5th Week (Home) – Alexandria's Journey

36 Days Old

Jan 212012

Terry, Alexandria, and Brendan

About a year ago Kim and I were made aware of the Michigan State University Longitudinal Patient-Centered Experience program. This is a program where first and second year medical students get to follow a patient with a chronic health condition and visit with this patient over the course of a year. We felt it was a good opportunity to share with future doctors the experience of children with special needs and their families, so we volunteered to be in the program. We were assigned a pair of students, Brendan and Terry, and they visited us every other month or so for the year. Each visit they were given a theme and questions by their instructors. As the year progressed we shared with them everything about what doctors did correctly, mistakes that they have made, how insurance had worked(and not worked), what many of our challenges and experiences with Aden were, etc. We wanted to make sure they had a clear picture of the murky unknown waters we sail through on a daily basis. 🙂 It was a unique experience to have them in the house, they were given the opportunity not only to see Aden, but see how he interacts with his siblings, how he took some time to get to know them, all the little quirks that go with the package.

We let them know when Kimberly was pregnant, which steered into conversations about Matthew, Gabriel, and Ethan.

Terry and Alexandria

We shared with them when things became more clear and that Alexandria was not well. We kept them in the loop and gave them the picture of our newest experience.

I am hopeful that we had a good impact, and that it helps them when a child with special needs ends up in their office/ER. They were fantastic and we learned a lot from them as well. Our year-long endeavor ended last December.

Today they came by to visit and meet Alexandria. It was a great visit and good to see them again.

Alexandria and Brendan

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All in all today was a great day. She stayed in the “normal” for a good part of the day and was warm for most of it as well. Kim has started calling me the “daddy paparazzi” because of the number of photos I take. 🙂

Kimberly and Alexandria (36 Days Old)

34 Days Old

Jan 192012

Alexandria 34 Days Old

Alexandria has been slowly getting worse since Monday. She has moments of “being fine” though, and for a good part of Tuesday she was good. She continues to have bradycardia (slowing heart). Yesterday Kim and I noticed that for a little while her hands and arms were almost white. She has begun “snacking”, eating a very small amount at a time, but eating more frequently… this is because eating is tiring her out. Last night she had a very fussy time, crying quite a bit, and her heart rate began to rise. Around 10:30pm or so we called Hospice because her heart rate rose a few times over 220bpm (very high), enough to set off the alarms. During our conversation with Jessica, Alexandria started to pass some gas. Kim went to the store and bought her mylicon (for gas) and this eventually helped her calm down. Our hope is that the gas and anxiety of it is what caused her heart to race so much… it was the closest we’d come to giving her morphine. She was crying so much, her heart rate was racing, she seemed like she was in pain…

To complicate things, although I absolutely want her to be comfortable, I can’t help thinking about the feeding tube incident in the hospital. I ordered that and she had her first close call with death. I know now that it was a coincidence, but at the time it was devastating and terrifying. What if I gave her the morphine and she died? I brought those worries to Jessica’s attention and she assured me that it wouldn’t hurt her.

This was the first time I’d even considered she may die in pain. When my mother was in hospice she died slowly, but on pain medication, and it was what I would consider a peaceful death. Last night, with Alexandria crying in pain, her heart racing, the alarm going, I was horrified to think this may be how she passes. Not quietly in my arms like Mom, but crying in pain having a heart attack. I do not know how to face that. It never crossed my mind until late last night, that this… that “that” death was even a possibility. I will always be there for her, I will always hold her and comfort her, I know I can do that. But I don’t know how I’m going to get passed this.

On a lighter note, could you imagine almost giving your daughter morphine because she had gas pains? That’s almost comical.

Tonight has been a good night, she’s got good color, awake and opened eyed. Kim and I love when she has moments like that.

Gabriel holding a very sleepy Alexandria

Alexandria thinking "You woke me up... oh you are so going to pay for this..."

Alexandria thinking... "Yeah... bring that finger just a little closer...

*CHOMP*