Two hospitals. Two big clinic appointments. Two very long days this week.We spent most of Monday at Scottish Rite with the rheumatology team and most of yesterday at Children's for Keegan's regular transplant cardiology appointment. Overall, the consensus is that Keegan is stable and doing...
I guess once a week blogging is more often than I was doing, so technically, I'm still on track. Right? We had a busy few weeks between Keegan's birthday and transplant anniversary. Lots of celebrating to do! Keegan has been doing pretty well. We have almost...
On Saturday, we celebrated Keegan's fifth birthday with a Mickey Mouse themed party at our house. Keegan loves many cartoon characters, but few can hold a candle to Mickey these days, particularly classic Mickey and Donald. Of course, we originally planned this theme back when...
Is it even possible? Keegan is 5 YEARS OLD today!There was a day I questioned whether this day would ever happen. We are utterly without words to express the vast expanse of feelings we have experienced today. You are our true miracle, Keegan. We love...
Audrey's first day of "school" was last Wednesday. She is going Monday, Wednesday, and Friday this year to the same school at Christ United where she went last year. Her first two days were great! She woke up Wednesday saying, "I go to skool!" So...
On Saturday, we took the kids to the free family day at the Nasher Sculpture Center to see Ernesto Neto's Cuddle on the Tightrope before it closed. Art meets playground. Pretty nifty.Not sure if they wanted to go through yet.Waiting, waitingTook our waiting outside for...
The "how-long-Keegan's-been-home" clock has restarted and is now sitting at a week. His labs last week looked better, and Monday night was his last dose of IV antibiotics. Overall, he is doing pretty well and has gotten back into the groove of therapy and appointments....
Keegan's home.Our schedule for tonight:10:45pm - Start TPN11pm - Go to sleep1am - Give IV benadryl and start IV antibiotics; change diaper1:20am (if I'm lucky) - Go back to sleep3am - Stop antibiotics; flush and lock line with heparin; check diaper again.3:20am - Maybe go...
Today was better than yesterday, and for that, we are grateful. Keegan walked twice and went to the play room for 45 minutes. Much better than yesterday's 10 minutes. He is more even-keiled today also. I'm sure it helps that his heart rate finally came...
Keegan made it through day 3 of anesthesia and has a new central line to show for it. His surgeon said this was the smoothest line placement he has done on Keegan. Unfortunately, the team felt very strongly that Keegan should not have another port...