Email from Dad

I was going through my old hotmail account, knowing that I had some emails that I wanted to retrieve before closing it out for good.  I came across this one written by my dad on Aug. 8th, 2002. And yes, it made me cry.


Dear Friends, I'm happy to report Evan's surgery went very well on Monday. The team was able to: 1.Enlarge his airway 2.Free vocal cords from wall of airway by removing cartilage from behind same 3.Remove cartilage from rib, shape it to fit in his airway both front andback and suture them in place and 4. Place a stent in affected area to keep airway open during healing process. In a month, they will check the throat and if all is well, remove the stent,cap the Trach tube and let him breathe for a time, then he will have to stay in the hospital for 24hrs when they remove the tube.(Decannulate is the term all the Moms know). We had thought all this would require 1-2 operations, but were able to do it at one time. The docs did tell them that they would know better once they started surgery what could be done. A small drain was placed in the throat area and the rib. Yesterday the rib drain was removed and this AM, the throat drain. He was able to start eating (drinking actually) from his bottle and pain is being managed with just Tylenol. Yesterday when we visited him, he had a smile for us and knew he'd turned the corner.The surgery required was approximately 5 1/2 hrs and he was in ICU ,until last night, not because he had to be there, but because, there were no beds available in the step down unit. We felt good about his being in the ICU though, more for Mom and Dad and us. We came home yesterday afternoon,talked with Mike this AM and they may be coming home tomorrow, if all continues as it has the last 24 hr. Evan's nurse drove 140 miles one way to visit him yesterday .She is one of the ladies in his life-Mom, Grandma and Patty.She's been wonderful with him and for him. She comes to the house 20 hrs a week so Annie can sleep, shop or just take a break. As I think I told you, Dr. Robin Cotton perfected this procedure. The respiratory therapist was in to check his gases etc. and he said he was on Dr Cotton's transport team and flew all over the world to bring children to Cincinnati for treatment. Evan weighs a little over 20 lbs and all this was done through the side of his throat and after the drain was removed today, the incision was covered with a BAND AID, as was his rib incision.It must be all microscopic assisted surgery in that area.As a side, yesterday he coughed and phlegm came out his mouth. This may seem mundane, but it is the first ever and when he saw the doctor coming to see him this morning, he started to cry and a little sound came from him! "A thousand mile journey starts with the first step".  Rosemary and I have been, and are grateful for your prayers/concerns and thoughts for him , his Mom and Dad and us.She saw her oncologist last Friday and all systems are go! A lifelong friend of Rosemary-Barb Seeger- will be undergoing surgery for breast cancer on August 15th so we ask you to join us in healing prayers/thoughts for her and her family during this time. Well, I didn't mean to write an essay or short story, but did want to fillin the "Friends of Rosemary" group. Take care, Jim and Rosemary

There's no place like home

10 years ago we brought our baby home, 49 days after he was born.  We were scared and he was unhappy to be out of the NICU, the only home he had known. I cried, he cried. I was not ready to have him home.  It's funny because from day 1, all I wondered was when he'd be able to come home and now that he was, I wasn't sure I could handle it.  Did that make me a terrible mother? I thought for sure it did. Things were too hard.  Keeping track of all his meds, following the "recipe" for his formula-we had to get the caloric content just right-making sure he was being fed 18 hrs a day courtesy of the feeding pump, suctioning the trach, cleaning his trach site twice a day, cleaning his g-tube site once a day, giving him breathing treatments, making sure we have the apnea monitor on, making sure the air compressor is working so that he's getting cool mist into his trach.  I didn't want to be a nurse.  I just wanted to be his mommy.  

But here we are 10 years later.  I am the proud mommy of a smart, funny, healthy, sweet, loving, boy who, in celebration of his homecoming, ate spicy wings!  He's come a long way since being hooked up to that feeding pump for his first dinner at home!