Wink from Heaven: Hospital Holiday day 2

Friday, December 26, 2008

Hospital Holiday day 2

Caleb just couldn't wait to wish all of his friends in the PICU a Merry Christmas, so he's decided to stay for a while until he can give holiday wishes to all of them!
Today he was put on the ventilator at 10 breaths per minute rather than C PAP because his blood gasses weren't where they needed to be. Even now, his gasses are showing that he's not getting enough ventilation, so the doctors are trying to decide what to do next. I visited with the pulmonary doctor, and he suggested we consider partial ventilation at home. We'll do a sleep study when he starts feeling better to see if that seems necessary. Caleb had an echocardiogram that showed that his right ventricle is slightly enlarged most likely as a result of his breathing issues. I have also visited with doctors about his pattern of aspirating and pneumonia, so in the next few days we'll do a swallow study to get more data. Hopefully that will help us with some decisions about a g tube/nissin procedure that would prevent him from throwing up.
Caleb has been so patient with all of his procedures and pokes today. It is mighty humbling to see how he responds to his challenges. I can't wait for him to get off of the ventilator so I can snuggle him on my lap! For now I stay close by and hold his hand. I'm going to stay at the hospital tonight to keep a close eye on him and avoid the snowy roads! (I'll post pictures the next time I'm at home)
I'm so thankful for you, Caleb, my sweet little buddy! I love you SO very MUCH!

1 comment:

Becky said...: Oh...get better Caleb. Ben has the same heart issue...and the nissan really has helped him stay well. Thank you for the updates. I hope that you are able to get some much needed rest. We're still praying...; December 26, 2008 at 8:26 PM

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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.