Monday, August 24, 2009

Update

Well, not a lot of new info on the medical front, but keep reading! GREAT news to wrap up this post!

Keegan's intestinal problems continue to be a daily battle. Some days are ok, and some are far from it. There doesn't seem to be any continuity right now, but he's hanging in there. He had a horrible diaper rash flare up last week, but it's better now (leading to lots of "oxygen therapy", aka nekkid time!). He also had at least one intussusception last week, but it was pretty fleeting as far as they go for him. Because this isn't the worst he's been and we're not sure when things will be better for a prolonged time, we'll probably try to forge ahead with the antibiotic wean soon. Labs from last week were pretty stable, except for his liver numbers creeping up again. Even though they seem to be going up, we're not going to torture Keegan with repeated blood draws. If he appears symptomatic of anything, we won't hesitate to run them again. Until then, we'll let him have a break from the needle, since there's not much we can do about the numbers anyway.

Keegan's hematologist still didn't want to change his shot regimen at our appointment last week. As for his white count (neutropenia), he is dropping more in between shots than before, but he is still spiking up for at least 12 hours in response to each shot. Even with the shots, Keegan rarely makes it into the normal range. If his numbers continue to fall between Sunday and Wednesday doses in the next month, we may increase his Sunday dose, giving him more of a consistent boost throughout the week. If he spikes a fever or gets sick over the winter at all, we were instructed to go to daily shots immediately until given the ok to go back to our normal routine.

As for his red count (anemia), the doctor would have preferred to wait at least another 4 months to attempt a wean. That would have been around January, one of the worst times for Keegan to try medicine changes. We'd hate for him to get sick in the winter and return to being dependent on blood transfusions again. SO, since we have a little over a month before winter lock-down, I convinced her to let us try going without that particular shot for just thismonth. We know the warning signs that he's becoming too anemic, and we'll be checking levels in a month at his annual transplant clinic. There's one other benefit to this trial - a better idea of his kidney function. The shot he gets is actually a hormone supposed to be produced by the kidneys and one of the first signs of kidney troubles. We can't get an accurate read while he's on this medication. If his hemoglobin begins to drop again off the med, we can test his natural levels. Too low indicates his kidney function may be worse than we thought. Let's hope that's not the case.

This past Saturday, Keegan was super lethargic, tachycardic (high heart rate), and had an elevated temperature, not quite a fever though. We were nervous, but he seemed to recover by Sunday. Just in time too! We received four free tickets to the Frisco Roughriders (Rangers' farm team) game Sunday night and invited Aunt Alex to come with us. Keegan enjoyed it for about 45 minutes before becoming WAY over-stimulated. We left by the fourth inning, but it was fun while it lasted. We were sporting a mix of Rangers and Boston gear (I may be disrespecting my Texas roots, but Go Sox!). Hopefully, Keegan will be more into the game and less into the stairs in the stands by next season!

NOW for the wonderful, blessed news you've been waiting for!! Recently, we were overjoyed to receive an email from Keegan's donor family announcing the birth of their beautiful new son, Kingsley, on August 4th. Congratulations, Kevin & LaMonica! As you know, we exchanged one letter back and forth just after the transplant but had not been in contact since then. You can imagine our joy and surprise to see Kingsley's adorable face in our email box! Last year, I shared with you that Keegan's heart angel, Johnston, was born a mere six hours after our Bug. God called him home unexpectedly, but his amazing heart and spirit continue to spread happiness and the love of Christ every day to so many. Please keep Kingsley, Kevin, and LaMonica in your prayers at this special time. I know they will appreciate it greatly. We are looking forward to getting to know this selfless family and watching Kingsley grow, knowing that he has the best big brother in the world watching over him constantly.

Again, thank you for your prayers for Hannah. She dealt with a brief setback due to infection but is looking forward to going to the floor tomorrow and celebrating her fifth birthday in style on Sunday! Can I ask one more favor? More prayers for sweet Carter, back in the hospital with a possible infection and low blood counts again. He is hoping to go home soon and avoid a trip back to Boston at this point.

Well, I think that's enough! I hope you're still with me because there are NEW PHOTOS up, including a few LaMonica sent of handsome Kingsley. We can never thank you enough for your faithfulness and love for our family. We can feel your prayers lifting us up daily. Thank you.