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,

Sunday, November 25, 2007

Update and Volunteer Meeting

Happy late Thanksgiving, y'all! We had a very nice (but cold!) Thanksgiving with so much to be grateful for this year. Each of you, your thoughts, prayers, and well wishes were especially at the top of our thanksgiving list! We would not be able to celebrate each day with our precious son without you. Keegan will unfortunately have to wait for his first turkey until next year! He is doing well and up to 8.9 pounds. No rejection, infection, or general yuckiness yet. Please pray that he continues to grow, eat, and stay healthy through this cold/flu season, as even the tiniest infection could threaten his life at this point.

I am trying to keep posts to a minimum since there is so much to transfer to the COTA website. If you've looked at it lately, you may have noticed that Mark (Gray's dad & Keegan's "Pops") has already started the painstaking process of transferring all 90+ blog entries into the "journal" section. I can't start blog entries on the COTA website until all the old ones are transferred, or they will be out of order. We are also still learning how to make the website a little more "user-friendly" and get some pictures on the site.

VOLUNTEER MEETING THIS WEDNESDAY - Please see the "activities" tab of the COTA website for more info!! This is for people interested in organizing fundraisers or heading committees for various fundraisers. It is a training session by COTA for this purpose. You do not need to attend if you want to volunteer at fundraisers or make donations. Please see the website for more info.

Thursday, November 15, 2007

Update - Please Read!

Sorry it's been so long since we updated. Now that we've gone to only once a week clinic visits, there isn't quite as much to report. Keegan did weigh in at 8 1/2 pounds yesterday!! That's a full pound in 2 weeks - he's getting to be a little chunky monkey. He is still taking about 80 to 90 mls (around 3 oz) in each bottle. The doctor said that we can consider getting rid of the middle of the night feed once he gets to around 4 oz consistently or is a little closer to the normal weight range for his age. So, for now, we have to wake him up to feed him at night. We are praying that he gets to that 4 oz mark pretty soon because he sure seems to want to sleep at night! I can't say I blame him - I want to sleep too!

All his tests looked just fine yesterday. The clot is still there, but it hasn't changed or migrated. Keegan will probably stay on the blood thinner for another month, and then, we'll reevaluate if it still appears the same. We found out that Wednesday is transplant clinic day, so we were able to meet several other transplant families. There were some kids who were relatively recent transplants and one was already 11 years post-transplant. Some have had problems, but most of the kids were very encouraging. It will be nice to get to know them and see what we have in store.

This will probably be one of the last posts we do on this website. We are painstakingly moving each blog entry, comment, and hopefully guestbook note to the COTA website. As y'all know, we are technically not supposed to be updating this one anymore, but COTA is being very understanding as we go through this process. Each one of your encouraging words and prayers is important, and we don't want to lose a single one! The COTA website will have the capability of sending emails to y'all when there is a new blog entry, picture, volunteer opportunity, or fundraising activity posted. We have to manually create the contact list however. SO, if you want to be on the update notification list for the COTA website, PLEASE EMAIL KEEGAN at keeganharrison@yahoo.com. Just send an email to him from the email address where you would like to receive updates. If you would like to write a message to Keegan, we will be making a scrapbook for him of all of them (at some point!).

Thanks so much for keeping up with Keegan and praying for him. He may not be able to say it yet himself, but he surely knows how much he is loved and cared for by each of you.

Friday, November 9, 2007

Hitting His Stride

Keegan weighed in at 8lbs 3 oz yesterday at the hospital! The dietician said he's "making a beeline" for the normal weight/height curve. They also approved a feed on demand schedule, which is more appropriate for his age. Since he has to take meds five times a day at specific times, it's easier to do that with a feed. So now, he'll be taking 6 bottles a day with 3 oz or more in each, rather than 8 bottles a day. Most importantly for us, that means we get to sleep a little longer at night! Yeah! He'll probably give up one night feed pretty soon since he sleeps so well at night. We've also been approved to do "tummy time" now. Keegan had to wait 5-6 weeks after closing his chest to make sure his sternum was healed. He actually doesn't mind it too much and is turning his head and lifting up several times each session. He can even squirm his way across the mat if he feels like it.

The best news is that we only go to the hospital once a week now! He will get an echo again next Wednesday, so we'll see what they say about the clot. Other than that, we're just living our "normal baby" routine, even if we are kinda quarantined. We are so thankful to God for the opportunity to be somewhat normal! Please keep praying for Keegan's continued progress and growth. Your prayers mean so much to us. We are so grateful for each one of you

Monday, November 5, 2007

Update

Keegan weighed in at 7lbs 10oz at clinic today. Dr. Fixler said to stop regulating his formula and just let him eat. Easy to say when you don't have to clean up the spit-ups, but we'll try it. They left him off the meds they reduced last week, which was good. The echo from last week didn't show the clot, so we're not sure if it just didn't get a good view or if it's gone. It would be a little concerning if it was completely gone because that would mean it may have "migrated" somewhere else. He'll have another echo in a few weeks, and we'll see what happens then.

We visited the ICU - social visits only! It was nice to see some of his nurses, and they all seemed so happy to see him out and about. No one can believe how great he looks. I'm sure Keegan was a little confused to see a mouth and nose on most of them since he was used to everyone wearing a mask! That's all for today. Hope everyone had a good start to their week!

Sunday, November 4, 2007

Weekend Update

This was a pretty good weekend for our Bug. His godfather, Teague, came in from New York so he could meet Keegan and be there for his baptismal rites. Father Postell baptized Keegan at Children's the day he was born, but Friday night, Father went through the rites so that Keegan would have a formal christening. It was nice to do one more "normal baby" thing. He also got a visit from the Eisenbeck family today as they passed through on their way back to Nashville. Keegan whispered to us that he'd like to go to Nashville too, just like his parents. ;)

The weather here was beautiful this weekend, so we took as many walks as we could to enjoy it. Keegan really seems to like being outside, and we can't help but think that the fresh air is good for him. He has been taking a little over 2 ounces on most of his feeds this weekend, so we're hoping he will be close to 8 pounds tomorrow at clinic. His little arms and legs are starting to fill out, and he finally has outgrown the preemie diapers. The last one received quite the unceremonious farewell from Keegan, if you know what I mean!

We have posted a link to the new COTA website while we work on transferring to it. Obviously, there is a lot of content to move, and it's not set up quite as nicely as this one. Most of what is posted at the moment are "test" posts. The good thing is that the account is set up, so donations can be made now.

Last week of two clinic visits a week! More later!

Friday, November 2, 2007

Update

Clinic yesterday was very long and tiring, but everything was okay. Keegan weighed in at 7lbs 8 oz and almost 20 inches long. His EKG and chest x-ray were good. We didn't get an official report on the echo, but it sounded like there was no change from two weeks ago. His white blood cell count was pretty low, so they backed off a few of his medications. What the doctors think may be happening is that his immune system is adapting to the suppressed state and staying that way. Since his immune system is so immature, it may be recognizing the suppression as "normal" whereas an adult's system would require constant medical suppression. That means he may not need as many meds to suppress his system and eventually may not need as much suppression to ward off rejection. His body may not be as apt to recognize the new heart as foreign. This is all speculation of course. We'll just have to wait and see.

In other news, we are trying to transition this site over to the new COTA site, so bear with us as we figure it out.

Please continue to pray that Keegan will eat and grow to become stronger every day. We are praying that he will continue to not need as much medications and that the doctors are able to find a happy medium with the meds so that he doesn't go into rejection but is not so suppressed that he is constantly battling infection. Thank you for your continued showing of love, support, and prayer.

Monday, October 29, 2007

1 Whole Kilo

Keegan weighed in at a whopping 7 lbs 4 oz today at clinic!! That's a 1 kilogram more than he was when we were discharged from the hospital. He's still "below the curve" weight-wise, but he's getting there! His EKG and chest x-ray looked good today. They cut down the amount of the steroid he has been taking, which is great because it tastes like paint thinner. I speak from experience because I tasted all of his meds. Don't laugh ... I had to know what I was shoving down my son's throat every day! Most of them aren't bad, but the prednisone - wow. I put a dot, a tiny droplet, on my hand, licked it, and gagged. I had to run to the fridge for some water over a little dot of the stuff. Poor guy. Anyway, he only has to take it once a day now, so that's a big step in his day-to-day even if it's not a medical step forward.

He still is not on the last anti-rejection medication, and I got a little clarification as to why today. He received a few doses of it when he was in the hospital, and it's doing what it is supposed to do, namely reduce the amount of a specific type of white blood cells. So, as long as it is working, he doesn't have to take more. Dr. Fixler said today this is actually a good thing. They did increase his level of the other anti-rejection med, tacrolimus, again today. As far as we've been told, that's normal, and we're stepping it up slowly to protect his kidneys. For those of you who remember the "kidney scare" after transplant, his kidneys are doing just fine for now. He's still on the diuretic, but that's more of a preventative measure than anything.

On a fun note, Keegan wore his Halloween costume to clinic today since he won't go again until after the holiday. He was a chili pepper, and a mighty cute one if I do say so myself. We posted a few pics, and we'll definitely take more on Wednesday. Everyone at the hospital thought he was a very convincing (and adorable) little pepper! The other cool thing that happened today was that Keegan met Father Deeves when we stopped at Ursuline to drop something off for his Aunt Alex. Father Deeves had a heart transplant 18 years ago, which was performed by Dr. Steves Ring. Dr. Ring is still technically the head of pediatric heart transplant at Children's and for adults at UT Southwestern. He began the program at Children's 20 years ago. Dr. Ring followed and consulted on Keegan's case but didn't assist in the surgery. Father Deeves has been praying for Keegan at daily Mass since he was born and was so happy to meet the youngest and smallest heart transplant recipient. There's a picture of the two of them with Alex on the photo page.

Sunday, October 28, 2007

Weekend Update

Keegan's still working on taking all of his bottles. He'll do really well one day and then not so great the next. He's been pretty fussy this weekend, but we have our good moments. As long as he keeps gaining weight, we'll be happy.

Tomorrow is clinic again. We have two more weeks of biweekly hospital visits. Then we go down to weekly visits until the beginning of January, when they go to every other week. By March, we'll be down to once a month. We have the standard EKG, blood work, and chest x-ray tomorrow and then a full echo on Thursday again. We'll give you an update tomorrow afternoon when we get back.

Hope everyone had a great weekend and enjoyed the nice weather. Thanks for your thoughts and prayers.

Thursday, October 25, 2007

Update

See how powerful prayer is? Keegan weighed in at 6 lbs 8 oz today! Dr. Fixler and transplant coordinator Susan didn't seem too worried about the rate of weight gain yet; they are more focused on him just gaining and growing. He still hasn't started the third anti-rejection medication yet. All it means is that the levels of one particular type of white blood cells are low enough on it's own right now, so they don't need to further suppress it. That's not necessarily good or bad according to the doctors; it just is what it is. They increased the dose of a different anti-rejection med just a bit today. They have been slowly increasing it because it can be hard on his kidneys.

He had a rough day of being poked and prodded today, but overall he handled it like a big boy. After clinic, we went to the CMC Development office and taped a radio segment for the Children's Miracle Network phonathon that will air on 103.7 this December 13-15. Gene and Julie from the morning show interviewed me and my mom today. They will do a live interview with Gray during the phonathon. We'll be sure to remind y'all before it airs. It was pretty quick, so I wasn't able to get any pictures. Thanks to Kyra at the development office for asking us to participate in it.

Two prayer requests for others: First, my grandfather, Max Huffman, had surgery this morning to remove some kidney stones. He is currently fighting an infection and awaiting a second surgery for an enlarged prostate. Some of you may remember that he is the first "miracle" in our family, having survived a brain abcess that statistically has a 100% mortality rate. Please pray that he recovers from this infection and has a successful second surgery. Lastly, please also remember another one of Keegan's ICU "friends", Tucker. You can learn more about Tucker on his website under our "links" section. Tucker went to the 8th floor this week, but he is having respiratory problems. We hope that you will remember Tucker in your prayers and that he will overcome this hurdle quickly and continue to improve. Thanks so much.

Wednesday, October 24, 2007

COTA Update

I just wanted to post a quick note that we have officially started our account through the Children's Organ Transplant Association or COTA. This is the group that will set up a tax sheltered account for fundraising for Keegan's transplant-related expenses. Money donated to Keegan's campaign will be available to him for the rest of his life for things such as prescription co-pays, deductibles, hospital admissions, routine procedures like echos, x-rays and biopsies, and more. Donations will be managed by a trustee, so it is assured that the money is used for transplant needs, not clothes or a vacation (although we could really use one about now!). All donations go 100% to Keegan's needs; COTA does not take any percentage for their work. You can visit www.cota.org for more info about the organization.

We have a few more steps to go through to get our campaign actually started, but we will probably be able to accept simple donations as early as the beginning of November. We have had a lot of good fundraising suggestions from y'all, and we'll start organizing those soon. Once the campaign is set up, this website will be merged with our COTA site. Hopefully that will be a seamless transition for all of Keegan's loyal prayer buddies!

On another note, we go to the hospital for our second clinic of the week tomorrow. We will also tape our segment for the Children's Miracle Network phonathon which will air in December. Everything health-wise has been looking good lately, but the doctors are really watching his weight gain. Keegan is 6 weeks old today and hasn't officially gained a full pound yet (maybe by tomorrow he will). Obviously, most 6 week olds have nearly doubled their birth weight or more. He truly finishes about 4 of his 8 two-ounce bottles a day. Please pray that Keegan starts really eating well and gaining weight. The last thing we want is to have the ng tube back. We'll let you know what the doctors say tomorrow, and hopefully I will be able to get a few pics of the phonathon taping. Thanks again for your support and prayers.

Monday, October 22, 2007

Gaining Ground

Sounds like Maddie and Keegan had a good doctors visit this morning. We are still on the every Monday and Thursday for our transplant clinic routine. Anyway, Keegan went for blood labs, a chest x-ray, and an EKG. The doctors seem pleased with Keegan's progress. He weighted in at a whopping 6lbs 3oz. That is up by 3 oz since last Thursday. They are pleased with the fact that he is gaining but now they would like to see him keep gaining. Apparently Keegan is at the bottom of the normal weight range for his age. They would like to see him continue to pack on the pounds.

His labs came back alright. They did up his magnesium supplement today and they also upped the amount of Prograf (an immune suppressant) that he is given. They will continue to slowly raise the level of the Prgraf until they get him into the range he needs to be. According to the labs he still doesn't need to be on the other immune suppressant called Cellcept. All total it sounds like we are on 10 drugs and 2 supplements.

Maddie and I are doing well. Maddie spends most of her days trying to bring some order to Keegan's hectic schedule. It sounds like today she was on the phone with three different pharmacies trying to find the best prices or the right kinds of medications. I am back at work. This is the start of my second week back and it is already very busy. I just want to pass along a thanks for everyone who has been checking in on the site, calling or emailing us. We really appreciate all the support and love you have shown our families.

...Until the next update...

Gray

Friday, October 19, 2007

We Made it a Week

We survived the first week at home! I'm not sure if it's more impressive that Keegan survived it or that we've survived it. I'll post more tomorrow. I need to go lie down for a bit since I have to wake up in an hour and a half to feed him again. We're probably the only parents in the world that don't mind giving a bottle to our baby in the middle of the night...as long as it's a bottle and not a tube, we're very happy. The ng tube is out for good. He's sucking his bottles dry, and we're going to slowly start increasing the volume. Keegan weighed in at a whopping 6 pounds at clinic on Thursday. Hopefully he'll be taking close to 2 ounces with each bottle by the end of the weekend. Without the tube, you wouldn't know he had even been sick if he has clothes on. He will keep the central line (IV port) for about 14 more weeks and the subcutaneous catheter for giving him shots for another 4 to 6 weeks.

Ok, more tomorrow. I mean it this time. Sorry we've lagged in posts, but take it as a good sign! Thank you for continuing to lift Keegan up in prayer.

Tuesday, October 16, 2007

Pluggin' Along

Sorry it's been so long since we updated. Bringing any new baby home is stressful, but bringing a transplant baby home is sheer craziness. Keegan is doing remarkably well. We went to the hospital Monday for his first "clinic" appointment. He will go back for bloodwork, EKGs, x-rays, echos, and more every Monday and Thursday until the beginning of November. Then, he will go once a week, then once every other week, until he gets to monthly visits by spring of next year. Dr. Fixler said Keegan was looking great. They will probably officially take out his "ng" tube by Thursday if all is going well. For the most part, Keegan is taking all his feeds by bottle now and all his meds by mouth. We have only used the tube once since Saturday. He extracted it himself twice over the weekend, and I had to sink it again. If you thought changing diapers was bad, try threading a tube down your child's throat as he gags and cries bloody murder!

We seem to be getting used to his medication and feeding schedule. It is rather overwhelming still. It's also very stressful wondering if you've washed your hands enough or who needs to wear a mask still. When we go out of the house, Keegan also has to wear a mask, which he hates. I'm sure he'll get used to it soon.

Tomorrow is Keegan's first "well child" visit with his pediatrician. Sure puts a new spin on that phrase, huh? Luckily, his pediatrician is best friends with one of the transplant cardiologists. He'll be in good hands. Thursday at the hospital we will also meet with the Board of Trustees to share Keegan's story in hopes of securing more money for the transplant program. Next week, Keegan will tape a segament to run during the Children's Miracle Network phonathon. We'll have more info on that as it becomes available.

Thanks again for praying with us during this time. We really do appreciate it. More photos tomorrow!

Sunday, October 14, 2007

Home Again Home Again

Good morning everyone…

Sorry that the updates have taken so long. It has been a little bit of a shock to Maddie and I to come home. We have really had to adjust our timing on everything since we walked in the door on Friday night. Now that we are able to fall into a little bit better of a routine we will be better about posting blogs and photos. Thank you for you understanding. I know there is a large following that checks this so often for updates. We appreciate it.

Friday was kind of a crazy day for everyone. There were a lot of last minute things to do at the hospital before we could leave. The doctors were making last minute schedules changes to his weekend medication list. They were also spending time going through some of the different equipment we would have to use once we returned to the house. Most everything that would be delivered later to the house would be different from what we had seen or used at the hospital.

As we were trying to fit everything in that afternoon the new media made a surprise visit. We certainly didn’t mind at all and enjoyed doing what ever we could to put a good word in for the hospital and the transplant program. Due to some local happenings (a very long hostage stand off that did not come even close to a happy ending) in the Dallas area, the story didn’t receive much of any airtime. CBS11/TXA21 carried the story on the 4:30, 6, & 10 news. I even heard that CBS radio talked about it on the air. We really do appreciate all those who made this a possibility.

After a lengthy bit of paper work we where finally able to be discharged from the hospital. We didn’t leave the building though until we got a chance to bring Keegan down for a “social” visit. We wanted Keegan to say hello to all those men an women in the CV ICU that helped him get the this point. We were greeted by Shelly, Marilee, Jim, Nancy, and Delaney. We wish that we would have been able to see other who were not on duty like Brian, Holly, Katie, Joe, Don, and Kevin. Not to worry though, Keegan will be at the hospital two times a week for a few months for check ups. We will have plenty of opportunities to check in with our new friends (and heroes). Anyway, this visit to the CV ICU before we left was really a treat and a highlight of the whole stay.

After our visit to ICU we loaded up the Tahoe to get home. Our timing wasn’t too good though. We hit rush hour traffic perfectly. This didn’t help us either. We were expecting an equipment delivery while we were still sitting in traffic. Luckily and unluckily, the delivery driver hadn’t made it to the house by the time we got home. The unlucky part was we were waiting for some equipment to help complete Keegan’s feeding. Lucky for us, Maddie tried to use a normal bottle for Keegan, and he finished almost all of it in the car. That was a big first for him.

When we got home we were surprised by a “Welcome Home Keegan” sign and fresh flowers in the house. Keegan’s grandparents had prepared a meal for us and had it waiting. Some of our neighbors, Brian & Chi Chi and Kelly & Carl, had taken the time to fill our refrigerator up with fresh food. It was all a very unexpected but very nice surprise. After we finished eating is when things started getting crazy. We had to sort through the huge medical delivery to find all the little pieces to get Keegan’s medicines ready. Keegan gets almost 15 different medicines over 6 different intervals of the day. We usually give Keegan a bottle every three hours too. We try to time his medications with his feedings which can help and hurt the situation. Friday night could be considered on the tougher side for receiving medication. We had a lot of trouble that night keeping his dinner down after he took them all. It made for a long night, especially since the wrong feeding pump for his “ng” tube was delivered. He’s been taking bottles like a champ, and we’ve been “gravity feeding” through the tube if he doesn’t finish them, which seems to be less and less. I guess he just didn’t like the hospital bottles!

he next morning we were glad that Keegan had slept well. Once we had day light it was a good chance for us to begin sorting through the mess that we had brought back with us from the hospital. Keegan was also able to start enjoying some of the comforts of home. He really likes the automatic swing that we have for him. He just sits there and stares at the stuffed bees that hang down from it. He also likes his basinet that we have in our room. Once we lay him down in that he passes out. This allows Mama to keep an eye on him every time he twitches.

On a very important note, Keegan was able to meet his older brother Rusty (our Brittany spaniel). We were a little worried how their first meeting would go. It turned out fine. Since we have been in of the hospital, Rusty hasn’t spent a single night at home. He arrived at our house about 30 minutes before we did. It was almost like we were introducing him to a completely new environment. We let Rusty sniff Keegan’s foot in the front yard before we even came into the house. The rest of the first night Rusty spent in an opposite room from Keegan. I know the crying bothers him a lot. If Keegan really gets into a crying fit Rusty will come into the room and check to see if he can “help.” Since then Rusty will come around once in a while and sniff Keegan’s foot and kind of walk away. Maddie and I are over all very pleased on how well Rusty is taking this.

As for now Maddie and I are still just trying to chip away at getting things organized and setting up a routine for Keegan. We are also taking lots of pictures which I will continue to post on here for every one to check out. Stay tuned and we will make sure we keep everyone apprised of Keegan’s status on the blog.

Maddie and I would like to extend a special thanks to everyone who showed concern and support. I know that the love that was directed Keegan’s way led to his recovery. We would also like to extend a heart felt thanks to Children’s Medical Center of Dallas. Without their extremely talented group of doctors and nurses we would not be able to enjoy he time we were spending with our son today. I would also like to thank our friends and family. They have been so wonderful in helping us keep our day to day lives together by taking care of so many big and little things.

Well… it is back to work for me. I have a diaper genie to empty, and I also need to get ready for the next feeding. Stay tuned..

Thanks, Gray

Friday, October 12, 2007

We're Here...Sort of

Ok, we didn't get discharged until after 6pm. No one ever accused hospitals of being quick on the draw when it comes to that type of thing. Of course, we had to make a trip to the ICU to say good-bye also. We made a deal with the nurses there to visit often (for social reasons only of course)! We are home, and Keegan seems to like it so far. Rusty isn't quite so sure! We are in a state of semi-chaos...I'm sure mass chaos will set in around 3am! All those who know me will know that chaos and I don't get along very well. I only thought I was organized until I ended up with boxes, literally large moving sized boxes, of medications and equipment. We've been home for 5 hours and have already called the transplant team once (slight spitting up of the meds issue). More tomorrow and photos when we can actually locate the camera again! Please let us know if you caught the newscasts; we only saw Channel 11.

Hey...Keegan is Famous!

The hospital staff arranged to have channels 4 (Fox), 5 (NBS), and 11(CBS) come and meet Keegan on the day that he went home. They came to the room and interviewed us for the afternoon and evening news. I will post more and add links when I get them. In the meantime I will adds some pictures from it.

Gray

Green Light for Home

How ironic that we'll be going home after exactly 1 month! What a birthday present for our little bug!

We got the green light from Dr. Fixler this morning to make the trip. They hooked all his monitors up again and let him sit in his car seat for about an hour. He fussed quite a bit for about 10 minutes then promptly fell asleep. His chest x-ray and EKG looked good this morning. His white blood cell count looks so good that he'll have one less medication over the weekend until his next set of labs. We come back to the hospital on Mondays and Thursdays for another few months for labs, x-rays, and more. Next Thursday, he'll meet the Board of Trustees and try to impress them into giving more money to the heart transplant program.

By the time we get everything set, our medications gathered, and all the doctors into see him, it will be late afternoon before we're on the way back to Plano. We'll be sure to post some new pictures once we get there. Thanks again to all of the surgeons, doctors, nurses, and staff for getting Keegan well enough to be going home after just one month of life and three weeks post-transplant. Also thanks to every one of you for following us through this difficult time. As we've said many times before, this is just the first hurdle in a long journey, and we'll be honored if you continue to follow us and pray with us as we travel it. Next post from home sweet home!

Thursday, October 11, 2007

One More Day in the Hospital

Keegan is getting closer and closer to making the trip home. He has taken THREE bottles of 10ccs today and will try to keep increasing that overnight. He is also taking the rest of his "ng" tube feeds over 1 hour and 30 minutes instead of 2 hours. Gray and I passed our test, and now we are just learning the rest of our medication prep. Gray has the last night watch tonight. Please keep praying for continued improvement for Keegan and that Gray and I can handle everything once we are home for good. We hope we can handle it all on our own! More tomorrow!

Wednesday, October 10, 2007

Lookin' Good

Well, Keegan's had a pretty good day. He started with a chest x-ray and complete echo. His chest is clear. The echo showed his heart's function is great, and the clot in his right atrium hasn't changed in the last week. We would love to report that the clot has gotten smaller, but staying the same is good too. It hasn't grown. Keegan will remain on a blood thinner for the next 6 weeks or so to prevent it from getting bigger. We are hoping his body will absorb the rest of it slowly.

We've not made much progress on the bottle end. He's now trying the bottle with each feed (only getting about 5ml at a time), and he's up to 45ml per feeding. He "eats" every 3 hours through a syringe that pumps the formula through his ng tube directly into his stomach over a period of 2 hours (so he eats for 2 and then waits an hour before starting the next). We'll stay at that amount and slowly decrease the time each feed takes. Hopefully he will start to eat more from the bottle as the time of each feed decreases, since he will start to actually feel hungry. He is now also taking all of his medications by mouth - a big improvement since some of them taste awful!

Today was the first full day where Gray and I were responsible for Keegan's feedings and medications. We've finally got a workable schedule for both. Keegan will have 11 medications each day, given 6 times a day. After about 1 year, he will be down to 3 or 4 maintenance meds which he will take at least 2x a day for the rest of his life. Some of them are immunosuppressants; some prevent infection, and several others for a variety of things. It's quite overwhelming for us. Imagine how it must be for him!

Tomorrow we take our "test" about transplantation. If we pass, then we're still on schedule to go home Friday!! It's important to go home as soon as it's reasonable because the risk of infection increases the longer we stay in the hospital. Right now, Keegan and Daddy are passed out on the couch (I snapped a pic and will post soon). It's been hard to keep either of them awake today! I think Gray planned it so that Keegan and I will be up all night! Please keep praying for continued tolerance of his feeds and meds so that we can go home Friday. I think we can all agree it's time for Keegan to go home! Have a good night, y'all.

Tuesday, October 9, 2007

Yumm...Formula!

Keegan and I had a quiet but restless night. As many of you know, his ICU room window was covered by construction, so we literally were in a "cave". So, Keegan is now having to learn the difference between day and night - not an easy transition. He's also learning "hungry" and "full". These things should help him develop a better sleep pattern.

Today, he took 8 mililiters of formula by a bottle! That's pretty good for someone who just had his first taste of food yesterday. He then has to take the remaining 32 mililiters through the ng tube. He's working on it though. It's hard to like drinking when there's a tube down the back of your throat. Gray and I are working on mastering what meds Keegan is on and how to administer them. Everyone is still talking about going home on Friday, so we'll see what happens.

Thanks for all your prayers. They're working!!

Monday, October 8, 2007

New Room Info

Alrighty, we have a bit of new info about our new room here on 8. Keegan's room number is C8255 (or "room 55"). I will update the main page with visiting info soon. Visiting hours are the same as before - 8am to 8pm. Gray and I do not have to wear masks and gloves anymore, but visitors and hospital staff do. We can now use cell phones in the room, so please let us know if you are planning to visit. There is no longer a waiting area to go through, but there is a main desk. The staff there can help you find us.

The transplant team told us this morning that they are hoping to have us home by Friday!! Keegan has to tolerate his feeds this week, and we have to learn his medications and other transplant info. After that, we're outta here!! That's a lofty goal, so please pray that by Friday night Keegan is snug as a bug in his own home. More info and pics soon.

We've Moved

Maddie just called. They are on the 8th floor. I am on my way over there now. I will fill you all in on the details and post some pictures once I get the chance. Great news though... we are finally out of the ICU and on the cardiac recovery floor.

Gray

Update

Maddie just called me to let me know that Keegan's doctor has signed the order to transfer him up to the 8th floor. It sounds like the move will happen before the care conference. Maddie and I will still meet with the doctors and staff this afternoon. Anyway, I will make sure everyone knows that he has moved once he is actually up there.

Thanks, Gray

Sunday, October 7, 2007

Update

Just spoke with Maddie and things seem to still be progressing. I had him last night and we did just fine. He was pretty alert for most of the evening and when he did sleep he could still manage to set the little alarms off. None of it was anything to worry about, the way some of the monitoring equipment was set, if he moved or twitched at all the alarm would go off. I was able to hold him for a very long while. It has become apparent that Keegan has really figured out the pacifier. That is good news because that takes him that much closer to bottle feeding. It can be bad news because he cries every time it falls out of his mouth. After talking to Maddie she told me that because of that progress, they have moved Keegan's feeding tube up from its placement in the small intestines to right in his stomach. Now they will begin feeding him once over 3 hours into his stomach so they can begin to get him use to that. I guess the next step is to begin working with a bottle.

Keep praying... from the way everyone has been talking that are almost for sure that he is on his way to the 8th floor on Monday. We will know for sure when they evaluate him in the morning.

Take care, Gray

Saturday, October 6, 2007

Saturday Update

Keegan is resting up today because (drum roll please...) he might get moved to the recovery floor on Monday!! YEAH!! If he continues to tolerate his feeds through the NG tube and has an otherwise quiet weekend, we'll be movin' on up! We will try to post some pictures tonight also because they have let us put some clothes on him today too. He's not naked anymore! Please pray that this weekend is a good one of rest and that Monday we are writing from our new room. We'll keep you updated!

We can't say it enough - THANK YOU, THANK YOU, THANK YOU!! To all of our friends and family for your love, prayers, and support. To all of those we don't know who are following Keegan and praying just as hard. To each of his surgeons for their tireless work and dedication to Keegan's health. To every nurse and tech that has spent countless hours with us, watching, caring, and encouraging not only Keegan but Gray and I also. To everyone at Children's that has prayed and supported us during this time. To every other family in the CVICU whom we have come to know, whom we have cried with, prayed with, and celebrated with, that you will continue to grow in health and strength. And to our Lord, without whom we wouldn't be able to sit here now and thank the beautiful people with whom He has blessed us, especially our little miracle, Keegan. Thank you, and I hope you will keep praying with us as we continue down this road.

Friday, October 5, 2007

Update

It has been a quiet rest of the day. Keegan has just been resting... mainly in his mother's arms. The speech therapist, Holly, came by and worked with Keegan for a little while. He hasn't taken the pacifier yet but he will suck on a pinkie. I guess even the smallest pacifier they have must be too big. The therapist said that he has strong lips and a strong tongue. His gag reflex is also very delayed. These are all very good signs that he shouldn't have much trouble taking a bottle. Each day they try a little more with him and then when he is quiet and awake Maddie will work with him too.

Well... that is all the news that is fit to print right now. I will get back on and update later. Thank you for checking in.

Gray

Update

I just got word from Maddie that everything went well with his little procedure this morning. He came out of surgery about a half hour ago. They had taken out the ventilator in the OR. When they get back to the room they will then focus on removing the old femoral sensing line. It has to be removed last since they were using that line to administer the sedation. They also want to verify by x-ray that the new line is where it is supposed to be.

Thanks you for checking the Blog. I will update it when I get some more news.

Thanks, Gray

Thursday, October 4, 2007

Update

Hello everyone. Today was another good day. It was a good day because it was really a resting day. They didn't really do anything dramatic or new to Keegan today. He started back on the formula through his nose tube. He also got introduced to his speech therapist who is going to help Keegan learn to eat from a bottle.

Tomorrow sounds like a little bit busier of a day. They have decide that they are going to remove the femoral veinous sensing line from his leg. They are then going to install a new IV in his other leg. This new IV will be used from now on to give him most of his medications. There is a better than average chance that this line will stay in even after he leaves the hospital. This will allow the doctors to give Keegan medicine without poking him each time. In order to remove the old line and install the new one Keegan will make yet another trip to the OR. He will also have to be put back on the ventilator again. They fully anticipate taking him back off the ventilator as soon as the surgery is over. This is all fairly routine for the doctors, and it sounds like there is very little to no risk to Keegan. Please keep him in your thoughts and prayers anyway.

On a funnier side I got to hear Keegan's singing voice today. I was commenting to Maddie how cute his little newborn cry was. I was glad it hadn't turned into the blood curdling scream yet. What I didn't realize is that when he was upset this morning he had figured out how to turn the volume and intensity up. As soon as I made that comment to Maddie he cranked up the volume and had a pretty good fit. Needless to say I got blamed for that one. Leave it to the kid to get his shots in right on cue. The crying is a good sign for his lung capcity though. To be able to scream that loud you have to be able to hold your breath and not pass out.

I posted some more pictures... Please enjoy and have a good evening!

Gray

Wednesday, October 3, 2007

What a great day it was!

Keegan is tube free from his chest area. Yeaaahhh!

Keegan was able to have his chest drain and pacing wires taken out today. That was great news. On top of that he did really well when they took him off the ventilator. They didn't need to put him back on the SiPAP but instead skipped him right over to the nasal canuals. He is doing so well on the nasal canuals that they have already begun weaning the oxygen off that too. Great huh?

So right now he is in his mama's arms at the hospital. You can see his whole face and a cleaned off chest. It really does make you feel good. Next up to bat will be working with a speech therapist on teach Keegan to take a bottle. If he can show signs of taken some food through a bottle then it sounds like we will be on our way to the recovery floor. It is all up to Keegan now to show how he can take to this new thing known as eating. I'll post some pictures... enjoy.

Gray

Update

I just got word from Maddie that they took out his heart pacing wires. These wires are used if Keegan's heart had ever developed an arrhythmia and they needed to try to correct it with a pace maker. These little wires were just stuck into his little heart and they removed them by simply pulling them out of his chest. (Sounds like fun huh?) You can see them in some of the pictures. They kept them in glass test tubes and they look a lot like little sticks of TNT with wires sticking out of them (when you see a chest x-ray they really look like TNT).

It sounds like they will be ready to pull his ventilator in about another half hour. I will let you know how that goes once I hear. Thanks!

Gray

Update

Good Afternoon Everyone, I am at home now trying to get some work done but I got word from Maddie that things are going well there this morning. They have been weaning him off the ventilator and are still planning on removing the ventilator tube later today. I know they are waiting on some lab results before they give the final ok. They think that there is a chance that Keegan will not have to go back on the SiPAP machine after he is off the ventilator. They are thinking that maybe he would be ready for the nose cannula that is feeding him constant air/oxygen. We will see about that soon. Once the ventilator is out they will also restart the feeding. They have been giving him a few cc of food down his NG tube. The chest drain that they installed yesterday hasn’t really been leaking much at all. They had planed on taking it out today but instead I think they will wait to do that tomorrow. In the meantime they feel like they have gotten most all the fluid that had gathered around Keegan’s right lung off. Once he has the drain removed we will be able to go back to holding him. In the meantime it sounds like he had a good night with his Grandmother Martha. Tonight Maddie has the night shift.

Gray

Tuesday, October 2, 2007

Update

Keegan did have a small procedure preformed this afternoon. They took him into the OR around lunch time and removed him PD catheter. They also added a drain that would remove some excess fluid that had gathered around his right lung. After talking to Maddie it sounds like everything went as planned. The PD catheter came out and there were no signs of infection. They were able to drain 25 cc of fluid off the lung but they will more than likely leave the drain in until tomorrow to make sure they got all the fluid. During the procedure they had to put Keegan back on the ventilator. They expect that they will be able to get him off that sometime tonight.

I only had a minute to get this blog in so you will have to excuse me. I will update again when I get the chance. In the meantime know that the little guys is doing fine. Also... I got to hold him for like 2.5 hrs this morning. We watched sports center and Seinfeld together... ahhh, father and son bonding.

Gray

Update

Keegan is still on the SiPAP, but his lungs are very slowly starting to work better and better. He is still working on getting rid of the last amount of swelling. Some of it has settled around his lungs, so the doctors are watching that very carefully. He's off pain and sedation completely now. Fortunately, we have been able to hold him for a little bit each day, and we can swaddle him now. Both seem to help him settle a bit. He's most fussy when his diaper is wet; I know that's not a revelation per se, but when you're on diuretics to make you get rid of swelling, it makes for even more wet diapers than usual. Gray had the watch last night, and he got a quick review of how careful you have to be with little boys and diaper changes!

Today is going to be another day of very slow watching and waiting. The only other thing that may happen is that he may get the PD catheter out finally. We'll let you know how that goes.

We've been in touch with COTA, the transplant fundraising organization. They are setting up our account, and then we can really get going on that front. We'll probably be posting something soon about what you can do to help. Thanks again for your prayers more than anything. Even though things are slowing down, Keegan is still very critical, and your support is helping him day by day.

Monday, October 1, 2007

Update

Keegan had a busy night last night. Around 11pm they decided that everything looked right for extebating him (removing him from the ventilator). He did pretty well after they removed it. A chest x-ray showed that one of his lungs wasn't quite filling enough so they put him on a constant oxygen flow through little nose cannula. That worked for a while but wasn't really forcing him to exercise his lungs enough. They finally settled on a different machine. Some of you might be familiar with it. The machine is called a SiPAP respiratory machine. It looks and sounds a lot like a CPAP machine that adults use at night when they have problems with sleep apnea. The machine took a little while to get adjusted but once it did then Keegan was back to sleep. This machine still gives Keegan a pretty constant flow of oxygen but still forces him to exercise his lungs and breath on his own. It is a lot like being on the ventilator but much better because you don't have the tube down your throat, only cannula up your nose. We did get to hear Keegan cry this morning too. This really was the first time we have had that chance since he has pretty much been on the ventilator tube since he was about 15 minutes old.

Right now Keegan's color is really good and he seems very calm. They are going to keep him off sedation still since they want to see him get that worked out of his system. It also sounds like they are going to wait on removing the PD Catheter till tomorrow. It still seems to be slowly draining and due to the fatty content they detected in it over the weekend they would like to adjust his diet to see if that can be cleared up. Also, now that he has the breathing cannula stuffed up his nose, they now have the smallest size NG tube going down his throat for giving him certain medications and eventually starting him back on formula.

Maddie and I are with him today and I have the night watch. Keep the prayers coming and I will try to keep the good news coming. Thank you for all the support!

Gray

Sunday, September 30, 2007

Update

Good evening everyone!

Today was a good day overall. We didn't make as much progress as we would have hoped but we didn't take any steps back either. The hope from yesterday was that we would be able to extebate Keegan by mid to late morning today and he would be breathing on his own. In order to come that far we would first make sure this Keegan's stomach was empty and we would also need to make sure he was very awake. The awake part is a little more tricky then just awake. First they wean off the ventilator and allow Keegan to breathe on his own. If his respiratory rate falls for any reason then the machine would give him a few breaths and allow him to continue. For him to be able to continue to breathe at the correct rate Keegan would need to be taken off the pain and sedation medicine. He had recently gone on methadone and Valium. Apparently it takes a while to get methadone out of your system and that is what might have slowed us down today. Keegan was just absolutely wiped out today. He was so relaxed that the doctors were not seeing the sustained pulmonary function that they were looking for. The plan is to take him off the ventilator soon but they need him to wake up a little first.

In other news, when I made it to the hospital this morning, Maddie was holding Keegan again. That never gets old. Tonight Jerry has the watch... and by watch I mean they are probably watching Sunday night football together. Also, There is some other good news. Children's Medical Center preformed their 100th heart transplant on a 13 year old boy today. It was all very exciting for the family. The boy had been waiting for a heart since August. The family was from Odessa. The Mother and son were on the 8th floor the entire time waiting while the father stayed home with their two other children. Before we left to come home tonight it sounded like the surgery was over and everything went well. I heard a rumor that they were being spotlighted tonight on the CBS 11 news.

Everyone have a great day and we will be in touch with you all tomorrow.

Gray

Update

Good Morning... I posted some pictures from last night... If you haven't seen them, they are of us holding Keegan. I have more details there.

I did speak to Maddie this morning and Keegan is doing really well. We are not sure if he will actually come off the ventilator today or not. They are letting him do most all the work right now while the tube is still there. The machine watches him so that if he doesn't keep up, it will give him the next breath. For the most part he is doing it but every once in a while it is helping him. In the meantime they may wait until tomorrow. I will keep you updated if that changes.

Thanks, Gray

Saturday, September 29, 2007

Starting off to a good weekend

Why is it that babies will do great things as soon as their moms turn away for a second? ;) Gray convinced me to sleep in a little bit this morning since I have the night shift tonight and will be there during the weekend days too. Of course, when I called to check in (the nurses must hate me when I'm not there because I call every 30 minutes!), Gray said that the doctors decided during morning rounds to try to wean Keegan completely off the ventilator by tomorrow evening! He's off the epi completely (that's the adrenaline type drug that keeps the heart "snappy"), and they're going to increase his feeds slowly over the day to 4 ccs/hour. The formula is given through the ng tube down his nose, which is the yellow tube you see in the pictures. He has switched to different pain killers and seems much more comfortable than a few days ago.SO, please pray today that Keegan tolerates coming off the ventilator well and can be extebated by tomorrow evening. That is a HUGE step, not only medically but also towards us being able to hold him for the first time. He will also have to tolerate the increased feeds so that he doesn't choke when he comes off the ventilator. Isn't the power of prayer amazing? Keegan can do this, and you are each helping him get there! We'll update again later this evening.

Friday, September 28, 2007

Yeah for a Good Day!

Again, nothing major happened today, but it was overall a really good day for Keegan. The doctors weaned the meds and ventilator a little bit more. They increased his formula to 3 ccs or milliliters per hour, and they took his foley (urine catheter) out. So that means dirty and wet diapers for Mama and Daddy - yes, we're actually doing normal parent things on day 16! All his kidney functions are looking good still. The best news of all was that the echo they did of the clot in his heart showed it was definitely smaller. It also showed that the pressures in the right side of his heart are much more normal. These are all good steps in the right direction. Dr. Leonard and Dr. Guleserian (the surgeons) seemed extremely happy with his progress. Dr. Ramaciotti (the cardiologist) was so excited about Keegan's echo results today that he couldn't leave for the night without checking in with us again.

The swelling has come down a bit more, and if he continues to be "negative" over the weekend like he has been, he may look normal again by Monday. We have acquiesced to the demands of Keegan's adoring fans and posted a few pictures. While we appreciate everyone wanting to keep up with his progress, please understand that you probably wouldn't want pictures of a swollen you posted to the world on the internet either. We're trying to protect him and remember the good things. Keep praying for continued progress, and there will surely be more pictures to come!

Lastly, I wish I had time to respond to each of you to tell you how much we appreciate your prayers and support. You have kept us sane and bolstered our spirits so that we can be there for Keegan. He still has a very, very long road ahead of him, and we hope that you will each continue with us as we travel it. You each mean so much to us and to Keegan. Your prayers have brought Keegan this far, and we know that they will take him much farther. Thank you from the bottom of all of our hearts!

Update

Good Morning. We had a good night together. After being out almost all day yesterday he came around and woke up at about 11 pm and didn't want to go back to sleep until 2:30. No big deal because he never cried... he just wanted to be awake.

The swelling is slowly coming down which is good but it is still very slow. Right now we are also focusing on weaning off the meds because that will bring us that much closer to coming off the ventalator.

Keep praying and I will see what I can do about posting pictures =)

Gray

Thursday, September 27, 2007

Update

Well, slow and steady are the words for the day...and probably for the next week or so. That's a good thing though, and we'll take any good news we can get. Nothing really big happened - changed pain medications because Keegan was building a tolerance to the one he's been on for the last 2 weeks, reduced the epinephrine and dopamine a little, reduced the ventilator rate a little, and started giving 1 cc or milliliter of formula each hour (yes, that's a tiny amount just to "wake up" his tummy). His numbers overall are looking good. His kidneys have "smartened up" and started filtering a little better. He's still very swollen, but it's gradually improving. The doctors want him to be "negative" by about 100 ccs each day; that means that he is getting rid of 100 more ccs than he's being given to reduce the swelling. That's a very slow but safe rate. It's more frustrating for us as his parents to have to live through each day with him looking so puffy.

Gray has the night watch tonight with nurse Amber who had him the night after his first surgery. It's really amazing to see all the different nurses that have cared for Keegan ask to be back with him, like Holly who was on the day shift. The entire staff there is wonderful and so caring. We are blessed to have each of them.

Please keep praying for steady progress in the right direction. It's a pretty general prayer focus, but there are so many things that go hand-in-hand now. Today I was reflecting on the way God took care of Keegan before he was even born by preparing a support system at Children's for us. He insured a dear family friend of ours would be an RN in the CVICU. He put the father of a childhood friend of mine as one of Keegan's talented surgeons. He connected us with a pediatrician who happened to be best friends with one of the transplant team, and he introduced us to one of the head nurse practitioners through a judge I know. These are just a few of the many connections we didn't know we had or would ever need at CMC. We may never know or understand why Keegan must go through this, but we can always trust that God had it planned very well. Even in the face of tragedy, he has blessed us with miracles over and over again. We will continue to praise Him for his enduring love for he has lifted Keegan up as a light for everyone. This website is proof of that! Thanks again for your prayers. Keep it up!

Wednesday, September 26, 2007

Good Night

As Gray wrote earlier, Keegan has begun making very small but steady progress in the right direction. In fact, Dr. Leonard (the lead surgeon on Keegan's case and an amazing, Christian man) said this evening that he is confident Keegan has "turned" in the last 24 hours. He has started to urinate so much that they will probably reduce the diruetics tonight. There are two types of fluid - the swelling in his body that makes him look like a little Michelin man and fluid that keeps the veins working. It's a fine balance (isn't everything?) between making sure he doesn't get "dry" veins but also getting him back down to the adorable Keegan y'all have seen in the pre-transplant pictures. If he continues on this track overnight, he may look enough like himself again to post more pictures tomorrow.

The doctors did start him back on a small amount of gas called nitric oxide, which he had been weaned off of a few days ago. When they closed his chest, the lungs and heart had to compete for room in a much smaller space than they had before. This caused the pressures in the right side of his heart to be a little too high. The nitric oxide dialates the vessels in the lungs, requiring less blood from the right side of the heart. Thus, the pressure in the heart goes down. His overall numbers looked much better at the end of the day, and they started reducing the amount of epinephrin drip.

In the biggest news of all, his chest drain was removed today. The only wires coming out of his chest now are the pacing wires (to connect a pacemaker after surgery if needed and which he hasn't needed) and the PD catheder. Not much is draininig from the PD anymore, so that's good too. Less is more in our book!

Keegan's aunt Alex wanted everyone to know that Carter Blood Bank is holding a drive at Children's next Tuesday. It is a general drive, but you can specify your credits towards Keegan's account. Please remember that even if more blood is needed than Keegan uses (and he's used a lot!), it will not go to waste. Blood is needed every day, and they can go into a shortage very quickly. To sign up for the drive at Children's, you can go to Carter's website. See the link to Keegan's Blood Donation Plan blog entry for more details. And you might even get to visit us while you're there.

Thanks to the "A Team" that was on shift today - Andrea, Jim, Liz, and Dr. Raju. Brian is Keegan's nurse tonight, and he is awesome! Mamie (Maddie's mom) has the night watch tonight. Please keep praying for small progress each day. It's working!

Update

Things seem to be going well today. Keegan had a pretty good night. They have been watching his blood pressure closely and are still giving him fluids to help that. The good side of that is they have steadily been cutting those fluids back. They seem to think his blood pressure has been staying fairly steady and have been keeping him on the blood pressure medicine. If his pressure continues to hold then they will begin to wean him off that. His kidney labs came back this morning and his number were moving in the right direction but only a fractional amount. The doctors keep saying that they are happy with small changes or staying the same. He is still moving in the right direction in that department. They are have given him higher doses of diuretic which is helping him pee more. Because of that the swelling has started to come down. His eyes neck and stomach are still a little swollen but he seems to be getting better. He had a chest echo this morning and even though we don’t have the official results yet his transplant surgeon Dr. Kristine Guleserian was there to review it live. She seemed very happy and said that the clot does not appear to have gotten any larger. After the echo was over the right atrium sensing lines were removed. Those were the lines that the blood clot had started around in the right atrium. After lunch they will also remove the chest drain which has been in since the transplant. The attending ICU doctor, Dr. Raju Meyappan, seemed that over all Keegan has progressed since yesterday. He thinks that as long as we keep trending the way we are then things will be alright. You can tell with all the doctors and nurses, that the mood is better when they are around Keegan. We really do appreciate all the love and support they have shown Keegan. I will send out another update as soon as I can… now back to getting some work done.
Thanks,Gray

Tuesday, September 25, 2007

Update

Today was a busy day but all in all I think it was a good one. Keegan was able to get the venus line in his femoral blood vessel. This is good because it will set thing up to take the two sensing lines, the ones that were causing the clot, out of his heart. They ended up taking the umbilical line out but nothing else. They are going to wait to pull those other lines out because some of his other blood labs weren't just right. They have been constantly thinning his blood to keep the clot from growing. Not they want to get it a little thick to keep him from bleeding when they remove those lines.

Right now his kidney function is improving. He is no longer on the diuretic that was making him pee so much. His lab number on his kidneys do point to the fact that he is filtering better though. We also learned that after the chest is closed, the lungs typically face a the toughest time recovering. Keegan's are actually doing better then they expected and on several occasion they have been able to dial down the amount of oxygen he has been on.

The part of Keegan that the doctors and nurses are watching closer then anything is his little heart and the clot in his right atrium. After closing up the chest the heart has to contend with a smaller place to operate. This can create problems with blood pressure and heart rate. They have been keeping him full of fluid, platelets and blood. Because of that it has been keeping him pretty swollen. Apparently swollen doesn't always mean you have enough fluid. The fluid they need him to have is the kind that is actually pumping through him, not just gathering in his abdomen or head. Right now they are "playing the fluid game" to help balance his heart rate and his blood pressure. As for the clot they have elected not to take any evasive action to remove it. They have instead elected to watch it daily with a chest echo and to follow it with thinning agents and asprin. This will allow the body to attack it with out it growing and will thus dissolve over time.

In the meantime my father, Mark, has the watch tonight (thanks Dad). Maddie is going home after a very long two days and we are getting dinner courtesy of her friends at the Dallas County District Attorney's Office. They are bringing it over to her grandparents house where we are staying. Say a prayer as always and know that Maddie and I appreciate you all so much. Thank you for being such great friends

Gray

Update

I just got to spend most of the morning with Keegan. He seems to be doing alright. His blood pressure is a little low and he is a little swollen from the extra fluid they gave him... other than that he seems to be doing alright. They did their chest echo this morning. We are waiting on the results of that. Another surgeon is with him right now trying to put that arterial line in his femoral artery.

I guess we will have a better plan after the echo is reviewed, and we will see what they want to do. Updates to come...

Gray

Update

Good Morning All,

I just made it back to the hospital. Maddie says he had a quiet night for the most part. They did give him a blood transfusion last night after trying to get the line in his femoral artery (Thank you everyone who has given blood... didn't think we would need it for something like this but). They needed to get his fluid balance back up after all the "peeing" the kid had been doing. His kidneys have slowed that pace down a little. That is normal after have a procedure done. The good news is his kidney labs are still showing a steady trend for improvement. If that keeps up I think everyone will be able to breath easier. In the meantime we are waiting for a chest echo or maybe a sono-gram... Either way we are waiting for them to take another look and then decide what the plan of the day should be. I will be back here with an update when I have one.

Thanks, Gray

Monday, September 24, 2007

Evening Update

Sorry for the delay in update. We had a lot go on over the past few hours. The surgeons were able to implant the arterial line in his right wrist. They worked on that first. They had originally tried to put it in his left wrist but couldn’t find a vein large enough. That delayed things a little. The important part was they got it in.

They then moved on to work on closing up his sternum. That for the most part went well. They inspected the outer appearance of the heart and from everything they could tell it looked good. They were able to place the sternum back together and suture him back up. Normally they would have cleaned him up and the procedure would have been through. The head transplant surgeon decided to perform a chest echo just to take another look at the heart function and to make sure that things were progressing as they should. When they preformed the echo they found something. There was a clot in the right atrium of the heart close to where the superior vena cava artery enters the heart.

They came out at around 5:50 and want permission to perform a bronchial sonogram of the heart. The cardiologist uses a special sonogram probe to enter his esophagus and travel down his bronchial tube to get a very up close and clear view of the heart. The cardiologist discovered that the clot that they found was sitting right where some older arterial sensing lines enter the heart. There arterial sensing lines help take certain pressure of that particular atrium. The sensing line was installed with the transplant and was more than likely going to stay there until he was transferred out of the ICU to the recovery floor. It is not uncommon for blood to clot around a foreign object in the body. Typically blood doesn’t clot that fast (but who are we to call any of this typical).

The surgeons have really studied the area and have determined that the clot is not infected and that the clot is not posing an immediate danger to Keegan yet. The surgeon says they could take Keegan at a moments notice and remove the clot surgically. They have decided not to do that yet. There is still concern that another open heart surgery could effect or set back the gains that his kidneys have made. They are treating Keegan with a drug called Heparin. Heparin is the same anti-coagulation drug they used when he was on ECMO. This will keep the clot from growing in size. In the mean time they are going to put a new arterial sensing line through the femoral artery in his groin. They are performing that procedure as I type this now. That is all they will do for him this evening besides watching him as on call as they always do. In the morning they will remove the two arterial lines that are in his right atrium (the ones in question). They will also finally remove the umbilical arterial line too (the arterial line they were trying to replace by putting the new one is his wrist).

When the surgeon broke all this down to us she was clearly concerned. She wasn’t so worry that they felt like they didn’t have control of the situation. The clot is not life threatening enough that they feel like they should risk the ground gained by the kidneys over the past week.

New Update: (Maddie just called with another as I was writing this up… didn’t feel like changing stuff.)

The surgeons just came out from attempting to place the femoral artery sensing line. They attempted to place the sensing line in both legs and didn’t seem to have any luck. Rather than to force the issue they are opting to sit back and let Keegan rest for tonight and they are going to address the issue in the morning. They thing that the veins might have either turned a "funny" enough angle that made it tough to sheath it up the artery. Anther reason is the artery it self could have a small clot too (they feel that this is unlikely because there is no real swelling in his legs). Either way they figured the little guy has had a long enough day and they will let him rest up before they plan for something tomorrow.

Good news though… (About time right?) Keegan’s pre-chest closure numbers are starting to come back to normal now that his chest is closed. Keegan’s chest has now been made into a smaller space once they had closed it up. This meant that his heart was working in a tighter area, his lungs had less room to breath, and he had the stress of an operation. His heart rate has started to come back down to a normal level, his blood pressure has started to come back to where it is supposed to be, and his blood oxygen saturation levels are coming back up. All of this is good new and a pleasant surprise.

Well… thank you for your patience and support. Keegan really has been living off the prayers and well wishes. I will keep everyone updated on tomorrow’s events. In the meantime Maddie has the watch so Keegan is in good hands… you can all get some rest.

Thanks, Gray

Update

Just got a call from the surgeons. They are still working on closing his sternum, but everything is going ok so far. It shouldn't be too much longer. They told us before they started this that we should expect him to have some rough days while his chest "settles". He also will be taken off pain and sedation again, so he will not be the happiest of campers. We will try to get some more pictures tonight when they put Humpty back together again!

Update

I just made it back to the hospital. Maddie was told just a few minutes ago that they just finished putting the arterial line in his right wrist. It sounds like they made an attempt to put it in his left wrist but they just could manage to find a spot. I'm just glad they were able to get it put in some where. His tiny little veins made it impossible to install it in a traditional manner.

Now that they are done with the arterial line they will work on closing his chest. Hopefully it won't be too much longer now.

Thanks... Gray

Update

I wanted to start by saying sorry for the updates being a little delayed. Maddie and I have gone to a scheduled watch in Keegan’s room. We can’t get to the internet from there and we are spending less and less time in the waiting room. Just because there aren’t as many posts on the site doesn’t mean that there is necessarily something wrong. Thank you everyone for your support and concern. I promise I will keep this going long after Keegan makes it out of the hospital.

Now onto the update…

Keegan and I had a good evening last night. We got him all cleaned up and then we settled in to watch the Cowboy game. He was having a little problem with his stomach last night. They think that a combination of air in his GI track and the pain medicine he has been on has made him a little nauseated. He was starting to spit up a lot so they decided to put another NG tube through the other nostril. The first tube actually went past his stomach and is being used to give him medicine. The new tube is being hooked up to a vacuum line and is used to suck out his stomach. Ever since they put that in he has been doing great. He went right to sleep and hasn’t spit up since.

We got our morning labs in this morning and his over all reading looked good. His kidneys are starting to show more improvement too. In even better news they have just given us word that they will be closing his sternum up. This is a major mile stone. Once I know more about that I will post more.

Thanks again for all your support.Gray

Sunday, September 23, 2007

Evening Update

I'm sorry we haven't been able to update since last night. As Gray said earlier, it's much more difficult to post now because we are in his room all the time. When he was on ECMO, there wasn't much room for us, so we were able to be on the computer more. Keep with us though! Keegan's not out of the woods yet, and we will be able to access more once we're on the recovery floor.

Today was a pretty stable day. He is off sedation and most of the pain meds again. That means that he's more alert, but he's also more aware of every ache and pain...which means more crying and general fussiness. My heart has never broken more than to see my son in pain and not be able to pick him up to comfort him. Gray and I are still anxiously waiting the first time we get to hold him. It seems his ventilator tube bothers him the most, and I guess rightly so. I doubt I would like a tube down my throat either. Luckily, he's off the nitric oxide completely, so the ventilator is next to go once his chest is closed.

The surgeons are hopeful that they will be able to close his chest either tomorrow late or on Tuesday. We are really looking forward to that. However, more of his swelling needs to go down. His hands, feet, and eyes look better, but his chest wall, stomach, and neck are still pretty swollen. This is partly due to the fact that his kidneys are flushing but not filtering - what the doctors call "dumb pee." The chemicals they look at to judge filtering were down very slightly today, so we're waiting to see what they do tomorrow. They are still watching his blood pressures and altering the meds to keep them where they want them. It seems kind of difficult to reach a happy median. Tomorrow they will do a small surgical procedure to get a new arterial line since they couldn't get one other than his umbilical.

Please keep praying for his kidneys to work well so that the surgeons can close his chest early this week. Not only does that mean improvement, but it also means MORE PICTURES! =)

Lastly, please pray for the family of another CVICU patient, a 14 year old girl from El Paso named Melissa. She had a stroke in her sleep last Tuesday and was brought to Children's on Wednesday while Keegan was getting his new heart. The family found out yesterday that Melissa is brain dead, and today they took her off life support. Please find time to keep Melissa and her family in your prayers.

Saturday, September 22, 2007

Update

They tried to put in the arterial line this afternoon but they still couldn't get it in. His little veins are just too small. Anyway, they opted instead to pull his umbilical line about half way out so it isn't as far into his heart. Eventually they will need to get that new arterial line in because the umbilical line has been there since he was born.

They also opted to wait on the peritoneal dialysis until maybe tomorrow. His afternoon labs didn't really improve but they didn't really get worse either. The encouraging thing is our little man has been peeing like a raise hoarse. That is the encouraging thing.

He has been up and active lately. Maddie and Jerry are planning to stay with him tonight. I believe Martha and Alex will be here during the day tomorrow. I will have the watch tomorrow night. Thank you for the support and prayers. We will update you if anything else happens.

Thanks, Gray

Update

Maddie and I have enjoyed sharing the day with Keegan. He has had a pretty quiet day up until now. At the present time they are going to make another attempt to move his arterial sensing line. The arterial line can be used for applying intravenous medication and it can also be used for sensing arterial pressure from the heart. Presently it is in his navel and they are worried that leaving it there may interfere with the peritoneal dialysis if they choose to do it. They will attempt to put the new arterial line in his arm or maybe even his leg. They had attempted to do it yesterday but were having trouble finding a line big enough to go through. They told us that if they were not success for in putting the new line in then they would take his umbilical line and draw it a little further out of the heart. Anyway, it all should take very long.

Other than that we are just enjoying our time with Keegan. I will give an update later. Maybe after his labs come in and we hear how his kidney function is holding up.

Have a good Saturday and we will talk to you again soon.

Gray

Update

Good morning everyone,Keegan had a good night.

He spent it with his Oma reading lots of books. They said that he continues to have good urine output. They did say that his kidneys do need to do a better job of filtering. They are going to watch the levels this afternoon and depending on how his evening labs look they may start kidney dialysis through his peritoneal dialysis (PD) catheter. His transplant surgeon is still remaining very hopeful about his kidneys. If they do opt for the dialysis it would just be there to give him a good flush and to hopefully allow his kidneys to keep improving. The PD catheter dialysis is a little different than the typical dialysis that people normally hear about. This catheter is a direct line into the peritoneal. The peritoneal sack is a sealed off lining that holds the organs. They would fill that lining with a fluid that would help draw out the impurities. After it has had sometime to sit in there they drain the chemical out with all the impurities going with it. It typically isn’t the continuous dialysis that runs a person’s blood through an inline filter. With babies, they can not typically do the other type of dialysis because of their size and because their typical volume is too small.

They are also very pleased with his oxygen levels in his blood. They are going to start taking the nitric oxide from his ventilator. The nitric oxide is there to help stimulate the oxygen/blood interface in his lungs. His blood oxygen levels are holding in the high 90 % range after the first wean. They will continue to wean a little every few hours. He is still on about 60% Oxygen. When they are ready that will probably be one of the next things to come down.

They are also starting to wean him off some of his drugs. Two of the heart medications he is on are called dopamine and epinephrine. The dopamine is there to keep his blood pressure on the higher than normal side. They will begin to wean him off that first. The epinephrine is a lot like a adrenaline booster for his heart. It will make his heart a little snappier than normal.

Other than that his is even more lucid than he was yesterday. His is with his mom right now in the room. Much to Maddie’s dismay I set them up to watch College Game Day on ESPN and then put the remote out of reach. The way I look at it… it is never too early to introduce a boy to football. =)

Everyone have a great day and we will keep the reports coming. (All in all it should be a quiet weekend with nothing really new happening until Monday). Get some rest and we will keep posting.

Take care,Gray

Friday, September 21, 2007

Good Night

Today ended up being a very good day. Keegan started coming out of his sedation and was opening his eyes. We were able to hold his hand and feel him squeeze back. We had some success on the kidney front too. He was able to go three times more in one hour than he went sometimes in an entire day. They said that they were happy with the quantity but would like to see his kidneys filter more. They are feeling that the kidneys will function well; it will just take time. His head scan from yesterday went well. The early look thought that they might have seen some new bleeding but a second opinion ruled that out quickly. He had a chest echo this afternoon, and even though we haven’t had the official result back yet, they seem to be very pleased with the various different pressures around his heart.

All in all, we will say today was a good day and keep hoping for more. There are still a lot more improvements that we need to see. The next big milestone will more than likely come on Monday when they might close his sternum and suture his chest. Not sure on an exact date for that, but it is good news when they can go ahead and get him closed up.

Tonight his Oma (Linda) has the watch and has already had fun reading to him. They tried to watch the OU vs Tulsa football game but apparently he doesn’t have much taste for OU Football or maybe he just doesn’t like a blow out.

I have gotten word that there has been a lot of response to the need for blood. Maddie and I would like to thank everyone has taken the time to donate. We have been told that we will never know when he may need more. Thank you all so much!

Also, I have been asked to post more current pictures. Maddie and I have decided to hold off on that for now. He can’t have a blanket over him right now and until they close his chest, we rather not share those photos. Believe me… there will be plenty of cute pictures to come.

Thank you all for your prayers and well wishes. I wanted to apologize for not posting as often as well. Now that we can spend more time in his room, we are not around the computer as much. We can use our computer in his room, but we can not get online while in the ICU. It was nice to hear that so many people were trying to keep up. I will make sure we continue to keep people updated.Everyone have a good night…

Maddie and I will be at the hospital in the morning, and Maddie will have the night shift tomorrow night.

Take care, Gray

Thursday, September 20, 2007

Update

Good News... They just took the clamps off his new heart and it started beating. They said it started right up. He is still on the bypass machine and it will probably take him about another two hours to finish up and take him off the machine. That is our next hurdle but right now everyone is very happy.Keep those prayer coming... Thank you so much!

Gray

Wednesday, September 19, 2007

Update

The Heart is in the OR now and Keegan is now on the bypass machine. They are starting the surgery now.We will keep giving updates as we get them.

Thanks, Gray

Update

The nurse came in to inform us that the heart is on its way to Dallas. The heart will more than likely be here in about an hour. We are told that Keegan is prepped up and ready. Dr Nikido is watching over him.

Gray

Update

Word came from the Dr that is harvesting the heart...

The heart is Good. Wee-www...

It will probably be another hour and a half before the heart arrives. They will fly it to Love field and bring it to the hospital by helicopter. We found out that the plane gets landing and take off priority at any airport.



Pretty Cool.Good news...



keep those prayers coming.

Gray

Preparing for Surgery

Keegan is on his way to the OR now. They will get him already so that they can start as soon as the heart arrives. The word that we got is that the heart is in good condition, it is a blood type match, and the size is just what they wanted. We are waiting for news from the Children's Dr. that will harvest the organ likes what she sees. As we get the updates we will post them.Please keep praying.

This is not over yet.

Thank you everyone.

Gray