8:00 pm: Kristen and I met with the "team" which was composed of the attending pulmonologist, the resident pulmonologist, assistant nurse manager, physical therapist, occupational therapist, student occupational therapist, house supervisor/patient representative, social worker and the case manager at 3pm this afternoon. We believe word had spread, either by word of mouth or via this blog, that we were unhappy with multiple things hence the House Supervisor/Patient Representative. The pulmonologist thought it was in Reid's best interest to have a trache as Reid's development (physically, mentally, etc) was being stunted due to his weakened pulmonary system. The fact that Reid has to compensate for his poor lungs (either by sleeping to recover from the fatigue he endures when trying to do things other than breathe, or by other organs in his body compensating for his high CO2 levels), he is at a disadvantage, and as bad as Kristen and I do not want the trache, it is going to be the best thing for him. This is going to be a huge undertaking for us and I am still not sure we know what we are going to get ourselves into, but at this point it is about giving Reid the support he needs and the environment he belongs in. Spending nine months in the hospital, regardless of age, is not good. As much as our nurses have given Reid, it will never be as much as he will get from us at home.

We are meeting with the trache educator tomorrow and will give our final thumbs up to the procedure on Friday. From there, we will meet with the ENT surgeons to discuss the procedure and will most likely have it done before the end of next week. After surgery, he will spend 7 days in the Pediatric ICU and on the last day, he will have his trache changed by the surgeon. During this week, Reid will be fairly sedated to not only keep his pain in check, but also to prevent him from grabbing at his new 'appendage'. After a successful change, Reid will then be moved back into the TICU where we will probably spend about 4 weeks getting trained and accustomed to the new way of life for Reid. Our philosophy right now is that the sooner we get it done, the sooner we come home.

Life is not going to be a walk in the park and we are going to have a huge lifestyle change. Not that having a new baby at home is not a lifestyle change in itself, but EVERYTHING is going to be different. At first, we will probably have a nurse at our home 24 hrs a day and this will probably be another challenge. We are going to have very little privacy or alone time, but whatever makes the transition home easier, we are all for it. And as much as we hate to ask, we are going to need lots of support from our friends and family over the next few months.

The past few days have been stressful as we have been trying to wrap our brains around this. I think we have made our decision and we are slightly more at peace with what has been put in front of us. I still question why God did this to us and I hope that one day we can figure it out, but right now, we are still very angry about the cards we have been dealt. We are weary about our decision, but we are more than ready for Reid to come home. The trache will be a means to an end and the start of our new life. The day that he is running around and breathing on his own will make this decision well worth it.