Hi everyone, Maddie's pacemaker interrogation on Monday had extremely positive results. Her thresholds dropped to a very acceptable level (at or close to what they were at the time of surgery) and she hadn't used the pacemaker all week since her previous interrogation! This means a longer battery life, so potentially many years until her …
Category: Maddie
Maddie Update 5/12 – 5/15
Hi everyone! It has been an eventful but relatively peaceful few days. On Thurs, Jen and I arrived at the hospital to find that Maddie was scheduled to be transferred to their recovery rooms (heart and kidney unit). It was a bit early, but the surgeon felt that it would be safe and most importantly, …
Maddie’s Changing table
In preparation for Maddie coming home, I wanted to build her a new changing table. We have had to change Maddie in the pack and play, which is too low and really hurts our backs. So I thought about making it higher, big enough to hold some toys and any equipment for monitoring her pulsox stats, …
Maddie update 5/11
Dear friends, Maddie's recovery continues and she's made progress in many areas the last two days. She's able to play with both hands (and even her feet!), she's smiled a few more times to Jen, and the physical therapist has been able to get her to sit up by herself, albeit for just a few …
Maddie Update 5/9
Dear friends, Maddie's continuing to recover and is showing better tolerance of the weaning of medications today compared to the past few days. She's also shown tolerance of her food intake so they've continued to increase her feeds (although still through a feeding tube that goes straight to her stomach/intestines). She's still a ways from …
Maddie Update 5/4-5/6
Dear friends, Maddie's continuing to recover and is showing better tolerance of the weaning of medications today compared to the past few days. She's also shown tolerance of her food intake so they've continued to increase her feeds (although still through a feeding tube that goes straight to her stomach/intestines). She's still a ways from …
Maddie Update 5/3
Dear friends, Maddie's pacemaker operation went as expected and smoothly this morning... we even had some unexpected surprises! She was intubated with a breathing tube for the procedure. Although the doctors had mentioned she might need to stay intubated for the day and maybe even for a night, she was a champ and was extubated …
Maddie update 5/2
Dear friends, We arrived at the hospital around noon today and were greeted with Maddie playing with the tags on a panda doll that the nurses had given her. She always loved tags and her little fingers were turning it around and she was gazing intently. This was very encouraging since it meant a return …
Maddie update 5/1
Hi everyone, On Friday Maddie was successfully extubated (breathing tube removed) and she was able to make a few feeble cries when she was fully awake. She was still on morphine and fell asleep for most of the rest of the day. Her kidneys, liver, and blood stats were all improving daily. I went home …
Maddie update 4/27 and 4/28
Dear friends, Apologies for not writing last night, we came home to spend time with Abby and today Jen and I went back to the hospital but I came back home in the afternoon to relieve my parents a bit. Jen's taking a shift at the hospital by herself. We are so thankful that the …
Bill + Jennifer 