Friday, March 28, 2008

Fundraiser at Swirll

Thank you, thank you, thank you to everyone who made Keegan's first COTA fundraiser a success last night!! We raised about $4000. Thank you first and foremost to those of you who attended. We had a fun night learning to bottle our own "Keegan's Reserve", and we hope that you will remember him and the event as you enjoy your wine. It was wonderful to see so many friends and family come out to support us. We know it was a drive for most of you, and we appreciate each of you taking the time to come. We hope you had a great time.

Thank you also to all those who donated to the event but could not attend. We appreciate you remembering Keegan and ensuring the night would be a success. We missed you but understand not all of you could make it.

Thank you to everyone who worked to organize the event, especially Marci Curry, our wonderful campaign board, and all at Swirll.

A BIG thank you to Aren, one of our wonderful nurses from Children's, who watched Keegan at home so that we could attend the fundraiser. You really made it easy to enjoy the night knowing that our Bug was in the best possible hands.

We are so grateful our first event was a success, and we are looking forward to the fishing tournament this fall. In the meantime, please remember to check in on Keegan as he continues on his journey. Thanks again, and God bless!

Sunday, March 23, 2008

Happy Easter!

We hope everyone had a glorious Easter. Keegan sure did. Some photos of the egg hunt at Mamie's house and Easter Sunday at ours are up. It was beautiful here on Saturday but a little cold on Sunday. We were able to go back to church with Keegan for the first time since flu season started though, a fitting day if you ask me. It was very comforting to be able to celebrate Mass again. Saturday we all went to my parents' house for the egg hunt that started long ago with Alex and me. Most of the plastic eggs we use have our names on them; it's probably time to get a few new ones now. Although, Keegan didn't seem to mind! Alex missed Easter with the family, as she is in China with an Ursuline group. She comes home today, and it sounds like she had a wonderful time. Sunday everyone came over here after Mass for brunch. We had a nice time, but since Gray and I were hosting, we didn't take many pictures. All in all, we had a great weekend filled with family, fun, and lots of firsts for Keegan.

This week we're busy getting ready for our first COTA fundraiser this Thursday, March 27, at Swirll in Dallas. We truly hope you can join us to celebrate Keegan's health and to support children like Keegan who are in need of a life-saving organ transplant. More details and the invitation are in the ACTIVITIES tab above.

Celebrating the resurrection of our Lord was more meaningful than ever this year. Christ suffered and died to save us from our sins and enable us to live eternally with him. Keegan reminds me every day of how great our Lord is and that He has a plan for each of us. That plan is not without suffering and sacrifice, and we will never know why children especially sometimes have to endure such pain. However, in Christ we know that there is a promise of enduring love, joy, and life. We thank Him every day for the gifts He has given us and for bearing us up when we felt that we could not go on. In Keegan, I see Christ's love for all of us. I know that He is there when we think all is lost, that He loves us despite our sins and our doubts, that faith in Him is the only thing that will save us. He has said that all things are possible through that faith. When I look at Keegan, I can't help but think of the gift of life that his donor family provided. I grieve for them, and I know that nothing can ever replace their loss. However, their love in the midst of pain is the perfect example of Christ's gift to us. In Keegan and his beautiful heart, I can see the face of Jesus. I can hear God saying, "this is the work of MY HANDS!! See, my SON is RISEN!! He LIVES for YOU!!" This Easter, I pray that each of you are blessed as we have been. I pray that you know the Lord's love for you and that you are reminded to live and trust in Him every day.

Wednesday, March 12, 2008

Clinic Update

Keegan has had a pretty rough start to his 6-month birthday. First, he had his well-child visit with Dr. Lestz on Monday. He got the ok to start his veggies and fruits, but he also had to start his vaccination schedule. Due to his rough start out in this world, he hasn't had regular vaccines like other babies. So, Monday he started at the beginning with three shots, no fun. He cannot receive live vaccines though, so he won't have quite as many to catch up on. Dr. Lestz said that he has exceeded all her expectations for meeting his developmental milestones. She called him a "motor boy", meaning he has very advanced motor skills but isn't too rushed to start his verbal skills. He sits better than most 6-month olds, and he can really move around on his tummy. Like his dad, Keegan also seems fascinated with how things work and sound. He babbles and loves to hear his own voice (although we haven't learned the meaning of "indoor voices"), but he isn't really concerned with strings of consonants, like "mamamama" or such. No big worry there though, as that doesn't always come for another month or so. Dr. Lestz still thought his head was a little flat, but nothing that would require a helmet yet. We'll reevaluate in 6 weeks when he goes in for more vaccinations. Lastly, she felt a hernia in his groin area. We had a surgeon at CMC check that out, and it seems to be very minor. The plan is to repair that during cath lab in September along with his circumcision. Other than that, he got an A++ from the pediatrician.

On Wednesday, he weighed in at 14.3 pounds at clinic. Now that the central line is gone, he had to have blood drawn like the rest of us. We learned our lesson on that one - numbing cream is your friend! Xray and EKG looked great. He was sedated for his echo again. This time at least he slept through the whole thing. I think all the screaming during labs wore him out and the sedation just topped it off. Echo looked beautiful according to Dr. Barnes. He didn't increase any meds. We dropped two medications and added a new cholesterol lowering one that will be a life-long med. It's not that he will have high cholesterol, but transplant patients are prone to coronary artery disease. This medication helps to protect against that. Long day at clinic, but good news all around. The best news is that we're once-a-month now. Again, I think I'm going to go a little nuts not knowing everything's ok, but I'm sure we'll get through just fine.

One more reminder that the first fundraiser, a wine tasting and bottling event at Swirll, is scheduled for March 27, 2008. View the official invite here. We would love to see you there, but hurry! There are only 80 tickets available!

**If you receive email updates about new journal and picture postings, please take the time to add Keegan's email address to your contact list. Due to the large number of recipients, many of the emails are coming back as "spam". If you don't receive our emails and would like to, just fill out the form in the EMAIL tab above!

Lastly, we posted some fun new pictures. We hope you get a laugh from our Bug! He certainly keeps us smiling. We wish you all a wonderful weekend and a happy St. Paddy's Day! Thanks again for your prayers and support. Talk to you soon!

Thursday, March 6, 2008

"I'm A Real Boy!"

I'm very sorry this took so long to post for those of you who have been waiting and praying patiently for today's outcome. Everything went fine; it was just a very long day. Before I go into detail, thank you so much to everyone who remembered and prayed for Keegan today. As it has every time before, your prayers pulled him through.

We were supposed to be at the hospital at 11am for 12:30pm surgery. At 8:30am this morning, we received a call asking us to be there by 10am because someone had cancelled, leaving an earlier opening for us. That's great...except we were letting Keegan steal a little bit extra sleep, and we were still in our pajamas enjoying a lazy Saturday morning on a Thursday. Those of you who know me know that getting my entire family out the door from pjs in thirty minutes is an impossibility, and yet, we made it. And early too! Of course, this was all for naught, as we didn't even get into surgery until 1pm anyway.

The line removal went really well. Dr. Garcia said it just simply pulled out and didn't even bleed after compression. We were worried she would have to cut into his leg to pull it out, but she didn't. They were also able to use the line for anesthesia before pulling it, so they didn't even need the IV line they started in his hand. We didn't even get to finish our lunch before he was finished. However, Dr. Garcia talked us out of the circumcision for now. She was extremely nervous about it due to his immunosuppression and being on steriods. Steriods severely limit the body's ability to heal wounds and can decrease the ability to clot. Even though steriods are necessary for transplant patients at the beginning, the combo is very dangerous for someone who also can't battle infection. SO, when your surgeon is visibly shaken by the idea of cutting on your son, you decide not to let her try. The new plan is to do it while he is in cath lab for his heart biopsy in September. At that point, he'll be less suppressed and will be off steriods for a month. Dr. Garcia seemed much more at ease with that, too.

It was a little unnerving to be back at CMC for surgery. The practice in day surgery is just the opposite of the CVICU. Everyone gets called back into a conference room for a briefing from the surgeon. Of course, we weren't informed of this ahead of time. If you remember from the CVICU, if it's good news, the docs come out to you in the waiting room. If it's not, you get called back to a conference room. Needless to say, when the nurse came out and asked us to come back to the conference room, I was not a happy camper. But wait, it gets better! As Gray and I are sitting there with the door open, Dr. Leonard (Keegan's cardiothoracic surgeon) comes walking around the corner. There was a brief moment of sheer panic exchanged between all three of us. The voices in our heads thinking something's seriously wrong for them to call him in, and his voice thinking something's seriously wrong for us to be sitting there. Turns out it was all just happenstance for him to walk by, but a few more gray hairs popped out nonetheless.

We didn't get home until 5pm because of the snow that decided to fall while we were at the hospital. Ya know, Texans completely flip out when the white stuff starts to come down. Keegan's doing alright, but he was pretty up and down until bedtime as expected. Gray and I are so proud of how he did today. He'll keep the dressing on for three days, and then his skin will be able to breathe for the first time in 6 months! His swimsuit came yesterday, so he's ready and raring to hit the pool!

We posted a few pictures from today and from last night when Keegan had his last kitchen bath and dressing change. There are captions on the pics to explain some of what you see. Oh, and the caption of this blog entry makes sense if you've seen Shrek 2 - all Keegan's "strings" are gone, a real boy at last. Thank you to everyone who worked on him and came to check on him today. We can never repay the wonderful people at Children's for helping us to take one more step to a normal life with our miracle boy.

Monday, March 3, 2008

Surgery

We received word today that Keegan will have his central line removed and be circumcised this Thursday, March 6, 2008, at Children's. It will be day surgery; we will not have to stay overnight. Dr. Garcia, who put the line in before we left the CVICU, will do both procedures. It will occur in the day surgery OR, but one of the cardiothoracic anesthesiologists will handle sedation and be present throughout. He will not have to have any preventative antibiotics. We're planning to go in early on Thursday, and from what the transplant coordinator could tell, he is scheduled for surgery around noon. Gray and I will be there and will update the site as things progress.

One other update, we did find out his cylex level from three weeks ago was in the moderate range, which is perfect. That's reassuring going into surgery that he's not over-suppressed.

Please keep Keegan in your prayers this week and on Thursday especially. Open wounds are a big infection risk for him, and it doesn't help that nearly all of these incision sites will be in his diaper area. Of course, he always faces troubles when he's under general anesthesia also. We are so thankful that the Lord has brought Keegan this far, and we pray every day that his angels continue to lift him up and protect him as he faces challenges like these.

Don't forget to check out details on our first fundraiser in the ACTIVITIES tab above! Hope to see you there! I wish Keegan was old enough to appreciate his first snowfall today, but I suppose that will come soon enough! Take care, and stay warm.