Sunday, September 28, 2008

Home

Keegan was discharged from the hospital late Friday night, and he's been doing well since we got home. He made sure to stop by the CVICU on his way out to say hi to some of his friends, like Marilee and Brian. He still has some tummy upset, but it's much better than before. He still has some good color, so we're hoping his blood levels are still up. We will have more labs next week and follow-up with his pediatrician. It will be at least two or three weeks before he will be clear of the c-diff for good and able to follow up with his GI consult. The good news is that his heart is doing well, so we can focus on the other issues without having to worry about his heart.

I guess house arrest will start a little early in the Harrison household as we wait out the c-diff and begin RSV/flu season. Keegan will get synagis shots every 29 days again beginning sometime next month and ending in February or March. They worked very well last year, so we are praying for a good result again this year.

We posted some (kinda) new pictures from his heart transplant anniversary dinner and the ICU reunion at Children's last week. Thankfully, Keegan's social calendar is fairly empty this month, so we should be able to focus all our energy on getting him well. Thank you as always for keeping him lifted up in prayer. He would not be where he is today without your love and support.

Friday, September 26, 2008

Update

Another busy day at the hospital. It looked like we were going to go home early in the morning, just needed to check his blood counts one more time. Then at about noon, Keegan developed a terrible rash and welts all over his body. The doctors immediately gave him tylenol and benadryl, and it went away miraculously. For awhile they thought it was Fifth's Disease, which is very common in preschoolers. Then, his cultures for parvo came back negative about 2 hours later. So now, we are waiting for the benadryl to wear off and see if the rash comes back by around 6:30pm. Also, his remaining cultures will be out 48 hours by about 8:30pm tonight. If he's rash-free and negative cultures, we should be released.

The plan is still to give him some time to get over the c-diff, and then follow-up with GI to look into the blood loss and weight issues. His tacrolimus levels were back up again today, so we'll hold his dose tonight and lower it starting tomorrow.

Thank you for all your prayers as we've gone through this stressful week. We will keep you updated on anything else that comes up. We don't have any other appointments until Tuesday or Wednesday of next week, when Keegan will have more bloodwork done. We'll surely let you know if we don't end up going home tonight!

HAPPY FIRST BIRTHDAY, TUCKER!!!

Thursday, September 25, 2008

Update

Not much news to report here. Sounds like we definitely won't be going home until tomorrow, but Keegan is already starting to respond to the antibiotics and IV fluids. So far, the remaining blood cultures are still negative, but it hasn't been 24 hours yet. We stopped the IV fluids this morning to see how he'll do on his own. His diarrhea has slowed but not stopped. His tacrolimus levels were back in the right range again this morning, so we started his prograf back up.

We met with the transplant team, and they think his heart is fine. They still want the GI consult once the c-diff has passed though. The c-diff probably made any other issues he has worse, but it is a recent occurrence in problems that are ongoing. As we said yesterday, the c-diff will interfere with anything else they try to do right now, so we'll reapproach his absorption/weight issues and blood loss later on an outpatient basis.

Thank you again for your continued prayers and support. If somethings changes we will be sure and post again. Otherwise we will update tomorrow.

Thank you,

Wednesday, September 24, 2008

Update

Ok, so we're still here. Keegan had a pretty rough night. He felt a little better after getting the blood transfusion, but he was having some terrible bowel issues and was in alot of pain. This morning, we woke up bright and early to go down to radiology for xray and bone age scan. His echo and EKG were later in the afternoon. All of these tests were fine, and his biopsy came back with Grade 1R mild rejection. This is considered a stable condition, and it will only require a bit of alteration to his meds. He is already going to some med changes due to the levels in his most recent labs.

We were waiting all day on a GI consult. Keegan still had no weight gain; he had blood loss and severe diarrhea. There were a few theories about this that I won't go into now. Before we could get to that, one of the simpler answers came back - Keegan tested positive for "c-diff." This is not good but treatable. Basically, when he was sick last month, the massive amounts of antibiotics he was on erradicated the good bacteria in his system, allowing the bad c-diff bacteria to take over. It is a very nasty infection, but as of now, they are not concerned about its effect on his heart. This can be treated with a different type of antibiotics over about 10 days. Before we could start the antiobiotics, Keegan spiked a 102 degree fever and has maintained that for over two hours now. The access team could not get blood for additional cultures because he was too dehydrated, so now we are startying IV fluids.

We will stay here at least through tomorrow, more likely through Friday. We have to wait 24 hours after blood cultures and start of antibiotics, which can't be done until he is rehydrated enough for labs! The GI team said that they cannot assess him until he is completely clear of the c-diff because any other conditions will be masked by the infection. Once he is clear of the c-diff, which could take weeks, we will assess his remaining weight and blood count issues to determine what other tests may need to be run.

Unfortunately, he will not be able to attend the ribbon-cutting at Legacy tomorrow, but Gray and I are still planning to get to the radiothon taping. Thank you as always for continuing to keep Keegan lifted up in prayer. Our biggest hurdle was his biopsy and any rejection; that is taken care of, and the remaining issues are completely treatable. Please continue to pray for Keegan as he fights this infection. We will update again tomorrow.

Tuesday, September 23, 2008

Cath Lab Update - Admitted

We are at Children's for Keegan's annual and biopsy. We were here at 7am to get him ready for cath. He was in a good mood, even though he was hungry. The plan was to go to cath for his biopsy and coronary angioplasty (pictures with dye) first. Then, he would go back to the clinic for xray, echo, and EKG. We knew this would be a long day, but it just got longer. Keegan is now going to be admitted at least overnight.

When we met with his cath doctor, Dr. Nugent, this morning, he was a little nervous about finding an access point, since Keegan has been cut open at nearly every possible spot. Usually, they will go in through the groin for these procedures. If it were just a biopsy and no pictures, they would go in through the neck. Both of these places have been used before by cath and his central line, which can cause thrombosis in the veins. So, he left us saying he didn't know where they would get in, but they would get in. They took him back with him waiving happily to us at around 8am.

We've been sitting here in the hall chit-chatting with just about all our doctors and nurses as they have been going about their business. Susan, the transplant coordinator, came out saying Keegan was ok, but his blood levels were dangerously low. They were not going to be able to take blood for labs, and he was going to be given at least two units of blood. This will require him to be admitted overnight at least for observation. We will see how he does by tomorrow to see if he'll need to be here longer and if they can get his labs.

Please keep him in your prayers, and we will update again soon.

Friday, September 19, 2008

Happy Heart Birthday!

Well, here we are – one whole year post-transplant and officially out of the most critical period. The mom of one of our ICU friends, Karis, has been documenting her birth/heart story on her blog the last few days, and it inspired me to write out a little more detailed synopsis of at least Keegan’s transplant details in one entry. I’ve been pretty emotional just anticipating today. This is Keegan’s true birthday in my mind. It is a day filled with hope, but also with new fears for the future. Keegan received the gift of new life on this day. I think Gray and I received so much more. We were given the opportunity to raise our son, to watch him grow, and to love him more than we ever thought we could. Of course, we loved him before he was even born, but on this day a year ago, we could begin to hope that we would actually have a life with him as a family. More than just a heart or renewed health…this heart transplant, this selfless gift of a family in the midst of their grief allowed our family to be. That is a gift that “thank you” will never be able to encompass. Here is what I can remember from just one short year ago. The heart has a way of making some of the roughest parts become a little fuzzy, if only to spare you from having to relive them. Most of this you know from other posts, maybe some of it you don’t. For what it’s worth…

Keegan’s congenital heart defect, Tetralogy of Fallot (TOF), does not, in and of itself, result in or require a heart transplant. It is considered a “fixable” defect. Keegan’s case was so severe that he was in effect crashing from the second he was born, and it was a stretch to postpone his first surgery to a little over 24 hours after birth, just so I could see him first. What should have been no more than 5 hours of surgery turned slowly into 10. Keegan’s lungs would not oxygenate his blood well enough to allow him to come off of bypass, and he was placed on ECMO. We would later learn that during an echo in the OR the surgeons noticed a “black spot” on the muscle wall separating the bottom chambers of his heart. They didn’t know what it might be, so they didn’t know what that spot would later do. Everyone was fairly confident Keegan’s lungs just needed a bit of rest after such a stressful start.

A standard ECMO precaution is to begin the process of being listed for organ transplantation immediately. The longest any child has ever stayed on ECMO is 33 days. The listing process takes 5 days or more, so it’s better to be ready for listing than have to do it later. The following Monday (5 days after birth), Keegan was listed for transplant, and the cardiac team prepared to try to wean Keegan off of ECMO. At the time, everyone was more concerned that he would just need more time on ECMO to heal and may not come completely off that day. Gray, my mom, and I waited in the CVICU waiting room putting birth announcements in envelopes as the minutes ticked on into hours. Dr. Guleserian, the transplant doctor, came to the door after almost 3 hours and asked Gray and I to come back to a conference room. There she told us that something had gone very wrong, that they never attempted the ECMO wean. The echo done prior to the wean showed that the “black spot” on his septal wall must have been a hematoma (like a bruise) that bled out with the massive amounts of blood thinners required for ECMO. Since his heart had not been beating, just resting, blood had completely filled it and obliterated the majority of his heart structure. There was no way Keegan could survive off of ECMO without a heart transplant.

Now, Gray and I didn’t know much at that point about organ transplantation. The team threw an enormous amount of statistics at us – quality of life vs. quantity, life expectancy of 18 years at present (the longer the first transplant lives, the longer the expectancy), rejection rates, numbers of people on the list, how far of a radius an organ could come from, how he is rated on the list. The one thing we knew was that people waited years, not days for a heart. Keegan would be the smallest and youngest in Texas on the list, and his size limited the size of a donor heart. More importantly, we had two unknowns. Could his lungs support a heart? If they couldn’t, it would be over. And would his kidneys hang on long enough? They were failing more and more each day, and kidney transplants can’t be done until 3 years of age. No one would say it, but their eyes conveyed exactly what we feared – the likelihood of finding a heart for Keegan was next to none.

We survived the next day on sheer adrenaline. We met with Dr. Leonard for almost 3 hours going over every minute of Keegan’s life since he had been at Children’s. As much as he wanted to take responsibility for Keegan’s condition, we couldn’t let him. He had done everything he could. We made plans for Keegan to be moved to the cath lab on Wednesday to take pictures of his lungs, to see if they were going to function well enough off ECMO. That evening, Gray and I went home. We did laundry; we packed; we paid bills. Then, we cried. We knew that our son would probably never leave the hospital, never sleep in his crib, or play with the toys waiting in his room. We feared more than anything that the first time we were able to hold him would also be the last. The next morning, we resolved that every minute we were in his room, we would be happy. He would never know our fear, never see it in our faces. If this was all he had with us, he would know that he brought us the greatest joy.

When Gray and I got back to the hospital that morning, everyone was busy and tense. We assumed they were just nervous about having to transport him again up to the third floor while on ECMO. Later we would find out that the transplant team knew a heart was available early in the morning. They had decided not to tell us unless his lungs were cleared by the cath. Usually, we had to stay in his room as they left because of the sheer number of people it took to move him. This time, they asked us to ride in the elevator, and when we got to the cath lab doors, everyone stopped and insisted we kiss him. A little odd, but everything in our lives was that way by then. On the way back to the CVICU waiting room, Dr. Leonard passed us, white as a sheet, and barely said a word. He said later that he was merely afraid he would slip out the news. Again, Gray, my mom, and I waited. The cardiologist from cath came out after almost 2 hours with pictures of Keegan’s “beautiful” lungs. We thought that was the end of that.

About 30 minutes later, Dr. Guleserian came to the door. She asked us to come back to the conference room. One thing you learn quickly in the CVICU is that if the surgeons come out to see you, it’s good news. If they ask you to come back to see them, it’s not. All we had ever had was a call to come back, and here we were again. According to Gray and my mom, I began to fall down and refused to go into the conference room; I kept saying that I wouldn’t go back in there. I was finished with bad news. But Gray figured it out when every nurse and doctor was packed into the hallway. They all yelled out that it was good news, that there was a heart for Keegan. I don’t think I could ever put into words what was in my heart at that point. If you could describe the feeling of experiencing a miracle, I suppose it wouldn’t be miraculous. The joy, the gratitude, the feeling of unworthiness. All I wanted was to see Keegan and hold him at that moment.

We began gathering all our family together and called in the parish priest to perform an anointing of the sick and last rites, just in case. Dr. G would have to fly to Houston in the Children’s jet to get the heart. By 8pm, Keegan was in the OR to prepare him to come off ECMO and onto bypass. Until Dr. G arrived with the heart at about 11pm, Dr. Nikiadoh prayed over and sang to Keegan for almost 3 hours in the OR. By midnight, they had stopped his old heart and were preparing for transplant. By a little after 1am, transplant coordinator Susan came out to tell us that the new heart was in, beating away, and was very “snappy.” By almost 3am, they wheeled him around the corner by the CVICU – not with 20 people pulling ECMO, but just him in the little isolet. He was pink and looked beautiful. But the only thing I saw was his chest. It was still open with that “window” over his sternum, and there was the most beautiful thing I had ever seen in my life. His heart was beating. You could see it, right there, beating away all on its own. It was the beginning of a new life.

Of course, there were many more obstacles waiting for his kidneys to wake back up, the swelling, all of his systems on the verge of shutting down after sternal closure, going into SVT when they removed his pacing wires, learning to eat, losing weight. Gray and I had to learn a whole new world of medical knowledge we never wanted to have. I wish I could say that everything was peachy keen afterward, but you do wonder if you have done the right thing, what kind of life you have set your child up to have as a transplanted person. But he wouldn’t have had any life if you hadn’t. You learn that a series of good days doesn’t mean a bad one isn’t around the corner and vice versa. You learn to ride the waves. Many of you have asked where the heart came from – a little boy in Houston born the same day as Keegan who died from SIDS the Monday Keegan was listed for transplant. We have had only one contact with the family, and they have not responded since. That is hard, but it is their choice. I learned through this that grief truly is unique, and you cannot judge.

As I mentioned before, today I am filled with hope for the future but not without fears also. I hope for a future full of completely normal days. I hope for many years watching my son grow, of learning who he is and hoping that he will pay forward the miracles and kindness that have been given to him. I hope that he will be God-fearing and closer to his Lord than I try to be. I hope for the day I see him leave home and become a man, maybe get married and have kids of his own. But there is also the reality of having a son with a heart transplant, who is immune suppressed and prone to rejection, coronary artery disease, and infection. The unknown long-term influences that ECMO and the trauma of his first months have had on him. If I said I didn’t fear that I won’t get to see these milestones in his life, I would be lying. It is easy for outsiders to look at him and think he has never been sick a day in his life. I like to let them. The days that I don’t think of it are the good ones in my opinion. There are moments of overwhelming sorrow for what Keegan has been denied already at such a young age, of complete fear that each day will be the last. But I’m ok with loving him too much that it hurts. Those moments pass in an instant when he smiles at you.

I know this was a bit long-winded, but I felt it was something I needed to do. I hope it provides some insight to our family and friends, but mostly, I hope that one day Keegan will be able to read it and understand what he can’t remember. God gave him life, not once but twice. I thank Him with every breath in my body for loving us enough to let us know and love Keegan. I would live the entire year over every day of my life just to be able to hug and kiss him each day. We love you, Keegan. You are our “little fiery one”, our Bug, our Little Man, our son, and our hearts.

Wednesday, September 17, 2008

Update

We had Keegan's first birthday party last Saturday, even though it was rainy and windy as Hurricane Ike passed by. He had a bug-themed party at his Mamie and Big Daddy's house. It was such an awesome party, and he was very blessed that his Mamie put together such a great time. Many family and friends came to celebrate. Instead of gifts, we asked everyone to bring a book to be donated to Children's in Keegan's honor. As of today, we have collected 152 books! Some were still coming by mail today, so we'll update with the final count when we bring them to CMC. Most will probably go to Legacy since its library is so new. Keegan was a real trooper through the party and didn't crash until everyone had trickled out. Thank you so much to Mamie & Big Daddy for hosting and to all who came to help us celebrate such a huge milestone in K's life.

Keegan also received some fun gifts from family. We gave him a climber/slide that's probably a little beyond him right now, but he'll enjoy it as he grows. He got a great wagon from Chum & Poppy, a really cool, Kettler trike from Mamie & Big Daddy (it will grow with him from us pushing it to him riding completely on his own), and a rocker from Pops & Oma that has belonged to four generations of Harrison boys now. You can see pictures from the party here.

Monday Keegan went to Dr. Lestz for his one-year well-child (still makes me chuckle to think of him at a well-child visit). He had lost a little weight again (just a bit) despite still taking formula and 8oz of pediasure a day. We will continue the pediasure but stop formula when we run out at the end of the week. Keegan will likely go into the pediatrician's office once a month for weigh-ins until everyone is a little more comfortable that he's growing properly. It's kind of like a skewed version of Weight Watchers! Developmentally, he got the thumbs-up, even though he's not really walking or talking yet. No words other than mama/dada, and even those aren't discriminate. I swear he said "yeah" and "hi" the other day, but it must have been a fluke. He's taking a few steps behind his new walker now, but he's very timid still. His only other new trick is that he finally started drinking from his straw sippy cup. Although, it was only at one sitting today, so maybe that was a fluke too.

Friday will be Keegan's one-year anniversary of his heart transplant. Saturday, he will take his one-year portraits at the Arboretum. Sunday, we will go to the annual ICU reunion at Childrens. Next Tuesday, Keegan has his annual heart clinic with biopsy, and Thursday, he will be one of the official ribbon-cutters in the grand-opening of Children's at Legacy. Gray and I will also tape our annual interview for the Children's Miracle Network radiothon on Thursday. We also will meet with an author to draft the direct mailer for Childrens next week (this is one of those "please donate" things you get in the mail). Busy, busy, busy bees around here!

We will post again this weekend, so stay tuned. Don't forget to check out the recent pictures (our camera had a mishap, and we only recovered part of the pics from the party; we lost all our video), and we'll post more in the coming week of all Keegan's social engagements. =) Thank you as always for your prayers and encouragement. The happy, one-year old Keegan we have today wouldn't be without the love and support of our friends and family.

Friday, September 12, 2008

HAPPY BIRTHDAY, BUG!!

Wow, can you believe Keegan is ONE YEAR OLD TODAY??!?! Neither can we! I can't tell you how hard and long I prayed that this day would actually come, and here we are! And Keegan is well and happy. What more could a mama ask for?

Keegan was born at 6:24am, and by this time in the day (almost noon) he had been at Children's CVICU for almost two hours. Less than 24 hours after arriving there, he began the 10-hour surgery to try to repair his heart and end up on ECMO to survive. Less than 7 days after that, he would have a new heart.

This morning, he laughed as Gray and I sang "Happy Birthday" to wake him up. Then he had a fun game of finding his new climber/slide ready for him in the office. There are more presents to open this afternoon, and one of his favorite nurses at clinic had a huge, billboard birthday cake sign put in our front yard for his special day. Tonight he gets his favorite Double Dip frozen custard for dessert (but shhh, don't tell him, or you'll ruin the surprise)! ;) We will post some birthday pictures here later tonight.

I wish I had something inspirational to say here, but the only thing that has been running through my mind is how blessed we are to have him, how lucky we are to be surrounded by such loving family and friends, how Keegan has changed all of us for the better, and most of all, how merciful and awesome our God is! What miracles He's chosen to bring to our son and our family! We are certainly not worthy of his unending love, but He blesses us everyday despite our faults. He has seen us worthy to care for one of his true angels and miracles, and we can never thank Him enough.

When Keegan was in the hospital, I continually looked to Psalm 138, The Hymn of a Grateful Heart, which describes trusting in the Lord through the darkest times because of our salvation. Nothing seems more appropriate to leave you with today than this. Thank you for praying for Keegan, for sharing in our journey, and loving all of us so dearly. We are overjoyed to be able to share our miracle with each of you. THANK YOU!

I.

I thank you, Lord, with all my heart; before the gods to you I sing.

I bow low toward your holy temple; I praise your name for your fidelity and love.

For you have exalted over all your name and your promise.

When I cried out, you answered; you strengthened my spirt.

II.

All the kings of earth will praise you, Lord, when they hear the words of your mouth.

They will sing of the ways of the Lord: "How great is the glory of the Lord!"

The Lord is on high, but cares for the lowly and knows the proud from afar.

Though I walk in the midst of dangers, you guard my life when my enemies rage.

You stretch out your hand; your right hand saves me.

The Lord is with me to the end.

Lord, your love endures forever.

Never forsake the work of your hands!

Wednesday, September 3, 2008

Yeah!

Good news! I just heard from the transplant coordinator on Keegan's labs from this morning. Kudos to the new phlebotomist at CMC Legacy for getting the blood on the first try! Poor Bug is bruised everywhere already - hands, feet, elbows. All his numbers from the labs were either in the right range or are getting there, including his WBC and kidney function. Also, the rest of the tests from Infectious Disease came back. We were waiting on one for a virus that really only affects people with compromised immune systems, and it came back negative. He was positive, however, for rhino virus, which causes (drum roll) the common cold & RSV. So, Keegan likely had a bad cold and ear infection that just hit him extra, extra hard becaue he's immune-suppressed. It's good to know that it was just a cold. Still, we were hoping we would avoid having to be hospitalized for things like "just a cold", but I guess not. We knew that was the most likely outcome for illnesses even like this, but it doesn't make it any easier. Our pediatrician today called this "treating his labs." Clinically, he presented with a cold/ear infection, but his labs threw everyone into a panic. Of course, as we said before, we'd much rather be safe than sorry when it comes to Keegan.

We also saw our pediatrician today for a follow-up. She gave his ears the green light, and she said he will likely have a runny nose for up to another week (usually a 10+ day symptom in healthy kids, so it will take Keegan longer to shake). He's had no fever since we came home from the hospital. His tongue is still discolored, but our pediatrician today said she's convinced it's an antibiotic side effect that she's seen in other kids. She said it would go away with proper teeth/tongue brushing in the morning and evening. Evidently, there's a home remedy to make it go away involving Lawry's seasoning salt (who knew?), but Keegan wouldn't be able to rinse afterward. Oh well. Keegan also still has a rash on his arms and forehead. It's likely a reaction from the fever and will go away on its own also. On another good note, Keegan weighed 17.09 lbs at her office today! Way to go, Bug! Maybe he can gain a little bit more before the big 1 year mark.

We posted a few new pictures and a new video, so be sure to check them out. I apologize for the delay in posting them and the shortage of photos. I guess when we started staying in during the miserable Texas heat, the camera didn't get a lot of use. Also, Keegan figured out that he should stop whatever he's doing (that is adorable and which I am trying to capture on film) and smile a big cheesy grin for the camera. It's funny, but it hinders getting those "kodak moments" on film. I promise to do a better job of getting more pictures to you!

In COTA fundraising news, we got a little behind in planning the fishing tournament with Keegan being sick, planning for his birthday, and a few other family issues that came up. We are now looking at a date in the spring that should be better suited to fishing, planning, and less holidays/school events. Thank you so much for your interest, and we will get more info to you as soon as possible. If you are interested in volunteering/planning, please make sure you are on Keegan's email distribution list by clicking the "email list" tab above!

Can you believe Keegan will be ONE YEAR OLD next Friday?! And his ONE YEAR TRANSPLANT ANNIVERSARY is only 16 days away?! We'll be updating on these blessed milestones soon. Thank you as always for your continued support and prayers, and thank you to all of those who went out of their way to help us while Keegan was in the hospital. We are so very blessed to have friends and family that love us all so dearly. We hope you are each doing well. To all of our UA/JCP friends, we're looking forward to seeing you at the 10 year reunion this weekend! Thanks again.