Tuesday, December 29, 2009

Christmas 2009

Whew! We're still recovering from the Christmas whirlwind! As crazy as it was, we are so thankful to be able to celebrate at home and with so much family this year. We were also blessed with a first-ever White Christmas with at least 3 inches of snow on Christmas Eve that stayed in our yard until more snow fell today. We've posted a few new pictures HERE of some of our Christmas fun. We hope that each of you had a blessed holiday. We certainly had a lovely one, celebrating the birth of our Lord and Savior, Jesus Christ.

That's all for tonight. We're snuggling up inside as more snow and cold weather wraps up 2009. We wish you all a safe New Year's Eve and all the Lord's blessings in 2010! More in the new year...and decade!

Tuesday, December 22, 2009

Cardiology Clinic

Keegan had a good, although long, day at cardiac transplant clinic yesterday. The only thing slightly off was his bloodwork, but when is it not? All in all, we decided not to change anything at this point. Dr. Barnes, his transplant doctor, did not want to "rock the boat" this close to Christmas. We are so thankful for that! There are one or two meds we may change/add in the New Year, but other than that, Keegan got a really good report. He had his last H1N1 shot and breathing treatment too. We were happy to get a green light for Keegan to celebrate Christmas at home this year!

Keegan also was a bearer of his annual bags of homemade Christmas peppermint chocolate to the hospital yesterday, and with it, he bore some news for his transplant team. After being questioned and hinted at since pretty much the day after he was transplanted (yes, I'm rolling my eyes at you Kris, Lisa, Susan, and Stephanie!), Keegan was finally able to tell his team that he will be a BIG BROTHER next year. Yes, you read that right! We're expecting a new addition to our little version of "normal" next June. Although not planned and certainly not prepared for, we are trusting the Lord's plan and timing is better than ours. We are certainly grateful for this unexpected gift, and we know that Keegan will be an outstanding big brother. Still, we can't lie and say that we're not scared for what our future holds. The baby and I will be closely followed by our dear perinatologist and our cardiology team at Children's. We'll get a preliminary look at the heart on January 4 and begin fetal echocardiograms in February. Big Daddy (my dad) said that he believes this is God's way of telling us Keegan will be ok, and I certainly pray that he's right. There will be a lot more bumps in our road than other families - birthdays and holidays missed for hospitalizations, explaining why our family can't do all the things others can, etc. We don't even know how to care for a normal baby! However, I am thankful for our amazing transplant team that understands our fears and are always there for us through it all. They truly are more than Keegan's doctors; they're our friends, supporters, and a source of strength. We are always thankful for our amazing family and friends, who we know will lift us up emotionally, spiritually, and even physically through good times and bad. That is truly a blessing learned through Keegan.

Since Keegan was born, I have to admit that the Christmas season leaves me thinking more about Mary and Joseph than ever before. Lately, I've been quoting the adage "I know God won't give me anything I can't handle, but I wish He didn't trust me so much!" I can't help but think that Mary or Joseph must have coined that very phrase!! Can you imagine the anxiety Mary must have had as an unwed mother, accused of breaking the vows of her betrothal? Can you imagine how she might have agonized over the fate of her son? I think I have a little bit better understanding now, not only just as a parent but as the mother of a child with an uncertain future. What about Joseph? Did he worry how he would provide for this new family? Did he lose sleep about whether he would be able to protect his son, keep him from pain, or simply how long he would be blessed to have him to hold? I hope he and Mary worried about these things...it would reassure me that I'm not alone. But I know their faith was stronger than mine. I pray that I can learn to ask less questions of God and trust more, to place my faith in God's plan, to respond as Mary - "I am the servant of the Lord...may it be to me as you have said." (Luke 1:38)

The following is quite possibly my favorite Christmas song ever. I just get it. The love, the fear, the uncertainty, the neverending desire to have it all just be ok. If you'd like to listen to this beautiful song, click HERE. I am so thankful to be spending this Christmas at home with Keegan, and I am even more thankful to have each of you in our lives who helped us get home and stay here. Thank you from the bottom of our hearts. We wish you all a very Merry Christmas!



JOSEPH'S LULLABY - Mercy Me
Go to sleep my son; this manger for your bed.

You have a long road before you; rest your little head.

Can you feel the weight of your glory? Do you understand the price?

Does the Father guard your heart for now so you can sleep tonight?

Go to sleep my son; go and chase your dreams.

The world can wait for one more moment; go and sleep in peace.

I believe the glory of heaven is lying in my arms tonight.

Lord, I ask that He for just this moment simply be my child.

Go to sleep my son. Baby, close your eyes.

Soon enough, you'll save the day, but for now, dear child of mine,

Oh my Jesus, sleep tight.


**NEW PICTURES ARE UP. Click HERE to see them.

Tuesday, December 15, 2009

Update

I find myself apologizing for the lack of posts alot lately, but honestly, we're trying to stay so low key around here that I feel there's just not alot to say. Then, I wait too long and the post turns crazy long! Oops.

The garage sale went very well, raising about $1500 for Keegan's COTA account! This was much needed, as Boston literally drained his account (and then some). We cannot thank everyone who helped or donated items (or just money) enough for your efforts. We hope to be able to do another fundraiser of some type next spring to help bolster Keegan's reserves for next year. Keegan's COTA "campaign" is only considered "active" for two years, but money can be donated to his account for his lifetime. As you can see by clicking the "donate" tab above, we have almost met 75% of our original fundraising goals. COTA has been a lifesaver for us the last two years, helping us with all transplant-related expenses. We know firsthand what a blessing that kind of help can be, and we are so glad that every donation made to Keegan's account enables other families in need to be cared for before, at, or after transplant. COTA is able to guarantee that all funds donated to Keegan's account are available to him as needed, but it also is able to use those funds to help cover the needs of families who may be unable to fundraise immediately. So when we thank you for donating to Keegan's COTA account through events such as the garage sale or just the goodness of your heart, please know that we are also thanking you on behalf of all the transplant kids that COTA helps - families in hospitals far away from their homes, families without insurance to cover the millions of dollars associated with a transplant, families who have lost jobs to be with their ill children. Transplant is a rough road, and it helps immensely to know you don't have to go it alone. Thank you, thank you, thank you for helping us on this road!

Keegan is still at home - for a record 4 months by next Monday! He finally seems to have kicked the runny nose plaguing him since Thanksgiving. As highly, highly annoying winter lock-down is, it seems to be working!! I tell ya, I'm SO looking forward to Keegan getting some new toys for Christmas - I'm getting tired of what we have now! Ha! He has a GI appointment on Thursday, and he has his big cardiology appointment next Monday. We won't run labs again until then. Still waiting to start his more structured spech therapy at Baylor; we'll hopefully get that scheduled soon. He's used all his covered therapy visits through our private insurance, so we have to wait for them to deny it, then for Medicaid to review and approve it. He's still doing well in occupational therapy, but I wish I could say the same for feeding therapy. His medical feeding issues and typical two-year-old behavioral issues seem to have clashed and come to a head. It is very frustrating for us because he has taken to not eating at all some days, and when we try to follow the "behavior modification" guidelines, it very quickly becomes a negative experience. The other frustrating aspect is that it's become very apparent that if he doesn't eat by mouth (just his specialty formula by tube), his GI system is doing SO well (great diapers)! Then the minute we add the food back in, he's right back to the not so great. We'll be discussing it with his GI doctor this week, and I just pray that his weight hasn't suffered from it.

Last post, I told you that Children's had contacted us about using Keegan's picture for donations this Christmas. Well, the e-cards are up! This Christmas, if you would like to make a donation to Children's in honor of someone, you can choose to send an e-card with Keegan's adorable 1-month picture! The photo was taken at Keegan's post-transplant discharge conference in October 2007. Click HERE to see the e-card...and of course, to send one! "Make life better for children" this Christmas!

In other family news, my sister, Alex, had a successful but radical knee surgery today (I think it was called a distal femoral osteotomy but don't quote me, plus some fancy plasma-like substance where her cartilege should've been). Thank you to those of you who follow us on Twitter or Facebook and kept her lifted up in prayer today. The doctor said the surgery went absolutely beautifully! She will be on crutches for at least six week and is facing a very long recovery period. Still, we are hopeful that today's procedure will give her over 10 years before needing a total knee replacement. All this at the ripe ol' age of 27!!

We will post again after cardiology on Monday. Until then, we are trying to enjoy the advent season in preparation for Christmas. Did you know the word "advent" comes from the Latin adventus, meaning "coming"? During this time we are waiting on the coming of the Lord, Jesus...his birth, but most importantly, we are reminded that we are waiting on the Second Coming of the Lord and to prepare ourselves spiritually it. I find so much meaning in the "waiting" of advent. We are constantly reminding ourselves that in our yearning for Keegan to be healed, we must wait on the Lord's timing. It is His plan that matters, not ours. We are waiting to find peace and rest in Him. But because we are most importantly waiting for His final coming, we must strive daily to put our hope and trust in Him, to lay our troubles down before Him, to be His hands and feet here to others. What are you waiting on the Lord for now? We pray that you find it in Him this Christmas.

We wait in hope for the Lord; He is our hope and our shield.

In Him our hearts rejoice, for we trust in His holy name.

May your unfailing love rest upon us, O Lord, even as we put our hope in You.


Psalm 33:20-22



**A few NEW PICTURES are up! Thanks for checkin' in on our Bug!***

Thursday, December 3, 2009

Garage Sale!

It's GARAGE SALE time!! Gray's parents and their friends are hosting a garage sale this SATURDAY, DECEMBER 5, with all proceeds benefitting Keegan's COTA account. The sale will be from 8am-4pm. Spread the word, and stop by yourself! Big thanks in advance to Mark and Linda for their work in hosting this event.

Just a quick update on Keegan. We have increased his shots, despite a lack of weight gain. His hematologist and transplant team felt his white count was too low at his previous dose to get him safely through the winter. Keegan developed a runny nose on Thanksgiving day and had a day or so of elevated temps (not fever range though). It hasn't gotten worse, but he is still battling a runny nose or congestion. We're confident it's just allergies or the cold weather, but it still is nervewrecking for us. We've gotten so comfortable being home for almost 3 months, and we would love to get through the holiday season at home! Still, we know that God has Keegan firmly in His grip, and we are trying to rest in Him.

We have weight checks, GI, and a big cardiology visit left before Christmas, but until then, we are enjoying the Christmas season and cool weather. We missed getting pictures of Keegan during the first snow of the winter yesterday, so I hope it's not the last one! We also got a request from Children's for usage of one of the many photos of Keegan for an upcoming hospital fundraiser, and of course, we said yes. We will be certain to update again with medical updates, pictures, and more info on the Children's fundraiser soon. Until then, spread the word about the GARAGE SALE!! I know there will be furniture and a few other big ticket items available! God bless, and take time during this busy time to remember the true reason we celebrate Christmas, the coming of our Lord, Jesus Christ!

Thursday, November 26, 2009

Happy Thanksgiving

"Be joyful always; pray continually; give thanks in ALL circumstances, for this is God's will for you in Christ Jesus." 1 Thessalonians 5:16-18

I am glad to have a day to stop and remember the many blessings in my life. I would like to think I am thankful everyday, but in truth, I probably go about way too much of my days without praising the Lord for the goodness he has given to us. But today, I am in awe of a single truth. God loved me so much that He sent His only Son to die on the cross that we will once again be reconciled in eternal life with the Father. How can you say "thank you" for that? Everything else that seems so important in life pales in comparision, but I am thankful for these things all the same.

I am thankful that Keegan is home and doing well overall. After last year, I am forever thankful for any holiday, no matter how small, we spend at home. I am more than ever acutely aware that there are hospitals full of families unable to celebrate the way they intended today. I am thankful for the amazing strides Keegan has made in the last 12 months. He has gained 13 pounds, is off IV nutrition, and is taking some food by mouth. His liver, kidneys, and heart are working well, and his GI symptoms are mainly under control. This morning, he woke at 3am with a runny nose, and although he has been otherwise fine today, I know that could end at any minute. We've increased his shots already, and we may have to go to daily shots to help him fight whatever this might be. I am thankful for the medicines he takes to keep him and his heart healthy.

My friend, Amanda, has reminded me that no one else on this earth was chosen to be Keegan's mom but me. Gray and I were chosen to be his parents, knowing the journey that he would walk here. And if that journey were to end tomorrow, I would be grateful for every day, good and bad. This is not the plan I had in mind, but I have never in my life been more certain that the Lord's hand is never far from my reach. And, I am thankful that a family we have never met made a choice in their grief to give my son life! I am thankful that because of Kevin, LaMonica, and Johnston, I can hug my son today and feel God's very presence surround me.

I am thankful for my family, my husband, and my home. I am thankful that I can afford to spend time with my family today with abundant food and plentiful love and laughter. I am thankful for the many people in my life whom I would not have met and loved had it not been for Keegan. I am thankful for the many, many people who have prayed for us, lifted us up, and given us strength in the last two years.

Yes, I am thankful today. And I will be tomorrow and the next day. If tomorrow it were to all be taken from me, I would still be thankful. Because I have put my trust and hope in the Lord, I cannot help but praise Him, no matter the outcome. I pray that you take the time to realize His hand in your life today, and give thanks.



"I thank my God every time I remember you. In all my prayers for all of you, I always pray with joy because of your partnership in the gospel from the first day until now, being confident in this, that He who began a good work in you will carry it on to completion until the day of Christ Jesus...And this is my prayer: that your love may abound more and more in knowledge and depth of insight, so that you may be able to discern what is best and may be pure and blameless until the day of Christ, filled with the fruit of righteousness that comes through Jesus Christ - to the glory and praise of God." Philippians 1:3-6, 9-11

Wednesday, November 18, 2009

Status Quo

Things have been pretty status quo around here. We apologize for the lack of updates; we didn't mean to worry anyone. We just needed to take a break from the computer for awhile. With Keegan being under lock and key at the house, we unfortunately don't have any interesting news to report. Just therapy, doctor's visits, and getting bored with his toys at home.

Recently, we had to stop all of Keegan's solid food except for a few crackers for a day or two because the stress of new foods really tore up his intestinal tract. After a few days, he started to rebound. We enjoyed a couple of days of fairly good diapers, good sleep, and a happy boy, but as we expected, things have started to go back to the old normal. Frustrating. Still, his oral feeding skills are progressing. He can now eat apple slices, and we're working on carrot sticks! He eats stage 2 baby foods very well and sometimes stage 3 foods also. His feeding therapist says he is progressing well and right on target. The biggest challenge is still making sure we don't push him too hard and cause him more pain.

We still have a break from cardiology until next month. Keegan had labs and his breathing treatment today. The respiratory therapist let him watch Finding Nemo during his treatment, and he threw the most massive fit when we had to turn it off to leave. The nurses had a good laugh at that, saying he was the only kid on the planet that doesn't want to leave the hospital! Keegan's labs looked remarkably good for him, except his white blood cell count. We are waiting on word from his hematologist if we need to increase his shots to bring the count up. Last time, she was hoping Keegan would gain some more weight before we had to increase his dose (which he didn't, down again today). We obviously want to keep Keegan as healthy as we can, and a low white count means he has very little defense available. As we've seen before, Keegan's white blood cells don't rise to the challenge of an infection, they run from it. We are enjoying being home so much! We just want to keep him here!

That's about all for now. We appreciate your continued prayers and support for our Bug. He means the world to us, and we are looking forward to spending Thanksgiving at HOME this year! More soon and pictures too. Have a safe, relaxing Thanksgiving, y'all!

Sunday, November 1, 2009

Halloween

Well, Keegan successfully celebrated Halloween at home! Yeah! He even trick-or-treated a little bit, and although he didn't quite understand the concept, it seemed he had fun anyway. He was the courageous lion this year and too cute! We originally thought the Tin Man would be a good idea, since he is the character from the "Wizard of Oz" who gets a heart. However, we couldn't pass up the adorable lion costume, and Keegan did show plenty of courage this year! We were just happy that he wore the mane because the first time we tried it on him, he had a complete meltdown. To encourage him, Gray and I borrowed Dorothy and Scarecrow costumes (thanks, Ben & Abby!), and Aunt Alex wore the bunny costume. We may have looked like a funny bunch, but it worked!

Mamie, Big Daddy, Alex, Oma, and Pops came over for chili, ghost cake, and trick-or-treating. We purposefully went out before dark to be the only ones out and about in our neighborhood, thus minimizing Keegan's exposure. We strategically picked the houses of our friends, and it went pretty well. Keegan wanted to go inside each house, and he didn't quite understand why we were making him take something from everyone (he doesn't yet know the sugary goodness of candy). Still, he LOVED running around the neighborhood, and nothing melts your heart faster than watching that little lion run - mane waving, tail dragging. Too cute! See photos of our Halloween fun HERE!

On the medical front, Keegan has gained 3oz this month. We are SUPER happy with that. as he has had quite a rough month with his GI symptoms. We're still consulting with his doctors on how to handle it. He may have to go back on the oral antibiotic, but we're exploring a few other options. We are hoping not to have to take all the solid foods away, as he is doing wonderfully in feeding therapy. We are trying to introduce new foods very slowly, but it can be difficult not to frustrate him. He's finally made it to stage 2 baby foods, even a stage 3 once, and a slowly widening array of "crunchy" finger foods. Still, it seems to be taking a toll on his tummy. We don't want him to be in pain, but we don't want to backtrack too much either. I know that's a little vague, but it's simply the frustrations of finding Keegan's balance in eating normally, gaining weight, managing pain, and controlling his output.

Thank you for all your prayers for our sweet friend, Hannah. Her celebration of life service was beautiful, fitting for the princess she is. I have seen an amazing number of butterflies lately, one of her favorites. Another child received their angel heart last week, and I just know Hannah had a hand in it. I continue to be inspired by her parents, Amanda and Jason. What an amazing miracle they shared with us in Hannah. I long to have their family's faith and pray that Keegan too will know and love the Lord as Hannah did - a precious child who knew Him so intimately that she referred to Him as "my Jesus." Amazing.

Amanda is a poet, and she writes so beautifully from the heart. I love this poem that she wrote about Hannah. It could easily be Keegan or any of the other little fighters we know. It reminds me every day to be grateful for, as our friends Paul & Angie put it about little Avery, the gift of getting Keegan - of the blessing of getting to love him, hug him, and be inspired by him. Please continue to pray for the families of all of our friends, especially Hannah's, and of course, for Keegan. Amanda's poem describes our lives every day with our miracles. Not the days we would have chosen, but the ones we are blessed to have.

What is the plan He has for you?

What is the plan he has for you?

I ask most every day.

It has to be huge, or He wouldn't let you stay.

What is the plan He has for you?

Is it bringing people to their knees and showing everyone Satan's defeat?

Is it bringing praises to his name or glory all the same?

Is it showing the world that miracles occur?

What is the plan He has for you?

I long to know the truth.

God, will show me one day soon!

Sunday, October 25, 2009

Hannah

Our sweet friend, Hannah, went home to be with the Lord last night. Tonight, she is whole and dancing with the angels. Hannah talked to her angels and saw them frequently, and I know without a doubt that she truly was one here on earth herself.

Almost two years ago exactly, I took Keegan to his very first outpatient heart transplant clinic appointment. As I checked in, a little brown-haired girl with sparkles in her eyes peeked at Keegan under his blanket, tugged on my shirt, and said "that's my bruh-der in there." It was the first time I had laughed in a few days. I was scared to death that morning, hanging on by a thread, wondering what was in store for Keegan. And all that changed in a moment when I met Hannah and her mom, Amanda. Hannah thought Keegan was her new little brother, Cooper, but the two of them were brother and sister in a different way. Siblings in Christ, brought together by the life-saving gift of a heart, and truly both angels here with us. Hannah and Amanda gave me hope that morning that we could do this, that there was life, beautiful life, after transplant.

For a month or so, Hannah and Keegan were on the same clinic schedule, and we saw them almost twice a week. I smiled every time she'd run down the hall yelling, "Dr. Fixler! Dr. Fixler! I'm here!" Yes, you were, sweetie. And you'll always be here with us. I laughed so hard I cried when Amanda would ask, "what color is this (pointing to something white)?", and Hannah would answer "the color of Dr. Fixler's hair!" And as Keegan's first annual heart work-up approached, and rejection was my worst fear...there she was again. Tickling Keegan, and saying to him while pointing to her cath site, "you'll have a boo-boo, but don't worry, it doesn't hurt too bad." Instantly took the fears away.

In the last few months, I saw Hannah at her worst. But even on her bad days, she shined. I am beyond blessed to know her, Amanda, dad Jason, and little Cooper. How could a family in so much pain support me even more than I supported them? Faith. That's the only explanation, and they have it in spades. Last Tuesday, I went to see Hannah after her first round of plasmapheresis. I changed her sheets and cleaned up her doll so she could rest after the stressful treatment. She was so tired, but she blew the most perfect bubbles as nurses Lorin and Lauren drew her blood. I told her I had to go and asked for my usual hi-five for Keegan. When I realized I had no pockets to put it in, she said I should put in my purse! Of course! So, I gathered hi-fives from everyone else in the room, and we put them in my purse for Keegan. I entered her room feeling completely overwhelmed, and I left completely at peace. That was the effect she had on you. The peace of the Lord and her angels. I will treasure that feeling forever.

Thank you, Hannah, for just being you, for inspiring me, for fighting the good fight. Thank you, Lord, for sharing her with us for even a brief time. Please, please keep the Collie family in your prayers. They need to be surrounded in love and prayer right now. We are heartbroken for you, Amanda, Jason, and Cooper. We love y'all so much. We miss you, sweet Hannah. Also, please lift up the nurses, doctors, and staff at Children's who loved Hannah so much and worked tirelessly to heal her body. They are grieving just as much tonight. Lift them up and renew their spirits, knowing Hannah is with them as they treat other heart kids.



“For many years I’ve known and believed God’s word, but I’ve never had to stand upon it when everything else around me seems to be sinking – to trust what His Word says when the circumstances don’t make sense – and to trust in His future promises when all I can feel is sorrow.” Unknown



For I am convinced, that neither death nor life, neither angels nor demons, neither the present or the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord. - Romans 8: 38-39


Hannah Olivia Collie 8/30/04 - 10/25/09 - forever with the Lord, forever in our hearts

Tuesday, October 20, 2009

Little Update

I'm sorry I didn't get to update at the end of last week like I said I would. Even during "winter lockdown" things can get pretty busy! Also, we are STILL having problems with Keegan's email account (keeganharrison@yahoo.com). It will not send emails out but can receive them. We've asked Yahoo to look into it, but they said they "hope to have it resolved by the end of the month." Gee, thanks. Sure hope it's sooner than that!

Keegan got a good report from immunology. They don't want to put him on antibiotics preventatively because that can cause his intestinal issues to worsen. We'll see them again at the beginning of the year. We changed a few things up at his GI appointment. They ordered an abdominal sonogram because he had gained an odd amount of weight, even though he wasn't processing his feeds properly. The sonogram didn't show any fluid build-up, so we're not sure what that was about. His weight came down a little bit by the end of the week when he went in for his monthly breathing treatment. Obviously, we want Keegan to gain weight, but the doctors have to be careful that he is "good" weight. We are also hooking his tube up to an extra bag when he's sleeping that allows the formula he can't digest to have somewhere to "escape". It seems to be helping him with the restlessness, but sometimes it's difficult seeing proof of his motility problems. Today, we are reducing his rate of feeds during the day to see if that helps his digestion. The bad part of that is he has to wear his backpack longer during the day, as it takes longer to finish his volume for the day. Hopefully, this is a small step backwards, and he will soon be headed back in the right direction.

At therapy, Keegan is doing wonderfully. He's tried several new foods, and his oral skills are progressing well. The new foods may be one reason he's having intestinal problems - we have to go very, very slowly in order to let his tummy adapt. OT is going well also, and we will likely add more speech therapy in soon.

Thank you for all your prayers. We really do feel them every day. We would greatly appreciate you continuing to pray for Hannah, Nate, and Avery. Everyone is stable at the moment, but all three of these young warriors are fighting hard to stay there. I know their families can feel your prayers too. The Lord provides for our souls in so many ways, and the prayers of family and friends are just one way. I know that in our weakest moments, one of you is praying for us. That alone brings such comfort. Thank you again for your support of our family. Have a wonderful week, and enjoy the few new pictures that are up HERE.

"But I trust in you, O Lord. I say, "You are my God!" Psalm 31:14

Sunday, October 11, 2009

Update

***Keegan's email account is having some problems and will not send anything. We apologize for no "update emails", but we hope to have it fixed soon. Thank you for understanding.


First, let me apologize for not getting the update email out for my last post. I just realized that it is still sitting in my draft folder! Oops! So, just to recap - Keegan's been home since his transplant-aversary on 9-19. No further severe pain since we started him back on the abdominal migraine medication. This is going to be a relatively short post because Keegan has two big appointments with GI and immunology this week. So, I'll probably update again at the end of the week.

Things have been relatively quiet around here due to "winter lock-down". Keegan's labs looked pretty stable for him last week. That was stressful though since it took WAY too many tries to find a vein, which again brought up the possibility of needing a port again. If he had a port again, it could be used for IV access when he's inpatient or in the ER, leaving his peripheral veins in better shape for his blood draws. Of course, no decision has been made about that yet. It's a difficult decision - could be seen as unneccesary if he stays feeling ok, but you hate to need one and not have it when he's really sick.

Keegan has had quite a bit of difficulty processing his daytime tube feeds lately, and we're trying to make a decision about what to do from here. It's becoming a daily battle and makes him quite miserable. Our GI appointment tomorow should help. We will be discussing whether or not to go ahead and sink his tube lower into the intestines, bypassing the stomach. This is very common in kids like Keegan, and honestly, it's not hard to do since he already has a tube. The good things are it can be done in radiology without sedation, and it's there when we need it but doesn't have to be used if he doesn't. The only bad thing is that it's one more procedure/thing to have to worry about. Prayers for wisdom on this front would be much appreciated. It has been driving us all a bit crazy lately.

I would also like to ask tonight for prayers for three of our dear friends you have heard of a few times. Nate received his angel lungs on Keegan's transplant annivesary. Things were going pretty well for him until he developed a clot which blocked blood flow to his new left lung. Unfortunately, Friday they had to remove the left lung. He is doing better now, although he will be medically sedated at least for a few more days. Please pray that this is the last mountain little Nate has to climb and for his continued improvement. Also, Miss Hannah was admitted back at Children's last week for what was initially thought to be another rejection episode. Praise God, it was not her heart at all! Her little kidneys had been stressed out and shut down. It scared everyone for a few days, but she is now on the floor and hoping to go home soon without having needed any invasive procedures. Lastly, please continue to pray for little Miss Avery. Her family is waiting on some more testing of her blood to give them a better idea of how her bone marrow is functioning. It is an extremely trying episode for them, and they are very anxious to know what they can and what it might mean. Please pray for the peace of the Lord to comfort them and for their rest to come from continuing to fully trusting in His ways as they always do.

That's about all for now. We'll update by the end of the week with any new information, and hopefully we'll have some new pictures soon. Also, we are still working on getting a new site/blog started for Keegan, as our time being supported on the COTA platform is running out. If you know of anyone in web design that might be willing to donate their time/effort to getting it set up, please let us know. Thanks so much. Have a wonderful week.

Wednesday, September 30, 2009

Update

Oh my gosh, tomorrow it will be October! What?! I can't believe it's already time for fall, but I could be duped by the upper-80s/lower-90s temps we're still having here in Texas. Still, I love fall with my whole heart and soul. I'm the crazy one who's favorite holiday is Thanksgiving (don't even get me started on people that skip Thanksgiving for Christmas...is there anything better than cool, crisp air, football, crazy family, and tons of food? I think not.) I miss fall in Tennessee because it was really autumn!! A whole season, as opposed to here where there are only two seasons - hot and a-little-less-hot. But I digress, you really stopped by to check on KEEGAN, so here goes.

Keegan was discharged from Children's yet again on his heart transplant-aversary, in case that wasn't clear from the last post. We still are a little baffled as to what happened. It could very well have been a really bad bout of Keegan's version of a kinked or overlapping intestine that we failed to capture during a sonogram. Another thought came out of meeting with our doctors and the ostomy/wound care team though, and so we've pursued that end successfully since then. If you remember, Keegan was treated with an anti-vomiting medication at the beginning of the year that all but stopped vomiting that some of the GI docs was due to a motility issue combined with "cyclical vomiting" or "abdominal migraines." We stopped it in April when Keegan's liver went haywire because there was some, albeit very little, evidence of liver complications on this med. Now that his liver is stable, we readded the medication, and low and behold, Keegan's g-button has not been leaking like crazy, he's gained some weight back, and no pain episodes in two weeks!! We've also shifted most of his feeds back to the daytime (a major step back in reducing his tube feeds, but not insurmountable) when he seems to be able to process his feeds better. It seems quite evident that Keegan still has some hefty motility problems, and maybe it was time to "hit the reset button" as one of his doctors put it. The plan is to leave Keegan on this medication as long as it is working and no other problems arise.

Additionally, we have noticed in the last few weeks that Keegan is not responding well enough to his GCSF shots, which help to boost his white blood cell count. We are still waiting on confirmation from hematology, but we anticipate going to needing the shots again every other day. If he gets sick, we obviously go back to shots every day. We will also meet with his immunologist in the next few weeks to discuss additional measures to boost Keegan's defenses throughout this winter.

That's about all the medical news fit to print at this point. We have been trying to get outside every minute we can, and Keegan is really enjoying it. Winter lock-down is in full effect, so the only places he goes are home, the hospital, and therapy (as long as they don't get too many kids out sick). We're just praying for good weather to stick around for awhile!

There are a few new pictures in the September photo album to wrap up the month. Updates may be fewer and farther between if Keegan stays well because we won't be able to do much around here. Thank you for continuing to care and pray for our family. We're nervous about making it through the coming months, but we know the Lord will provide no matter what awaits. Thank you so much, and Happy Fall, y'all!!

Maddie

P.S. - Have you voted in the Children's Miracle Network/XBox Great Gameroom Giveaway yet?? Then, what are you waiting for?? XBox will donate the Ultimate Gameroom to the THREE hospitals that get the most votes. You can vote 10 times a day, every day throughout the contest!! How great would it be for all the kids at Children's Medical Center Dallas to have such an awesome gameroom available to them? Hurry! CMC is only ranked 50th now, so....

VOTE NOW!! http://xbox.childrensmiraclenetwork.org/

Saturday, September 19, 2009

Second Heart Birthday

Two years ago today, we were preparing to transport our one-week old son on ECMO to the heart catheterization labs to determine if his little lungs were capable of supporting a new heart. Today was the day we placed Keegan’s life in the hands of our Lord for better or worse. Today was the day we would find out if we could hold out hope for a miracle or start preparing him to go home to Jesus. We began the day unsure of our future but confident that the hands of our God were stronger and surer than ours could ever be. We ended the day with physical proof of that faith, watching the most beautiful heart beating unassisted through an open sternum in Keegan’s chest, seeing the love from another’s loss save our only son.

“I know that you can do all things; no plan of yours can be thwarted…You said, ‘Listen now, and I will speak; I will question you, and you shall answer me.’ My ears had heard of you, but now my eyes have seen you!” Job 42:2-5

On this day last year, I wrote of my hopes for completely normal days for Keegan. Now I know that “normal” can mean many things. Our normal includes medications, syringes, machines, masks, tubes, doctors, and therapy. Our normal means going nowhere but home and the hospital during the winter. Our normal is ERs, ambulances, an inpatient stays at the drop of a hat. Our normal is walking into the ER, floor, or ICU and having everyone say, “good to see you,” rather than “sorry you’re here.” Our normal is celebrating our son’s second birthday knowing that he has already spent almost 1/3 of his life living in the hospital during 10 inpatient stays, had 2 major surgeries requiring heart-lung bypass, spent 6 days on ECMO, has over 11 surgical scars, and had general anesthesia over 28 times. Knowing this does not make it okay. It will never be okay, but it is what it is. And for Keegan, it’s just life. Just life. And he loves it.

Last year, I wrote of my fears of not knowing how Keegan’s first months affected him and what the future would hold. After over 9 months of inpatient days in the last year and seeing first hand what rejection looks like, I still have fear for what the future holds, but I have faith we can get through it. Today, I sit at Children’s once again with Keegan, thankfully preparing to be discharged. I pass by the CVICU where we waited and prayed. I watch other families experience the joy and despair that is ever present with a “heart kid”. As I chat with doctors, nurses, and technicians, I realize they are now my friends, and they know my son almost as well as I do. There is comfort in the familiarity, but it doesn’t make it any easier. Keegan always surprises me, and this year, I pray for more surprises. But I’m no longer na├»ve enough to think everything will be fine. The longer we are blessed to have him, the more I realize how strong he truly is. The Lord made him knowing his broken path, the many struggling hills to climb, the twists and turns, and the beautiful views. He knows the innermost workings of our son’s body, and that sometimes has to be enough for us.

“We have a Father in Heaven who loves us specifically and gives us things to do and, because he loves us, will cause us, at times, to have our souls stretched and to be fitted for a better world by coping with life in this world.” - Neal A. Maxwell

Last year, I took this opportunity to tell you more about Keegan’s first week. This year, I’m humbled by the story of a very precious angel, Johnston. In the last few months, we’ve been blessed to get to know Keegan’s donor family, Kevin & LaMonica and their new son, Kingsley. They are such gentle, caring, and strong people and are cherishing having handsome Kingsley to love. But this time two years ago, their loss was unimaginable. Johnston, their first born son, had stopped breathing at home when he was five days old, the day we listed Keegan for transplant. Although Kevin was able to revive him, Johnston had suffered terminal brain damage. Two days later, they made the choice no parent should have to make and decided out of love and selflessness to allow Keegan to live by donating Johnston’s heart. The boys were less than six hours apart in age, and Johnston was a mere pound bigger than Keegan. They were the same blood type. Firstborn sons, they were a match in so many ways. Where Keegan was broken, Kevin, LaMonica, and Johnston made him whole again. Two years ago today, they CHOSE to face my greatest fear in this world by sending Johnston into an operating room, knowing he would not come back to them. And they did it with more grace and love than I ever thought possible.

Today, I know that Johnston continues to watch over Keegan, giving him strength and hope. I know he watches over Kingsley and his parents. I hope that we make him proud. I hope he feels the love we have for him. I know that he is celebrating in every milestone Keegan reaches, and I know that he is holding Keegan’s hand with every burden. More than anything, I know he is whole, healthy, and consumed with the love of the Lord, Jesus Christ. If Keegan meets Johnston before we do, I know that his best friend will welcome him with open arms. What peace that brings to us.

“Jesus turned and saw her. ‘Take HEART, daughter’, he said. “Your faith has healed you.’ And the woman was healed from that moment.” Matthew 9:22

As another day in the hospital dawned this morning, I awoke frustrated and disappointed. Yet again, I could not heal my son. I could not make the pain go away, and I still didn’t have an answer to give him peace of mind as to why he must fight day after day. As a mother, I can think of few things that hurt more than knowing you’ve failed to protect your child. But this year, my faith has been renewed. The promises the Lord has made are more clear to me now than ever before. Keegan continues to shine as a beacon of hope in a broken and battered world. His smile can heal the most wounded of hearts. The face of God shines in him, and I don’t know that I could ever be so blessed. I have met the most wonderful people in the last two years through Keegan – children with such courage and faithfulness that the strongest man would feel weak in their presence; parents with strength and dignity tempered by pure love as they continue to fight for their children. Doctors, nurses, therapists, and technicians who care for children day after day as if they were their own. It is life I didn’t want and never imagined, but I couldn’t have it any other way.

We love you, Keegan. Keep fighting, Bug, and sharing your story and love with the world. And this time next year, we will once again stand in awe of you, our greatest blessing.

“On that day, you will say: I will praise you O Lord…Surely, God is my salvation. I will trust and not be afraid. The Lord, the Lord, is my strength and my song…Give thanks to the Lord. Call on His name. Make known among the nations what He has done, and proclaim that His name is exalted. Sing to the Lord, for He has done glorious things! Let this be known to all the world!” Isaiah 12:1-5

Maddie

**New pictures are up. Please click HERE to see them. Thank you.

Friday, September 18, 2009

Back Again

Let's start with the good news...Keegan's heart biopsy results came back with ZERO REJECTION!! Awesome! Keegan loves his heart!

And now with the bad news...Keegan was admitted to Children's last night. Yesterday afternoon, he was in an immense amount of pain, and he was clutching his right leg, refusing to put weight on it. We took him to the Legacy ER to check it out. There was some concern that he had developed a blood clot after his biopsy on Monday. When we got there, the ER attending suspected an intusussception (where intestines roll over each other). Keegan can have these and come out of them on his own usually, but the thought was he was stuck this time. We were transported by ambulance downtown for an ultrasound of his abdomen and treatment if necessary. By the time we got to ultrasound, they didn't see anything. They admitted us overnight for observation due to Keegan's medical history.

The pain episodes didn't stop until around 4am, when he finally got some loratab. He slept for about 4 hours after that. This morning, he's lethargic, but no pain yet. He's on IV fluids, but he has not had a wet diaper in awhile. We're watching this closely because his bladder was very full on the ultrasound. We drew labs to see where he stands on that, but no results yet. The other thing we will be discussing today with his team is getting a new port. Keegan's been stuck over 17 times since last Friday, and it's getting more and more difficult to find access. He has a finicky IV in his ankle right now. We're praying it stays with us a little while.

More when we know more. It is still frustrating to watch Keegan struggle and have diagnostic tests come back "normal". We are praying for patience and wisdom for the doctors as we try to help Keegan get back to his happy little self. Thank you for praying with us.

Monday, September 14, 2009

Cath Lab Update

UPDATE: 9:15pm - WE ARE HOME!! We scheduled Keegan for labs next week, and bid adieu to the hospital after a tiring 11 hours. If he needs blood next week or in the next few as we tinker with his meds, it should be done in the infusion suite at Legacy, not inpatient! Didn't get to his breathing treatment today, so we'll do that this Wednesday at Legacy. Keegan's echo showed improved function from this time last year! Well, I'll be! The only infusion he had to have was IV fluids for most of the day. He seemed to be hit very hard by anesthesia today, but no huge saturation problems. He is sleeping soundly now in his own crib at home. We added some NEW PICS to his "Keegan is TWO" photo album from today. One day at clinic, I"ll really document, but this was good enough. Thank you so much for your prayers and support today. I really can't tell you how much the words and prayers of encouragement bouyed our spirits throughout the day. We are blessed.

UPDATE: 2:20pm - Keegan's resting comfortably in the post-op recovery area, which unfortunately now is in the old CVICU. Really not happy about the bad memories here, but at least we're not in K's old room. No one is right now, thankfully. They actually had to cut in Keegan's jugular and femoral veins (neck and groin) for the cath, so he has to lie still and prone until at least 3pm. After that, we'll go back the cardiology clinic for the rest of the day. They did bring xray to him up here, so one more thing checked off the list. More soon.
Dr. Dimas just came to update us from the cath lab. They are extubating and about to wake him up. They had a hard time getting a line in him (duh) to get started, but we able to find an open vein in his neck to go in for the cath & pictures. She brought us some pics of his BEAUTIFUL heart - all arteries and coronaries look wonderful! Blood counts were lower but ok when they started the procedure, but we'll check when he's awake again to be sure. Didn't hear about his pressures, but I'm assuming they were good. Will get to see him when the bring him to the recovery area soon.

Still have a LONG day ahead with post-op recovery, xrays, echo, breathing treatment, etc. Did his EKG before the cath, so at least that's out of the way. More soon. Thank you for your continued support, prayers, and faithfulness.

Sunday, September 13, 2009

Happy 2nd Birthday, Bug!

Well, I certainly meant to wish my beautiful Bug, Keegan, a happy birthday yesterday, on his real birthday, but young sir has kept us quite busy the last few days. Thursday evening, we started to see some clear drainage coming from his nose. We didn't think much of it - didn't have a fever, didn't seem too lethargic, wasn't coughing, sneezing, tachycardiac, or breathing too heavily. Everyone we know is suffering from allergies, and the cedars lining our house to the west certainly don't help. Friday, it was worse, and he had no energy, high heart rate, and was breathing pretty quickly. After a very short nap, he woke up with a temp just under 99, and by 4pm, he'd spiked to over 101. We let the transplant team know, but I was busy setting up for his birthday party and trying to finish icing three dozen banana cupcakes. At 5pm and with about 8 cupcakes left to decorate, our transplant coordinator called back to tell us we needed to bring Keegan to the Legacy ER for a flu swab and blood cultures. Grrr. So in the pouring rain, we ran across the street to the ER. The attending doctor was standing in the door of our room as we came in and had calculated the days we'd been ER-free. Gee, thanks. Flu swab was negative. A nurse suctioned the heck out of his nose, and after 4, yes 4, attempts at a line for a blood draw, a finger prick came back with some wonky numbers. By 9:45pm, his heart rate had come down from the 220 range; he was breathing better, and three pages to the transplant attending had gone unreturned (thankfully, our cardiologist was not the one on call). Gray and I said "get us out of here, and we promise to bring him back the second he goes south". Luckily, the ER team at Legacy knows us well enough (5 visits in the less than 13 months they've been open, and we spent 9 months inpatient and in Boston in between), that they handed us our walking papers.

By Saturday morning, Keegan had noticeably more energy and wasn't draining as much. We called all the party invitees and decided to celebrate the momentous occasion if all were comfortable coming. And party we did! Keegan received a ball tent and wiggle tunnel from Mama & Daddy (don't tell him his occupational therapist recommended it for upper body strength!), which he seems to really enjoy. Y'all may remember Hurricane Ike blew through on last year's bday, and it poured down again this year. Not to fret, we simply blew the baby pool up in the den, filled it with balls, and the kiddos had a grand ol' time.

This year was a monkey theme, and instead of gifts, the attendees donated money towards some new wagons for the hospital. In honor of Keegan's second birthday and transplant anniversary, we are ecstatic to be able to donate THREE wagons to Children's Medical Center due to the generosity of our family and friends. Thank you so much! BDAY PICTURES ARE UP!! ENJOY!!

Today, Keegan was still draining a bit but gradually improving. We've been in contact with his team, and the cultures and PCR continue to be negative. They have alerted the cath on-call team for tomorrow about what happened, but it will be up to the anesthesiologist in the morning to determine if he/she is willing to intubate him for his annual catheterization and biopsy in the morning. While this yearly event is exhausting and nervewrecking, we desperately want to get it over with tomorrow and not have to postpone due to a runny nose. If all goes well, we'll post tomorrow when he's out of the cath lab. This will be Keegan's 28th time to receive general anesthesia in the last two years, and each time presents us with renewed fears, especially as he has had trouble with his oxygen levels the last few times post-op. Ironically, I'm more afraid of being admitted this time due to blood issues than rejection. But I guess that's a good thing.



To my sweet son - Two years ago yesterday, I waited in my hospital room, with no baby to hold, wondering what the future held for you, hoping that in two years, I would be celebrating your birthday with you. On this day and at this time two years ago, I was waiting to see you again after you had been gone over 10 hours in the OR, and as I watched a machine keep your blood going, I again wondered if I would get to celebrate this day with you. I never in my wildest dreams thought the life of a transplanted child would be the one we would live, but I am thankful every day for this walk, whatever it brings. Today, I still wonder if and pray that in two more years, I will celebrate this day with you in my arms. It's a fear I will never let go of but one I am more comfortable with as you show me how strong you are. I love you so much more than I ever thought was possible. I love your smile and your laugh, but most of all, I love your heart.

To Kevin, LaMonica, Kingsley, and most of all, Johnston - I couldn't have said a single one of these things without your love and sacrifice. My greatest fear is one you faced with courage, selflessness, and the grace of the Lord, Jesus Christ. Happy Birthday, Johnston. You are our strength.



O Lord, you are my God;

I will exalt you and praise your name,

For in perfect faithfulness, you have done MARVELOUS things,

Things planned long ago.

Isaiah 25:1

Friday, September 4, 2009

Update

Please forgive us for the delay in posts. Things have been a little busy around here - good busy. Of course, we've had the standard therapy and doctor visits. Keegan continues to excel in occupational therapy. We are still working on his upper body strength/coordination and balance; we have also begun more intense focus on his visual/fine motor skills (matching pieces, stacking, etc). In feeding therapy, he has not progressed to any new foods, but his skills are showing some improvement (spoon feeding rates about 8-9 months of age now). We've also begun working with a feeding psychologist who is helping teach Gray and me how to work with Keegan at home. He continues to do better for the therapists than for us, but we're told that is expected. It's definitely a different approach than we're used to, but we're anxious to do whatever is necessary to help. One of the first things she explained to us was that Keegan does not understand normal hunger cues due to his medical history. He has no idea what the feeling of hunger means or that eating will make it go away. That concept really gave me some understanding as to why this has been so difficult for him. Again, eating is a learned behavior, and it will come back to him in time. Lastly, in speech therapy, he has begun having baby talk "conversations", which are hysterical! I'll have to get that on video! He still only says "hi", "bye", and "daddy", but he's imitating a few more consonants now. He kind of made the sounds for "mama" this morning in therapy, but he was playing with his cars with the therapist and not even looking my direction. I'm still waiting for that day!

As for doctor visits, we have been to GI twice. Keegan had lost over a pound due to his intestinal problems and a leaking g-button. We switched his button again last week, and he has begun gaining the weight back. Yesterday, his GI doctor said not to make any more changes for at least two weeks. We're not to adjust his tube feeds again until he is completely off the oral antibiotic. His dose will decrease again in two weeks and then be done a month after that if all goes well. We mapped out a plan for what to do if his symptoms get out of hand, and I feel better now that a setback won't mean going all the way back to the beginning. Keegan's liver numbers are still creeping up, but to keep his counts stable, we will check a full panel of liver numbers at his cardiology annual on the 14th. Keegan actually has NO doctor visits, just therapy, scheduled for next week, an early birthday present for him!

This past Tuesday, we did an "in-and-out" stay with Keegan at a local nursing home, the product of a loophole in the program that makes Keegan eligible for Medicaid coverage. The law is written as a "calendar day", so we checked in at 11:45pm and left by 12:15am. It was a small nuisance for the benefit of coverage and nursing care for this winter, except that it screwed up his sleep schedule for at least two days. Medicaid will cover our "third car payment", aka Keegan's formula and allow us to have some of our best nurses from Children's care for Keegan this winter at home so that I can run errands and whatnot during "lock-down" season. Maybe I won't lose my mind this winter afterall!

I have been weighed down lately with worry and anxiety for the many events now approaching - Keegan's second birthday, transplant anniversary, cardiology annual, flu season and "lock-down", etc. Although his birthday and anniversary are blessed events in our lives, they still bring with them plenty of emotions and unpleasant memories, especially as we continue to get to know his amazing donor family. His cardiology annual will be Sept. 14th; he will have labs, chest xray, echo, EKG, bone age scan, cath, and biopsy (and probably a few other things that I forgot). Our biggest concern is his catheterization and heart biopsy - Keegan has never, not here or in Boston, made it out of the cath lab without needing blood. And brilliant mom convinced the hematologist to stop his epogen shots for a month, way to go. We have now been home four months, and I'm not ready to end this streak. Of course, flu season and swine flu are scaring the pants off us too, so it will be a long, long winter in the Harrison household.

I knew my worries and concerns were getting the best of me recently, which in turn made me feel guilty for the other things I was neglecting. I could feel a gentle tug every time my mind would fret to put the problems aside and move on. I prayed, asking God to keep Keegan safe and help him through, to give us strength and health through the winter - but I never gave up that control I sought in my anxiety. Then, as I was driving today, a song called "Let It Fade" by Jeremy Camp came on the radio. (You can hear it HERE.) All of a sudden, that gentle tug became a whap on the side of the head. God has promised that if we let go of those worries, walk in faith, trust in Him, continue to rejoice in the blessings He has given, we will find peace and rest. I live by the promise made that our sufferings are made perfect in Him - Keegan reminds me of that every single day. But I cannot predict what lies in store for our family - not tomorrow or this winter or ten years down the road. If a let that anxiety crush me, I cannot embrace the joy of today. I can't be a good mother, wife, daughter, sister, or friend. I don't need to worry because God is not shaken by what awaits us - He will be there for us to carry us through it.

I apologize for the long post, but it's something that I needed to say. I invite each of you to offer up one of your worries, even if just for today. Ask God to fill that space in your heart, and see what kind of peace you will find. It doesn't mean you'll never worry again - you are human afterall. But if we start to stand on HIS grace, instead of our own two feet, I think the change will be amazing.

"Rejoice in the Lord always; I will say it again - Rejoice!...Do not be anxious about anything, but in everything, by prayer and petition, and with thanksgiving, present your petitions to God. And the peace of God, which transcends all understanding, will guard your hearts and minds in Christ Jesus. Finally, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable - if anything is excellent or praiseworthy - think about such things. Whatever you have learned or received or heard from me or seen in me, put into practice. And the God of peace will be with you." Phillipians 4: 4, 6-9

Monday, August 24, 2009

Update

Well, not a lot of new info on the medical front, but keep reading! GREAT news to wrap up this post!

Keegan's intestinal problems continue to be a daily battle. Some days are ok, and some are far from it. There doesn't seem to be any continuity right now, but he's hanging in there. He had a horrible diaper rash flare up last week, but it's better now (leading to lots of "oxygen therapy", aka nekkid time!). He also had at least one intussusception last week, but it was pretty fleeting as far as they go for him. Because this isn't the worst he's been and we're not sure when things will be better for a prolonged time, we'll probably try to forge ahead with the antibiotic wean soon. Labs from last week were pretty stable, except for his liver numbers creeping up again. Even though they seem to be going up, we're not going to torture Keegan with repeated blood draws. If he appears symptomatic of anything, we won't hesitate to run them again. Until then, we'll let him have a break from the needle, since there's not much we can do about the numbers anyway.

Keegan's hematologist still didn't want to change his shot regimen at our appointment last week. As for his white count (neutropenia), he is dropping more in between shots than before, but he is still spiking up for at least 12 hours in response to each shot. Even with the shots, Keegan rarely makes it into the normal range. If his numbers continue to fall between Sunday and Wednesday doses in the next month, we may increase his Sunday dose, giving him more of a consistent boost throughout the week. If he spikes a fever or gets sick over the winter at all, we were instructed to go to daily shots immediately until given the ok to go back to our normal routine.

As for his red count (anemia), the doctor would have preferred to wait at least another 4 months to attempt a wean. That would have been around January, one of the worst times for Keegan to try medicine changes. We'd hate for him to get sick in the winter and return to being dependent on blood transfusions again. SO, since we have a little over a month before winter lock-down, I convinced her to let us try going without that particular shot for just thismonth. We know the warning signs that he's becoming too anemic, and we'll be checking levels in a month at his annual transplant clinic. There's one other benefit to this trial - a better idea of his kidney function. The shot he gets is actually a hormone supposed to be produced by the kidneys and one of the first signs of kidney troubles. We can't get an accurate read while he's on this medication. If his hemoglobin begins to drop again off the med, we can test his natural levels. Too low indicates his kidney function may be worse than we thought. Let's hope that's not the case.

This past Saturday, Keegan was super lethargic, tachycardic (high heart rate), and had an elevated temperature, not quite a fever though. We were nervous, but he seemed to recover by Sunday. Just in time too! We received four free tickets to the Frisco Roughriders (Rangers' farm team) game Sunday night and invited Aunt Alex to come with us. Keegan enjoyed it for about 45 minutes before becoming WAY over-stimulated. We left by the fourth inning, but it was fun while it lasted. We were sporting a mix of Rangers and Boston gear (I may be disrespecting my Texas roots, but Go Sox!). Hopefully, Keegan will be more into the game and less into the stairs in the stands by next season!

NOW for the wonderful, blessed news you've been waiting for!! Recently, we were overjoyed to receive an email from Keegan's donor family announcing the birth of their beautiful new son, Kingsley, on August 4th. Congratulations, Kevin & LaMonica! As you know, we exchanged one letter back and forth just after the transplant but had not been in contact since then. You can imagine our joy and surprise to see Kingsley's adorable face in our email box! Last year, I shared with you that Keegan's heart angel, Johnston, was born a mere six hours after our Bug. God called him home unexpectedly, but his amazing heart and spirit continue to spread happiness and the love of Christ every day to so many. Please keep Kingsley, Kevin, and LaMonica in your prayers at this special time. I know they will appreciate it greatly. We are looking forward to getting to know this selfless family and watching Kingsley grow, knowing that he has the best big brother in the world watching over him constantly.

Again, thank you for your prayers for Hannah. She dealt with a brief setback due to infection but is looking forward to going to the floor tomorrow and celebrating her fifth birthday in style on Sunday! Can I ask one more favor? More prayers for sweet Carter, back in the hospital with a possible infection and low blood counts again. He is hoping to go home soon and avoid a trip back to Boston at this point.

Well, I think that's enough! I hope you're still with me because there are NEW PHOTOS up, including a few LaMonica sent of handsome Kingsley. We can never thank you enough for your faithfulness and love for our family. We can feel your prayers lifting us up daily. Thank you.

Tuesday, August 18, 2009

Update

Keegan's having a bit of a better week with his intestinal problems. He is really excelling in occupational therapy, mainly working on his upper body strength now. Feeding therapy isn't really progressing yet, but it will just need time. We will run a full panel of labs and do his monthly breathing treatment tomorrow. Thursday, we have an appointment with his hematologist. It seems Keegan isn't responding to his shots for his anemia and neutropenia the way he used to, so we will be discussing what, if anything, we're going to do about that at this point. We are also anticipating trying to wean his antibiotic by the end of the week. Since Keegan's diarrhea is slightly improved, trying to wean him off the medication now will give us a better idea if it is helping, hurting, or doing nothing at all.

We finally spoke with Keegan's nephrologist about the ultrasound of his kidneys done last week. His left kidney is atrophied and not filtering much at all. His right kidney is enlarged from taking up the slack, but it is, at least, taking up the slack for the left one. The other good news is that there has been no further degeneration since February, when he last had his kidneys scanned. They can't be sure, but the doctors don't think that his renal failure post-transplant was the cause of his current problems. It's more likely that the left kidney was always smaller; we were just paying more attention to his heart at the time. It is possible that his kidney didn't get enough oxygen in utero due to his heart defect and is underdeveloped (much like what we think may have happened to his intestines). There are a few other issues the nephrologist will be discussing with his hematologist. We'll be sure to update once we know more. Obviously, the big question here is what does his current kidney state mean for his future? Immunosuppressants, especially the one Keegan is on, cause kidney toxicity over time. Keegan's not yet 2 years old, already has abnormal kidneys, and will be on immunosuppressants every day for the rest of his life. Again, these questions are ones we are considering carefully and consulting with our doctors about them.

Thank you so much for your prayers for Hannah! I went to visit her today, and she looks awesome! Her heart biopsy showed NO rejection, and she has not bled in over 10 days. She was sitting up in a chair, watching Sleeping Beauty, and telling me that she really wanted a salad and cereal with a banana (what a combo!). God is so good! Also, please keep little miss Avery in your prayers. She had a scope and bone marrow biopsy yesterday, and she spiked a fever today. Please pray that she recovers quickly at home. She is a courageous fighter, but she needs to stay home with her mom and dad!

New pictures are up on Keegan's photo site! Sorry we haven't posted any videos lately. Gray got an awesome new camera for his birthday, but we haven't figured out how to use the video and all the other fun features. We will record some soon. We are so grateful to have Keegan at home. We are so busy with doctor visits, therapy, labs, etc (only one day off in over two months!), but we are making the most of the time we have left before winter lock-down (which will unfortunately probably start earlier this year due to swine flu). Check out the pictures of our happy boy, and you'll see that he doesn't seem to mind anything! We love him so much, and we are so grateful for your prayers and support for our blessed miracle!

Monday, August 10, 2009

Little Update

Keegan has a renal ultrasound tomorrow to get a better look at his kidneys. We have a few more questions to follow-up with the nephrologist after the results are back. We will let you know what we learn.

He's still struggling with worsening GI symptoms. They're not the worst he's ever had, but it's certainly been better. There's not a lot we can do at this point. His cultures were negative, and his labs were about the same last week. The oral antibiotic he's been on since Boston doesn't seem to be helping or hurting at this point. We will likely continue to wean it aggressively because if it's not helping, he doesn't need to be on it. As his GI doc said this morning, nothing else has changed, so it's next to impossible to determine why he's gotten worse. We've put a call into our doctor in Boston to see if he has any more ideas. If not, we'll probably just see if we can't help the symptoms, despite the cause. A little fiber in his formula, maybe even some immodium. The good news is the formula he's on (Elecare) is doing it's job, and he's maintaining his weight despite the increase in output.

Again, Keegan is so used to feeling like this, that he's pretty much acting normally. He's such a happy kid despite all this. If you know him, you can tell when he's not feeling well, but he probably would seem like a pretty normal kid to most people. For that, we're grateful. Please continue to keep Hannah in your prayers. She had a very serious and risky surgery over the weekend in an attempt to stop the bleeding for good, and we pray it works. She is fighting hard but in a lot of pain. Please pray for her continued recovery and no complications. Thank you so much! We'll update again at the end of the week with more pictures and news on the kidneys. Have a great week.

Friday, July 31, 2009

Why We Are Here

After writing the below post last night, Gray commented that it was going to "scare a lot of people", and it probably did. I know it's not the first post to do so. I thought a lot last night about why we have this journal and why we don't just sugarcoat what's going on. I know I put in a little too much medical jargon than some people are used to, and I know I put a little too much detail down than is sometimes necessary for most of our friends and family. For that reason, I felt compelled to write a post about, well, why I write these posts. Eloquent, huh? I feel there are four main reasons that we update this journal the way we do.

1. For Y'all! - We started out journaling Keegan's story on what's now his photo site when Keegan was born to keep family updated while he was in the CVICU (cardiovascular intensive care unit). We were not allowed to have cell phones in the CVICU, and we didn't have the energy or time to update everyone by phone individually or by email. The Multiply site served as an easy way for everyone to follow Keegan's status, and after he was transplanted, we switched the journal to this site to help raise money for Keegan's medical expenses and those of other children waiting on organs through this COTA account. It's still the best way to let our friends and family stay up to speed on Keegan's health.

2. For Keegan - He is too young now to know what is going on. We hope that one day, when he is ready, he can read back through this journal to fully understand his medical history. We also hope it will give him insight as to how we felt at times and how many people were out there supporting him and praying for him. He will want to know the truth, and he deserves it.

3. For medical history - In this post from Keegan's first transplant anniversary, I wrote, "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." (It was a pretty thorough telling of Keegan's transplant story, so please read it if you're new to our site.) After this past fall/winter/spring inpatient, I learned that what I wrote then is even more true now. I relied heavily on this journal to help me piece together a thorough (8-pages of 10-point font) medical history for Keegan's transfer to Boston. I was amazed at what I had forgotten from the ICU days and stats I didn't really want to know (34 anesthetized procedures/surgeries, 15 units of blood since last August, etc). The detail we put in our journal entries helps us remember Keegan's extensive (all 22 months) medical history accurately. You never know what will be important!

4. FOR GOD'S GLORY - Best for last, right? I absolutely believe with all that I am that the Lord is working miracles in others through Keegan. "And we know that in all things, God works for the good of those who love him." Romans 8:28 I do not believe that God made Keegan sick, that He intended Keegan or any of the dear children we've met in this process to be sick or feel pain. I believe we live in a fallen world, and disease and death are part of that world. I believe that our Lord has the power to heal Keegan if that is what He thought was best, but I also believe that He is working through Keegan to reach many. I believe that God has a plan to redeem the world through the suffering of His son, Jesus Christ, and that Keegan's life is part of that plan. I've said before that Christ didn't suffer to end our pain but rather to lift us through it in the promise that we will live forever in HIM.

Please do not let me fool you into thinking that we have not grieved, lamented, and doubted our fair share during this process. Even writing the above paragraph - how difficult is it to admit that an all-powerful and loving God would not reach out to heal my innocent son? We are human, and while it is our nature to doubt, our faith tells us the truth. Believing is not easy. It is an hourly struggle. "What then shall we say in response to this? If God is for us, who can be against us? HE WHO DID NOT SPARE HIS OWN SON, BUT GAVE HIM UP FOR US ALL - How will He not also, along with him, graciously give us all things?" Romans 8: 31-32. This sums up everything so well. God's grace is our sustenance and our hope. I know for a fact that Keegan has brought many people to their knees before the Lord. Many people who have grown distant from Him, who have given up on Him, who lived a life outside of His love....especially me. What a testimony this child has!! What more could parents ask for?

Thank you for letting me go off subject a bit today. Your prayers, love, and support give us the energy to be the best parents we can be for Keegan. We are blessed to have such amazing family and friends. Thank you, thank you.

Thursday, July 30, 2009

Update

Well, Keegan's still home and holding his own. I'd hate to think where he'd be right now without the hydration and calories he's getting from his tube...actually, I know where he'd be, and we don't want to go back. Being home is one of the few things he has going for him right now.

First of all, his intestinal symptoms have worsened. Still lots of output (7 by the time we put him to bed), stooling overnight again (hasn't happened since we were in Boston inpatient), and as loose as they were last fall (didn't you want to know?). He seems to be in more pain associated with the worsening symptoms, showing some behaviors he did when things were bad this winter (getting on his hands and dragging his head on the carpet, stopping playing to lay flat on his tummy for periods of time, and crabbier than usual). We went back up on his oral antibiotic that was started in Boston. We're not sure if the reduction made last week is contributing or not, but we haven't seen an improvement since going back to his old dose. We are trying not to jump the gun and worry about things that aren't pertinent yet, but his regression has us pretty scared for two reasons. The best case scenario at this point is that Keegan simply needs an even longer, slower wean of the antibiotic than we thought. I'd like to think that is the case, but Keegan's intestinal issues were worsening before we made the most recent cut in doses. Still, it could be a temporary setback.

The other two possibilities are more difficult. One is that the vancomyacin is working, and he won't be able to stay stable without it. That's bad because he can't stay on it forever - it is a very powerful antibiotic, and it is used to fight some really dangerous, highly resistant strains of infection. Keegan is already susceptible to life-threatening infections, ones that would be easy for healthy people to fight off could kill him, not to mention ones that are dangerous to us all. We can't afford to let him develop a resistance to such an important antibiotic. Since we don't know why the vanc seemed to work for awhile, we don't know what else might help either. The other possibility is that the vanc really didn't work and was a coincidence with a temporary improvement, probably due to time and the special formula he's now being fed. If that's the case, it's obvious that the formula alone is not enough to sustain improvement. Again, the end result is that if we don't know what's truly wrong, we don't know how to help it get better. Hopefully, I explained that well enough that you sort of understand our dilemma. If either of these possibilities are true, then the best guess is that Keegan's intestines are simply too damaged or underdeveloped to process food like normal intestines would. There's evidence, however, that intestines can adapt and work better over time...lots of time.

The other issue addressed this week was Keegan's g-button, which was leaking a river. Wednesday, Keegan had a fluoroscopy study to check for tissue build-up in his stomach that was causing formula to be pushed out instead of in. The study didn't show anything abnormal, so today we changed his button to a different type. We'll see in a few days if that helps or not.

Other than that, his blood pressure has been low for a few days, and he's looking rather pale. The first thing Gray said when he walked in from work this evening was had he looked that pale all day. When his transplant coordinator called to check in today, she agreed to let us watch him over the weekend. If he continues to look pale or suffer lower blood pressure than we're used to, we'll rerun labs on Monday. We're praying that's not the case.

Now, lest you think we're all gloom and doom today, Keegan still laughed at his Madagascar movie this afternoon during speech therapy, and he did really well at occupational therapy this morning. Well enough that we're reducing his OT to once a week. See? Good news!

Thank you all so much for continuing to pray and support Keegan. We also appreciate your prayers for Hannah. She is still fighting but has a long road to recovery. Lastly, be sure to check Keegan's photo site in the next few days - got some great new pics to add! Thanks again, and have a great weekend.

Friday, July 24, 2009

Quick Update & Prayers

Just a quick update. I'm not sure how many of y'all are following our mini-updates on Twitter, and even if you do, the last few were kinda vague. Keegan's GI issues have been pretty bad this week. We're trying to stay positive and praying it is a temporary setback. Yesterday was plain awful. The special formula he's on has for the most part kept his diarrhea from coming back as terribly as it was last winter, but we're about as close as he can be to that at the moment - lots of volume, lots of mucous, really irritated bottom, some blood, etc. Yesterday afternoon, he had an accident like he hasn't had in a very, very long time. It was everywhere, and I mean everywhere when I went to get him up from his nap. Head to toe. Literally. Add to that the disturbances in his sleeping pattern, and I've been pretty darn anxious the last week or so. Terrified as to where this appears to be heading.

We already had an appointment with our GI doctor yesterday afternoon. The problem with not knowing what is exactly wrong with Keegan's intestines is that you also don't know why it might get better or worse. The treatment we put him on in Boston was completely a guess; neither the doctors here or there have any reason why it seemed to be working for awhile. The best guess we can make is that Keegan acts most similarly to a child with not enough length of intestines (called "short gut"), and the oral antibiotic he's been on perhaps helped keep the bacteria in his gut in check. We haven't made many changes to his routine lately, except that he's begun to eat a bit more of the crackers and puffs he was already eating. This is due to us shortening his tube feeds, making him just a bit hungrier at dinner time. The GI doctor could only guess that Keegan's intestines said "Enough! Can't take it anymore!" This happens often with short guts; you have to progress very, very slowly, and still you may have setbacks. We've decided to cut one of his meds, leave everything else the same, and reevaluate in a week. If he continues to get worse or spikes a fever or begins vomiting again, then we'll take additional steps.

SO, needless to say, we're a little on edge this weekend. I am still waiting on word from our immunologist about the plan for the winter, but it is sounding like starting preventative antibiotics orally and IVIG for the winter. More when we know more!

In addition to praying with us that Keegan begins to start improving, could I please ask of you to continue to pray for our friend, Hannah? She seemed to be doing better and was scheduled to be discharged today. However, she began to lose a lot of blood in her stool and will need a blood transfusion and colonoscopy to determine what's wrong. I know this sweet family would appreciate all the prayers they can get right now.

I continue to hold on to the promise that the Lord's power is made perfect in our weakness. When we start to despair over the direction Keegan's health takes or the battles of our dear friends, I know that if I let Him (isn't that the key here? Letting Jesus into our hearts, into our lives, giving up the control that we so desperately cling to?), the Lord will show me what He wants to do in our lives, the miracles of which He is capable. Sometimes, I have to remind myself that even things that seem so small - a smile from Carter, the funny antics of Miss Avery, Hannah's attitude and fight, Nate's strength and giggle, Keegan's funny faces that make us fall out laughing - those "small" things are immense miracles in these children's lives!! He knows every moment of this journey and is not surprised by it. His grace is enough for us...even if we have to take it one day at a time. Thank you for supporting us and praying with us as we trust in Him on this road.

Wednesday, July 22, 2009

Update

We've had a busy start to the week. I probably don't have much naptime left to post this, but I'll try anyway. Monday was transplant clinic. Keegan had two blood draws, a chest x-ray, an echo, an EKG, a breathing treatment, and a doctor's visit. The best news of the day was that he weighed in at an amazing 24 pounds! That has given us enough lee-way to play with his feeds a bit more, and we're hoping to be able to start three smaller feeds a day by next week. His heart looks just fine. Funny how the biggest, scariest part of his entire life and the one thing that is likely causing everything else to go haywire is doing great. Believe you me, we are overjoyed by the idea, especially after seeing sweet Hannah struggle through an acute rejection episode. His labs were about the same - liver numbers are still high but not climbing; electrolyte levels are still low but not lower yet. Blood counts are still ok but not rising as much as they used to in response to the shots. I've found myself summarizing Keegan's situation lately by saying that if any doctor picked up his labs without knowing his situation, they'd probably freak out. Yet, if you look at Keegan and if he could answer your question of how he is, he'd probably say he's just fine. Kids are amazing little people - so resilient, so positive, and so much stronger than an adult would be in this situation.

We see the GI doctor tomorrow to discuss where we stand with Keegan's feeds, g-button troubles of late, and general state of his GI issues. We meet with the nephrologist at the beginning of August to schedule further testing of Keegan's kidney function. We don't see hematology again until next month either. Still, I've been told that hematology, cardiology, and immunology are in discussions about plans for Keegan's treatment over the winter. We received some discouraging news from all the recent immunology labs that were run. Keegan has still been unable to produce enough antibodies to be protected against the illnesses for which he has been vaccinated. Basically, when you receive a vaccine, you are injected with a small amount of the actual disease (dead or alive) in order to have your immune system make and maintain enough antibodies to protect from actually contracting the disease. Keegan obviously needs this precious protection since he is immunosuppressed and susceptible to life-threatening infections (which is why he can't have live vaccines, since he can't fight them off). Keegan has not produced enough (or any in some cases) to maintain this protection, neither does his blood respond properly in a test tube to injected bacterias and viruses. The last idea that was being considered was putting him on some preventative IV antibiotics or IVIG to try to keep him healthy during the infection-heavy winter months. I"m sure we'll have more info on it soon.

The other good news of the week:

- We finally are scheduled for twice weekly feeding and occupational therapy at Baylor in Allen, starting tomorrow!

- Our transplant friend, Hannah, has been moved to the cardiology floor and out of the CVICU. Her heart function appears to have returned to normal, but she still has a bit of recovering to do. Thank you for all your prayers for this sweet girl.

- Our other friend, Carter, has been inpatient dealing with a recurring case of hemolytic anemia. He is stabilizing and has managed to stay out of the ICU this time.

Thank you so much for your support and love for not only our Bug but his friends also. What amazing children! Your continued prayers for all of them are much appreciated. Other than that, Keegan is doing ok. He has been having some trouble sleeping lately. We're sure it's just a phase, but it still has Gray and I a little on edge. One of the first signs of Keegan's troubles last year was disruption of his rock-solid sleeping patterns. It could be nothing, but it is sometimes difficult to avoid worrying about it.

Check out the newest photos of Keegan HERE. Thank you again. We simply cannot say it enough.

Sunday, July 19, 2009

Heart Moms

Just wanted to let you know that new pictures are up on Keegan's photo site. Check out all the fun he's been having this month at home, and be sure to leave him a message of encouragement! We have cardiology clinic all day tomorrow and several therapy appointments. It appears Keegan will need yet another new g-button this week, as he is having significant leakage from his stoma now. We're waiting for word from his doc on Monday, but we are anticipating switching to a new type of button to try to fix these problems.

Thought I'd use this opportunity to share a poem that means a lot to me. It's another one like the "Holland" essay I posted awhile ago. You either understand this because it applies to you, or hopefully it might shine some light into our world.


The Day I Became A Heart Mother

One day my world came crashing down,
I'll never be the same.
They told me that my baby was sick.
I thought, "Am I to blame"?
I don't think I can handle this.
I am really not that strong.
It seemed my heart was breaking.
I have loved him for so long.
I will not give up on this child.
I will listen to your advice.
I will give my son any chance.
No matter what the price.
I will learn all that I need
To help my baby thrive.
I'll even use that feeding tube.
My child must survive!
Will he need a lot of therapy?
Will he gain the needed weight?
Please God, help me do this.
As I accept our fate.
When the monitors beep at night,
it serves as my reminder.
How many parents would love that sound.
Tomorrow I will be kinder.
As another Angel earns his wings,
I run to my baby's bed.
I watch him sleep for quite a while.
I bend down and kiss his head.
I cry for the parents whose hearts have been broken.
I look to You wondering why?
Oh Lord, I just can't know your ways....
no matter how I try.
And yet, I trust you hold his life,
and guide us through each day.
My mind says savor each moment he's here,
but my heart begs, "PLEASE let him stay"!
From pacing the surgical waiting room,
to sitting by his bed.
From wishing for a good nights sleep,
to learning every med.
From wondering, "Will he be alright?",
to watching him reach out his hands.
With every smile my heart just melts,
despite life's harsh demands.
For all who see that faded line.
I look to them and smile.
You see my child is loved so much.
I would face ANY trial.
That scar I trace with my finger
(It's the door to his beautiful heart).
God must have known how much I'd love him
(Just as He loved him from the start).
A heart mom is always a heart mom.
Now wise beyond her years.
For those who have angels in heaven,
Our hearts share in all of your tears.
Every day I will try and remember,
I was chosen for him (and no other).
I will always embrace that beautiful day.......
When I became a "Heart Mother".

~Stephanie Husted

Thursday, July 16, 2009

Update

Really sorry about the delay in posts. We're still at home and still hanging in there. Unfortunately, the same cannot be said for our internet connection. Every time we think it's working for good, we say "good, we can post an update tomorrow!" Then, it goes down again before we can catch up. I guess it's a good thing to say that I didn't even realize two full weeks had passed since our last update!!

We have only had some therapy sessions and labs in the that time. We finally were able to schedule something with Baylor, only to be told we'd have to reschedule. That's back on hold now, unfortunately. ECI therapy sessions have been good though. We haven't seen any real improvement, but he just started. This will be a long progression. We also met with the dietician from ECI last week. I'm excited to have her help educate us on foods that might help/hurt Keegan's delicate GI system and give us pointers toward getting his tube feeds down to bolus feeds.

Labs last week were liveable. Same ol' problems. Unstable meds, unstable liver levels, some unstable electrolyte levels, and blood counts that are kinda sorta stable. It seems his white blood count is starting to drop more in between shots. We'll have more labs on Monday and discuss it more then. We have a FULL day at cardiology clinic on Monday - labs, chest xray, EKG, echo, doctor visit, and breathing treatment. Whew, exhausting just to think about it.

PRAYER REQUEST!! Please, please, please keep sweet Hannah in your prayers. You may remember that little Hannah received her heart just before Keegan was born and was in the hospital this past fall with RSV. When Keegan was little, she used to peek under the blanket covering his infant carrier at the hospital and say "that's my widdle bruh-der" (her brother, Cooper, was born about two weeks before Keegan). She always has something to say or do to make Keegan and us laugh. Hannah had her first rejection episode last week, just a few weeks shy of her second transplant anniversary. Gray and I went to the CVICU tonight to visit, and Hannah is stable and extebated. She is struggling with the pain medication wean, and she is heavily immunesuppressed. Please, please pray that she continues to improve and that her heart function returns to its previous levels when this is over. This is our first personal experience seeing a friend go through a rejection episode, and it's hitting a little too close to home for us. We can't imagine what her family is going through, and we don't want to really. Yet, we are encouraged by her progress, and we can't wait to see Hannah's smiling face again soon! Big hugs, little one!

Lastly, please check back on Keegan's photo and video site soon because we're hoping to have enough internet connection to post some great new photos! Thank you, thank you for your continued support and love for our Bug. We simply can't put it into words!

Thursday, July 2, 2009

Update

So, this week's been pretty busy. We'll start at the beginning, since that's always a great place to start. Right? Lots of info, so stay with me!

MONDAY - Early Childhood Intervention planning meeting. This went well, if you ignored Keegan's insistent, loud, and thoroughly annoying screaming the entire hour and a half. The screaming is a combination of inability to properly communicate (exactly what we'll be working on with the speech therapist) and always wanting to be part of the action. At any rate, the consensus was to begin once a week feeding/speech therapy with ECI, and every other week sessions to work on Keegan's cognitive/developmental issues. The therapists will give me 5 or 6 strategies to work on, and we'll evaluate Keegan's progress at each meeting. I'm not sure it's enough sessions to really help, but it's something! Considering Baylor STILL has not come through with their plan almost one whole month after Keegan's evaluation, I'm just ready to get started period.

While we're talking about feeding and therapy however, did you see my Tweet from earlier this morning? Keegan ran to his highchair when I said "let's eat breakfast", and then, he ate mini-waffles!! This may sound silly to you, but it was an ENORMOUS step forward for Keegan. Now, I need to clarify that "eating" means he picked them up, tasted them, sucked on them for a bit, and let some of them dissolve in his mouth. When there was a little too much mushed waffle in his mouth, he freaked out a bit, but a sip of water helped. Needless to say, we're hoping to start turning a corner with Keegan's interest in eating. The doctor even gave me permission this afternoon to reduce Keegan's tube feeds more during the day to hopefully induce more hunger/interest. We'll see how it goes!

TUESDAY - Immunology appointment and labs. The immunologist was glad to see Keegan was doing well, but she didn't really have much more info for us than that. She still believes Keegan has his own little version of an autoimmune disease/problem caused by the transplant and subsequent immunosuppression meds. She thinks his immune system is confused. It knows something's up but can't figure out what, leaving him with a ton of nonspecific antibodies that all go about doing their own things and affecting his intestines, liver, skin, blood, etc. Again we heard, "his bloodwork is definitely off, but not in a way that tells us what's wrong." Helpful. Due to the large amount of blood needed for the immunology workups, the remainder will be drawn next Friday with more liver levels. Keegan's immunosuppressant levels were low Tuesday; add that to a mystery fever he had last week, and we were suspicious that his liver was acting up again. So, we increased his meds and will see what happens next week.

WEDNESDAY - Meeting with Children's Chief Medical Officer about communication problems in the hospital (don't think that's his official title, but the best way I could describe it). This went really well also. At times, I felt as though he didn't think I was telling him anything new, and I'm sure I wasn't. But luckily, Keegan has touched enough people to be a great impetus for change in the hospital. We're working on a very exciting change that will be wonderful for future inpatient stays at least. The harder question is how to handle the in-between communication problems. I'm really very excited to have been invited to participate in this task force and look forward to making hospital stays better for all the kiddos.

THURSDAY - G-tube replacement. Keegan's gastronomy button, where his tube feeds are hooked into his tummy, had been leaking more and more lately. Come to find out that there is a nationwide problem with the particular size button Keegan has, so the GI doc had us come in to replace the button with a new one, get a weight on Keegan, and discuss his tube feeds. The button replacement went very smoothly. Keegan barely cried. And brace yourselves people, Keegan weighs 10.7 kilos (23 lb 9 oz)!!!! ARE YOU KIDDING?!?! I felt like I was on CLOUD NINE, y'all!! He weighed roughly the same at his immunology appointment Tuesday, but it was with his clothes/diaper on and on the standing scale. This time we went "au natuel" on the baby scale for the most accurate weight. Amazing, just amazing. Gray and I have worked to increase Keegan's tube feed volume at night (historically a bad time for feeding him, if you recall) over the last two weeks, and now with the approval of his GI doc, we're going to start reducing his overall daily volume. We hope he'll pick up the calories in oral feeds if he gets less formula during the day. We'd love you to pray with us for continued small steps forward daily on the feeding front.

Ok, I've flooded you with too much info today. As my friend Jennifer sometimes says, are your retinas bleeding yet? Thanks for sticking with us through all the craziness. Your reward is new photos of the Bug HERE! Lastly, please continue to pray for our dear friends the Akemans. They are facing big decisions with little Miss Avery's care, and Paul continues to struggle with back pain after his spinal surgery. My last prayer request is for dear Nate. He spent a lot of time in the ICU this winter, and he is back there yet again for another infection and pulmonary problems. He is such a fighter. We pray for a quick recovery, so he can play with his brothers again soon. Thanks so much.