27 Apr Update
I apologize for the lack of updates. I’ll make up for it here. Grab a cup of coffee, and sit for a bit! No, really…this is a long one!
We had a break in doctor visits since Thursday afternoon until tomorrow. How nice is that? Although, Keegan gave us a good scare on Friday. The weather in Boston has been absolutely gorgeous since Thursday, even a touch too warm the last two days. Yesterday, it was hotter in Boston than back home in Dallas. So, Thursday during a lapse in appointments we spent some wonderful time in the hospital garden. It has been truly amazing to see it go from barren beds to blooming beauties in the last two months. Friday, we went walking to the Public Garden, hoping to take a Swan Boat ride. The line was halfway around the park, so we just walked, enjoying the sun. It was a bit windy though, and we noticed Keegan was sneezing often and had a bit of a drippy nose. We went to lunch with my dad’s business partner, who is an amazing doctor and was in town for a medical conference. By the time we got back to the apartment, Keegan’s temperature was starting to climb. The skin around his eyes was extremely puffy and red; his rash was awful. We gave him some benadryl and waited for his temperature to reach the magic number where we’d have to call the transplant team. It stopped at 100.4, one tenth below the magic number. He’s still a bit drippy when we’re outside, but he seems to have rebounded.
In other medical news, Keegan’s diapers are coming back to his range of normal (4-5 per day). We were starting to get excited that maybe the new 1-2 dirty diapers a day was going to be the new normal, which would be even closer to a healthy kid on formula. We knew that wasn’t to be though because his belly was getting more and more distended, and of course, we knew it was too much of a big swing from what happened post-biopsy. At any rate, we’re just happy to see him back in his own range and not so distended for now. We had his g-button replaced last Thursday with one that fits a bit tighter to his skin. We’re still having some issues though, so hopefully, the doctors will have some insight on that tomorrow. Keegan’s skin is one of our bigger worries right now. As we’ve said before, the rash is ever-present, ranging from raised blotchiness to pin-dot redness. His skin is always dry despite lathering him in Aquaphor multiple times a day, and now it seems to be raised and rough over most of his body, feeling quite like sandpaper or leather. The skin around his eyes is the most disturbing when it is angry though. For these reasons, our team here would like us to see a dermatologist. We wish we had been able to do it here, but considering how long we’ve been here, they are ok with us going home to see one. Keegan will probably have a skin biopsy (really easy to do) soon to help us put the skin issues in perspective with the big picture of Keegan’s illnesses. As we discussed in the previous post, there could possibly be an overarching immune system dysfunction at play here that we have yet to figure out. Perhaps the rash is the last piece of the puzzle.
Saturday, we had a lovely visit from Larry & Tricia Beach, close friends of Gray’s family since growing up in San Antonio. They live in the Berkshires now, and we were really wanting to go spend a weekend with them out there. However, with Keegan’s little scare Friday, they decided to come see us in Boston Saturday, and we were so grateful. We had a lovely lunch at a restaurant in the North End, followed by yummy gelato. Then, we went to Charlestown and walked around and UP the Bunker Hill monument (not Keegan, just Gray, Larry, and me; funny story – there’s a sign at the bottom saying not to attempt the climb if you have problems with your heart, and when I turned to Keegan saying that he was thus not allowed to go up, the jaws of the three women behind us hit the floor). 294 stairs…in a tiny, spiraling, enclosed granite staircase. Beautiful views at the top, but all I could think about was that Keegan has been hospitalized much, much too long, resulting in Mama & Daddy being much, much, much too out-of-shape. We are STILL sore from the climb! Thank you, thank you to the Beaches for a wonderful afternoon. We truly enjoyed it.
Yesterday, we started our plans for going home with the faith that the thumbs-up will be given tomorrow at our final doctors’ appointments. We planned out who would take what bags (Gray and I were going to be flying on separate airlines, don’t ask) and what would need to be mailed. We are supposed to be going back on commercial flights, but the CDC increased the precautions in regards to the swine flu outbreak yesterday. Boston and Dallas are major international hubs, and Dallas has a lot of traffic from Mexico. So, this morning we were in touch with Keegan’s team here, who had already contacted their infectious disease colleagues about it. They think it’s reasonable to be worried at this point. If they are worried, so are we; this is the same set of doctors that told us we were being silly to not want to fly commercial before this. Our new plan is now to go buy a second car seat and rent an SUV to drive home. It will be a three-day trip, stopping for a day in Nashville to rest. (Gray will just have to convince me to actually leave Nashville again…hard thing to do.)
We spent a lovely afternoon yesterday walking down Commonwealth Ave and playing barefoot in the cool grass of the Public Garden. We had dinner and sangria in a sidewalk cafe on Newbury Street once a cool, ocean breeze came in, which made us feel like we were back in Barcelona for the night. This morning is more planning, and we hope to actually get on a Swan Boat this afternoon. Just wish I had some shorts and sandals with me!
Tomorrow, we will be at the hospital most of the day. Keegan has a full set of labs in the morning, and the cardiology clinic is going to be super-busy. Then, we’ll have a very thorough team meeting with transplant and GI, possibly visits from hematology and immunology too. Tomorrow afternoon, we are praying will be filled with packing, packing, and more packing. We will update again tomorrow with more information after our appointments.
We’ve posted a few new pictures. Be sure to check them out, and leave a comment of encouragement for Keegan going home! Also, have you checked out Keegan updates on Twitter yet? We’ll probably only be updating from Twitter on our trip home. You do not have to have a Twitter account to see our updates. We apologize for having multiple websites to keep up with Keegan. Once we hit our $50,000 fundraising goal, we can have a regular blog where all this will be in one place. That’s good motivation, huh? I’m planning a post about COTA fundraising soon, so keep an eye out for that. Since this is the longest post in history, I’ll end by saying that we simply cannot express the immense amount of gratitude we have for your prayers during this ordeal. We are so blessed to have wonderful support for our Bug, and we pray that this is the end of our hospitalizations for some time to come. Thank you!