Tuesday, March 13, 2012

the waiting is the hardest part

We are SO ready to see Evelyn awake, and short of a few brief blinking episodes, it hasn't happened yet. This is okay, medically, but a little frustrating for all of us since we haven't seen her awake and really happy for at least a week, if not two or three.

Today was busy for Daniel and I, and quiet for Evelyn. Daniel zipped from the hospital to work, and at work from meeting to meeting, then back to the hospital. I woke up with Owen and helped him start his day, spent an hour in rain-delay traffic, gave Evelyn a sponge bath, had a nice visit with a friend, did some trach training (today was cpr with a trach!) had lunch with another friend who works at the hospital, then finally got some Evelyn cuddling in, in between feeding her and learning how the ventilator works and practicing some suctioning. After that I headed home to Pop and CCs house, where my absolutely wonderful mother-in-law fed Owen and me dinner. Then Owen and I took a walk, skyped Daniel and Evs, and he's just gone to bed. Tomorrow I will take Owen to school, then head to the hospital to stay for the day and night.

To be completely honest, this is already getting old, so I have great sympathy for those who've done marathon hospital stays routinely, or even semi-frequently. It is no fun. It is also interesting how much our mood depends upon the moods of our children. For better or worse when they're happy so are we, and when they're not - we're not either.

Today Evelyn was completely weaned off of the sedatives, but given she'd been on them for a few days, and given she's needed a little extra help due to seizure activity, she was still asleep all day today. On the upside, she is beginning to wean off of the ventilator, and the respiratory therapist described her progress as 'excellent' and 'beautiful'. As of 5pm when I left the hospital, the vent was giving her 10 breaths per minute and she was taking an additional 10 on her own. Since the ventilator measures such things, we also know that the breaths she is taking on her own are good strong ones, so that is great news.

I REALLY hope she is awake some tomorrow. Even if she's really grouchy, even if she keeps us hopping all day and night - I'm ready to interact with my daughter, and I'm sure she's ready to move beyond the twilight stage.

A healthy dose of perspective is always readily available at the hospital, and though I've resisted it today (being generally grouchy and self/evelyn-pitying) the truth is that you just can't walk through the hallways without feeling grateful. Grateful for your child's life, grateful for food to eat and a home, grateful for loving and supportive family and friends. Our daughter is surrounded by homemade blankets and special stuffed animals, wears fancy hospital gowns and bows in her hair, and I provide homemade organic food for her - even though she can't taste it - because I feel like its best for her and we can do that. When she needs or wants something, we do it; particularly if it is important for her development. There are families in the hospital who have to share one child's meal tray because there is no money for food. Children who treasure a donated blanket as if it is the most special thing they've ever been given - because it is. Children who are in the hospital because someone in their life, who should have been taking good care of them, hurt them instead. There are parents told every day that their child is going to heaven instead of coming home with them.

In light of these realities, I've typed myself into a much better mood - I'll take another sleepy day, because its another day with Evelyn, and its a step toward a better life for her.

As always, thanks for reading the lengthy ramblings, and for your continued prayers. Also, if you ever have extra money you don't have a place for (wouldn't that be nice! :) ) consider donating to Children's Healthcare of Atlanta at Scottish Rite http://www.choa.org/Support-Childrens/Give-to-Childrens . It is a very special place, doing amazing things for our daughter and so many others.

Love,
Kim

4 comments:

Zahie said...

Kim,Daniel and Owen,

I pray God give you all the strength for your journey to get Eveyln better. Your determination and love for each other fills my heart with joy. I am blessed to know you and be a part of your life.

Miss Zahie

Nikki Cross-Patrick said...

Your strength and the amazing things your family as come through are inspirations to us all! You're in our thoughts and prayers every day, as are the other kids at the Ritz. Stay strong! -Nikki

Kethlyn said...

Evelyn is so blessed to have such an amazing support system, and I know those hospital gowns and bows are just fabulous!

I will continue to keep Evelyn and your family, extended family & friends who keep her support system strong - and I look forward to reading your next post about Evelyn heading back home! Stay Blessed :) ~Kethlyn

Kethlyn said...

Evelyn is so blessed to have such an amazing support system, and I know those hospital gowns and bows are just fabulous!

I will continue to keep Evelyn and your family, extended family & friends who keep her support system strong in my prayers- and I look forward to reading your next post about Evelyn heading back home! Stay Blessed :) ~Kethlyn