Sunday, December 30, 2007

Happy New Year!

We hope everyone had a wonderful Christmas. Keegan sure did! His two big gifts were a jumper and an excerciser. He hasn't quite figured out that he can make himself jump yet, but he's getting close! He also got a high chair for those days (hopefully soon) when he starts his rice cereal. Our house is now officially a toy store, and I know this is just the beginning. It's easy to get lost in the gift-giving, but we know that our best Christmas present, of course, was a healthy, happy Keegan.

On Friday, I had to take him up to the hospital for a brief visit. Now that we're down to clinic every other week, I will have to do more maintenance with his central line (once he's ready to start crawling, he'll have to go to the OR to have that removed). Stephanie, one of the transplant coordinators, taught me how to do a few things on the off weeks. I snuck Keegan on to the scale while we were there - 11.2 pounds!! He's a gaining fool even on regular formula! He will even take 5 ounces about once or twice a day. We go to the pediatrician on January 7th, and we're going to see if he can start rice cereal. It will be a good "well-baby" visit because Dr. Fixler said we should actually start treating him as a healthy baby - amazing, huh? Gray and I were talking the other day and the odd sentence was uttered, "except for the minor detail of that heart transplant, he's a really good kid!" ;)

Tomorrow will be the last day of a whirlwind 2007. As we start a new year, we pray that Keegan continues to grow in health and happiness. We know there will be rough patches ahead, and we pray for the strength to face them with courage and energy to handle them. We are so thankful for each and every person in our lives who has helped Keegan come so far - every doctor and nurse who has cared for him, every family member and friend who has been there during the best and worst times, and every prayer that has been said to raise all of us up. Most of all, we are grateful for the love and strength of Keegan's donor, and we pray that the Lord will continue to comfort and heal his family in the new year. We wish each of you a blessed 2008 and hope that you continue with us on this journey. See ya next year!

Wednesday, December 19, 2007

Clinic Update

First of all, happy 3-month transplant anniversary to Keegan! Now on to details from clinic, we officially have a little piglet, not a "little bug"! 10.86 pounds!! Since he's in the 5th percentile and gaining weight so well, we now get to go down to the regular formula concentration. That will help on not having to buy so much!! His EKG and chest x-ray looked good. They've decided to sedate him for his next echo on 1/16 to get his heart rate down a bit and hopefully get better measurements. Medication-wise, we had a big shake-up today. His white blood cell count was up, and his H&H was down. That means we have to start back up on some of the medications we stopped before, namely two of the immunosuppressants and one of the shots. Luckily, the shot (to increase his red blood cell-making ability) can be administered through the central line in Keegan's stomach, so we don't have to have the little port in his leg that kept bleeding out. It's a little frustrating that his immune system is playing these tricks on us, but it could also be a result of his weight gain. All the change in his meds makes me nervous that we're only going to the hospital for clinic every other week now. I know it will be fine, but it's still a little nerve-wrecking. When Dr. Fixler said "see you next year" (our next visit is 1/2), I just about lost it!

Keegan was the little rock star he always is at the hospital. He brought peppermint bark candy that his Mama made to the clinic, the surgeons, and the CVICU. Everyone thought he looked so cute in his Christmas bubble, and the most often heard comment was "he's SO big!!" ;) Dr. G was so happy to see his "rolls"!

Oh, I almost forgot - the little bugger slept from 9:45pm until 4:45pm last night without a single little peep until he got hungry at the end! Amazing, huh?! I woke up in such a panic that something was wrong. Nothing wrong but a very sound sleeper, just like his earthquake-proof Daddy!

Kyra in the development office sent us the recorded clip from the radiothon. You can listen to it here. There's also a few more pictures there since we seem to have exceeded the picture limit on the "photo album" tab. We probably won't post again until Christmas since it's getting to be holiday crunch time around here. We

Friday, December 14, 2007

Miracle Network Radiothon

You may remember that I taped an interview for the Children's Miracle Network Radiothon about a month ago. The Radiothon is live on KVIL 103.7 FM here in Dallas through tomorrow. You can listen online if you're not local at www.1037litefm.com. I don't know when our interview will air today. Linda said she heard it yesterday once; they had put speaking clips into a song. Tomorrow, Gray and I are going to be on the radio live sometime between 1pm and 1:20pm. Evidently, they'll play our taped piece, and then we'll be interviewed live. Anyway, we just wanted to remind you that the Radiothon is live now. Even if you don't hear our story, there are plenty of other inspiring kids' stories there. Every dollar donated through the Miracle Network stays here in the metroplex, and it all goes directly to the kids at CMC and Cook's in Fort Worth.

Wednesday, December 12, 2007

Update

Happy 3 month birthday, Keegan!! Today's birthday gift? Double digits on the scale!! 10.12 pounds!!! YEAH!!!! By Christmas, he probably will be at double his birth weight. Slow but steady, right? His EKG and chest xray were good as usual; his echo showed good function, but when we left, they hadn't looked at the clot yet. We should get an update on that soon. They keep us there at clinic until they evaluate the functioning of his heart in case they would need to prescribe any additional medications or admit him or what not. Looking at the clot takes longer because they have to compare it to the old echos, so they usually don't tell us while we're there. He had his second to last cytogam infusion; that's the mega-drug that fights off CMV, a virus that most of us carry in our bodies with no effect except for transplants. We think that neither I nor the donor mom (babies Keegan's age would give false readings b/c of mom antibodies) were carriers, but he gets the medication just in case. Lastly, they increased his main anti-rejection medication, Prograf, by almost double. The level of the drug they want to see at this time post-transplant is around 15; his was 5.4 yesterday. They said they just can't keep up with his growth. It doesn't seem to be affecting him though, as he's showing no signs of rejection thus far. 5 would be perfect a year from now, but it needs to be higher until then. His medications are all a balancing game, which is why he needs weekly labs.

Other than that, Keegan's got a nice little case of baby acne. Someone needs to explain to him that there's no rush to be a teenager!! It should go away soon, but it's awfully painful to look at. He's sitting up better each day, and I think he finally realized that he can see the world from a pretty cool angle on his tummy. He's really pushing up and looking around. He is polishing off 4 ounces at pretty much every bottle now, and he's sleeping until about 3:30am before waking up for one. That usually means almost 6 hours for us - whew! Those new nipples really helped him start drinking more each time and not fighting us - that's the best.

Well, I better get some more things done before he wakes up again. We'll post a few new pictures soon. Thanks so much for checking in on us and continuing to pray for him. We keep praying for continued health and good reports! Have a great week, and stay warm!

Wednesday, December 5, 2007

Update

Today was clinic day, and it's already starting out to be a better week than last week. Keegan started taking 4 ounces of formula at most bottles about two days ago, and last night he slept until 3:30am!! All parents out there know exactly how nice that is. He weighed in at 9.7 pounds today. He is officially on the weight chart now, albeit in the 3rd percentile. His height dropped off from 25% to off the chart while he was in the hospital, but he's working his way back up. As he begins to eat more, I'm sure it will all come together. We went to buy the next step up in bottle nipples that allows more formula to flow through, and he is really loving it. I think he'll really take off eating more volume each day now that it isn't such hard work.

The doctors decided to leave the subcutaneous catheter out of his leg and hold his two shots until further notice. His ability to create red blood cells seemed normal, and they determined that stopping the anticoagulant for now wouldn't be the end of the world. We will watch the clot in his right atrium even closer now just in case.

That's it for now. My last day of work technically was yesterday. Those close to me know how difficult it was to leave my job. I've worked pretty constantly since I was 14, and I absolutely loved being a prosecutor. Hopefully, Keegan will continue to grow stronger and healthier so that I can return to the courtroom one day. Thanks for checking in on us!

Sunday, December 2, 2007

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,