and I as of late.  When my mom and I were just sitting in the hospital yesterday we scrolled through all of the new pictures I had added to the blog.  We talked about how grateful we are and we let the tears roll.  They rolled a lot harder when my mom saw one of her best friends from Indiana blowing her a kiss, or her little love Gavin made a sign for his BFF.  Then we did the ugly cry together.  I've become OK with the ugly cry.

Once I finally laid down in my bed I started dozing.  But then my super well-intentioned husband came and pulled the bedroom door closed.  You know, so I could actually sleep.  I yelled out for him to open it back up because I didn't want to feel like I was all by myself, and the tears started.  He sat with me and I rocked what I thought was the ugly cry.  I expressed my deep level fears about having my mom so far away, and being scared about the fact that if something big happened I don't trust that I would be called right away to make sure her wishes are carried out.  I cried about just how scared I am about all the options on the table.  I cried about how I want to run away and pretend none of this is happening. And then I cried harder when I said I wanted to run away with my mom and she has no chance at escaping this, even for a few hours.

I thought crying was supposed to bring you some relief.  So after I caught my breath from crying all the tears I thought I had, I tried to close my eyes and fall asleep.

Instead I think I experienced the true ugly cry for the first time in my life.  The cry where your body shakes and you are grateful that you were already laying in bed, because otherwise I surely would have broken a bone as I collapsed on the floor.  The cry where you are grateful that your husband is home and holding you close or there would be a good chance that you could have suffocated on your own snot.  The cry where you are sure you are going to pass out because breathing is no longer and option, all you can do is let the tears fall and gasp for air as you mentally scream at God that this all sucks.

While I am so grateful for all the prayers and support, I couldn't find rest in peace or comfort.  I know God is big enough.  I know he is in control.  But at the end of my rope, all I could do was cry.  Cry as my heart breaks for my mom.  Cry as my heart breaks for my sisters.  Cry as my heart breaks for everyone else that loves my mom. Cry as my heart breaks for everyone else in the ICU.  Just cry.

Today will hopefully be a better day.  I have to work tonight and can't go down to visit my mom.  But there are other people that love her that are able to go.  So I will try to rest and sleep away the afternoon, and I will look forward to visiting her tomorrow with Jon.  I will continue to let the tears fall as they come, because even after my true ugly cry, I just feel weepy and overwhelmed.

Thank you for your continued prayers and encouragement.  Thank you for allowing me to trust in the fact that when I no longer have the strength to ask for miracles, someone else in the world is.  Thank you for allowing me to trust that as I scream at God, someone else is still able to thank him for my mom's life.  Thank you for letting me fall apart, because right now I am truly a hot mess.

If you are still planning on writing my mom a letter, please do so by Wednesday August 15, so that I can print them all.  The original plan was to read some to her, but until we figure out a plan, I am not sure that I will be able to coordinate that. If the plan is to move forward with another open heart, we would like to do it as soon as possible. Apparently there are a few options on the table, even though we thought there was only one.  So I am hoping that by the beginning of this week we will know more and be able to feel more peace about everything.

Thank you for your pictures and letters thus far.  It truly means the world to us.  Thank you for loving us.

prayingfornancy[at]gmail[dot]com

Next Step

So everything can change at any time, but at this moment we have some idea of what our choices are.

It is hard to be reminded that every intervention from here on out is high risk. Even doing the angiogram for diagnostic purposes was high risk.  We really can't take anything for granted at this point.  Every day and every moment is a gift.

So here is where we stand.  Her heart is unable to pump effectively at this point due to the first heart attack.  Her left ventricle is basically like a loose sock with too much pressure in it.  The stents originally placed in her right coronary artery after the initial heart attack in June have failed.  Because of the trauma and damage to the left ventricle, she is not a candidate for a ventricular assist device, and at this point, the surgeons here still think the best bet is to try to save her heart.  With everything unresolved with her foot, she is not a candidate for a heart transplant at this time as well.  So we have some big decisions to make in the upcoming week.

The surgeons here would like to again do open heart surgery.   The cardiologist said that this one needs to be left to the "big boys" as it is very complicated, but that the surgeon that is following her case feels that this gives her the best chance of survival and quality of life at this time.  Once inside her chest they want to reconstruct the shape of her heart to be able to help it once again function.  So instead of a boob job, my mother needs to have a heart job.  Best analogy I can come up with at this time.  They also want to graft an artery from her leg to bypass her right coronary artery where that stent has failed and where they think the bleeding around her heart occurred.  

While I am grateful to have an option, it is scary to think of the possible ramifications.  We want to take our best shot at life, but at the same time, we want to feel peace that it is a shot worth taking.   There is no guarantee that we will not once again end up in multi-organ system failure or that she will not code again.  It is scary to think about going back to those really rough days.

The doctor I spoke with tonight thinks that it would be best if this happened in about a week.  He says we can wait longer but there is no way to predict when or if her left ventricle will rupture, at which point she would die instantly.  

Since being here they have changed her meds and her blood pressure has improved.  I asked if she should be trying to be up and moving at all, and at this point we just want to let the heart rest.  In it's current state it will not be able to rebuild itself and we should not add any stress.  It helps put in perspective why the last few days were so hard on her and why we never saw any improvement in rehab.  

So we will talk tomorrow and make a game plan.  Always best to talk about those things when you haven't gone on 2 hours of sleep and the "haha" medicine.  While the new location feels overwhelming, I have a lot of peace about the care my mom is receiving.  We are in the best of hands.

Going to try to sleep in my non reclining chair.  Wish there was more room to climb in bed with my momma. Maybe after the IVs come out from the angiogram we can make that happen.  Fingers crossed.  

University of Chicago Day 1

After working last night I made it down around three to see my mom.  So thankful for my cousin to be able to come down with her and for her to not be alone.

It is hard to be in a new place, really hard.  The rooms are smaller and older.  There is no chair that reclines to sleep in.  The nurses station is loud and busy now that there are significantly more doctors/residents here.  Yet it is where we need to be.  It is where we can hopefully make a plan, and hopefully ultimately, be approved for a new heart. It is where the experts and the technology are at.  So we will trust that people have our best interest at heart.  We will pray for the doctors and the nurses, for wisdom to know how to treat my mom.

If I were to be a little too honest, it is hard to have a whole new team that expects your trust from the get go, when you have been told something different for the past two months.  I want to run away and take my mom with me.  I don't want to do this anymore.

She is in the cath lab right now.  The poor woman has hung out in way too many cath labs, I think we are on visit number 6.  For her first visit to the cath lab, she didn't want any sedation.  This time she asked how soon the "haha" meds were coming.  That's my girl.  Please pray for her kidneys as the dye usually hits them pretty hard and having to go back on dialysis would be a pretty big blow for her.

Per the cardiologist here, the whole bottom half of her heart is not really working based on their echo this morning.  We should know more specifically the state she is in once we are done with this procedure.  They have done blood work and X ray's and ultrasound this morning.  Not sure how many pieces of the puzzle there are, or when we will be able to put them all together.

I know that there is a chance my mom will die and that interventions need to happen for her to be able to live.  But it is hard to remember how sick she really is, when I am with her and talking to her like my old mom.  I forget that her heart is really this broken.

Honestly, it just sucks.

I think my biggest fear is that we will have pursued all of these other interventions to have to ultimately decide that we will not be able to move forward.  It is hard to think about choosing that, different if it were to just happen.  Hopefully our path will be more clear once we have gathered all the information at this new hospital.

So please pray for my mom.  Pray for peace and patience.  Pray for guidance for the medical team.  Pray for my aching hiney that will be in these uncomfortable chairs for the duration of the night, because I will not leave my mom alone.  Pray for wisdom and strength.  Please just continue to pray because that thread we are holding onto feels a little thin at the moment.