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.
Monday, August 24, 2009
Tuesday, August 18, 2009
Update
Keegan's having a bit of a better week with his intestinal problems. He is really excelling in occupational therapy, mainly working on his upper body strength now. Feeding therapy isn't really progressing yet, but it will just need time. We will run a full panel of labs and do his monthly breathing treatment tomorrow. Thursday, we have an appointment with his hematologist. It seems Keegan isn't responding to his shots for his anemia and neutropenia the way he used to, so we will be discussing what, if anything, we're going to do about that at this point. We are also anticipating trying to wean his antibiotic by the end of the week. Since Keegan's diarrhea is slightly improved, trying to wean him off the medication now will give us a better idea if it is helping, hurting, or doing nothing at all.
We finally spoke with Keegan's nephrologist about the ultrasound of his kidneys done last week. His left kidney is atrophied and not filtering much at all. His right kidney is enlarged from taking up the slack, but it is, at least, taking up the slack for the left one. The other good news is that there has been no further degeneration since February, when he last had his kidneys scanned. They can't be sure, but the doctors don't think that his renal failure post-transplant was the cause of his current problems. It's more likely that the left kidney was always smaller; we were just paying more attention to his heart at the time. It is possible that his kidney didn't get enough oxygen in utero due to his heart defect and is underdeveloped (much like what we think may have happened to his intestines). There are a few other issues the nephrologist will be discussing with his hematologist. We'll be sure to update once we know more. Obviously, the big question here is what does his current kidney state mean for his future? Immunosuppressants, especially the one Keegan is on, cause kidney toxicity over time. Keegan's not yet 2 years old, already has abnormal kidneys, and will be on immunosuppressants every day for the rest of his life. Again, these questions are ones we are considering carefully and consulting with our doctors about them.
Thank you so much for your prayers for Hannah! I went to visit her today, and she looks awesome! Her heart biopsy showed NO rejection, and she has not bled in over 10 days. She was sitting up in a chair, watching Sleeping Beauty, and telling me that she really wanted a salad and cereal with a banana (what a combo!). God is so good! Also, please keep little miss Avery in your prayers. She had a scope and bone marrow biopsy yesterday, and she spiked a fever today. Please pray that she recovers quickly at home. She is a courageous fighter, but she needs to stay home with her mom and dad!
New pictures are up on Keegan's photo site! Sorry we haven't posted any videos lately. Gray got an awesome new camera for his birthday, but we haven't figured out how to use the video and all the other fun features. We will record some soon. We are so grateful to have Keegan at home. We are so busy with doctor visits, therapy, labs, etc (only one day off in over two months!), but we are making the most of the time we have left before winter lock-down (which will unfortunately probably start earlier this year due to swine flu). Check out the pictures of our happy boy, and you'll see that he doesn't seem to mind anything! We love him so much, and we are so grateful for your prayers and support for our blessed miracle!
We finally spoke with Keegan's nephrologist about the ultrasound of his kidneys done last week. His left kidney is atrophied and not filtering much at all. His right kidney is enlarged from taking up the slack, but it is, at least, taking up the slack for the left one. The other good news is that there has been no further degeneration since February, when he last had his kidneys scanned. They can't be sure, but the doctors don't think that his renal failure post-transplant was the cause of his current problems. It's more likely that the left kidney was always smaller; we were just paying more attention to his heart at the time. It is possible that his kidney didn't get enough oxygen in utero due to his heart defect and is underdeveloped (much like what we think may have happened to his intestines). There are a few other issues the nephrologist will be discussing with his hematologist. We'll be sure to update once we know more. Obviously, the big question here is what does his current kidney state mean for his future? Immunosuppressants, especially the one Keegan is on, cause kidney toxicity over time. Keegan's not yet 2 years old, already has abnormal kidneys, and will be on immunosuppressants every day for the rest of his life. Again, these questions are ones we are considering carefully and consulting with our doctors about them.
Thank you so much for your prayers for Hannah! I went to visit her today, and she looks awesome! Her heart biopsy showed NO rejection, and she has not bled in over 10 days. She was sitting up in a chair, watching Sleeping Beauty, and telling me that she really wanted a salad and cereal with a banana (what a combo!). God is so good! Also, please keep little miss Avery in your prayers. She had a scope and bone marrow biopsy yesterday, and she spiked a fever today. Please pray that she recovers quickly at home. She is a courageous fighter, but she needs to stay home with her mom and dad!
New pictures are up on Keegan's photo site! Sorry we haven't posted any videos lately. Gray got an awesome new camera for his birthday, but we haven't figured out how to use the video and all the other fun features. We will record some soon. We are so grateful to have Keegan at home. We are so busy with doctor visits, therapy, labs, etc (only one day off in over two months!), but we are making the most of the time we have left before winter lock-down (which will unfortunately probably start earlier this year due to swine flu). Check out the pictures of our happy boy, and you'll see that he doesn't seem to mind anything! We love him so much, and we are so grateful for your prayers and support for our blessed miracle!
Monday, August 10, 2009
Little Update
Keegan has a renal ultrasound tomorrow to get a better look at his kidneys. We have a few more questions to follow-up with the nephrologist after the results are back. We will let you know what we learn.
He's still struggling with worsening GI symptoms. They're not the worst he's ever had, but it's certainly been better. There's not a lot we can do at this point. His cultures were negative, and his labs were about the same last week. The oral antibiotic he's been on since Boston doesn't seem to be helping or hurting at this point. We will likely continue to wean it aggressively because if it's not helping, he doesn't need to be on it. As his GI doc said this morning, nothing else has changed, so it's next to impossible to determine why he's gotten worse. We've put a call into our doctor in Boston to see if he has any more ideas. If not, we'll probably just see if we can't help the symptoms, despite the cause. A little fiber in his formula, maybe even some immodium. The good news is the formula he's on (Elecare) is doing it's job, and he's maintaining his weight despite the increase in output.
Again, Keegan is so used to feeling like this, that he's pretty much acting normally. He's such a happy kid despite all this. If you know him, you can tell when he's not feeling well, but he probably would seem like a pretty normal kid to most people. For that, we're grateful. Please continue to keep Hannah in your prayers. She had a very serious and risky surgery over the weekend in an attempt to stop the bleeding for good, and we pray it works. She is fighting hard but in a lot of pain. Please pray for her continued recovery and no complications. Thank you so much! We'll update again at the end of the week with more pictures and news on the kidneys. Have a great week.
He's still struggling with worsening GI symptoms. They're not the worst he's ever had, but it's certainly been better. There's not a lot we can do at this point. His cultures were negative, and his labs were about the same last week. The oral antibiotic he's been on since Boston doesn't seem to be helping or hurting at this point. We will likely continue to wean it aggressively because if it's not helping, he doesn't need to be on it. As his GI doc said this morning, nothing else has changed, so it's next to impossible to determine why he's gotten worse. We've put a call into our doctor in Boston to see if he has any more ideas. If not, we'll probably just see if we can't help the symptoms, despite the cause. A little fiber in his formula, maybe even some immodium. The good news is the formula he's on (Elecare) is doing it's job, and he's maintaining his weight despite the increase in output.
Again, Keegan is so used to feeling like this, that he's pretty much acting normally. He's such a happy kid despite all this. If you know him, you can tell when he's not feeling well, but he probably would seem like a pretty normal kid to most people. For that, we're grateful. Please continue to keep Hannah in your prayers. She had a very serious and risky surgery over the weekend in an attempt to stop the bleeding for good, and we pray it works. She is fighting hard but in a lot of pain. Please pray for her continued recovery and no complications. Thank you so much! We'll update again at the end of the week with more pictures and news on the kidneys. Have a great week.
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