Friday, January 25, 2008

Update

I just wanted to post an update about Keegan's cylex function that we received this week. This is the test to determine how his immune system is functioning. Keegan's level came in at "low" which means his immune system is very suppressed. This is good and bad - it is preventing rejection since we're still in the critical first-year window, but it also puts him at an increased risk of infection. The good news is that it is higher than it was when they last tested in November, a good trend. While it makes us very nervous that he's not closer to the moderate range especially during flu season, it also gives us some hope that Keegan won't need as much medication to reach a proper level of suppression. Remember the goal is to only suppress the immune system enough to prevent rejection without making him overly susceptible to infection; it's a very difficult balancing game. However, if you remember from a few posts ago, Keegan's level of the main anti-rejection drug just recently hit their goal for 3 months post-transplant. His had been at a level that would be great for someone a year post-transplant, but they wanted it higher for now. SO that means that his immune function was effectively suppressed even with a very low dose of the anti-rejection medicines. As we get closer to the one-year mark and start stepping down his suppression, we're more hopeful now that he won't have to have as much medication or as much suppression to remain healthy.

Another inspiring story in the transplant world .... there is a 15-year old girl in Australia whose body miraculously adopted her donor's blood type and immune system. Scientists are researching her case to see what can be learned - always promising information for Keegan. You can read about this story here.

Lastly, there are new pics and video of the Little Bug here. He's getting to be quite the little ham. He has lost interest in the rice cereal, although we still try it every night. Turns out his bib is much more interesting than eating; we even tried a plain paper towel that wouldn't be quite so attention-grabbing, but he still prefers the paper towel over the cereal. He's sleeping ok these days but not quite like he used to do. I know that's typical baby stuff, but you know that everything that changes with him makes us wonder if something more is wrong. Overall, we're just trying to survive being stuck in the house during the last week of cold, nasty weather. We hope y'all are staying warm and doing well too. Thanks for thinking of and praying for us!

Thursday, January 17, 2008

Update

As expected, yesterday's clinic visit was pretty rough, but all in all, things are still looking good. Chest x-ray and EKG were fine as usual. His labs were good; no changes to meds except to stop his epogen shot because his hemoglobin was normal for two times in a row. They pulled blood for a test to determine the effectiveness of his suppression, but we have to wait another day to tget the results.

Yesterday was the first time Keegan was to be sedated for his echo. He spit a lot of the sedation medication out because it tasted horrible. He never really went under, and he woke up in the middle of the echo really hungry. He didn't drink the Pedialyte earlier in the morning but took some then to at least finish the echo. The nurses said usually kids coming off this type of sedation are "mean drunks" or "happy drunks." Well, Keegan is a mean drunk. He screamed for about 15 minutes unti he finally passed out again. It's also taken quite a bit of time to work that medication completely out of him too, if you know what I mean. At any rate, the echo looked fine in the end. The clot is still there but unchanged. The doctor didn't seem worried.

One bad thing was that he initially seemed to have lost a pound. That worried me, and evidently it worried one of the nurses enough that she called a tech in to look at the scale. Turns out their scale was off over a quarter of a kilo. We ended up having to go the pediatrician today to have her look at a mild patch of ezcema on the back of Keegan's neck, and we weighed him there - 12 pounds!! Getting big!!

Well, I'll have to wrap this up. Keeg's getting a little tired of being in his jumper. He finally figured out he can move around on his own. He's been twisting, swaying, and going up and down for about 20 minutes now! We're going to go taste some rice cereal - oh boy!

The campaign crew is meeting tonight to vote on what fundraisers to try this year, so we'll have some more info on that for everyone soon. We received the account balance for the end of last month, and it was AMAZING!! Thank you, thank you, thank you to everyone who has donated. It truly will help Keegan and many other transplant kiddos. I hope everyone is staying warm out there. Take care, and thanks again for your prayers.

Monday, January 7, 2008

Dr. Visit

Keegan went to see Dr. Lestz today for his 4-month "well baby" check-up. She was so excited to see how well he was doing. When we told her that Dr. Fixler said to treat him as a healthy baby for feeding/sleeping/developmental milestones, she even did a little dance! He weighed in at 11.4 (about 11 pounds, 7 ounces) and 23.5 inches. That puts him in 5th percentile weight and 10th percentile length according to her. He's on his own little curve that's trending the right direction though, so that's what's most important.

She said we could start rice cereal, so Daddy bought 3 boxes on his way home from work! We'll start tomorrow and see how he does...and take pictures of course! Let the messes begin! Dr. Lestz thought Keegan was hitting or exceeding all his developmental points, but his head is still a little flat in the back. She wasn't worried about it yet though. We'll check it out again at 6 months. Other than that, everyone at the office was just thrilled with him.

Keegan hit one other big milestone yesterday - he went to church for the first time! The transplant team said we could start taking him as long as we kept him covered (when isn't he?) and stayed away from other children. He did amazingly well! With all he's been through and all the prayers said around him, I think it must of felt so comfortable to him. We planned it to go during his naptime, and he never lifted an eyelid the entire time. No one bothered him or got near his carrier or asked to see. I just pray he does as well next week!

That's all for now - no hospital this week! I think I may go crazy not knowing what his labs are! Daddy is going on a business trip for most of the rest of the week, so keep Keeg and I in your prayers!! My biggest prayer is that he keeps up last night's "perfect sleep" - not a single peep until after 5am! I hope each of you had a good start to your week. Thanks again for checking in on Keegan!

Thursday, January 3, 2008

Clinic Update

Yesterday was our first "every other week" clinic visit. Although, we ended up going last week for a bit anyway. It went very well. He weighed in at 11.2 pounds again, but it was a different scale. He could have gained a bit if weighed on the same scale he usually is. EKG and chest xray looked great. He had another synagis shot; thank God that's only once a month because he screams so terribly that it truly breaks my heart. Labs were much better than last time. For the first time since he came home, they did not increase his tacrolimus dosage; he finally hit 16. His level has never been more than 6 before! I think it has in large part to do with returning to regular formula. The level of fat intake in a meal prior to the dose can change the rate of absorption. The higher calorie formula had more fat, so more of his dose was absorbed by his food rather than his body. His other white blood cell count was down again, so we stopped the one immunosuppressant that we had started for the first time last week. It's all a big balancing game. Also, his H&H (hemoglobin & hematocrit) levels were normal this week, which means his body is producing red blood cells better than before. You never know what will happen from week to week, but it's nice to have a good set of labs even for one week. This balancing act is exactly why Keegan will have monthly labs for the rest of his life. Oh boy!

In the meantime, we don't go back to the hospital until 1/16, and we might as well bring sleeping bags for that visit. He will be sedated for his echo this time, which I've been told is no fun and takes quite a bit of time. He also has his last cytogam infusion, which means we'll be dragging an IV pole and monitor around with us everywhere for at least 3 hours. Can't wait for that one.

Other than that, things are pretty normal around here. We've had a cold snap, so we're going stir crazy locked in the house. I have to say I really liked my house until I was stuck in it 24 hours a day, 7 days a week! ;) Keegan is still sleeping well and eating 5 ounces at least half of the bottles. He really loves to be in his jumper and exerciser. I know as he grows and starts to jump that we'll have a hard time getting him out of it!

Hope everyone had a good first week to the new year!