Surgery Day #17

Henry had another relaxing day today in his path to recovery! Henry had fluoroscopy of his lungs/chest done this morning (similar to the bronchogram he had earlier this week) to take a second look at Henry's diaphragm to again confirm the presence of the problems on his left side. There was some debate on whether or not the nerve was irritated or damaged that was causing the diaphragm to work incorrectly, and this test was to confirm that surgery was necessary. For all of the procedures/testing they perform on his lungs, Henry has to be off sedation and breathing over the vent settings in order to accurately diagnose problems. With the lower sedation comes a little bit of personality and some discomfort as he wants this tube in his nose out (vent) but isn't quite ready to breath on his own and doesn't understand why. Luckily his providers were able to confirm the paralyzed diaphragm pretty quickly and are now planning for the plication (pinning of his diaphragm) as a result. Henry will have surgery on Monday and will have a nice weekend of more R&R until then. Next week will be an exciting week with both surgery and another attempt at extubation depending on his pace of recovery. We, of course, can't wait to get our arms around him again and are waiting patiently:)

Julie and I have felt pretty overwhelmed with support this week as coworkers at both of our workplaces have donated money, gift cards, magazines, snacks and (instant!) coffee as well as warm wishes and prayers. We've had friends bring food and make us laugh until our stomaches ached, had family kick us out for breaks from the hospital and have had more shoulders to cry on than I can count over the last two weeks. We're fortunate that Henry's hospital stay was expected- we got to emotionally prepare for it, make plans for work, our home and our pet etc. The length of our stay nor multiple "bumps" in Henry's road to recovery have not been expected, and these overwhelming gestures of kindness have helped to keep us strong for Henry. It make your heart survive the hours spent waiting to see/hold your child. It makes smiling when you want to cry possible. It makes you confident that no matter what lies ahead for your child, you are able to support him each step of the way. We can't thank each and every one of you enough for all of these beautiful gifts... but we'll definitely try:)

Much love,


-Kate and Julie (a.k.a. nurse assistants:)