02 Dec Rough Week
Alright, we officially updating only from this website now. Thanks to Mark for transferring all 92 entries! Yikes! Photos and old guestbook entries will be transferred next. We are still learning how to work with this platform, which is a pain. Luckily, Brenda, the COTA rep who met with us Wednesday, told us that they will be updating their sites by next year – thank you!! In the meantime, please take a minute to change any links you may have saved to this site rather than the multiply site. Thanks!! Now on to whom you really logged on to hear about…KEEGAN! 😉
Bug had a pretty rough week. He made 3 trips to CMC on Tuesday, Wednesday, and Friday, respectively. Wednesday was normal clinic day. 9.3 pounds, 23 inches!! Labs looked great; his kidneys seem to be doing fine without the diruetics. The test they ran a few weeks ago to see how effectively his immune system is being suppressed indicated that everything is working well, despite being on less medication that expected. He had another echo. The clot is still present in his right atrium; it either hasn’t changed over the last month, or it may have gotten slightly smaller. Either way, it’s still there. Susan, the transplant coordinator, said that it may never go away and that many people live with clots their entire lives with no complications. The plan Wednesday was to continue the anticoagulant he was on as treatment.
So, why the other two trips? You may remember that Keegan had a subcutaneous catheter in his leg that we administered his 3 shots a day through. (He takes most of his meds by mouth as liquids, but he got 2 shots of the anticoagulant and 1 shot of a red blood cell booster each day.) It’s a great concept – a little port that they switch between his thighs each week, so one big stick at clinc each week rather than 3 shots a day. Monday night, there was blood and medicine leaking from the injection site into the dressing, so we pulled the catheter. Gray took Keegan in Tuesday morning, and they put a fresh one in his other leg. The old one left a huge knot is his thigh and a nice-sized bruise. Well, Friday at noon when I inserted one of his shots into the port, blood actually bubbled out of the entry end and also out from the injection site. I pulled that one; Gray came home, and we all went back to the hospital on Friday afternoon. Now he has big knots and bruises on both of his little thighs. The doctors decided Friday not to put in a new catheter (don’t know where they would put it since both legs are banged up now). They drew blood and will test his clotting rate over the weekend. They didn’t think it would hurt to stop his shots over the weekend. They may even stop the anticoagulant for good since it likely either isn’t helping reduce the clot or is doing it so slowly that the drug they’re using isn’t doing much anyway. We’ll let you know more Monday after all the “brains” get together over lab results.
Brief update about the meeting we had Wednesday with COTA. If you couldn’t come, it wasn’t a big deal; mainly we discussed the ins and outs of how a campaign works. We have some great fundraising ideas, and we are trying to get some of them organized before Christmas. Once we limit which ideas we are going to pursue, that’s when we’ll really need some volunteer help. So far, we’re thinking the 5K run, a poker tournament, coin collection boxes, and letter writing. The campaign will probably only be full-force for about a year. Again, we’ll update once we have it a little more together. Thanks to Brenda for coming down to Dallas to educate us, and thanks especially to our “team” (Marci, Ben, Mr. Lottie, Mark), my dad, Leah, Jen, Meghan, and Katie for coming out to the meeting.
That’s about all the news fit to print. Keegan is so handy – he put the Christmas tree up yesterday. 😉 No really, he just gave directions on where all the decorations should go – quite the eye! Thanks again for your continued love, support, and prayers for all of us. At Christmas, as we celebrate the birth of Jesus, Gray and I are ever thankful that He has blessed us with a miracle and the most beautiful sign of His enduring love for us, Keegan.
Have a great week,