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