A Snowy Ride Home

Ammon came home today, Dec. 22, 2008 after two surgical procedures including a tracheostomy. We were at PCMC for over two weeks with this last stay. We are happy to report that Ammon still has his sense of humor and still smiles and laughs. He was very excited to be coming home. Jim and I spent Sunday afternoon and night with him passing our "test" to see if we knew how to take care of all his needs. The only real trouble we seem to have is how to get the ventilator working properly. Below are some photos of people and happenings at the hospital the day he went home. We seem to attract musicians at hospitals. This is Ross Faison playing his "Irish" flute for us. He is the respiratory therapist that spent all day Saturday with us teaching us CPR and all other things related to the ventilator. The man in the background who is smiling is Dr. D'Fharti (sp?) who is the pulmonologist that is the one working with us. He was very thorough and very kind to all of us. I was impressed with his skill and knowledge.

Ammon missed Kaitlin almost more than anyone. He was really happy to see her for the few minutes she came up to leave a car for me to get to work on Monday.

The Salcidos came up Sunday afternoon and brought games and goodies. The kids played games with Ammon and they also sang some beautiful songs they know from the Children's Choir. It made all of us cry because they sounded angelic. What a treat!

Ross not only plays the flute, but he also plays the mandolin. We enjoyed his sense of humor very much. He taught Ammon a few silly songs about mucus (snot), etc., since that's what we are dealing with these days. Hey, we might as well laugh so he gave us some good reasons to laugh about our life now.

Within a half hour after getting home, driving through very slick and snowy conditions, a respiratory therapist from IHC showed up with a truck-load of equipment and spent the next hour setting it up and showing us how to work it. We now have tubing running all through the house and boxes and bags everywhere. It will take a few days to figure out where to put it all. The suction machine is on top of the small cabinet to the right. The equipment we need is now contained in the larger cabinet.


Here is Ammon hooked up to the ventilator. He only needs this for nighttime. He can breathe on his own but it kicks in when he doesn't breathe deeply enough. He has Restrictive Lung Disease - that means that his lungs haven't developed properly and so he doesn't breathe very deeply when he's asleep causing high levels of carbon dioxide in his system which can lead to spasms in the lungs and eventually death if not taken care of properly. We are uncertain about all of this because he has had this for 13 years and it's never been addressed. He has seemed to be relatively healthy and fine. He wasn't on a ventilator when he was in the PICU after the trach was placed and he wasn't on the ventilator for over a week on the regular surgical floor so we don't know why all of a sudden there is this big need to do all of this.

Ammon's voice is quite strong now during the day but he really looses the energy to project by evening. He is so happy that he can talk. When he is on the ventilator, he can't make any sound so he continues to write notes to us.

Hopefully this will become routine within a short time and we'll figure out how to take care of him without a sense of panic or worry. He is relatively happy and is tolerating all this invasive "stuff." If he can be happy, then we had better be happy too!

We are definitely happy to be home - safe and sound.