Merry Christmas Family and Friends!

Wow!  What an amazing few days we've had.  Something about this time of year is magical and so special.  We have once again spent a Christmas like no other.  This year has been spent in, instead of out shopping much.  We have no lights on the house, but we do have our manger, three stockings and a tree.  We still aren't in our home, but the ranch house has been super cozy and Ry has been right at home.  But as we are reminded time and time again, there are only a few precious things that really matter.  Being here with Rylynn is the one Christmas blessing that trumps all things. 
I could ramble on because I feel like I'm such an emotional mess right now, but I'll spare you all.  Our family has so much to celebrate during this special season.  We will continue to do so and never forget the Grace of our Savior.  Gotta go!  I have a CRAZY two year to chase around! 
Merry Christmas to you all.  I hope you and your family have a wonderful day.  Hugs and kisses!!

We're home

We're home. We're full. We're so happy.

Today might be the day...

So I apologize for it being so long since I've last posted.  I have so many pictures I'm still trying to get on the last one, but I'm having a little difficulty.
But pictures or no pictures, I had to get on and share some hopeful news to all our friends and family.  Ry has been doing wonderful here at the holiday house.  She is silly, talkative, has a great appetite, and is such a joy.  She is growing and developing so quickly.  It really is amazing how much they open up once they leave those hospital walls.  I hate thinking about how much she would have been set back if we had been there for a whole year.  But wow, you can't tell it now.  And her energy level is great!
On Friday, the 9th, I took Ry to a quiet mall north of town for the last of our Christmas shopping. (I did almost everything online this year to avoid having to get out.  And tried to finish everything else up before most shoppers were getting out to the stores.)  Our last stop in the mall that morning was at Dillards and we had just finished up.  Ry had done great all morning, wearing her mask and staying in the stroller, but now she had had enough.  So we strolled to the purses where it was empty of shoppers and I let her out of her stroller for a bit so she could stretch her legs.  The displays were just close enough so that I did not have to hold her hands and she could scoot from one to another without letting go.  HOWEVER, before long she had let go of the displays and was walking through them like crazy!  She would shout "Mama I love this one, I'm so jealous!"
It was hilarious (Don't know where she learned I'm so jealous?  I don't think she has a clue what it means!)  I was so excited!  I let her carry on for a bit just because I couldn't believe she was walking all on her own.  I'm sure the employee did not appreciate me letting my child run through the department, but I was so thrilled I just let her go!  I tried not to make a big deal about it in front of Ry, but I had to call Gilly and tell him.  And from that moment on, she's been walking on her own!  That day alone she walked for hours, what a joy to see her cruising again!  I love it!
So all been well here and at Ry's check ups.  We've adjusted some meds slightly based on labs every couple of days, but no major concerns.  Yesterday was Rylynn's 10 week heart cath.  Her pressures were impoved (YAY!) and things all look like they are continuing to trend in the right direction.  Her chest Xray is still nice and clear, echo was great as was EKG.  So the docs are quite pleased.  Today we'll get her biopsy results and then ....

If the results are negative...

We get to go home for Christmas!  Home.  As in Lampasas.  The place that Rylynn and I have not been in 54 weeks.  I can't even explain how excited I am.  Tonight might be the first time in over a year that Ry sees her swing!  It's all she's talked about for the past three days.  Gilly sent her a picture of it hanging and waitiing and she just can't wait.

We are still having to clean, paint and re-carpet our home after the renters moved out so we can't actually begin moving in till next week, but till then we are going to stay at Gilly's parents ranch house (where he's been staying for the past year).  We can celebrate Christmas there.  Together.  And next week we'll start getting settled in our place. 
We are praying with all our might that Ry's results come back favorable.  If so we'll be on the road as soon as we get the call.  We're hoping to make it home in time for a late dinner of Gilly's hamburgers and french fries.  Mmmm... I hope we're home for dinner :)

A super special weekend and all things Christmas

A couple of weeks ago we were approached about tickets to the Children's Holiday Parade.  We had heard quite a bit about it and really thought Ry would love it.  However, it would be impossible to take her with crowds of people, especially children all around.  The hospital helped us to get a hotel room at the Adolphus Hotel which lies at the beginning of the parade route.  So Friday I packed up all of Ry's meds and everything else and once Gilly made his way into town we headed downtown.  Things were already completely nuts on the streets and in the hotel lobby.  Kids were running crazy, parents were chasing behind them, but joy and excitement was in the air (well, the joy and excitement was beaming from the kids, parents were a little more tired and irritable)
We made our way to our room Friday night and then camped out there only leaving for an early, quiet supper at the grill downstairs before the masses came to eat.  Ry enjoyed watching the excitement from our window as they prepared for the parade.  Then bright and early Saturday morning we were ready for the parade. 
I figured Ry would watch a few minutes of it and then be done.  But from start to finish (about an hour), she never left her spot at the window.  She loved every minute of it!!  She talked about it for days!  It was so nice for her to experience the fun in our safe, quiet space.  We have alreay booked a room for next year and hope to make it an annual trip.  We had a wonderful time!
Enjoy all the pics and see what else we've been busy doing.

Pics still coming... I've been having a little tech difficulty.  Check back soon!

Seven Year Itch

Today Gilly and I celebrated our seventh anniversary.  And wow! Year 7 is one for the record books! We have always tried to get away for a night and a nice dinner each year to celebrate, but last year we spent our anniversary on our way back from a week long stay in Dallas.  Last year at this time we had just gotten home, unpacked the car and began to prepare for our transplant journey.  We had spent the week going through the evaluation and had taken all the necessary steps to have her listed.  The final step was moving to Waco so that we could be within two hours of the hospital.  So days later our entire house was packed up and Ry and I relocated.  So it's been just shy of a year since Ry and I have resided in the same home as Gilly.  It hasn't been easy.  (Well, none of this has.)  I don't know if it's harder for Gilly to leave us when Ry isn't doing well, or when she is.  Either way we miss him.  It's incredible to think in about a month we may be able to move back home and physically live together as a family again.  And with a healthy Rylynn.  One year ago, this seemed only a faint hope.  A few months ago, this seemed hopeless.
Gilly has worked so hard over the past year and sacrificed his time with us.  I know he loves Ry more than anything in the world and it will be so nice for him to see her again each day.  Every Sunday evening it gets harder and harder to say good-bye, but I pray it's only for a few more Sundays.
Gilly is a great father and a great husband.  Nothing about these past seven years has been ordinary, but for better or worse... I love you Gilly!  We can't wait to come home!!

Good Report

Ry did great yesterday, I was proud of her like always.  Although she was completely aware of what was happening, she tried very hard to be brave.  She was not thrilled headed back to the cath lab despite the silly juice they had given her.
She was great during the four hours we spent in recovery getting her echo, EKG and transfusion.  All those reports came back good and her Cath was also slightly improved.  Her wedge pressures are still quite high, but they did not go up so we'll just hope that over time they will continue to improve.  Her biopsy result came back today and the result was a 1R.  This is a good grade.  We are hoping this means that next week can cut back on her steroid a bit.
For now I have run because Daddy is here and we are "partying".  Tomorrow morning we're looking forward to seeing the Children's parade here in Dallas.  We can't wait.  I'll post all about it real soon!

A Busy Day Ahead

Today Ry has a scheduled biopsy/Heart Cath, EKG, echo, chest Xray, Infusion and labs.  Please pray for favorable results on all of them.  It will be a long day for Ry, but I'm sure she'll take it all just fine.  Thanks for the extra support, I never feel alone in my prayers.

And the winner is...

And other fun things from this nice long weekend.

As promised, Ry drew the winners for the raffle that was held to help raise money for her COTA fund.  Over 1000 tickets were sold!!  Thanks for all the work that was put into making this raffle a reality.  And thank you for all the donors who gave items, these were really cool prizes!

Ry loved having the task of selecting the tickets.

And here are the winners!

Ry and her Baby Reveille decided to watch Dora instead of the game... don't blame you!

We took Ry to the park for the first time since May!  Before getting sick, we went to the park once or twice every day to swing!  She was thrilled to see the swing set and did not want to get out!  I hope we have some more decent weather so I can take her again. 

Daddy assembling our terribly tiny, albeit an awesome Christmas tree!!

Ry seemed to like it :)

Our beautiful Christmas tree.  (Ry loves to use the word beautiful, so she continues to tell us about the beautiful Christmas tree!)  I must say she did a perfect job decorating it!



A Special Post

I just want to simply send out our hearts to a very special heart buddy of Rylynn's, and her family.  Although our family only knew Brooke during these past few months when she wasn't herself, I know she was a beautiful little girl who was so loved.  She and her family endured some very difficult times.  On Thursday morning, she went to be with the Lord.  I can't imagine the pain her mom and dad are feeling and can only ask that you pray for them during this difficult time.
They were all so sweet and I'm glad we had the chance to meet them.  We pray for sweet Brooke everyday and will keep on praying.

Picture Post

I've been working on this post a while.  These pictures date back a bit, but I wanted to get them up.  Enjoy.

Ry and her Pup. She's starting to shed lines.

Another visit by some of Ry's favorite friends.

October 18th: Only a couple of weeks post transplant and downstairs for some Pre-Halloween fun.

A late night trip around the ICU.

October 25th: Sweet sleepy head

October 26th: A trip down to see the fire fighters and the firetrucks.

Halloween fun with Ms. Laurie.

Ms. Patricia, Ry's massage therapist was also Dora!

So excited to see Big Bird at the carnival!

Ry's favorite!  The duck pond yielded lots of giggles and splashing with Ms. Chelsea and Ms. Tristeena.

My sweet Dora the Explorer

A much needed haircut, and Ry got the full experience. 

Thank you Ms. Leah!

Novemer 1st: Still not walking, but using her scooter to get stronger.

Making me ride "the bus" through the halls of the ICU twice a day.  Poor bus!

Ry loved using her dino mask twice a day.

Painting Ms. Katie's nails. Many of the nurses got a manicure from Ry.  Her specialty... the rainbow!

I have even more pics and intend to post again soon.  Hope you all are still enjoying your Thanksgiving weekend!

Give Thanks

Thanksgiving has always been a time of year to spend with family and laugh and love.  My life has been filled with blessings and each year I'm reminded how lucky I am.  
This year.  This day.  All I can think about is giving thanks.  It is the quietest, most uneventful Thanksgiving I've ever had, yet I will never forget it.  Gilly and I are here in our tiny hotel room enjoying the parade, a simple feast, naps and football.  It did not take hours to prepare our meal or hours to eat it, but it was a beautiful meal together at our table.  We are not surrounded by our loud crazy families that we love.  I miss them terribly and I miss staying up late to finish trying a new recipe to put on a cute new platter.  But our families love us and we'll see them soon and I can try new recipes next year.  This year its just us.  We have our amazing daughter here with us and that's something we will never take for granted.  She is doing wonderfully and has beaten every odd that she faced. 
I think back to last year.  On the day before Thanksgiving we met with our cardiologist in Austin and he confirmed what he had feared.  Ry seemed to be going into heart failure.  He knew we needed to get to Dallas right away.  Last years holiday season held so much uncertainty and helplessness.
As a parent you will do anything in the world for your child.  When it comes to having a sick little one, there is nothing you can do.  It's so frustrating.  You have to trust in God and trust in your medical team.  We did our best to do both.  We are truly blessed by the grace of God to have Rylynn still with us and at home.  All the love and support of our family and friends is what helped us through.  Today I'm thankful for each of you.  I wish I could personally thank each of you for your kindness.  No matter how big or how small your gestures each one means so much to us. 

I know Ry's future will hold many obstacles for us.  But we will take it one day at a time.  As we celebrate each minute with her it reminds me of the fellow heart friends who are spending their holidays in the ICU.  We pray every day that God grants them peace, strength and healing.  Please send a special prayer for them as well.

This has been a wonderful day.  We are so grateful for our blessings.  Happy Thanksgiving to you all!

Ry helping me prepare a Thanksgiving casserole

Our little Thanksgiving meal.  Prepared in our little kitchen.  Eaten at our little table.
It was wonderful :)

Just a Quick Note

I just wanted to let you all know we are doing wonderful!  Life outside the walls of the hospital have been great.  Ry's cath this week revealed some undesirable high wedge pressures.  This led us to a short stay in ICU while we got an echo, EKG, and chest Xray, but because all of these showed little to no change from her last, we were free to go after 5 hours.  It was just enough time for some of our favorite nurses to come by the room and say hi, but I was so relieved that we were able to go home.  We anxiously waited for biopsy results the next day.  This was the last piece of the puzzle and would tell us if the numbers were indicative of a rejection bout.  We were thrilled to find out yesterday that the biopsy came back ZERO.  Thank goodness.
So we're here at our "holiday house" enjoying lots of play time and resting.  I will post again soon with lots of pictures.  I have so many to share.
Thanks for all the prayers and I'm sorry for the delay in posting.  Once we get into a routine, I hope I find some time each day to get on the computer.  I miss sharing our fun times with you all.

Dear family and friends,

The past few months haven't been easy.  One really hard part of this journey has been having to be separated from our family and friends.  We've missed weddings, birthday parties, meeting newborn cousins, tailgating, and now holiday fun. 
As you all know, Rylynn's transplant means she will be very immuno suppressed for the next few months.  It gets better as time passes, but is something we'll always have to be conscience of.  Since her transplant we've had to restrict visitors even meaning that our siblings haven't seen Ry since she's been well. 
*This has been awful.  I wish Ry could see her aunts and play with her cousins.  I miss them all so much.  It's really, really hard being away from them.

But this is the responsible thing to do.  We have come a long ways and it's not worth risking her well-being.  We are still trying to decide what the holiday season will hold for our family of three and our much larger family too.

But back to the point of this blog.  I have to ask that we hold off on visitors until after the first of the year.  It means so much that many of our friends what to stop by and I'd give anything to catch up with you all, but again it's just not worth it.  So for now, keep sending texts and emails.  We will have to catch up another day, but appreciate knowing ya'll still love us :)

Very Short and VERY Sweet

We've had a very busy week filled with many great things.  We moved to the 8th floor on Monday just as we had hoped.  Ry did great and was excited about her new room. On Wednesday we headed to the OR to remove her PD Cath.  All went well and she recovered great with only a little discomfort.  Today we were able to remove her leads which monitor her heart rate and rhythm along with respiratory rate.  This is the first time in 3.5 months that she has not had 5 stickers attached to her chest and abdomen.  She cried for a while and refused to remove them for a few hours even though they weren't hooked up.  Then she insisted we keep the wires and not throw them in the trash.  But at bath time she allowed me to take them off.  So now we are only attached to her pulse ox monitor and a nasal cannula at night.  We're weaning that and she should be off of it by Saturday.  While all of this seems like sweet news, just wait it gets better...
Drum roll please....

We are being discharged on Sunday!!!

I'm nervous typing this out.  I don't know why, but I am.  Weird.

Wish us well, and send us prayers of safety and well being.  It's silly, but we'll be discharged on Sunday and back in clinic for a check up on Monday morning at 8am.  Oh well.  I'm so thrilled I just don't know what to say.

It may be a few days before you hear back from me.  It's going to be a busy couple of days here as we prepare for discharge.  We have to line up physical therapy, occupational therapy, respiratory therapy, medication delivery, oxygen, and so much more....

I also ask for a special prayer for Ry as we transition from our stay here in the hospital to our new temporary home just down the street.  She probably doesn't really remember life outside these walls.  She's a creature of habitat and likes consistency, this will be a huge change for her.  I'm sure she'll do great, but I know this won't be easy. 

Very excited and very tired.  I'll check back soon.

One Month Later

As I prayed on Sunday night, I thanked God for an incredible month.  The unbelievable blessing that Ry received is something I can not put into words yet.  I hope over time I will find the words, the right words.  But as I thought all day about the progression of the past month and the joy and most importantly the hope that Gilly and I now feel, all I could think about was the donor family.  For every moment that I am thankful for, they are angry.  For every smile I've had, they have cried.  For every thought of how our future now looks, they wonder the same.  There were two times when Gilly and I had nearly lost Rylynn.  We often talked about how we would go on.  It seemed impossible and unbearable.  I wonder how the donor family is feeling now.  I pray that time has eased their pain.  I pray that they find some comfort and peace in their decision to donate life. 
Tonight please pray for them.  May God bless them.

Biopsy Results and a Big Move

I fully intended to post our biopsy results on Friday, but as I tried to blog, the wifi kept kicking me off and I gave up.  But I have a few minutes and wanted to update you all.
The biopsy yielded us a score of 1R.  This is still a favorable score and usually means little to no adjustment to medications or regiment.  However, because of a few significant changes to portions of the biopsy, we were teetering between a 1R and a 2R.  Since we were still inpatient anyways, the transplant team decided to do a steroid pulse to nip this in case it was turning into a bout of rejection.  This meant starting Friday afternoon Ry received three heavy doses of steroids to knock her immune system out even more.  The doses wrapped up Sunday morning.  She had a few adverse reactions to the pulse, but overall handled it well.  All week we'll be on a very high dose orally, but we're weaning it back down each day.  We'll know on the 17th (during her next biopsy and cath) how her body is responding.
The steroids are making her eat like I've never seen before.  It's incredible to see her eating and enjoying it.  They are also making her a little restless at night.  She has been up for a couple of hours each night for the past couple of nights and just cries.  I can't wait to wean them down so that she can rest well again.

Ry's lung has opened up and is looking great!  We are on continued respiratory treatments, but we've been able to wean down to just three times each day.  We are both liking this change.  She's currently still on a nasal cannula at night, but we're in the process of weaning that each night as well.  Our hope is to go home without oxygen.

So the big move happened yesterday!  We are now on the 8th floor :)  After three and a half months in ICU, we're making our way closer to the door!!  It's so close I can barely stand it.  Tomorrow we'll go to the OR to have her PD catheter removed.  We have  had it capped for 9 days and she's done well.  So we're praying her kidneys continue to fully function and we have no regrets for getting it out.  It's an infection risk and with her weak immune system it's best to get it out.  I'm not sure what Ry will think about it being gone.  She cried the other day when I told her I was excited because her drain was coming out. 

Ry has made huge strides in her physical strength and rehabilitation.  Yesterday she stood for nearly 10 minutes!!  Today she took a lot of steps while I supported her.  She is such a determined little thing and I know she's just dying to really go.  I am so proud of her every accomplishment.  If she were any adult or older child she'd cry and give up, but I watch her trembling awkward legs and know she is using every ounce of strength.  She was actually sweating after today's PT session and even after a trip to the playroom.  Keep going Ry, I'm so proud of you!

This week so far

The GOOD is even more amazing, the BAD is better, and the UGLY is gone!  :)
We have had a truly wonderful week here (all relative, of course).  We are still in ICU, Ry still can't stand on her own, and we're still getting respiratory treatments every three hours for her collapsed lung.  So that's the blah, blah, blah for the past week.  Let me tell about the great things she is doing! 

• She is able to ride her scooter one whole lap around the unit and wants to many times a day.  Even at 10:30 at night!
• She is off of oxygen during the day and on high flow at night just to give that left lung a boost.
• We removed the feeding tube yesterday and she has tolerated all her meds just fine.  Even when she cries because she doesn't want to take them, she still knows its important and eventually will take them down.
• Items 2 and 3 means that after three months solid we have removed everything from her beautiful cheeks!!!  And I had forgotten how sweet they are.  (It took two days to convince Ry that we should take the oxygen cannula from her nose.  She had it for so long that it was traumatic for us to want to simply remove it.  We had to give her time to get used to the idea and then ready or not, we finally just took it out.)
• With help she can go from a sitting position to a standing position.  She wants to just get up and go so bad, it's a huge step to see that want to in her eyes now.  This is HUGE progress.
• She is silly!  I mean really silly!  Last week I told you how much I missed that little laugh and her smiles.  I just have to say again, it's such a beautiful thing!  Gilly and I love her so much and we can't get enough.  It is the best feeling in the entire world to watch her be happy.
• She wants to "show Daddy" everything she does.  She will put a grape on her forehead and say "I show Daddy".  She will put on a sticker and say "I show Daddy".  She will stand up during therapy and say "I show Daddy".  She will put sprinkles on her ice cream and say "I show Daddy".  It doesn't matter what it is, we have to take a picture and send it to him.
• Her play time is like a two year olds play time should be.  She's no longer so deliberate and cautious.  Instead of playing with only the white sand, she is now mixing colors and not afraid to spill a little on the table.  This is refreshing.
• She is friendly.  She is now talking to her nurses and doctors and allows them to do more and more.  There were times when no one except me could change her diaper, take her temperature,  take her blood pressure or give her a med.  But now I can even leave the room to go to the bathroom or change laundry over just down the hall.

Tomorrow she will have her second heart cath and biopsy.  In addition, they will bronc her to try to open that lung up even more and remove any mucous plugs they find.  It is refreshing that we have seen a little improvement, but it still only about a quarter to a third of the way open.  They have decided not to remove the PD so we will have to wait until her cath in two more weeks to see about removing it.  This means we're guaranteed at least two more weeks in this place.  It's been a great stay, but now I'm desperate for a little time away from here and a little privacy with our family.  However, I do thank the Lord every night for our blessings, besides what's a measly couple more weeks.  I am just thankful that Ry is doing so well and that's enough for me.
I promise to try to post tomorrow while Ry is in the Cath Lab.  I want to post lots of recent pictures including pics from Halloween and all the other fun things we've been up to. 
Say a prayer that the cath yields some favorable results and she does well while under anesthesia.  Sleep tight and check back soon!

The Good, The Bad and The Ugly for this week

Sorry for the delay in posting.  Here's an update for the week.

The GOOD
Ry has been eating great, she looks great and she's smiling!  For the first time in many months, Ry is actually smiling, even giggling.  I have missed that little chuckle so badly.  It's something that Gilly and I cherished so much prior to our diagnosis nearly a year ago, but it is even sweeter now than before.  Oh how I love to see her happy.
Ry is also taking all her meds by mouth except for two vitamins that we're trying to adjust to her liking.  This means that we can get her feeding tube out real soon!  I'm so ready to shed it and so proud of Ry for taking her meds.  She is currently on 19 different medications taken at different times throughout each day.  Some of them are administered up to four times per day.  And she takes each one like such a big girl.  I'm so proud of her!

The BAD
All week long we've been battling with Rylynn's left lung.  It is collapsed and just does not want to come back around.  She clinically seems pretty good even though she's still on 4L of oxygen.  I guess she's lived her whole life with only half of her heart, she says only one lung is a piece of cake!  In reality though, this could lead to problems (infection, pneumonia, etc.) if we can't get it up soon.  So after days of respiratory therapy she made no progress and on Tuesday we headed back to the OR to be Bronced.  During this procedure, Ry was intubated and then scoped.  They were able to find blocked airways and pull out mucous plugs.  We were glad they found something and hoped this would solve our problem.  However, despite the procedure we saw no improvement what-so-ever.  So we stepped up our respiratory therapy as much as possible.  This includes using two different positive pressure breathing devices, alternating three different aerosol medications, and using a sound frequency machine EVERY THREE hours.  I hate it.  It is miserable and Ry cries, but she still knows she has to do it.  Each treatment takes at least 30 minutes.  It is a lot.  And after a full week of this, today was the first day to see a slight improvement on her Xray.  I was thrilled and texted Gilly right away.  I hope we can continue in the right direction.  She has to continue to get strong knowing she can't really rely on her strained or completely severed diaphragm (from so many open heart procedures).  But here's where the ugly comes in.  Just as we were making progress...

The UGLY
Today Ry woke up with an upset tummy, an awful headache and a fever :(
Even with tylenol, her fever has been lingering around 100.  She has been resting most of the day because every time she wakes she cries that her head hurts.  So now this means we've missed two breathing treatments and she hasn't been up working her muscles either.  I sure hope this doesn't mean we'll be taking a huge leap back.  And I hope this isn't anything major.  Because her immune system is nearly non-existant post transplant, even something small could really be rough for her.  Please pray she gets through this bug quickly.  I want to see those smiles again.

Thanks for your patience as I try to get back to blogging more regularly.  It just seems that there is such little time for it and I don't have the energy at bed time.  Check back with us again soon!

SO MUCH Love and Generosity

I am so overcome by the warmest feeling right now that I don't know how my words on this silly little blog can express how thankful I am. I will give it a try.

Today was Rylynn's fundraiser in my home town. Where I grew up there are still no stop lights, not even a flashing one. In the past five years Jarrell has started to see a wave of growth and things are starting to change, but the people haven't. My graduating class was fifty-something and a large portion of those guys had been my classmates since we were in kindergarten. The church where I attended is the same place my parents were married (and me and Gilly), where all my grandparents, all my great-grandparents and all my great-great-grandparents are buried and where Rylynn and I were both baptized. We only had one little grocery store, one bank, one hair salon and two gas stations. You couldn't get away with much and you couldn't date much (because your buddies were more like brothers than anything else), but there is something to be said about growing up in a small town.
After graduating from high school, I moved away for college and have never resided there again. However, I am never far away from home. It has been really strange not spending time there with family and friends for the past 10 months. It is where my family is. It is where my friends came from.
I wish more than anything that I could have been there today for the fundraiser. Numbers and dollars do not mean to me what the comments of love and support do. But I have to share this incredible number. They served approximately 800 adults lunch today!!! This is insane!
While my family along with members of the community put this all together, it was the friends that came that just blows me away! There were old friends, new friends, college friends, and friends of friends. And here's what gets me... Now-a-days, donating money to a cause is simple. There are links, pay pal, and wire transfers, but this was something different. Eight hundred people decided that they would rather spend there day eating BBQ in Jarrell than doing what ever else in world they could be doing. They got in their car and took time to support us with their presence. The first time I cried today is when a friend of mine texted a picture of the parking lot to me! Then there were the phone calls from my mom and sisters just spilling out with excitement and exhaustion over the day... more tears.
I wish more than anything we could have been there. However, as I said before I am thankful today was a celebration of Ry's transplant. Only weeks ago, we did not think we would have such a blessing to be thankful for.
I have to share a very few items and prices from today's auction. I am sharing this because those of you who are not lucky enough to have grown up in a small town must hear this. You will think these people are crazy! (And they are... I love it!)
Kolaches: $250
Homemade Noodles: $275
Brownies: over $100 ( to be fair though, Justin really thought he was bidding on a fire extinguisher)
Other items included bales of hay and puppies!!
Now not all items were staight from a kitchen or a pasture, but I just had to share :)

The dollars raised, although not finalized, are humbling. It is a blessing that will help to take care of Rylynn's medical expenses that are not covered by insurance. I just want to thank each and every person who helped and who attended. I know who so many of you are, but will never know who all of you are. Please know that your kindness means something. In a world filled with daily worries, it is so nice to know there are still kind people who do kind things for others.

Again. Thank. You.

Don't forget

Tomorrow's the BIG day!  Our family and friends have been hard at work on Rylynn's fundraiser and tomorrow is the big event.  We can't wait to hear all about it and thank you all in advance for every little bit you do.  I hope the weather is beautiful, the BBQ is great and the fellowship is warm. 
Wish we could be there ...

Benefit Lunch for Ry

I have to get to bed now.  Ry has had a wonderful week aside from the still-collapsed lung.  We are doing breathing treatments using forced air to expand the lung every three hours.  Her next one is in an hour and a half, so I've got to try to get a little rest before we're up.  I will try to post tomorrow.

Good night.

Biopsy Results

We received word that Ry's biopsy report today was "0". This is great news!
We will have another cath and biopsy in two weeks. The only bad news of the day is that we're not weaning the sildenafil. Oh well, this is only a nuisance Ry will learn to take the med soon.
Today we were able to go downstsirs for a halloween party. Costumes were given out(Ry chose a princess because they didn't have any Dora costumes). She got her face painted and got some activities to bring back to our room. We were there long because we had to avoid the crowds. But she did enjoy it. It was a great but busy day... Maybe she'll sleep tonight (yeah, right)!

Cath Lab Results

Ry did go to the Cath Lab first thing this morning and did very well. And best of all, we got a really good report on her new heart. Here's the run down:

~The heart function on both the right and left side looks good. Both are functioning well although not as well on the relaxation motion as the pumping.
~ The pulmonary arteries look great. This is a huge relief. We feared she had narrowing in parts of one or each of these. Ry has been on two meds for pulmonary hyper-tension and after the images today, we will begin to wean off of them. I am thrilled. One of the medications is very expensive and Ry had to take a very large volume. This will eliminate this dose every six hours, each being 8mls! The second medication was one that we'd have to mask and glove with each dose.
~ Her lungs weren't quite in such good shape though. So yesterday's Xray showed what we thought was fluid accumulation along the lower left lobe of her lungs (this is always a trouble spot for her) which is where her last chest tube had been sitting. We had suspected this might happen so we weren't surprised. This morning's Xray was a bit more surprising. The ENTIRE left side showed an infusion. While this was more change than we expected, it was not too worrisome since we had planned to drain the fluid and place a chest tube today. However once in the lab, it was discovered that her left lobe was actually collapsed and there was very little fluid present. They placed the chest tube anyways and then proceeded. Once Ry was intubated for the procedure, it actually helped open her lungs. So now we are dealing with a crummy cough and breathing therapy every 3 hours to strengthen her diaphram. Ry is doing great, I'm just really nervous about it all. It seems so serious and something that will have to heal slowly. The best thing for her in getting up (which we do) and physical exertion (which we haven't done). The chest tube should come out tomorrow though, since it's not really doing a major service. Once the tube is out we'll push her physically.
~ Tomorrow we'll get the results of the biopsy. The result will be one of the following:
Grade O: No Acute Rejection
Grade 1R: Focal, Mild Acute Rejection
Grade 2R: Moderate Acute Rejection
Grade 3R: Diffuse, Borderline Severe Acute Rejection

We are thankful for the good news and hope things continue to progress in the right direction. Tonight say an extra prayer for some of our heart friends here in the ICU. A couple of them had a bad day and need a little help from above.
I need to get to bed, last night Ry only slept 3.5 hours and now that she has that painful chest tube in, I'm not sure she'll be able to rest well tonight either. Praying for rest and favorable biopsy results.

Love and Generosity

For months, many of our family and friends have extended their help in many ways.  The most important way being in prayer.  The strength of prayer is incredible.  We are so grateful for each quiet moment that has been shared with God on behalf of Ry.  If only I could personally thank each of you.
Along with prayers we've received wonderful gifts to cheer up Ry, cards and emails to strengthen Gilly and I, and visits to brighten our day.  Some of our closest family and friends have really put together something special for this next Sunday.
Next weekend, on Sunday, October 23 there will be a benefit for Rylynn in my hometown.  My sister and so many others have worked so hard to put everything together.  They are working with COTA (Children's Organ Transplant Association) so that everything raised will be strictly used for Rylynn's transplant expenses and is in her best interest.

There are two things to be noted about this special event:

1)  I am so truly sad that we can't actually be there.  I would give anything to give out giant hugs to everyone who comes and to all those who are putting their time into it.  It's such a humbling feeling to hear how much support my sister has received in putting this event together.  Thank you to each of you.
2.) I'm thrilled that this event can have a celebratory feel to it.  Only two weeks ago as Tammy was having the posters made, we were unsure if Ry would ever make it out of this hospital.  Now we have hope that we'll be out within the next month.  And maybe we'll be able to leave Dallas before spring!  We have a really long and uncertain road ahead of us, but at least we are now traveling on a road that actually leads somewhere.  I want everyone who attends on Sunday to smile as they think about Ry and her miracle transplant.

So here's the link with all the info for the benefit.  Once again, thank you to each of you who have had a hand in pulling it together.  This truly means a lot to us.  We love you all.

Here's a link with more information:
Benefit for Rylynn

A little update

Ry's last chest tube was taken out yesterday.  I was so excited to get it out so she'd feel better, but know that this may not last long.  Drs were pretty sure she'd reaccumulate fluid, but figured since we're going to the Cath Lab on Monday, they could always place another if needed.  Well, based on her labs, vitals, and Xrays this morning, I bet we'll be getting it put back in.  She did indeed reaccumulate a bit on her lungs.  She is showing signs of it too.
In addition, we've had to make some changes to her fluid balance.  She may have gotten a little intravasuclaryly dry and now her kidneys are a little upset.  This means, more tweeking and a possible delay to the Cath in the morning.  They don't want to give her body the contrast, which is hard on the kidneys, if she won't be able to handle it.
Otherwise Ry has been doing well.  Her recovery is just much slower than most transplant recoveries.  So at times it makes us worry, but she has been through a lot and so her body just has to adjust.
Last night was the first time in the past week that she has slept.  It was with the help of a sleep aid, but we're hoping if she could just get herself into a better cycle that the problem will be resolved.  I think she just gets really scared at night and needs me standing at her bedside to make her feel better.
We are hoping for a good week and we'll keep you posted!

Really Good News Friday- Day 8

I apologize again for making this a short post.  There have been so many emotions and thoughts that have flooded me over the past eight days and I want to document it all.  However, Ry still thinks it's a riot to keep me up most of the night.  And our days are as they always have been, very very busy.  The only quiet time during the day is when she takes her nap.  I usually spend that time grabbing a bite of lunch and taking a nap if I'm lucky.
However, I could not fall asleep tonight without sharing a bit of good news.  Today Ry had an echo done.  Drs are still trying to closely follow the progress the right ventricle.  After a quick look today, the official report read: right ventricle function is normal.  This is incredibly good news!  More measurements and images will be taken in the Cath Lab on Monday, but we couldn't be happier with this. 
On an almost equally exciting note, yesterday the dietitian ran a calorie count on Ry and she took 100% of her caloric needs by mouth!  This is quite an accomplishment.  So for now, no night feeds.  We will continue to monitor her intake and make sure she's getting all she needs.  This could fluctuate over time, but it's a great start.  The feeding tube will not be going anywhere anytime soon though.  Ry's med volume is quite large and we're having to ease into her med regiment.  For now she taking about 20% of her meds by mouth and the others are going down her tube.  This wouldn't be so bad except that the volume of medication will continue to go up over the next several days.
That's all I can muster up for now, but I will try to post some more later this weekend.

Good News Wednesday- Day 6

I am too tired to muster up the energy to post tonight, but promise to continue this post in the morning.  We did have a great day and Ry's right heart showed enough improvement over the past 48 hours that we were able to avoid a trip to the Cath Lab... Yay!  I think she has really turned a corner and I feel each day will be remarkably better!
Stay tuned . . .

Post Transplant- Day 4

Tonight's one of those nights that I'm going to have to keep it short. Ry just fell asleep and there's no guarantee she'll sleep long so I have to take advantage.
Ry had a better day today than yesterday. She was awake most of the day, was able to hold down apple juice and even got out of bed for a bit.   We were terribly sad to say good-bye to Gilly for a couple of days, but hopefully when he gets back she'll be feeling much better.  We were also finally blessed with some good rain in Lampasas and he needed to get back and check on things. 
So here's where we stand now.  The biggest concern now is that her "right heart" still is not responding well and while it's not getting worse we have made little progress. I once again emphasize the fact that Ry is the first single ventricle patient who was placed on a VAD to ever be transplanted here at Children's. There are very few children most especially small children who have survived to transplantation. So while most patients' "right heart" bounces back by now, maybe Ry just needs more time or maybe its a sign of another complication. Unless drastic improvement is seen in the next 24 hours (and we're praying deeply that it is), we will have to take Ry to the Cath Lab on Wednesday. Gilly and I are very concerned and pray that this problem can be resolved somehow either prior to or in the Cath Lab.
Please life prayers for Ry tonight as you go to sleep. We've come so far and have asked for so many prayers already, but we need a few more. We appreciate you all and know that God has heard your voice, He has been good.
Sleep tight and I'll try to update again tomorrow.

Post Transplant- Day 3

Ry is still moving along slow and steady.  Today has been filled with a little more discomfort than before.  We are trying our best to keep it under control and hope we can keep her recovery as pain-free as possible.  Unfortunately, her "right heart" is still quite angry.  The CVP pressure are still really high and haven't begun to come down yet.  Docs still say that we will just continue to watch them and hope they will trend down with time.  Right now they are causing Rylynn some headaches, but we haven't see any other major effects.  Meds have continued to be weaned.  We only have a couple of which must stay in the IJ line and last arterial line.  This simply means we can't take out those lines. :(  We also have not made any moves today toward removing her chest tubes either.  We will need to wait another 24 hours or so and then reevaluate.  Unfortunately, Ry has continued to vomit with any intake.  She is desperately asking for fluids.  We have given her a very limited amount of ice chips and hope that her bowel will begin moving soon and make her feel better.
So all in all today will continue without any major changes.  She is quieter and resting much more than yesterday.  I hope this will give her body the chance to really recover.
I've attached a few pics from the past few days.  Enjoy!

After getting the news: Ry so confused as to why I won't get off the phone and keep crying.

Resting quietly (still with the VAD) prior to surgery

Just before they took Ry to surgery

Headed back from the OR post-transplant.  She looked beautiful!

So happy so see her for a short glimpse before heading to her room.

Post Op Day 1

IV Meds Post Op Day 1

Post Op Day 2- Out of ded for a quick sit.  You wouldn't believe the dozens upon dozens of
wires and lines that were piled behind her!

I wrote this post yesterday, but am just getting it jposted today... sorry.  I'll write later to let you know what today holds.  Thanks for our continued prayers and well-wishes.

**Disclaimer Post

I am not a great writer, I never have been.  It's been brought to my attention that some of my posts contain many errors, both grammar and spelling errors.  As you've followed the blog you can probably tell the posts that I have atleast read back through and those that I posted without even a proof-read.

I just wanted to say sorry...read at your own risk!  :)

Post Transplant- Day 2

Wow, it hasn't even been 48 hours since Ry's transplant and things are moving right along.  She has had a really great recovery so far.  Things have been slow and steady, but she's moving in the right direction.  All the meds are slowly being weaned and the big news for the day is that SHE'S BEEN EXTUBATED!!  Just an hour ago they were able to extubate.  She's doing great and still begging for ice, water, apple juice, and milk.  It's not been easy to distract her, but we're trying.  It's going to be another 11 hours before she can eat or drink.
We had hoped when they extubated that her CVP numbers would drop a bit, but unfortunately they have not.  I am praying that they will come down soon.  This is a measure of pressures in her "right heart", which is still struggling a bit.  This is common, but not necessarily good.  But with time we hope for improvement.
Her blood pressure and heart rate have finally reached an appropriate range, her fever never came back after it broke the first night and she is finally starting to make a fair amount of urine.  Her belly is still very distended, but we hope very soon her bowels will wake and start moving along.  Earlier this morning they were able to remove one of her three chest tubes.  In the coming days, the other two should be able to come out as well.  Last night one IV was taken out, but she's got one more in her foot, one in her hand and her big IJ line in her neck.  I'm so ready to get those removed.  She will keep her Broviac line and her PD Cath for now.  Her cannula sites look really good now and we pray for continued healing for those (sometimes they can cause some problems).
Last night, Ry, Gilly and I were all able to get some much needed rest.  So today feels like a great day.  I will update more as soon as I can and plan to upload some pics later today as well.
It's still just amazing that this blessing has been given to Rylynn.  We never knew if we'd get to experience this second chance at life.  We love her to the moon and back. 

Update

Sorry I haven't gotten to the computer sooner. I am glad to be writing with a good report though.
The surgery and transplantation took almost exactly 12 hours. There was a lot of scar tissue to have to get through, there was the delicate procedure and then there was a lot of bleeding (due a lot to the anti-coagulation regiment that she was on). But Dr. G gave us a very good report at the completion of the surgery. So then we begin our next journey....
We are a little over 12 hours post-op and Ry is doing wonderful. It was a very long night of fine tuning medication doses and lots of really close monitoring. Because the sedation medication made Ry's blood pressure too low, she is on practically no sedation medication. You all know what this means. She's been up all night! This is almost funny (but not really when you haven't slept since Tuesday night. Gilly and I have been able to take shifts through the night so we've each been able to rest a little. Much like when she was intubated before, she's been able to communicate very clearly. So far we've understood, blankie, water, dip it, fan me, scooch and Puppy.
She looks absolutely beautiful! It's awesome to see so much of her flesh again. No more ginormeous dressing all over her belly. We can even see her belly button.
Today they will consider weaning her from the ventilator (they've actully already pulled her settings down and she's doing great)! Even prior to heading to the OR she received her first dose of immunno surpressive drugs. Since then the steriods and immuno surpressive medications have been in full force.
Upon returning to the room for the first time yesterday afternoon to see her, the echo-tech had just finished up Ry's (second) echo post transplant. He was kind enough to run a few images as we got back in the room. Gilly and I have seen dozens upon dozens of Ry's echo's over the past two years and while we're not experts, we have become familiar with many of the images of her hearts anatomy. The first image that was pulled up showed FOUR chambers! It was awesome, weird, crazy and (as stupid as this sounds) shocking. I was taken back by what I saw. I've never seen a whole heart being echoed. It was incredible. We were so thankful he stayed in the room for the extra 10 minutes to sho w us her new beautiful, healthy, beating heart. Oh what a sight!
I know I have much more to share with you, but for now I have to get back to Ry. She wants us by her bedside and we're happy to oblige. Here's what today holds for each of us.
For Ry: An attempt at weaning her from the ventilator and her nitrous oxide.
Do lots of lab work, xrays, echos, etc.
Get her kidneys working a little more.
Continue to wean blood pressure medications and dozens of other drugs.
And many other things that are beyond me.
For Gilly and I: Try to get some rest!!

Our emotions are still running crazy and I hope to post a bit more about all of this later today. Thank you for all the notes, emails, phone calls, text messages and visits we've had from friends and family. I wish I could answer each one, but please know that we do read and listen to each and everyone. And they help us and encourage us through this wonderful, crazy process. Please continue your prayers for healing and comfort.

A Beating Heart

We have officially gotten word from the OR that Ry's new heart is in and is beating!  She will still be back for a couple of hours while they control the bleeding and close things up.  We will get to have a peek at her as she's wheeled back to her room.  I can't wait to see her pink cheeks!!
It will be much later this afternoon before she is settled in a room and we can actually be with her.
Please continue your prayers!  I hope to post more good news very soon.

Plans for the Night?

Gilly and I sat here trying to decide what to call this post.  It is the most thrilling news I've ever written for my blog friends.  At 9:00 last night Dr. G walked into Room 12 and asked "Do ya'll have plans for the night?"  Right in the midst of our busy nighttime routine, I answered "Yes, a bath, a cap, and we're still trying to eat a little quesadilla." 
I think I heard her mention something about getting a heart, but I thought it was another pep talk about hoping a heart will come.  But the look on her face and a repeat question of "Do you want to get a heart tonight?"  And my stomach dropped...
There were tears and hugs and a phone call straight to Gilly!  We waited all night to spread the word because many, many things have to fall into place to make this happen. 
They took her back around 2:45am and we've been updated throughout the night.  Things are taking much longer than expected, but our latest update from Susan is that the surgeons who went to harvest the organ feel it was the right fit for Ry so they have begun to open her chest here.  Getting through the scar tissue is proving to be very difficult and taking some time.
We have a long very day ahead of us and really appreciate prayers for Ry and the Doctors who are working with her.  They have had such a long night and are no where near complete.  Please pray God will be with them throughout the surgery.
And of course our thoughts are never far from the family who lost their sweet angel this morning.  They have given Ry a chance to live.  Their selfless act during this time of grief is a true miracle for someone else.  Please pray for their comfort and healing. 
I have to go for now... I can't wait to update again in a few hours.  Please, please pray for a good day.

Prouder than ever to be an Aggie!

Yep, you heard me right. Even after another ugly second half loss, my heart swells with Aggie pride. A few weeks ago, one of the nurses in the ICU said that her and her sister (both Aggie grads) wanted to try to arrange something special for Rylynn while the Ags were in town for the Southwest Classic-- Arkansas vs Texas A&M. It was so sweet and Gilly and I were excited to see what they had in store. Well, they really outdid themselves.
On Friday afternoon, Rylynn received a special visit from Reveille and the Yell Leaders. These guys and Miss Rev are so busy that it's crazy that they were able to take the time for a visit with a little girl. We were nervous after a week of not feeling well at all and with so much excitement and a handful of strangers, we had no idea just how Ry would react. She did wonderfully though. She LOVED Reveille! She made a card and couldn't wait to give it to her. Miss Rev was perfectly well behaved and gave Ry lots of attention. I have included lots of pictures!

About to head out of our room to meet Ry's special guests.

Having a tea party while we wait for Miss Reveille to arrive.

Ry thinks she is so soft!

Look Rev is trying to take a nap.  She thinks this is funny!!

Our Lil Aggie.  Class of '31

Ry is giving Miss Reveille the card she made for her.

Miss Rev holding her special card

A picture with the whole gang!  The Yell Leaders were even nice enough to lead us in a yell! 
Thank you so much guys, it really meant a lot.

On top of all of this fun for Rylynn, they even worked with the athletic department at Texas A&M to get two tickets for the game so that Gilly and I could get away from campus for an afternoon. I was so nervous about leaving Ry for an afternoon. I haven't left her during the day like this for such a period of time since she was admitted over two months ago. My mom and dad stayed with her and she of course did fine. Gilly and I enjoyed the time together, but we both wanted more than anything to have Ry with us. There was in fact an empty seat next to Gilly and we longed for Ry to be in it.

Pre-Game on the sidelines

We were graciously hosted by some of the team personnel who introduced to a couple of very special coaches, past and present. Each person that we met with the football program on Saturday asked how Ry was and sent their love and prayers for her. It was incredible to know that so many folks that have never even met Rylynn know her story and are following her journey. It's also interesting so hear how each of them lifts her in prayer or reflects on her illness. This was a weekend to remember.

I don't know if I'll ever be able to thank Cindy and LeeAnn for all that they did, but I hope that one day I can share kindness to a stranger the way they did for us. It is truly something special to be an Aggie and I will always be proud to be a part of the Aggie family, even more now than ever before.