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.