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.