This blog is a chronology of our story and should not be used as the basis for medical treatment or diagnosis. From time to time, you will find links to other websites that we have found helpful, however we offer no guarantees as to the accuracy of these websites. At all times, please use your own good judgment and the advice of qualified medical physicians and specialists.

August 19, 2007

Monday, May 10, 2010


The past two days have been a nice breaking-in period. We are getting used to Michael and the day nurse, and both of them are getting used to us. We had a minor equipment malfunction Friday night, which we repaired after a call to the equipment company at about 10:30 pm. It was a challenging night for Megan and the night shift nurse, and there are some communication gaps that need work with that particular relationship. Live and learn. Satuday night and the coming Sunday night are "nurse free" because the weekend night nurse had a family emergency. (Mom, Dad, and Michael did fine on our own with friend T____ to keep us company.)

We then had a bit of a change of equipment here in the home on Saturday, after a call to the doctor that things were "not right" with Michael. His trach was too dry, there weren't enough secretions, and he couldn't really cough anymore. Part of this was carry over from the equipment failure the night before, but he just wasn't recovering as well as we would have liked. The pulmonolgist on call was not one we knew, and we were a bit anxious that this was not an appropriate "emergency" call, but we made it anyway. Turns out, the pulmonologist was very nice, and he thought our call was quite appropriate. He ordered the new piece of equipment (a heater for the humidifier to help Michael adjust to how dry our house is, which we hopefully will not need too often), and he modified some of the written orders to the nurse so that Michael could be off his humidifier (and hence out of his room) more of the day. We were pleased that Dr. F____ asked to talk to the nurse for an opinion of Michael's condition on an absolute scale, without regard to his prior behavior/condition, and also listened to Megan's concerns that there was a change from Michael's prior condition. He applauded Megan's maternal instinct that "something wasn't right" and encouraged her to keep listening to it. (A HUGE relief to the anxious parents.)

On Sunday, Michael challenged Aunt Lynn to keep the sleeping baby awake during lunch, and challeged both Mom and Dad about whether he would give in to sleep and stay willingly in his crib. It isn't clear who won the battle of wills, other than that food was eaten, and sleep prevailed. We have a true stubborn man on our hands.

In all, a learning experience. Tomorrow is the first of many doctor appointments, which Megan, Adam, and the nurse will all attend with Michael.

I know you all want to hear a lot about Michael, but I hope not to make this a forum on his diaper production and eating schedule or what will undoubtedly be a test of everyone's will. It would be the height of conceit to think anyone really cares about the day to day aspects of raising a baby, other than Dad and Mom. We, of course, find these things fascinating. If I were to type in that kind of log, I imagine you would all tune out pretty quickly. So, I will try to keep this [blog] focused on Michael's medical life to keep everyone posted on how he is progressing and what the next steps are. This means less of a day to day journal, though, as much of the next weeks are focused on giving Michael as normal a babyhood as possible despite his restrictions and home medical equipment.

Love to you all -- Megan, Adam, and Smiling Michael.


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