The Wild Woman on the Eighth Floor!

Here are some pictures from our week in the hospital. Rylynn was such a trooper!

This was the first night. She had no idea she was in a hospital yet.

She was crazy all night and refused to put a shirt on for some reason! :)

This was Ry's favorite place in the playroom. She loved the kitchen! She sure hopes Santa brings her one for Christmas!!

This is a gingerbread house that Rylynn got to help decorate one afternoon.

She really just wanted to eat each piece of candy.

Pictures from her cousins.

Thank you Tyler, Sydney, and Shelby. They made Ry feel much better!

So happy to be home!

The Riojas clan is finally back in Lampasas, if even just for a bit! We got home late Saturday afternoon and have spent the past two days just enjoying time with Rylynn. Today it's back to work and beginning our move. We hope to have something in Waco in the next couple of days so we can begin to move the neccessities for Ry and I. Gilly will be able to pack up the rest over the next month. As soon as we officially have a place, we'll call the hospital and Rylynn will be listed. We hope to accomplish all of this by the end of the week.
I don't have any new information to share. We are still waiting to receive her PRA number back and should know today. We are praying for low numbers.
I have lots to get done today so I will have to leave you for now. Thanks for following and thanks for all the prayers and kind calls. We love you all!
With love . . .

What a week!

Saturday can not get here soon enough! We have all had about enough of this hospital room by now. Everyone here is doing their best to keep Ry content, but we're all about to go crazy!
I apologize for not posting sooner, but our days have been filled with tests, meetings, exams, labs, Xrays, MRIs and the list goes on. And when we're not busy with something, it's a full time job to try to distract Ry and keep her occuppied. We are lucky that she has some mobility with her monitoring devices, we're able to walk around the unit and hit the playroom twice a day which helps.
So here's a recap of our week since Tuesday and where we are now. Wednesday Ry had her heart cath which showed low pressures in her heart and lungs which is good with a struggling heart. Wednesday afternoon we were also officially approved by insurance to start a pre-transplant work up. As soon as the paperwork went through, Gilly and I sat down with the transplant team. (And they do have an entire team, but I'll get to that later.) We received some very grave statistics and also some inspiring stories, but no matter how you slice this it's not going to be easy for Rylynn especially and for Gilly and I as well. The transplant is our only option, but as they have told us time and time again "a transplant trades one set of problems for another set of problems", but our goal is to give Rylynn the best quality of life that we can. With a new heart she should be able to live a fairly normal life. Yes, the heart will grow with her. No, it won't last forever. Yes, we will ALWAYS have to worry about rejection. Yes, she will have to take meds everyday for the rest of her life. (Those are a few of the questions we get a lot.)
The transplant Docs also told us the one thing we were very afraid of... Lampasas is too far from Dallas to be listed. Rylynn must be within two hours of this hospital at all times from the moment she is listed. We were first told this would be today, but last night they said we have till next week. This is best news ever! It's hard enough to know your daughter has a failing heart and we're now waiting at the mercy of a matched donor, but we will also be uprooted and making some difficult moves :(
So that was Wednesday.
Yesterday was filled with conferences. We had to meet with child-life specialists, psychologists, social workers, financial counselors, nuerologists and more. Each one taking about an hour to evaluate Rylynn and interview Gilly and I, what a loooonnnngggg day! Today Ry is having an MRI, labs, and a chest Xray. She hasn't eaten or drinkin since last night and we have 3 more hours to go! Pray for us this morning!
We're hoping once we knock out the last few items that they will let us go tomorrow!! We will be headed home to regroup and start packing up. Ry and I will most likely be moving to Waco, we'll have to lease out our house and Gilly will be stuck splitting time with us in Waco and out at the ranch. It's heart-breaking that we had finally been settled in the home we wanted Rylynn to grow up in and had the perfect yard for her to run and play and now we have to suddenly (although hopefully temporarily) leave behind. It's heart-breaking that Rylynn will not see the horses and cows. It's heart-breaking that Rylynn will not get to visit her Gi-Gi and Pa-Pa or Mi-Mi and Papi in their homes. Augghhh... this is so unfair to her.
That's all I can write for now...

Here are the prayers we are asking for:
Pray that Rylynn's heart handles her sedation ok today.
Pray that her PRA numbers come back favorable today.
Pray for Rylynn's happiness.
Pray for Gilly and my strength.

With love. . .

Up Here in Dallas

So we've made ourselves comfortable and have refamiliarized ourselves with "Jack the Rabbit" dining and parking passes. This time around it's very different. Rylynn does NOT want to sit in her room, she wants to walk the halls or play in the play room. That's been the hardest part of passing the time here. I could not be prouder of how she has acted with all of the doctors and nurses, she is such a trooper!
So far we have received the standard EKG, Echo, and chest Xrays along with gathering her stats 24 hrs a day. Tomorrow we have been scheduled for a cath and pre-transplant work up. We are currently set for the 11:00 slot, but hope to be bumped up. Either way we will see a similar procedure to one that we've done before. They will put her under, give her a breathing tube and hope to enter through the groin. All of this will take a few hours.
After reviewing the heart function that has shown up on the echo here, the Drs agree that they don't expect to find anything that can be repaired while they are in there, but are going to measure pressures and check some functions between the heart and lungs. On the first night we were here they were hopeful they would see something that we could surgically repair, but as time passes is seems we are definitely on the transplant path.
Gilly and I have a million questions and concerns, but won't sit down to conference with the team until after the cath and work up.
Tonight we pray for a smooth cath procedure and recovery. Although she has done well in the past we must remember her heart is not as strong now. We also pray that the labs will show that Ry is a good candidate and will be an easy match. Please lift her in prayer.
Good night.
With love . . .

Happy Thanksgiving!

Despite it all, we plan to have a Happy Thanksgiving surrounded by family.

We hope yours is wonderful too!

Guess I lied...

So I guess you can try to prepare yourself for bad news, but it is no consolation as you hear the Doctor talk.
Ry was wonderful throughout her appointment this morning. It is often a screaming marathon and very difficult, but this morning she was perfect. She sat still and quiet through each piece of our two hour appointment with practically no tears. We were so proud and felt it was a great sign of good news to come, but unfortunately that was not the case. It seems that Ry's little heart muscle is getting weaker and even quicker than the Cardiologist could have expected.
What does this mean?
Well first of all, a not-so-happy Thanksgiving. :(
But more importantly it means we are headed to Dallas immediately. We will be in Dallas on Monday morning to admit ourselves. Because of the holidays, we were not scheduled for a cath, but Dr. Lemler says get yourself up here right away and we will work you in on Tuesday or Wednesday. They want to perform a cath (even though they don't think they will find anything other than what they already know) and while she is out, they will draw lots of blood and lab stuff. This will be used as they immediately place her on a transplant list. Yes, that is where we stand. Knowing that our very active and healthy and wonderfully perfect little girl needs a heart or we will very soon start to see her getting very sick. It is still so hard to comprehend, understand and accept.
I don't feel the need to continue this entry. We are overwhelmed with unanswered questions and look forward to talking with the transplant team next week. Mine and Gilly's hearts hurt and ask that you pray for our strength and for Rylynn's health.
We will keep you posted next week, please check back.
With love...

Tomorrow's appointment...

Prepared for the worst, praying for something better.