Friday, September 28, 2012

Clinic update

Two hospitals.  Two big clinic appointments.  Two very long days this week.

We spent most of Monday at Scottish Rite with the rheumatology team and most of yesterday at Children's for Keegan's regular transplant cardiology appointment.  Overall, the consensus is that Keegan is stable and doing alright.  And we will definitely take that and run!

We are still anxiously awaiting the genetic labs (for SCID) and research labs (to identify an inflammatory pathway) being run, but they will likely not be back until after Thanksgiving.  His labs are mostly stable.  Right now, his white count and ANC are in the normal range.  Keegan's are always, always, always low, so "normal" numbers could indicate he is fighting something - either a virus or breaking through the lower steroid dose.  He does have a slightly runny nose.  We're hoping that is the culprit for now.  As long as he continues to stay fever free without other major symptoms, we will continue with the milligram-per-month schedule while we wait on the big lab results.

Audrey, Gray, and I also gave more blood this week to the rheumatology research scientists so they can try to do a complete gene map for Keegan.  They have to compare the samples of our whole family in order to determine what might be unusual about Keegan's code.  This is exciting news, and we are extremely grateful that the head of the research lab was interested in pursuing this for Keegan.  As is usual though, these things take time.  The gene mapping project doesn't really hold a lot of potential for treatment information, but it is interesting to know.

In the meantime, Keegan is still powering through his regular therapy sessions - physical therapy, speech therapy, and ABA therapy for 9 hours per week.  The big news is that next week he will be starting homebound school services through the local school district for another 2 hours per week!  Because he qualifies for pre-K through the school district, he also is able to get that teaching in the home since he can't attend school.  I don't have much more information that that at this point.  I'm still waiting on the teacher to call me and forward the curriculum, but it's exciting stuff!  That's a lot to ask of Keegan - 11+ hours of services per week plus appointments.  Whew!  But I think it will help him exponentially though, and so I hope he will power through.

We are trying to make the most of the coming weeks, enjoying time together while we wait on the "big labs".  Thank you for continuing to keep Keegan and our family in your prayers during this time.

Wednesday, September 26, 2012

Job site

I guess once a week blogging is more often than I was doing, so technically, I'm still on track.  Right? 

We had a busy few weeks between Keegan's birthday and transplant anniversary.  Lots of celebrating to do!  Keegan has been doing pretty well.  We have almost made it through the first month of the steroid wean without any significant hiccups.  He had a few days last week where he was very tired (usually a bad sign for him), very moody, and just generally not himself.  His labs could have been better but definitely could have been worse.  Tomorrow, Keegan has a transplant clinic appointment, so I promise to do a more medical oriented post tomorrow about that and his rheumatology appointment from Monday.

In the meantime, how about some pictures?  The weekend before Keegan's birthday, the kids went to play around at BD's newest job site in McKinney.  My sister and I grew up on construction sites, and I can absolutely see us in each of these pictures.  I think Alex and I probably marked the studs in every building my dad built during the 80s.  This brings back so many memories and warms my heart to see my children enjoying the same experiences I did.  














video

Wednesday, September 19, 2012

5 year transplantaversary




Five years ago today, Keegan received a miracle.  An angel heart that saved his life.  In fact at this moment five years ago, the surgery itself was just getting underway, and we had no idea if he would come back to us out of the OR, yet alone be here today.

I read an article on a support site for congenital heart defects called Heartwaves.  The author discussed the idea that most CHD families can identify a "moment of impact" where the reality of having a critically ill child hits you.  I know exactly when my moment of impact occurred.  It was September 18, 2007.  Dr. Guleserian had just told us the day before that Keegan could not come off of ECMO unless he miraculously received a heart transplant, the odds of which were stacked against us.  We had a million meetings with different doctors and staff members over the next day.  We were supposed to sit down with a social worker a little after noon to discuss our family support systems for caring for Keegan if he received a new heart and what preparations we were making if he didn't.  I wasn't leaving the ICU very often, if at all, but Gray begged me to go down to the basement cafeteria to pick up a lunch tray, even if I didn't eat it.  As we waited at the elevator bank on the lobby level with trays in hand, I watched the other families swirl around me, coming and going, in the normal parts of their days.  I sank against the wall and knew that "normal" no longer existed for us.  I was drowned by a feeling that my son would never leave the hospital alive.

Of course twenty four short hours later, that would prove not to be true.  Our miracle would come in the form of a little boy named Johnston.  But for his parents, Kevin and LaMonica, my moment of impact would become their reality.  In their weakest moments, they found the strength to bless our family with the gift of life.  I fear the day I might again be faced with the decisions they made on this day five years ago, but I pray that I may have the courage they did.  I pray that I will never forget to be grateful for every breath Keegan takes for as we are keenly aware, it is given just as quickly as it is taken away.  More than anything, I pray that in five years, I can look back and say once again how blessed we are for each day and continue to be humbled by the gift of life we have been given.




Register to be an organ donor today at www.donatelife.net.  
You have the power to save a life.


Monday, September 17, 2012

Keegan's Clubhouse

On Saturday, we celebrated Keegan's fifth birthday with a Mickey Mouse themed party at our house.  Keegan loves many cartoon characters, but few can hold a candle to Mickey these days, particularly classic Mickey and Donald.  Of course, we originally planned this theme back when we thought a Make-A-Wish trip to Walt Disney World would have been the highlight of his year so far.  Since Keegan was in the hospital in Boston for his last birthday and had no party, we tried to make it extra special this year.  We took a chance and let Keegan party without his mask.  All of our neighborhood friends and family are great about being careful of Keegan's exposure anyway.  Keegan did fairly well with the commotion.  He was slightly overwhelmed by the singing when we cut the cake but managed to hold on.  We were so happy that he was playing around other kids and enjoying himself.

Even though our yard is itsy bitsy, I think the kids had a great time!  I believe the pinata was the hit of the party.  Mamie really had a great idea with that one!  The other highlight was definitely the simply amazing cake.  My friend, Stephanie, had it made just for the occasion, and I could not have imagined anything more perfect!  It was created by Michelle Klaassens, if you are interested in her work.  It was as yummy as it looked too!

As usual, we asked for donations for Children's in lieu of gifts.  This year, we collected toys to restock the toy closet on C8.  The closet contains toys that stay on the floor, so that children can have a variety of things to "check out" if they don't have toys from home.  It's shelves have been dwindling over the last few years, but recently, it's been absolutely pitiful.  We collected quite a few items.  If anyone is interested in contributing, just email or call me.

Overall, Keegan had a good birthday week, and it will continue this week with his 5th heart transplant anniversary.  But that's a post for another time.  Now, on to the party pics!  (If you are viewing this in email format, please go to the website to view.  The video also will not play on an Apple phone.)

Thank you to everyone, especially my mom, who helped make this party one to remember.  This party helped us celebrate 5 blessed years with a little boy who has fought hard to make each one count.  It was worth it all!




Wednesday, September 12, 2012

5 years

Is it even possible?  

Keegan is 5 YEARS OLD today!


There was a day I questioned whether this day would ever happen.  We are utterly without words to express the vast expanse of feelings we have experienced today.  You are our true miracle, Keegan.  We love you so much more than you could possibly know.  Thank you for blessing us with the last five years.  We wouldn't trade a second.  Not a second.

Happy birthday, Bug!


Saturday, September 8, 2012

Audrey's First Day School 2012

Audrey's first day of "school" was last Wednesday.  She is going Monday, Wednesday, and Friday this year to the same school at Christ United where she went last year.  Her first two days were great!  She woke up Wednesday saying, "I go to skool!"  So excited to go play with her new teachers, Ms. Laura and Ms. Teresa.  On Fridays, she has her teacher from last year, Ms. Heather, and one of Keegan's teachers (from the few weeks he actually got to go), Ms. Suzanne.  Our neighbor, Walker, is in the older 2s, but they get to be together on Friday.



Posing before school

Just like last year, very excited to find "school angel" in her bag.


Getting really excited now!

"Look, it's baby Aud-ee!"
Holding her picture from the first day of school last year.

"I walk.  I big gul."

Ready to get started.
"Hi, Miss Wawa" (Ms. Laura)

Right to the sand table with Ms. Teresa

A great first day of school with Ainsley, Lainey, Walker, and Gage.
Only one missing is Keegan.

Glad to be friends and neighbors with these kiddos!


Audrey's accounting of her first day of school...

Me: Audrey, did you have a good day at school today?
A:  Yes!
M:  What was your favorite part?
A:  Teachas (teachers)
M:  Who are your teachers?
A:  Miss Wawa and Miss Teesa
M:  Did you paint or color?
A:  Paint
M:  Did you play outside?
A:  Yes, I swide  (slide)
M:  Did you sing songs?
A:  Whees on bus!  (Wheels on the bus)
M:  Do you want to go back again?
A:  Yes, I go to Audee's skool!!

I sure hope next week is just as good!!  Have fun, and learn a lot this year, Ladybug.  We can't wait to see how you will grow and succeed over the coming months.  
 
*Updated to add:  I also asked Audrey what she had for a snack at school, since the first two days were half-days with no lunch, only a school-provided snack.  She replied, "cookies", which I highly doubt is true.  She was quite emphatic, though, and told me they were "her favorite."  Alrighty then.  Also, I just wanted to point out that Audrey is wearing a dress that was either Alex's or my back-to-school dresses for preschool.  Thirty years of tradition in one little dress.

Tuesday, September 4, 2012

The truth

It is the Lord Who goes before you;
He will march before you; He will not fail you or let you go or forsake you;
[let there be no cowardice or flinching, but] fear not,
neither become broken
[in spirit - depressed, dismayed, and unnerved with alarm.]
-Deuteronomy 31:8 AMP

I have tried and tried to start this post, to restart this blog actually, a million times now.  Quite literally, I'm afraid, over the course of the last few months.  It is easy enough to update when Keegan is in the hospital or when we have concrete answers.  Unfortunately, those answers are hard to come by.  They always have been with Keegan and still are, even though we are getting closer to them.  I dread answering the question, "how is Keegan doing?"  It seems impossible to answer at times.  I dread almost as much when someone asks how I am doing.  That also seems somewhat out of my grasp these days.  So, I usually answer "oh, ok" in person and have been avoiding any attempt to answer them on the blog just as much.

Instead of avoiding everything, I think it's time to start over.  The first and foremost goal of this blog was always to be a chronicle of Keegan's medical history.  Even if no one ever read it or understood some (or even most) of what I wrote, we wanted to have an accurate recounting of Keegan's medical issues.  It kept our family and friends apprised of Keegan's condition from the very beginning, as Gray actually started the first version when Keegan was but a few hours old.  It has helped us prepare to take him to Boston and to Cincinnati and to refresh our memories from trying times when doctors asked us for detailed information about his history.  It allowed those near and far to bless us with the power of prayer on Keegan's behalf for the last nearly five years, and in rarer circumstances, it helped connect us to other families on a similar road.  Here and there, I felt the need to share my personal feelings and insights from this life also.  Partly because I felt it may help other heart/transplant/medically-complicated families, partly because it helped me process the complexity of the situation, and partly because at times I desperately feel the need to explain to others what this journey is like.  Whether that be challenging, rewarding, crushing, enlightening, or simply tiring.

However somewhere along the way, I started to feel the pressure of the "blog world" creep in to my "medical journal".  This pressure that extends from blogs to Facebook and beyond.  To portray a perfect life, a perfect family, a perfect home, perfect crafts, perfect food, etc, etc, etc.  Shiny, happy people everywhere you look.  Keegan's health and developmental state often keep us from doing many normal activities, even simple crafts at home.  We don't have a spare dime to spend on making improvements to our house or taking trips, and I am certainly the furthest thing from a gourmet cook.  On the flip side, I didn't want to be another family with medical/special needs that lives nothing but that world, all the time.  Nor do I have any deep philosophical truths to share.  I'm honestly not sure my brain is capable of even shallow truths these days.  I suppose I felt at some point that if I didn't have something well-written with flawless photos that was (a) perfect, (b) creative, (c) brilliant, or even (d) mildly comprehensible to share, I might as well not share anything at all.

Remembering that this blog was not to serve my own purposes but Keegan's is the main reason I am recommitting myself to updating.  It is a disservice to him, both medically and for his own knowledge, if I fail.  Keegan deserves to have this information about his medical battles in order to understand where he has come from and to make future decisions about his care.

If I am to be brutally honest with myself and any reader who happens here though, I do have the selfish reason of writing as therapy.  Congratulations, you are now my new therapist!  God and everyone else knows I don't have the money for the real stuff.  As I felt that perfection pressure increasing, so did my inability to cope constructively with just about every aspect of my life.  I am pretty good at soldiering on and keeping a straight face.  It served me extremely well once upon a time in a courtroom.  (Remember that little piece of history where I was a somewhat successful trial lawyer?  Yeah, neither do I.)  The truth is that behind the facade was the crushing feeling that I was failing at absolutely everything.  Failing at taking care of Keegan and making sure that I was giving him every possible advantage.  Failing at making a home, at being a wife, at being a mom, at meeting Audrey's very distinct needs compared to her brother's.  Failing because I was not earning a living to contribute to our financial situation, failing to repay the debt of a law degree that I worked so hard to receive.  I dreaded getting on the internet and seeing others tell of successes that seemed so far away to me.  And then, well geez, I was even failing at keeping up the blog!  The endless cycle just kept going.

I wanted to break free of it, but I felt bound by the looming uncertainty of Keegan's remaining genetic labs that we were due back last week.  How could I commit to changes if with one test we could be thrown into seeking treatment for a new diagnosis or starting a new round of drugs that would change everything.  If the tests confirmed a form of Severe Combined Immunodeficiency Disorder (SCID), we would be pursing the possibility of a form of bone marrow transplant.  If they did not, we were hoping that the research labs being performed by the rheumatology group would give us guidance for a stronger immunosuppressant that would help us wean Keegan's steroids and prevent flares, but also make him even more at risk for infection.  How do you pull yourself by the ol' bootstraps if you don't know what tomorrow is going to bring?

Unfortunately, we learned last week that the lab in Canada that was supposedly working on the genetics never received the blood we sent in June.  12 weeks of waiting utterly down the drain.  I refuse to go into details here.  Suffice it to say that policy at Children's has been changed so that this mistake will not happen again to another family.  If Keegan stays stable for the next 10 weeks or even stays able to fight flares as successfully as he has recently, the only harm caused by the lab error will be more anxiety from the wait.  We decided to cautiously tackle a painstakingly slow steroid wean so that the remaining wait is not a complete loss.  One milligram per month, starting last Thursday.  Currently, Keegan is back to what we have come to call his baseline.  I hesitate to call it stable, as the slightest upset can capsize the whole boat, but right now, there is nothing going on that we can't handle at home.  Some days are worse than others.  This weekend was a rollercoaster ride; Keegan was extremely tired and had a 36 hour rise in his heart rate and blood pressure.  Not good signs for him, but he ultimately came back to more comfortable numbers by last night.  He is powering through his therapy sessions and making small gains each week.  He is developmentally very similar to Audrey and started showing some classic two-year-old behaviors that are very encouraging.

The truth though is that the anxiety of the unknown and the grief of an unrealized dream for my family robbed me of joy.  I admit and acknowledge that, and I am confessing it here in order to keep myself accountable in the future.  It is not the first time in the last few years that I have succumbed to this worry and fear.  It just seemed more acute this time.  It felt as if there was more on the line with Audrey added to our family and being on the cusp of a five-year quest for answers for Keegan.  The truth is that anxiety stems from a need for control.  (A constant source of issues for me since childhood.)  But I was never in control in the first place.  This life and purpose belongs to God and no other.  If I know that I have placed my trust in Him, if I truly believe that He will make these struggles glorified, then my anxiety is a waste of energy that could be put elsewhere.

People often quote the adage "God will not give you anything you can't handle."  Any person who has been told that as a means of comfort knows how it can stab at your heart.  But the missing ending of that phrase is that He will not give you anything you can't handle if you place your trust in Him.  He doesn't expect me, nor want me, to shoulder this burden on my own.  That is the truth.  One I am putting great effort into remembering daily and am renewing a desire to seek daily.  If you stuck with me through this post, I can't thank you enough.  Heck, if you stuck with me through the last few months, I really owe you.  I hope that I can live up to my promise and desire to post here more regularly.  For Keegan's sake and mine.

And that is definitely the truth.
The praying spirit breathe,
The watching power impart,
From all entanglements beneath
Call off my anxious heart.
My feeble mind sustain,
By worldly thoughts oppressed;
Appear, and bid me turn again
To my eternal rest.
-C. Wesley

Nasher

On Saturday, we took the kids to the free family day at the Nasher Sculpture Center to see Ernesto Neto's Cuddle on the Tightrope before it closed.  Art meets playground.  Pretty nifty.

Not sure if they wanted to go through yet.

Waiting, waiting

Took our waiting outside for a bit before they went crazy.

Keegan asking if he could swim in the fountain.
And understandably disappointed when he was told no.

Modeling their spiffy booties to crawl through the exhibit

Audrey told us they were "ba-yay swippas" (ballet slippers), 
so she had to "tip-toe" (dance).

Finally our turn!

"Umm, a little help here?"