Friday, February 6, 2009

Little Stuff

It is amazing that after a major major event like a heart transplant, it is the little stuff that gets you.

Em's new heart has not missed a beat. Her chest incision is not terribly painful and looks great (thanks Dr. Emani).

But what hurts is the IV lines, the headaches, the nausea from all the meds. I guess these are not small things in the sense that pain is pain. The other thing is that most of these side effects are related to the immuno-suppression and anti-rejection drugs. That part of the treatment is at least as difficult as the surgery, and actually lasts a life time.

OTHER THOUGHTS (from a noisy room at 5 am)
I realized yesterday as we settled into yet another new room, this feels a bit like camping in the midst of high technology. Each day we have an adventure, and many nights we have to set up camp in a new spot. We have to find food, worry about where we will sleep, ration clean clothes, and have a tiny little space to live in. We hoard plastic bags and scraps of paper. That all seem silly when you look out the window and we are in downtown Boston.

Sometimes it feels like this is a strange horror movie where there are patients and medical staff running around doing thier jobs. But in the background, visible with only special 3-d glasses, are zombie-like parents. You see them in the elevators carrying food, in AuBonPain in pajamas and slippers, leaning agains walls using cell phones. They are invisible to the visitors and hospital staff....ok, maybe not a good movie plot.....

6 comments:

Susan said...

Deb, hang in there, I can only imagine what it is like, from the outside it looks like you and Bob are doing an amazing job caring for Emily! love you!

Coach Kristi said...

Deb - I can't even imagine the range of emotions, the range of stress levels, and the exhaustion that you and Bob are going through. Your strength and endurance is just a testament to where Emily got hers! Try (and I know this will be hard) instituting some sort of routine to make the days just a little more predictable. Whether it be everyone eating dinner together at a certain time, or a small span of quiet family reflection time together, or something special that you guys did at home together. It may help you feel like you have a little bit of control over your surroundings and put you at ease a little. And please be sure to get as must rest as you can Bob can. Your health and well being are more important than ever and you must also focus on you. You've done a wonderful job so far and I have no doubt you'll continue to do so. If there is anything we can do help you out, reach out to us. We're all here for you. You, Bob and JEff are included in our daily prayers.
Love,
Kristi

empire east aviation said...

Deb, I wake up everyday and run to the computer to see your updates. Your stories bring tears to my eyes to know all the ups and downs. Keep the faith Deb, better day are ahead. Soon we will see you on flight aware and know you are on your way home with Em. You're in our thoughts everyday. You're doing a great job. And thanks for all the updates.

Bonan said...

Deb and Bob,
May I echo everyone else is sentiments here. You two have been amazing, and need to do the very best you can to rest and take care of yourselves also....and I know you know this and about now you are both saying yeah right, when/how? But it is certianly no secret to any of us that Emily gets her strength and courage from you guys. Hang in there as best you can. And believe me as a headache suffer, they are not small things, but yeah after having replaced an entire heart, it certainly seems minor... Sending you all much love and energy as possible through a blog. Martha

Jolene said...

Deb,
Close your eyes and imagine that you can see the group that is here to support you and your family.

Emily,
Close your eyes and imagine riding Anchor around the arena and sorting those cows.

Bob,
Close your eyes and imagine flying your family home.

We close our eyes each night and think about you guys. Get as much rest as you can.
Love,
Jolene & Jerry

spdfish said...

Hang in there... I remember being with my nephew in Boston's Children's for about 10 days 17 years ago. Not much has changed ...but the place does work miracles and I'm glad it has for you too.

susan pd