Wednesday, February 27, 2008

Clinic Update

Just a quick update on how clinic went today. Keeg weighed in at 14.1 pounds! Obviously, he's still gaining weight even though I had been worried that he had been eating less lately. Chest xray, EKG, and labs all looked pretty good. Of course, his tacrolimus level was still low, so up we went again on that medication. Tacrolimus or Prograf is his main anti-rejection medication. Awhile back I explained that they are looking for a level in his blood around 15, but his usually stays within the 6 to 9 range no matter how much they increase his dose. However, his cylex assessment (the test that shows how effectively his immune system is suppressed) continues to be low. That means that his system is "nice and quiet" according to Dr. Barnes, despite not being where they would like on his tacro. The cylex assay takes about 2 weeks to come back. They pulled blood for another one last time we were at clinic, so we should get the results of that soon.

Keegan was supposed to get his last Synagis shot today (the $2000 bugger that staves off RSV, a sometimes fatal respiratory infection). This would have been his 6th dose, and our insurance only approved 5 initially. By the time we left the hospital today, the insurance company hadn't responded with the clinic's request for today's dose, so we'll have to go to the hospital later in the week again to get it. It's a pain for us, but Keegan loves going so much he won't mind - even if it is for a really painful shot. He gets to see all his nurse/doctor/surgeon friends and occasionally some ICU buddies. Today, we got to see Tucker when he was coming in for a check-up. He's two weeks younger than Keegan and already almost 17 pounds! He has had some rough patches after surgery and being on ECMO too, so we're praying he got a good report today.

A few things had us worried over the past week. Keegan had not slept well in days on end. He seemed uncomfortable alot and would fuss and cry all night, which is not like him at all. On Sunday, he went into a completely unprovoked, absolute frenzy of a fit for a good 10 minutes. When he calmed down, his color was completely ashen and his hands and feet felt cold. We were about to call the transplant coordinator on call when Marci came over, and he immediately turned back to normal (see what effect you have on this kid, Marci? ;) ). Then on Tuesday while I was in court, my mom noticed some blood in his diaper. We definitely called then, but since we were coming in today, they wanted us to wait based on what we described. Dr. Barnes checked him out today, and they saw no immediate cause for concern about the bleeding. They also checked his ears just in case he had an ear infection, but no go on that either. Perhaps he is in the throws of teething pain. Really makes you wish the kid could talk. He's such a happy baby that the slightest difference really makes you wonder if it's "normal baby" or something more. I feel like every minute I'm just waiting for the bottom to fall out, and it's very tiring.

Not much else going on. We're just working and trying to get by each day. Gray and I both have grandparents who are not doing very well, so please keep Chum and Grandad in your prayers if you can. We posted a few new pictures and a video of Keegan in his jumper. We have our first fundraiser, a wine-tasting/bottling, at Swirll in downtown Dallas coming up on Thursday, March 27. I'm gathering the last bit of info to post on the ACTIVITIES tab, so please check back soon. DCDLA has confirmed that their golf tourney on May 22 will benefit Keegan, so please watch for more updates on that too.

Thank you to everyone for remembering Keegan. It is so touching and renews my faith so much to hear your compassion and concern for all of us. We hope you are doing well and that you remember the blessings the Lord has given each of us daily.

Thursday, February 21, 2008

Back to Work

Yesterday was my first day of taking defense court appointments. When I got home from the courthouse, I told Keegan he was the only person who could ever get me to do this. See the sacrifices I make for this kid? Crossing over to "the dark side"? ;) I heard more "are you serious?" and "not you!" yesterday than ever before in my life! In the end though, I did two state jail pleas and a reserved the jail chains in a few misdemeanor courts for the next few weeks. It wasn't bad for a little more than half of a day's work. I also had so many people offer to help in any way they could, which really touched me. Thank you to each and every one of you. It certainly gave me a new appreciation for my friends and work.

In other Keegan news, he is just surprising us each and every day. He sits up so well although he still isn't content to just sit for long. If you put your hands out in front of him, he'll lean forward onto them, and if you wait for it, he'll push himself up to stand. The newest trick in his repertoire though is twisting around on his tummy. My dad called this "pre-crawling". The other day, Keegan turned himself three-quarters of the way around in a circle. That central line may have to come out sooner than we thought! I'm not ready for him to start crawling yet!! We still have to baby-proof the house! baby's growing up.

Please keep checking for new pictures since we don't send updates for them. We'll be updating on fundraising activities soon also. Thanks so much for keeping Keegan in your prayers.

Thursday, February 14, 2008

Clinic Update

Clinic went much better yesterday than the last time Keegan was sedated for an echo. Trial and error, I suppose. He was still a bit of a mean drunk but not nearly as bad as before. Chest xray, EKG, and echo all looked fine. Labs were great - NO MED CHANGES! Yeah! He weighed in at 13.7 pounds, so just over the 5th percentile for weight. We didn't get a good height measure yesterday, so we'll have to figure that out next time. He still woke up at the end of the echo, but a little Pedialyte got him through. Then about 30 minutes later, he was out cold for two hours. He didn't even wake up for Fixler to examine him. It was like checking out a rag doll. His Valentine's outfit was a hit though. Everyone really liked it, but then again, he's cute in everything! (I'm not biased, am I?)

He is sitting up so well on his own that we stopped on the way back from the hospital and bought a "big boy stroller"! Just a lightweight regular stroller to replace the car seat frame stroller we had before. We took a little loop around the block to test it out, and Keegan was mesmerized by his new view. I guess now we'll have to have Daddy take the car seat adapter off the jogging stroller too. This kid is growing up way too fast!

That's all for now. I've got some new pictures and video to add, but Gray managed to run off with the camera battery charger. I'll get them up once the camera is charged and good to go, so keep checking in on Keegan. Thanks as always for your continued prayers and support - that's what's helping to keep Keegan healthy and strong. Hope everyone had a great Valentine's Day!

Saturday, February 9, 2008

Sleeping Champ

Just a quick post to say the sleeping champ is back! He slept from 8:30pm until 6:15am this morning with only one little peep at about 12:30am, just needing his pacifier back!! Other mornings when he's slept well, I get a litle nervous, but this morning at 6am I seriously freaked. I ran into his room, and there he was, just sleeping away. Of course, he woke up only 15 minutes later to eat. That kinda threw off his 8am bottle, but we'll figure it out. (He has to eat something at 8am to take his main anti-rejection meds, so if he keeps it up, maybe he'll start some cereal in the morning too.)

Other than that, we're just hanging in there. We have clinic on Thursday this week - Valentine's Day. He'll be sedated again this time. Gray's going to be out of town for a few days too, so please keep Keegan and I in your prayers.

We've posted some new pictures. You'll get a sneak peek at his Valentine's Day outfit for the hospital next week! We're going to go outside after lunch and enjoy the 70-degree sunshine. We hope y'all are too! Have a great weekend.

Friday, February 1, 2008

Clinic Update

Sorry it's taken a few days to get the clinic visit details up. It's been a busy few days, but everything is going well. Keegan weighed in at almost 13 pounds exactly, and he's now 23.5 inches tall (or over 3 apples tall, as his Daddy prefers to say). His chest xray looked great, and for the first time, he didn't scream bloody murder when the radiologist and I held him down. Baby steps, baby steps! His EKG was a little off, but he was laughing and moving during it. I think I'll take it being off one week since he was happy! Labs looked alright, but his white blood cell count was up again, so back on Cellcept we go. We increased his other anti-rejection medicine up a little again, but we were able to take his iron dosage down to once a day. He was a happy little camper during the entire visit until his Synagis shot (that's the $2000 one that prevents RSV). The shot has to be administered in the muscle of his thigh, and it's a pretty big needle. He cried so hard he was sweating, poor Bug.

As usual, a long day at clinic means he's cranky and doesn't sleep well for a few days. He's coming back around to his normal "good sleeper" self though. It doesn't help any of us to follow a stressful day at the hospital with no sleep, but what are you going to do about it? Not much else is going on. I turned in my applications to take some court-appointed defense work yesterday; we'll hear about that soon. Keegan's slowly coming back around to liking his cereal, and we're going to try some oatmeal-based cereal once I can get to the store. Those of you in Dallas know about the crazy winds and cold snaps we've been having, so once again Keeg & I are prisoners in the house. At least it's been sunny!

On the fundraising side of things, our dedicated campaign members are working up a storm. I think the final decision has been for a fishing tournament and possibly a wine-tasting/wine-making event. More details should be up soon, so keep checking the VOLUNTEERS tab above. You can always email or call Marci to be kept in the loop about what's going on. Lastly, the Dallas County Defense Lawyers' Association (DCDLA) has asked us to allow them to host their annual golf tournament in May in Keegan's honor. Each year, they pick a charity or deserving family/person to be the beneficiary of the golf tournament for the last 26 years. Two years ago, it was to help the son of a prosecutor who died suddenly, and last year, it benefitted the son of a local attorney who had experimental brain surgery. We are honored and very excited that they have chosen Keegan this year. I suppose it is fitting that I am now almost on "the dark side" myself! =)

Well, it sounds like the Bug has finished his nap...I can hear him talking to his Taggies Puppy in his crib. No more clinic visits until Valentine's Day. Then he will be sedated for his echo again, no fun. We wish you all a great rest of the weekend and good week next week. Take care, and thanks for keeping up with us.