Wink from Heaven: Hospital Holiday day 3 -Breathing Boy!

Saturday, December 27, 2008

Hospital Holiday day 3 -Breathing Boy!

Today Caleb went off of the ventilator! He was able to use a trach mask all day without going back on the vent! He still needs a lot of oxygen, but he's doing much better. I was able to put him on my lap and rock him for most of the afternoon. We were both very happy campers! A sweet mom that I met when Caleb had RSV last winter was also back in the hospital with her little girl, so we were able to sneak away and have breakfast in the cafeteria together. You know you're a "regular" when you see lots of familiar faces! His chest X rays still don't look very good, but it's probably due to his chronic respiratory challenges. I anticipate that tomorrow will be a peaceful day and that next week we will start having some studies done so we can start making some decisions about what we will do from here.

6 comments:

Becky said...: What a relief! Good job Caleb!!! I'm happy for you and your family. Hopefully it won't be too much longer before you are all home together again. That would be the best 4th birthday present EVER! :) Thanks for the update.; December 27, 2008 at 8:37 PM
Unknown said...: Oh, how we love you. You are all in our prayers.; December 27, 2008 at 9:33 PM
Shannon said...: Yay for Caleb! I'm glad he's doing better :) What a sweet little boy you have!; December 28, 2008 at 10:21 AM
Kel said...: I'm a friend of Joy's and found your blog through hers. Our first baby spent some weeks at Primary Children's this summer, and I have a tender spot in my heart for you and little Caleb. We will pray for your family.; December 28, 2008 at 3:06 PM
Maxfields said...: I am glad he is doing better. We love you guys! Hang in there!; December 28, 2008 at 4:24 PM
shirlgirl said...: So glad you are doing better, Caleb. You are now on the prayer list in my church. Every little prayer helps, that's for sure. You are a very cute little boy and so are your brothers. You are very lucky to have such a loving and caring family, just like your friend Ben who is my great nephew. He's looking forward to meeting you in the spring, so you have to get better so you can meet him and his wonderful Mom.; December 29, 2008 at 8:01 PM

Prayer for Caleb

(written by Caleb's Grandma in her weekly column -2008-)

In my family we have a secret code to communicate our love for each other when we are out in public. We wink. When one of us is about to perform or speak, we look for a family member’s face in the crowd. Then we wink at each other. Closing one eye and winking is our secret code for saying, “I love you. You can do it. You’re wonderful.”

About three years ago, my grandson Caleb was born into our family. He must have known before birth that he would never be able to speak to us because he was born with one eyelid permanently closed. So, he is always “winking” at us, always communicating, “I love you. You can do it. You’re wonderful.”

Caleb has one eye lid permanently closed because he is missing one of his eyes . . . and he is also missing his brain. All the doctors said he would die soon after birth. They were wrong. Caleb is three years old. He is a medical miracle. The doctors say he can’t see, hear, speak, think or move. Those who know and love Caleb understand he has his own unique way of experiencing the world and communicating his love to those around him.

After Caleb was born the hospice people told us to buy a burial plot and continually warned us of his imminent death. We soon learned you can not live well in a state of fear and sadness. We decided we could spend Caleb’s entire life anxious and scared he might die at any moment, or we could celebrate each day we were blessed to have him with us. In the beginning, my daughter April celebrated Caleb’s birthday every week instead of every year with balloons and cupcakes because we simply did not know how long we would have him with us. We stopped the cupcakes after we gained ten pounds, but the celebrating goes on.

We all prayed for a miracle when we first learned about Caleb’s condition. We got one. Caleb’s birth, life and mission have had a deep and lasting impact on our lives. His spirit, eternal identity and most of all the loving, individual relationship he has with each of us is truly a miracle. Because of Caleb we know that each of us has a divine purpose and that the physical body is a sacred gift we should never take for granted. We better understand the worth of a soul and the resiliency of the human spirit.

Caleb’s five year old brother Matthew said, “Grandma. The doctors said Caleb was going to die, but he didn’t. That’s the first miracle I ever saw!”

Sometimes Caleb’s baby brother Mitchell pulls out his feeding tube while they hold hands riding together in their double stroller. Sometimes the only intervention that can get Caleb’s heart rate up is when his older brothers Josh and Matty crawl in his crib, hug him and sing, “I am a Child of God.” ...If you have a moment please offer a prayer for the little boy who has never been able to utter a single word and yet has taught everyone who knows and loves him – all the secrets of a rich and meaningful life.