the first week at home

so i’ve been home for a week and it has been quite a week. the hugs, kisses and smiles haven’t stopped from the kids the entire week and that has been wonderful.

although —  unfortunately i had a setback early in the week that sent me to the emergency room at northwestern. i’ll give the details in a later post but all i can say now is that it was potentially very serious and quite scary.

it was very upsetting to be back in the hospital and back in the worry/scary stage.

i am fine now and by friday was in great spirits.

i am very lucky to have such a wonderful support system to keep me positive.

both marc and i have been consumed with all of the health issues and know that we owe many calls and emails. 

we’re sorry we haven’t gotten back to anyone very timely but know how much we appreciate your support and good wishes.

At home

I went four weeks in hospitals without seeing or speaking with my children. The worst weeks of my life when all I could think about was them.

The moment my cab pulled up to the house and I saw them smiling at me through the front window — I smiled and cried tears of joy.

Walking into the house into the arms of my children was the absolute best moment of my life.

The past 24 hours since have been amazing. Watching them play, reading to them, seeing them smile — I know my prayers have been answered.

At the same time, being back at the house and not being able to do everything (most things) I did before has been difficult. 

I  know I am on the road to a full recovery — but I have quite a bit of work ahead of me. My out-patient rehab begins this week and I can’t wait to get started and continue making great improvement.

I am sorry that I haven’t returned calls or emails — I treasure each one dearly — it is just that for now I need to put all my energy into my rehab and my family.

I will try to continue to update the blog to keep you informed of my progress. 

Please continue to send me emails of encouragement — knowing how many people are pulling for me keeps me inspired and reading all of your messages makes me smile.

My best to everyone!

Why me?

For the first four days after the surgery I was told by the doctors that the numbness in my arms and legs was because of a reaction to the anesthesia during the heart surgery.

I wasn’t that upset at that point because I thought it might take a little time for the anesthesia to wear off. In fact, Marc and I were so convinced it was a reaction to the anesthesia that he flew back to Chicago to take care of the kids.

It wasn’t until the doctors sent me for an MRI four days post-surgery that I began to become concerned.

It was 6am and I was alone in the hospital room when the doctors came in and told me I had suffered a stroke. Marc was back in Chicago and my parents were still sleeping at the hotel.

I sat alone in the room for the next two hours crying — it was then I realized I might never walk again. I cried and cried and asked  — “Why me?”

My parents arrived around 8 and I was the one who had to tell them I had a suffered a stroke. It was one of the worst moments of my life.

Fast-forward four weeks.

I am making unbelievable progress. I mean truly unbelievable. The doctors and nurses are amazed. One week ago I could barely sit upright and had no feeling in my left leg — in just one week I graduated from wheelchair to walker to cane.
 
I am going home this morning and I know how lucky I am. I look around at the other patients on the stroke floor of the rehabilitation hospital and I can’t help but ask again “Why me?”

But this time “Why me? How did I get so lucky?” I was supposed to be here at the rehab hospital for weeks, not days. Some of the doctors didn’t think I would ever walk again. I had complications following the surgery that at some points were life-threatening.

My recovery so far has been nothing short of miraculous.

Today I have tears again — but they are tears of joy. I get to go home and be with my children. I’ll get to watch them grow up. I’ll be able to bring them to the park and run around with them. We’ll be able to bike, hike, ski and rollerblade — together.

I hope they never know the nightmare their mom suffered over the past month — I only want them to know that at every moment I was thinking and fighting for them.

I’m done asking “Why me?” — on both sides. I plan to move forward and make the most of each day, to enjoy life, family, friends and to remember every single moment — how lucky I am.
 

Update: Wear Red

Apparently today is the American Heart Association’s Go Red for Women Day asking people to wear Red to promote awareness of heart disease in women.

Here’s the link for more info…

http://goredforwomen.org/index.aspx

Update: Going home

Finally, finally some great great news — I am going home on Saturday!!! I think being at home with the kids will be the best medicine yet! The conditions of my release (yes, sounds a bit like probation) are that I attend outpatient therapy full-time at an RIC satellite facility and follow-up with my doctors regularly.

The absolute hardest and most painful part of this whole ordeal has been not being able to see the kids — so going home is the best news in weeks!

The doctors, nurses, pct’s and therapists have all been amazed at my progress. Apparently it is not very common to progress as quickly as I am.  Four days ago I was in a wheelchair and today I’m down to just a cane–no more walker!

I have been told that I shouldn’t expect such great progress all the time — but I must say I believe it is because of all of the thoughts and prayers that people are sending my way. 

Living on the stroke floor of RIC I have seen the devastating effects a stroke could have had on me and I can only be thankful that I have been spared the horrors that some of the people here are facing.

I am extremely lucky that with time and hard work — I know I will make a full recovery.

I’m moving ahead and not looking back. I feel all of your support and it pushes me to work harder and harder everyday.

I love reading your messages and look forward to sharing more good news soon!

Update: Back in Chicago

I write this with hesitation because after my last “great” update I had a serious complication which set me back several days. Years from now maybe I’ll share the nightmare of the past days’ events but for now I think the best thing to do is to look to the future and not the past.  I am back in Chicago (a 6-hour ambulance ride!) and at the RIC.  I’ve been told that it is one of the best rehabalitation facilities in the country and I am very thankful to be here and thrilled to be out of Cleveland and in my home city. (A very special thank you to Carrie’s sister Jenny for somehow getting me to the top of the waitlist at RIC and getting me in.) Today is my evaluation day by all the therapists and I should get a general idea of how long I will be here.  I am working so hard at my therapy and I am seeing progress everyday. Yesterday I walked with a walker and considering a few days ago I couldn’t even move my left leg it is beyond amazing. All the emails and messages help me so much because each one reminds me how many people are thinking of me and praying for my recovery. I’m sorry I can’t respond to all of you individually – I wish I could — most of my time is being spent focusing on my rehab and therapy and then resting.

Update

As many of you already know the past two weeks have been extremely difficult for me. Doctors had told me that the numbness in my legs and feet were a reaction to the anesthesia following my heart surgery. After several days of little improvement and many MRIs and CAT scans it was determined I had a stroke during the procedure. I am still in shock that this happened but I am now trying to focus on getting better.

I want to thank everyone so much for all of the thoughts, prayers and e-mails of encouragement. They help keep me inspired and remind me how many people are thinking about me and my family. I am blessed to have such amazing family and friends.

Despite the circumstances, I am trying to remain positive and realize how lucky I am that the effects of the stroke are not even worse than what they are. 

The good news is that the heart valve was successfully repaired and as soon as I am cleared by the cardiologists I will be heading back to Chicago to focus on my rehabilitation at the Rehabilitation Institute at Northwestern.

So far, the rehab here in Cleveland has been more difficult than I could have ever imagined but I am up for the challenge and determined to work as hard as I can.

Marc has not left my side the entire time he has been here and has been beyond amazing helping me with absolutely everything — including reading me all the wonderful emails of support you all have sent.

I want to let you know that everyday I am making great progress and even the doctors are thrilled with how far I have come in two weeks.

I have no doubt that with time I will make a full recovery and I can’t wait to be back on my feet again soon.

Thank you again for all of your support!
 

I wanted to thank everyone so much for all of their love and support throughout this process. All of your calls and emails have truly helped me keep smiling and I feel so  lucky to have such wonderful friends and family.

If I haven’t returned the call or email please forgive me — and know that post-surgery I will have a ton more energy and be able to keep up with everything and everyone!

The Cleveland Clinic asks all of their patients to update a web page to share information and thoughts with family and friends. (They provided me with a template but I’m using this one instead…much easier!)

So here goes….

A little history for those I haven’t spoken with in a while.

My cardiologist at Northwestern told me in November that I needed to have heart surgery to repair a severe leak in my mitral valve. I had not been feeling well for some time but I had no idea it was my heart.

My surgery is scheduled for Tuesday, January 8 at the Cleveland Clinic Heart and Vascular Institute with Dr. Marc A. Gillinov.

The plan is to repair or replace the faulty heart valve.  If you are interested in more information on the procedure or the surgical team — the links to the right have detailed information.

I will be in Cleveland for almost two weeks and I understand in bed for much of it so I would love to hear from you. Please email or call and of course, sign the guest book. Marc will try to update everyone as soon as he can.

I’m looking forward to sharing many more good times with you all and can’t wait for a great 2008! My best to everyone for a healthy and happy new year!

-Jill