Tuesday, May 27, 2008

Golf, Swimming, Concerts, & More!

Ok, I shouldn't overload you with this much information at a time, and I apologize for the delays in posts. Things have been quite busy here but always entertaining, to say the least. And for those of you who just can't wait to read this entry before seeing new pictures, please click away! I know my writing is enthralling, but pictures are always a bigger hit. There is certainly no shortage of new pictures there for you to see how big Keegan is. There's also a little video if you have time to watch it.

Keegan is doing pretty well. His hernia incision is completely healed and looks great. He still has some stitches from the other surgery, but those will take up to one more whole week to come out. Other than that, we are still battling his prograf levels, nothing new there. We've had two more blood draws over the last two weeks. Hopefully, we'll be able to wait it out until our next clinic visit June 18 for more tests. Keegan is eating pretty well and getting bigger (or so we think) every day. Some new fave foods include lima beans, waffles, yogurt, cottage cheese (only sometimes), and the nasty mixed-up "chicken veggie dinner" baby food. For the most part, I make his food, but he wouldn't eat my fresh chicken. I can't imagine anything nastier than pureed meat, but it's a hit with Keegan. He is talking up a storm, which keeps Gray and I rolling in laughter. His favorite word when he's chilling out seems to be "goi, goi, goi, goi", especially if he has a pacifier in his mouth. That makes it even funnier because you can see the little smirk he has on his face behind the paci.

On Thursday, the Dallas County Defense Lawyers' Association held their annual Jim Oateman Golf Tournament to raise money for Keegan. At first, it looked like it would be a rainy day, but the sun (and wind) came out, and it ended up being lovely. 91 golfers played, many came out to "drive the drink carts", and even more donated entry fees even though they couldn't play. I was able to spend some time on the course before having to drive home to pick Keegan up. I will post pictures and a total as soon as I can.

Saturday was the annual Children's Heart Transplant Picnic. It was really hot and humid, but we really enjoyed it. It was so reassuring to see other kids 10-plus years post-transplant and doing amazingly well. It will definitely help buffer those moments where we wonder what's ahead. We got to catch up with some old friends, Dr. Tia, some nurses from the NICU, Andrew Madden (100th transplant, 17 days after Keegan), and several others we met during our many clinic visits. I can't wait until next year when Keegan is running around, playing with the other kids and stuffing his face with cake!

On Monday, we went to the Arboretum to see a kids' concert by Sara Hickman. You may remember that she is the folk artist who stopped her concert in Wimberly the weekend before Keegan's transplant and asked the audience to pray for Keegan while she sang a beautiful lullaby a cappella. She was so excited to finally meet Keegan and see how well he looks. I sing one of her songs to Keegan constantly, especially during procedures. Everyone always wants to know about her because the song is so perfect for him. Again, it was hot and humid, but Keegan was a real trooper, dancing and laughing to the music.

Overall it has been a good but busy last few weeks. There's not much else coming up until our next clinic visit, but we'll do our best to keep everybody updated. We're gearing up for our big fishing tournament this fall, so stay tuned!!! Thank you so much, as always, for your continued support and prayers. Please keep Keegan's friend, Tucker, in your prayers this week. He has a follow-up at Children's tomorrow. He had open-heart surgery and still is facing an unsure road ahead. I know how powerful your prayers can be, and I know he could use them now. Thanks again, and God bless.

Thursday, May 15, 2008

Surgery Update

Keegan's surgery went well overall today. We had to be there early, so he got to go in his pjs. He was quite confused being woken up and shuttled off in the car so early. Dr. Garcia repaired the hernia and was able to confirm there was no hernia on the left side through the laproscope. He has one small incision on his hip that sealed up fine with steri-strips. We stopped his aspirin Tuesday, so we hoped he wouldn't bleed much. Not so. There was pretty significant bleeding with the circ though not enough to require giving him blood. It has stopped, but we will have to watch it closely for the next 2 to 3 days. He was his normal little happy self the entire time we were in recovery, which earned him quite a few new girlfriends. He fell asleep as soon as we were in the car on the way home, but about 10 minutes from the house he started getting fussy. They gave him a "coddle", which is a painkiller injected near the base of his spine and lasts about 4 hours. I think that had started to wear off, and he's been pretty upset since we came home, almost two hours now. He's been quiet for 10 minutes now, which is the longest since we arrived. I'm sure he feels pretty nasty with the anesthesia and painkillers wearing off.

Thank you so much for your prayers today and leading up to this surgery. Keegan's angels have kept him safe yet again. God is merciful and will bring our little miracle through these trials. We'll be sure to keep everyone updated on how everything heals. We can't wait for him to be well and procedure and line free for the next four months! There's a few new pics up too. Thanks again.

Wednesday, May 14, 2008

Clinic & Surgery Update

Clinic went pretty well today. He weighed in a little less than last month, even though he was up at the ER the other day. I think it had a little to do with the fact that he hadn't eaten due to his sedated echo. He measured at 26 inches, but I measured him the other day at a little past 27. He had a little trouble during his blood draw, lots of tears today. Still, his labs looked beautiful except for the continually low levels of immunosuppressant, so we increased that dosage again. His chest xray, EKG, and echo all looked great. He's become very wise to all the tricks to get the nasty sedation medicine down and spit about 90% of it out. Hopefully for his next echo in July we can skip the sedation and opt for a full tummy and dark room. Dr. Fixler gave him an A+ and cleared him for surgery tomorrow.

Keegan's hernia repair and circumcision are scheduled for tomorrow morning. We have to be there at 7am, yikes! We're the first case of the day; everyone always says it's better to be first than last in the surgery cue. The only thing I'm worried about at this point is getting an IV started on him. From day one we've had problems getting a good working line on the boy. It wasn't a problem with his central line in place, but that's no longer an option now. At any rate, we will update again tomorrow afternoon once we're home. Please, please, please keep Keegan in your prayers tomorrow. This is the last surgery for him until cath lab in September for the biopsy of his heart. There's always risk of infection for wounds of any kind for him, and he is still on steriods, which do make it slightly harder for the body to heal. Having these procedures out of the way will be a big load of our minds, and Keegan will be able to enjoy the rest of his summer with no impending surgeries. Still, it is always dangerous for him to go back under, and we appreciate all the good thoughts and prayers you can send his way. Your prayers and the mercy of our Lord brought him through the worst of it. Please help us get through one more time. Thank you so much for remembering and checking on our little Bug!! You are each such blessings to us.

Wednesday, May 7, 2008

First ER Trip & More Surgery

Remember how I described the pins-and-needles feeling of waiting for Keegan to get sick the first time? How I thought that once he made it through his first illness, I would feel more grounded? Yeah, well that didn't happen. BUT I'm glad to say that Keegan did make it through his first illness and is back to his happy little self again. Here's the breakdown of a very crazy and stressful last five days:

Saturday, we learned that Gray's grandfather had passed away, so we began making arrangements to go down for the funeral as a family - our first overnight trip with Keegan. I had been feeling crappy since about the Tuesday before, but I accredited it to allergies and all the nasty stuff in the air. Keegan didn't sleep well overnight, and Sunday morning I noticed a little bit of runny stuff down his nose. His temp was a little higher than his usual yet still in the normal range, and his blood pressure & heart rate were great. He was still playing and laughing, so I thought we'd just watch what happened. When I went to put him down for his morning nap, all heck broke loose. He started screaming, and over the course of his usual two-hour nap, he maybe slept 30 minutes in my arms in the rocking chair. When he woke up, we took his temp again and immediately called the transplant coordinator on call as we watched it sky-rocket to 100.5. Now, I know some moms are thinking that's no big deal, but it is for a transplant baby. When he was still crying and had a temp after a bottle, the coordinator asked us to bring him to the Children's ER. So, we loaded into the car and sped down the tollroad...we'll be SOOO happy when the Legacy Children's ER opens.

Once we were in the ER, Keegan's temperature stayed at 100.3 or below, and the fever cut-off is 100.4. His bloodwork and cultures looked great, as did an x-ray. He didn't show any signs of infection, so they started looking at his hernia as a source of his discomfort. Ultimately, our pediatrician thinks he had a 3-day virus, but his distress caused greater pressure on the hernia. So, the surgeons and transplant team think it would be safest to repair that now before it becomes a problem. He is currently scheduled for day surgery for hernia repair and circumcision next Thursday, May 15.

Keegan is doing just fine now. He had to stay with Mamie since Monday, as I started antibiotics and was a potential source of infection for him. When I go to work or run errands, I never stress too much about leaving him because I know I'll be able to see him in a few hours. He has no problems with separation anxiety yet, so he never gets upset. This time it was pretty hard knowing I couldn't be around him at all, especially with Gray gone to be with his family too. We have our next clinic visit next Wednesday with a sedated echo and the whole shebang. That should be great to ease everyone's nerves before the surgery the next day.

Thank you again for your prayers and thoughts for all of us at this time. We are truly in awe of the work God has done in our lives. Getting through these last few days has reminded us that God will not easily abandon His "little fiery one" after such a fierce fight at the beginning. We put our trust in His hands and have faith that He is carrying us through the rough patches.

Saturday, May 3, 2008

Robert Vernon Holt (Great-Granddad)

Gray's grandfather, Vernon Holt, passed away this morning at the Veteran's Home in Temple, Texas. He only saw Keegan a few times, but we will make sure Keegan remembers the man behind his middle name. Grandad will be honored with a military funeral and a special rememberance for his service at Iwo Jima during WWII. Thank you for your prayers and thoughts for his family at this time.

I wish I could figure out how to post a picture in this entry, but instead you'll have to click here.