Rylynn "Hollywood" Riojas

Back in May when Rylynn was bumped to the 1A transplant list because of her condition, we were approached by the PR department at Children's about participating in a series they were working on. In the event that Ry received a transplant before August, they'd like to have permission to film a bit in order to be a part of a documentary series featuring her surgeon Dr. G. We agreed.

We have on several occassions been filmed and interviewed while here at the hospital. Since Ry has unfortunately not been transplanted I'm not sure how we'll fall into the story line. Seems like they've filmed a lot of footage, but who knows if we'll even have much of a part in it. I was worried that since we live out of the Dallas viewing area that we wouldn't get to see it, but guess what... I'll get to watch it right here in the room that some of the footage was actually shot! If you live in the dallas area, check it out this Wednesday.

WFAA 8 Wednesdays at 7:30pm CST 8/3, 8/10, 8/17, 8/31, 9/7

Below is a link to the promo video. Ry is in it! This footage was taken while we were admitted back in May. Don't you just love those big beautiful yellow play-do eyebrows! She's going to kill me one day if that's the only 2 seconds they include and she's wearing play-do eyebrows! :)

Rylynn's big adventure!

Yesterday was a big day for Rylynn! She had her usual morning therapies, dressing changes, etc. and then the big adventure... Our child life coordinater, Chelsea got permission from Ry's team of doctors to take her downstairs for a few minutes for an event they were hosting for all the patients here at Children's. It was Christmas in July which included carnival-like games, music and other activities. Our intent was to arrive 30 minutes early to avoid contact with the other kids. It took a little longer than we anticipated to load up and mobilize so we only arrived a few minutes early. Honestly, Ry was less than impressed and even a bit overwhelmed, but she really enjoyed the walk down. She was able to see the train, butterflies, and some sunshine in the bright corridors. It was no easy feat getting her down there and we're so thankful that the staff went to all the trouble that they did for the quick trip. I know it was good for Rylynn.

This is the first time EVER that Ry agreed to wear a mask. I was so proud of her!

When we arrived back to our room, Ry had another surprise waiting for her. Our transplant coordinater, Laurie was excited with Ry's new found appetite and surprised her with Sprinkles cupcakes! These are our favorite cupcakes ever! There was a pink one for Rylynn and she ate half of it all by herself (which is more than she's ever eaten). Yay!

Today we've had a good day hanging out with Daddy. Ry had PT this morning and Gilly was so proud to see how hard she worked. I just wish she didn't always cry through her entire session. :( I was so proud this morning, Rylynn bent down three times to pick a ring off the floor. I know it couldn't have been easy and she used all her strength to do it with very little help. She can now stand while only holding someone's hand or onto something for support. Today we sat her up in bed for a long time while the three of us played blocks, colored, painted fingernails (Daddy barely escaped with clean nails), watched movies, and ate snacks. It was a nice day. The weekends are nice and quiet here. We have only one therapy session and much fewer staff popping in.

Ry has finally come to appreciate getting creative with her "bandaid". The dressing is changed daily and for many days we asked to decorate it with stickers or pictures and she'd have no part of it. But the past two days she has helped pick an animal to be drawn on it. Yesterday she got a puppy, today it was a penguin. Pretty cute, huh?

We are still having some real problems with Ry's night time sleep (or lack there of). Tonight the physician have suggested that we give her a mild sleep aid. It's important for her to get those solid ZZZs in for her body to rest.

We are hopeful that Rylynn continues to make steps forward. She has done so remarkably well.

We're still praying there is an angel heart out there just for Ry.

Berlin Heart- One week later

What a week. Ry never ceases to amaze me, she had another very good day. They are forever tweeking her medications, but that will be an ongoing trend with the VAD. I no longer have the knot in my stomach all day, every day; just a mild constant worry. Today she lost two heavy pieces of hardware. Her last chest tube was removed as well as her arterial line. So although she is still connected by about a dozen tubes and wires, those were biggies. We are actually crossing our fingers that we can connect her to all portable devices and poles and make a lap around the unit tomorrow. It will be good for her although quite a chore ( I pity our nurse tomorrow).
Ry's puffiness has almost completely gone now. I can't wait for Gilly to see her tomorrow, she looks like her old beautiful self. I was able to hold her hand as she fell asleep tonight, it was wonderful to watch her pretty face fall fast asleep.
I am quite exhausted myself and am going to try to catch some ZZZs before she wakes during the night. I will try to post a little more tomorrow.

Berlin Heart- Day 6

Let me start with a quick update on Ry. Today was another busy day, but she is still doing great. It was the first day since Wednesday, a week ago, that she ate a bite. I've offered her all her favorite things for days, but she declined it all. But this morning she had two tiny bites of egg, throughout the day she had a handful of goldfish and tonight she ate three penne pastas! Yay! And it was all in the nick of time. They were going to start nightly tube feeds tonight if she didn't eat. They have decided to give her lipids via IV tonight to give her a boost, but they won't make her feel full and lose what little appetite she may have. So we pray for more improved appetite tomorrow and see what the docs say.
Otherwise she did better during her therapy sessions and is starting to talk a little bit. I miss my motor mouth. I hope she's back soon.

Humbled...
Tonight nearly 80 people gathered in my home town to pray for our sweet Ry. Friends came from Lampasas and near Coleman and from many other places to pray together for her. My cousin Samantha was so sweet to organize the gathering and the Deacon was there to lead everyone. Those who attended were family friends new and old and I appreciate them all. Neither Gilly nor I could be there, but we each took our moment at 7:00 to pray. Another service was held in Bremond by my cousins there. Their turn out was great and so many of those who joined there I have never even met. We love you all. Thank you.

Why...
For many days of Rylynn's life I have asked why. Why did God choose to bless Gilly and I with such a special angel? Why should Ry have to suffer when all we want is for her to be healthy? We trust in God's plan, but do not always understand it.
In the last week, while here in the ICU, we have witnessed other families suffer. For some reason, this time has been different than our other admissions. Two families have lost their specials angels. It has been awful to sit in your room knowing the pain they must be going through just steps away from you. Today we learned that another one of our heart buddies, sweet Elijah has also been sent to Jesus. We met Elijah and his mom when we were listed for our transplant in December. They were always someone Gilly and I tried to look to for hope. He was doing wonderfully with his new heart and we want the same for Ry. We felt the same loss and dispair earlier this year when another one of our transplant heroes passed. This fear that we face daily with Ry will never fade. Even in good times, even with a new heart, even with medical strides, we will never rest easy.
But for tonight, I will know that Ry is blanketed with prayers. I will lift those who have left this world and those who are still here fighting. May God bless each of them.

Good night.

Berlin Heart- Day 5

I almost decided not to write tonight and just leave you with the following picture. But I figured I should atleast give a bit of an update.

Today for the first time since her surgery we saw a real smile! It makes me so happy! I do have to admit though, this smile came after an exhausting bath and a dose of morphin! I think Ry is smiling a happy smile because of the drugs, but I'll take it!

Ry was such a champ today. She had a busy day filled with PT, new IV placed, dressing change, IJ line removed from her neck, OT, an echo, a sonogram, a little play therapy and a bath. Any one of those items were enough to put her out, but she made it through them all. I was so proud that she sat on a bench supporting herself for nearly 15 minutes and even stood with lots of help. Her poor wobbly legs were just like jello, but she even moved her feet in an effort to take a couple steps. Yay Ry!

Tomorrow we do it all over again. I hope she begins to get comfortable with each of her caretakers. I think tomorrow I am actually going to count the number of different people that walk into the room throughout the day.

I'm too tired to write anything else for the evening. I am hoping Ry sleeps well in her bed tonight. Last night I had to lay with her all night. I was actually happy when I heard her call my name at midnight. It had been too long since I heard her little high-pitch "Mommy?"

Good night. Sleep tight. Prayers for good day tomorrow.

Berlin Heart- Day 4

Today has been a good day, but with still very slow progress. Because I posted a little early last night, I did not get to mention that we were able to get Ry carefully out of bed and into my arms. I have to admit that it was not the sweet snuggle that I've been missing. It was awkward and I'm afraid very painful for Ry. She was only able to sit with me for about 20 minutes (just long enough for them to change the linens in her bed). Then she was given her pain meds and tucked in for the night.
Today was another sleepy day for her. She is only on Tylenol right now for pain (which worries me- how can someone only five days after open-heart surgery and huge canulas sticking out of their chest only be taking Tylenol)! The other pains medication seemed to just make her too sleepy. So now she just gets a little morphin before dressing changes or other painful things. Today she already had to meet with OT and PT. They sat her on the side of the bed and Ry just trembled. She was doing amazing and held herself for about 5 minutes, but I just don't know if she was trembling because she was weak or because she was in pain. I wish she could tell me. The crazy thing is that Rylynn has not cried one single time since waking up for surgery. It breaks my heart to think maybe it hurts too bad to cry or mayber she's too scared to cry. I'm sure this isn't the case, but it seems strange that a two year old with pain or anxiety wouldn't let out a few tears. Maybe she's just so stinkin' tough that she hasn't felt like wasting her tears.
Today Ry was still on fluid restrictions so she's not able to drink much. She is on a regular diet and they are encouraging her to eat anything she wants. Unfortunately, the only thing she's had since Thursday is ONE cereal puff. She didn't even have the strength to chew it. It just desolved in her mouth after a while. Maybe tomorrow she'll have an appetite for something. I think they will have to start feeds in her feeding tube in the next 24-48 hours to get her some proper nutrition. I'm not thrilled about her feeding tube, but I do want her to get some vitamins and nutrition soon.
Tomorrow we begin a "schedule" for Ry. I say this loosely because she literally sleeps about 18-20 hours a day right now. But we are scheduled for PT, OT, and play therapy tomorrow. We'll see how well it goes...
I know there is probably more to report, but I am exhausted so I'm heading to bed.

I do want to announce that Ry got a new baby cousin today! Tanner Robinson Hall was born this evening. It's Jamie (Gilly's little sister) second little boy. Ry was absolutely looking forward to feeding the baby a bottle and I hope she is able to soon.

In addition I want to say thank you to all of those who organized a rosary and prayer service for Rylynn on Wednesday evening. It will be at 7:00 at Moravian Hall (Jarrell, TX). If anyone wants more information, email me and I'll get you touch with someone who can help. When I found out about the service I was so touched. I know that God will be there and hear your prayers. All we know to do right now is pray and it is such a blessing to know we have some many joining us. A lot of folks think growing up in a small town is lame. But this is truly what growing up in a small town and a wonderful church community is all about. Again. Thank you.

I know we still have lots of hard days ahead of us, probably a few worse before better, but she's moving ahead. I'll keep you all posted.

Berlin Heart- Day 3

Rylynn has always been one to keep us on our toes... last night was no exception. She went from sleeping peacefully to desatting into the low 40's without any warning. With some high flow vapotherm and a few med adjustments we got her back to her baselines and a few hours later she was resting peacefully. She however then proceeded to sleep ALL day! She seriously did not wake until 5pm. She woke up, ate some ice chips, drank a little juice and milk and had a few sips of a chocolate milkshake. We even blew a few bubbles at Rylynn's request. She's now fast asleep and probably going to wake up again tonight ready to party (let's hope not).
The doctors had hoped and even requested that Rylynn could sit up today and even dangle her feet off the bed. She was no where near ready for that so they had to settle for us just raising her bed a bit. I'm nervous because tomorrow we are supposed to meet for play therapy, physical therapy and music therapy. But if she's anything like she was today, there is no way she'll be ready for any of that. She's still retaining a lot of fluids and the poor thing is so swollen from head to toe. I hope her skin does not ache from being stretched so tight.
We pray for a quiet night and an even better day tomorrow. I'm so ready to chat with the little munchkin and see her give me a smile.
Good night to all and I'll check in again tomorrow.

Berlin Heart- Day 2

I know the day isn't over yet, but Ry is resting so I figured I should post while I have the time.
Today was a VERY nerve-wrecking day. Gilly and I felt nervous with every passing hour. We are overall getting a very good report for little Miss. She is just now 48 hours post-op so we still have a long way to go in her recovery. Last night Ry slept pretty well throughout the night. She had only a little discomfort and we tried to manage it so that she stayed pain-free. She would sleep for about an hourt and then wake for 10 minutes or so. She was asking for water and milk, but only received ice chips after 3 am. Today she had tolerated a little juice and water, but her fluids are restricted so that she does not start to retain more than she can excrete.
The doctors and nurses had a day filled with managing high blood pressure, pain, high glucose, low grade fever, pressures to and from the heart and more. They began her heprin drip to anti-coagulate, did a dressing change, did a chest Xray and more labs than I can count. Like I said Gilly and I have been concerned throughout the day, but all in all the doctors and surgeons are pleased. And if they are happy, we are happy.
We are hoping for a restful night for Ry. Today the Nurse Practioner told us that we should expect some steps back along the way, but right now Ry is running forward!
We are still petitioning for those prayers. We are truly humbled and grateful for all the well wishes that we have received from friends, family and even strangers. Thank you all from the bottom of our hearts.

Berlin Heart Day 1

Our Sleeping Beauty with her beautiful braids

Ry had a great night. She is doing very well on her road to recovery post-surgery. Even as Ry came out of the OR, her liver had shrunk down in size and her labs are showing that it's much happier. The pressures in her heart are improved, her lips are pink (not blue), her sats are in the 80s and she's not near as puffy. Although we will still experience a bit of post-surgery swelling, she looks so much better than prior to surgery. That is the reason I haven't posted any pics of her lately. The poor thing could barely open her eyes because she was so puffy on Thursday.

Here's a bit of a medical report for you all...

Her VAD is operating appropriately and her organs are happier. The surgeons commented on the size and function of her heart. It is so large that she can receive a heart from a donor that is 2.5 times her body weight. It is also completely globular, it no longer is the shape of a "heart." There were a few times during the surgery that her heart just wanted to give up, but the surgery team says it is expected and that she responded well with their efforts.

So here's where she stands. They have not begun the anti-coagulation, but will tomorrow. (FYI: Anti-Coagulants = substance that stops coagulation or keeps your blood from clotting. This word comes up in nearly every sentence when talking about the VAD. This is why bleeding is such and issue. She will be VERY anti-coagulated while on the device.) This leads to bleeding. Bleeding leads to blood transfusions. Blood transfusions lead to introduction to more protiens which raise her antibodies. This can raise her PRA numbers significantly. If you remember back when we were being evaluated for the transplant, PRAs play a very important role in determining which heart Ry is compatable with. The higher the PRA, the much less number of matches. In most transplant candidates, Doctors do all they can to keep from transfusing any blood because it has such a serious consequence. In this case, we will not have that luxury. This is why there is such urgency to get her off the VAD and into the OR for a transplant.

Here are a couple of pics I wanted to share. The first is a picture of the device. It has two large canulas, one for inflow and one for outflow which are placed in her lower chest, just under her rib cage. The blood pumps through the device through pnuematic pressure from the mechanism in the second picture. This is called the driving unit. It has a pnuematic pump and a computer. I don't think we're ready to post pics of the device on Ry just yet. But with time we'll share some pictures so ya'll can understand how the device looks and feels for her.

The Berlin Heart (Ventricular Assist Device)

The Driving Unit

Gilly and I tried to rest in preparation for today. We have been told that it will be very difficult for Ry to come out of sedation. They are managing her pain, but she is intubated and won't be happy about the tube down her throat. In addition, she has ALOT of new hardware and will be apprehensive about it all. The worst part is that I can't scoop her up and hold her in my arms. On the flip side, we have warned our poor nurse today of Rylynn's super sassy and demanding attitude. I have a feeling there is going to be a battle in Room 8 today and I've never known Ry to give in! :) I just hope fiesty little Ry is in there somewhere.


Thank you so much for all of your prayers and support. God is listening. Please continue to pray for Ry. We love her with all of our being.

Almost out and getting a good report

We haven't see Ry yet, they are finishing up in the OR. Despite one very scary moment, it sounds like she did well. We are anxiously waiting to talk with her surgeon to get the full report.
Your prayers have been heard and we ask that you keep praying. Ry is going to have a very critical few days and a very rough recovery. Our constant hope is that Rylynn can receive a transplant in the immediate future.
I will post again when I have some worthwhile news and a few minutes.

Still in Surgery

Ry is still back in surgery. Things are taking a little longer than expected, but they are moving along. There has been a rough moment already in the OR, but Ry pulled through and should be having the device placed now. We still have a long wait ahead so don't expect any updates for a while. Please continue to pray.

Headed to the OR first thing in the morning

Ready or not here we come. Ry did not have a great day. She is not herself and just feels crummy. It's becoming more and more apparent as each hour passes. So we've decided to proceed with surgery in the morning. I have prayed that the next open heart surgery that Ry would face would be with our miracle heart. This is not the case, but we're coming to terms with where we are. We are praying desperately that the VAD will help her and not lead her down the wrong road. I pray with every transfusion she receives that we have not lost our chance at a donor. Our prayers are constant and thoughts are heavy.
Ry needs something and this is our only option. God please be with her along the way.

We ask you bend your knee, bow your head and think of Ry.

so far behind in updaing. . . sorry

I'll make this as short and sweet and possible.Monday I made an appointment for Ry to be seen by the transplant team because Gilly and I felt she just wasn't herself, she had really been working to breath and had some real puffiness.We were seen, labs run, echo done. Doctor's saw some small elevations in her labwork and did not like the labored breathing. They decided to admit her, go up on her milrinone (IV med), and tweek her diaretics. We were not thrilled about having to increase her milrinone to 1.0 because this would now mean that she would be maxed out on the medication and if there were any other changes over time we'd have to resort to other medications or even more invasive procedures to maintain her function.Only hours later, once some additional labwork came in we faced a different scenario. Just as we were getting settled into our room and all of Ry's favorite nurses were coming in to say hi, I was asked to step into a supply closet to talk with a doctor. It turns out that Ry's liver was very unhappy and on the brink of failure. At this time, they did not think that any combination of drugs could help her heart function enough to support her liver. So this left us two options. First, we try medications and pray a heart comes within days/hours. Our second option would be to proceed with a mechanical device called a VAD (ventricular assistant device) which would be surgically placed. I do not have the time to elaborate on the device so I'll let all you curious individuals google it. Beware that most of the data you will come by in based on the device used for adults with a normal heart anatomy. For a pediatric single ventrical patient, things are very different. In fact, the device is not even FDA approved for use in pediatric patients. I also will not go into the overwhelming risks and side effects that we'll be facing. However, at this point it is our only option.
Ry has been stabalized, the equipment has arrived, consents have been signed and Gilly and I have given our blood directly for her. The only thing that has not been done is booking the OR. Doctors have recommended that we watch her hour by hour and wait for a few other things to fall into place.
We are praying with each passing hour that the blessing of a donor heart might come. Your prayers have lifted us through so many difficult times before, please help us now. We pray that God protects Rylynn and keeps her safe. We pray that our earthly timing is as God has planned. We pray for the caregivers who watch over her. And mostly, we pray for the miracle of the a heart.

Sorry for the Delay in Posting

I'll make this post a catch up on medical things and hope to post again soon with some pictures of Ry.
We have since been in the hospital for a short three day stay in which we ditched the PICC line for a Broviac line. This is also a central catheter. This one has the entry point on her lower tummy and then tunnels below the skin to her groin area where it enters a main vein. It then returns upward through the vein and terminates just below her chest. It has been working very well. We've had it in for a little over a week and there has been no saturated biopatches or oozing. Plus the line is much more secured and there is less risk (although still possible) of it being pulle dout accidently. She is handling it very well and does much better with the dressing changes. It is a nightmare to protect during her bath. I had the PICC line shower protection down to a "T". It never got a drop of water in it while bathing, this one I have yet to keep completely dry. :(
Although the PICC was causing lots of problems, the real reason for Ry's most reason admittance was some poor lab results we had received. Her liver numbers were very escalated telling us that her heart could not support her liver function. This is an expected sign of her heart failure. So once we were admitted they replaced the line and then decided to go up on her dose of Milrinone. We started at .5 and knew the highest dose she could receive is 1.0. It is disheartening to know that we now have her at a dose of .75 and she's only been on it for about a month. The doctor's have told us that sometimes they find there happy place and she may stay at this dose for a long time, but it could also mean her heart is changing quicker than desired. The reality of it is that once we tap out on our dose of Milrinone we most likely would have to hospitalize Ry while we wait for a heart. This is scary, actually terrifying, but not something to dwell on or worry about at this time. (I'm still convincing myself of this!!)
The good news is that she's doing very well. She's becoming more active, her appetite has increased and she's still off the oxygen with only a little pick-me-up when needed. We are trying to enjoy our summer, but are having trouble finding things to keep us busy that are cool and germ-free.
We appreciate each email, card, phone call and well-wishes from you all. It's so incredible to know we have so many folks praying for us. Please continue to pray that Ry will do well with her course of treatment and that we will get the special phone call one day very soon.
I hope you all are having a wonderful 4th of July.
With love . . .