Our desire to get somewhere where he can be treated or at least seen with fresh eyes is increasing exponentially at this point. He had a very rough weekend. A few ounces of lemonade on Saturday tore him up for the rest of the weekend. Just lemonade. Really? Then last night, we had another port issue come up. We were delayed in getting Keegan's TPN hung because of the "big announcement." (Not going to soil my son's blog with that name. Sorry.) His line would not draw back or flush around 11pm when we went to hook him up. We made a few calls to the hospital and ultimately decided to try to reaccess him ourselves. After calling family for back-up, we plucked Keegan out of bed and did the quickest needle change ever. It took a little bit of manipulation, even with the new needle, but we got it working without a trip to the ER. I still have no idea what happened. Just one more crisis to reinforce the need to get Keegan some help...and quickly.
This choice is not going to be easy. Boston has the positives of familiar faces and not having to start over from scratch. Only two years to cover, rather than almost four. His transplant team there has been advising us for months on his immunosuppression issues, so there will be little frustration in turning that responsibility over to them. Cincinnati is the top-ranked GI program in the country for many, many years and has the thumbs-up endorsement from some good friends who are treated there. Just yesterday, we had someone refer us to a program in Omaha that sounds promising too, so the decision is certainly not getting easier as days pass.
All that being said, we are still waiting on biopsy results. We would greatly appreciate your prayers at this crucial time. Prayers for clarity and wisdom as we make big decisions that will affect our family for years to come. Prayers for compassion and insight from doctors looking at Keegan's issues for the first time and hopefully doing all they can to do it quickly. And as always, prayers for healing for our precious Bug, if that is His will.
Lots more to do tonight. Just wanted to post a quick update.
And of course, some random pictures just for fun!
Colored bubbles...fun & messy!
He's hugging her! I promise!
Being a trooper before his scopes last week
Mama's garden helper