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