We're back on the list.  Officially she's listed as a 1A again.  She was removed from the transplant list for approximately 24 hours.  We were told to expect to be Status 7 for atleast 3-4 days while Ry fought off the couple of infections that showed up in her system.  Thankfully last nights labs showed such an improvement followed by a slight, but steady improvement this morning, that the doctors decided it was appropriate to relist her.  We're so thankful that it was such a short time.
More good news for Rylynn meant a visit from a few very special Aggies today.  I don't have pictures to post yet and don't want to tell too much, but I can't wait for the time to sit down and write all about it!  I fun post to follow, I promise!
Sleep tight!

Enough said :(

Ry and I had a great weekend with Gilly.  He was able to come in Thursday night which was really nice.  Ry was feeling good, talking like crazy and even a little silly.  It was so great to spend time together having lots of laughs.  She continued to great in thereapy sessions and even enjoyed a couple of new places to see in the hospital.  And an added bonus is that she slept great each night.
On Thursday night, Ry hung out with Mimi and Ryan while Gilly and I grabbed a quick dinner off campus.  We had not been able to eat a meal together in a couple of weeks so it was nice and as you can see, Ry really enjoyed some silly time with the girls.


Monday was another good day, and I even got a little treat myself.  My sister, Jessica, my best friend from high school, Cheryl and my hairdresser and friend, Amy treated me to a few hours out of the hospital and a fresh hair-do!  It was so nice to be off campus for a few hours and fun to have some girl talk.  Thanks girls!
Tuesday was another good day, but Ry wasn't her silly self.  Mom and I both commented on her slight change in demeanor.  After our second stroller ride downstairs we came back to the room just prior to shift change.  Rylynn suddenly complained of her head hurting, grabbing it and crying out.  Then only minutes later she threw up.  It was the strangest thing.  The docs immediately wanted to run a CT to make sure something had not happened nuerologically.  (We had been having some issues with her anit-coagulation levels and wanted to make sure she did not have any bleeding on her brain.)  She seemed to be feeling much better as we had made our trip down to Radiology and she was even up for taking a detour on our way back so we could look at all the lights outside.  We never get out of the room after dark so it was fun for her to see a few interesting colored lights outside the hospital windows.  Luckily, results came back quickly that everything looked fine.  Unfortunately after our nightly bath, she was sick again and throughout the night.  By 2:30am this morning she finally had stopped being quite so ill (only ocurring now every couple of hours).  She did spike a fever though.  Around 4:00am they drew blood cultures, a urine culture, and a culture from her PD cath.  We also took a belly xray and then later a chest xray.  It was a very exhausting night for us all.  Our poor night nurse was so busy all night long... sorry Katie!
So preliminary results on the cultures have begun coming back.  It looks like there is an infection with her PD cath.  we are starting antibiotics right away (although its been an hour and they still aren't being administered).  We are hoping to see a turn around within the next 24hours.  As of right now the team has no decided to change her status to a Status 7.  If in 24 hours we don't see some major improvement, she will temporarily have to be taken from the transplant list.  I just hope Ry can rest adn stay somewhat comfortable for the next day or so.  Right now she look awful and feels so crummy.  Her color is completely drained and we've changed her pillowcase already twice this morning because she is completely saturating them with sweat. 
Ry was expected to have an exciting end of the week, I sure hope she's feeling well enough to fulfil her social obligations...  she's such a busy little lady!
Here one more funny video of Ry.  Every evening I have to fight her to get in bed.  She wants to "sit purple chair".  Which means she wants to sit on my lap in the purple chair.  This how hard she does not want to go to sleep in the bed. 

She insists that she is not tired and still wants to play.  Notice her awesome PJs that match puppy's awesome PJs.  (These nurses spoil her way too bad! She gets the coolest things from them.)  I think I have a better picture of the two of them together.  I need to get it up loaded for ya'll to see.
I'm going to try to catch a quick nap while Ry is sleeping.  For two days in a row I'm going on only a couple of hours of sleep. 
Please pray we can have Ry feeling better really soon.

I wanted to thank you all for those prayers for restful nights.  We have had two nights in a row of good sleep around here.  It has been good for us all. 
Good nights sleep has led to some great days filled with lots of playing, adventures and smiles.  We're off to a busy start here again today.  I have to get back to Ry, but wanted to let you all know that I truly appreciate those prayers for better rest. 

It's really incredible to think back over each day this past week. I can not believe that on Wednesday of last week we had thought we lost our little girl. The past two days she is our beautiful, lovable, huggable, talkative Ry. Oh how I've miss her!
The flow of folks to our room over the past few days and the comments they have offered says it all. They are just as surprised and happy as we are. Ry now offers them smiles and waves and stickers instead of mean looks or words or even worse seeing her swollen lifeless body. We have truly seen a miraculous turn around from our desperate situation. We are so grateful!


What this picture doesn't say is... I never want to sleep... ever!
I have almost had a breakdown a few times this week. They come in the wee hours of the morning. They come despite the fact that I've had mom and my sisters here this week helping for a few days. They come from lack of sleep.
Ry has had no desire to sleep since Sunday. Here's an example of last night:

11:00     Rylynn fast asleep
11:15     Mommy fast asleep
11:45     Ry wakes for 10 min
12:25     Ry wakes for 10 min
12:45     Ry wakes for 20 minutes
1:30      Ry wakes for 5 minutes
2:45      Ry wakes for 10 minutes
4:00      Ry wakes...
6:00      Although she's been up for two hours, I'm convinced she might fall
   back asleep, we're so close (hmmm. At this point should I get up to shower
   or attempt to sleep a bit more.)
6:15      Never mind she never fell back asleep and she just threw up
   EVERYWHERE.  Time for another bath, hair washing, bed change, and laundry.

This crazy night of no sleep is after a busy day just like our previous day. We have gone for stroller rides, played with our sand outside (so exciting), shopped at the gift shopped, played playdo, painted, colored, painted fingernails, blew bubbles, made some bead necklaces and I can't think of what else... Notice I did not mention a nap! This two year old did not even take a nap! Most two year olds need 12 hours of sleep during the course of 24 hours... We're barely getting 5 restless hours in and she's operating at full throttle each day.
So just as I think I can't make it and throw myself a little pity party in the wee hours of the night, we wake to have a wonderful day and that gives me the strength to keep going. I guess sleep is overrated anyways.
Thank you all dearly for the prayers that we've received over the last week. I'm learning there are different kinds of worry and fear and that was one that I have never experienced during our journey over the past 2 1/2 years with Rylynn. I am grateful that she has pulled through this challenge and I pray we will be blessed with some good times with her now.

I am here with Ry day in and day out. I would literally do anything to take away her pain and her fear. I see her struggle through the little things and the huge things. For the past few days, Rylynn has proven once again how strong and amazing she is. She has been intubated since Wednesday and much to my surprise she has been awake a lot since then. We have been lucky enough that the only times Ry has ever been on the ventilator over the past two and a half years have been post-op. We've always been lucky that she's been extubated very soon after. During those time she was heavily sedated because of the procedures and I just didn't realize that this time since we had her on the ventilator to give her body the extra help it desperately needed and not post-op that she'd be so conscience.
With no extra pain medication and only a little sedation medication to help her stay a little mellow, she has been amazing. She has not been able to speak (the tube is between her vocal cords so she can not make any sound), but has still been awesome at communicating with us. I have been able to make out most of her requests. They have to suction out her tube a few times per hour and although it makes her gag and feel the urge to cough (which looks so painful), she opens her mouth when they ask, even through her tears.
She has been begging for a drink with a straw, but has listen to me explain that we have to wait for the Doctors to say it's ok. Upon waking from surgery and feeling the tube for the first time, she did try to pull on it, but after I explained that she could not pull it out because it makes her feel better, we have not even had to use arm restraints. Can you imagine this behavior from a two year old? She has so much to try to understand and to suffer through, but every day she amazes me. It breaks my heart during the times she is scared or hurting, but I just hold her hand and try to talk her through it. I hope that these experiences at such a young age will not scar her or make her someone that she was not intended to be. I pray they will make her stronger for all the other challenges she will face in her lifetime. I pray she trusts Gilly and I and understand that we are here to help her and protect her even though sometimes she endures pain.
Here is a picture of Ry before she gets extubated today. We are praying that she is strong enough to breathe on her own.
Isn't she looking sassy today? She endured a bath and bed change yesterday evening that took almost an hour and a half. She did great and looks so much better.



Yesterday when Gilly was leaving for the aTm game. He handed Ry his tickets to look at. She DID NOT want to give them back. He didn't want to make her cry to get them back either. He eventually traded her for an old ticket stub and she held on to it most of the afternoon.

On a follow up note... last night I finished blogging and hurried to bed by 10:00. Ry was up by 11:00! We managed a couple of hours of sleep, but please say a little prayer for some more restful nights this week. I can not manage on two and a half hours. Please Ry, I need atleast 5 hours of rest if you want me sane and able to follow your medical care like I would like to.

Ry has had another good day. Her fluids have poured off and she looks like our sweet little girl again. She's still intubated, but has made huge progress in efforts to wean her. Despite the fact that doctors told us it would be up to two weeks before we could extubate, we are hopeful it could happen soon.
I promise to give a more thorough post tomorrow. For now I'm praying for more than 2 1/2 hours of sleep... starting now.

Ry had a wonderful night and a good day (relatively speaking).
I apologize for that rambling post yesterday. Things were so bad that I could not bring myself to sit down and put the words in writing. My heart was breaking and Gilly and I were scared. The staff here knew Ry's desperate situation and through their body language as well as the updates given, we knew that Ry had reached a really critical point.  We truly were unsure of what the next 24 hours would bring.
Her kidney's once again slowed way down, but her body was continuing to hold all her fluid in her tissues. And despite the fact that she was so swollen from fluid that she couldn't bend her arms, breathe well, or hold down any feeds, she was actually vascularly dehydrated. Her lungs could no longer expand and her blood gas levels were not good. All of this meant a trip to the OR. Our only hope was that we could place a drain in her abdomen so help alleviate some of the fluid. She needed to be intubated for the procedure. We already had started her on CPAP and surgery or not it was time that Ry be put on a ventilator. So yesterday upon returning to her room, they tapped the abdomen drain known as a PD Cath and thank God it began to drain fluid. Lots of fluid! Almost immediately after that she started producing lots of urine. These are the two things we were praying for, but were prepared for in the event they did not.
Ry dumped 800 mls from her PD Cath and nearly three times the amount of urine she produce in the three days prior in just the first few hours.
Yesterday, doctors also prepared us for the reality that Ry would most likely need to be on the ventilator for up to a couple of weeks. In the past, some kids just can't be weaned. This was also a harsh scenario for us. We know that based on Ry's situation it could be many months before or even if a donor heart is available. So the idea that Ry would be placed on the vent and not able to come off is not feasible. I am happy to report that throughout the day they have been able to wean Ry's settings so there is hope she will be able to come off with a little time.
Today has been a day filled with small, but important steps in the right direction. Please, please continue to pray for Rylynn. We appreciate each phone call, text, and email from friends and family, but most of all we appreciate your prayers.

The chest tube did not help Ry at all.  Despite the fact that she dumped nearly 15 ounces of fluid off her little lungs!!
We have in fact had a terrible couple of days.  Ry has taken a real down turn and the doctors have done what they can to stop what seems like a terrible plummet.  Today she was taken to the OR for a PD Cath to help drain her amdomen cavity and pull fluids off her completely over-loaded body.  She is holding about 8 lbs of fluid!  This is awful for someone who only weighs 22-23 lbs.  Imagine gaining 33% of your body weigh in two days.  She looks and feels miserable.
Ry is holding all of this fluid in her tissues despite the fact that she's dehydrated.  Don't ask...
We pray today's procedure will be what she needs to get her more stable.  She is unfortunately now put on a ventilater which means she is no longer breathing on her own.  Ry has been intubated for numerous procedures in the past, but this time weaning her may not be possible or atleast not in the near future.  We pray that she proves us wrong.  We have been warned that she may be in this condition for a week or two at the minimum.  Let's pray her lungs are strong enough to come back.
I will end this post with the news that she is stable and slowly draining.  Please pray she continues in a positive course.  I am too overwhelmed to write anymore at this time, but will update more tomorrow.  We appreciate your prayers.  Our little girl needs them now more than ever.

Ry just had a "pigtail" chest tube placed. Less than an hour later, 300mls have drained. There was still some question this morning about whether or not we should go ahead with it, but Gilly and I agreed it would be best for Ry to get the fluid off so that she could start feeling better. I know it will be painful for a couple of days, but the results should be worth it.
I just hope we see an improvement in her saturation levels soon.

Gilly just left.  Ry is taking a late afternoon nap. So I figured this was my chance to update everyone. 
On Friday Ry did indeed get a new pump.  She did well through the procedure.  We asked how her heart reacted when the pump was momentarily disconnected and they said it kept beat strong!  Of course, it still could not support her but only for minutes.  It's somehow reassuring to know her little body is still fighting!
Since Friday we've battled familiar issues. She is still very puffy and we are slowly removing it, but at a slow steady pace.  She had accumulated a bit of fluid in her chest (not surprising), but we had hoped the diuretics would continue to pull it off. 
This afternoon we are beginning to think we will have to do something further.  Ry's been super agitated and just not feeling great.  She's grumpy and uncomfortable which just breaks our hearts.  She is smart enough to grab her central line and pull on it yelling for medicine.  We have obliged when we can, but just wish we could nail down what it is that's bothering her.  Her breathing is more labored, her sats are down and her labs are trending down a bit.  These few things are all leading us to think we'll have to lace a chest tube tomorrow sometime to drain some of that fluid.  I guess it's just too much.  I'm so heart-broken we'll have to put her through that pain again (it will be the super painful kind), but I'd love to get the fluid off so we can continue to move forward.
We had lots of great visitors here on Friday all cheering Ry on for her pump change.  It's so nice to have such a great support system.  Gilly and I are so lucky.  And Ry is so loved.
It's quiet here now again.  We'll miss Gilly this week and always looked forward to our Fridays.  Please continue to pray for Ry this week.  I'll try to update again soon!!

I started the day with this text to Gilly
"Think its going to be a good day.  I love you."
It went down hill from here...
So for the past two days, Ry has not been able to stand or put any pressure on her right leg.  At first it was noted, but not followed because she had just been through a lot.  It was also noted and followed that her right arm and leg were quite swollen.  So today we started the day with a sonogram of her right arm and leg to check for any blockage in her vessels.  We then headed downstairs for a CT scan.
Late in the afternoon, some extremely young nuerologic Fellow named Dr. Dangle comes in to asses Ry just as the ICU docs had suggested.  The first words out of her mouth were so I guess you heard the results of the scan.  We have found evidence of a stroke.  A huge lump rose in my throat and I tried to hold it together.  The words hit me like a ton of bricks.
We are always aware of the risk of stroke that Ry has as long as we are on the anti-coagulation medication and with the Berlin itself.  Before I elaborate, let me say that God truly protected Ry from what could have been a devastating scenario.  She can overcome this.
So for the past several days, the staff has been monitoring a fibrin and thrombus on her out-flow cannula.  They come and go, but these two were more significant and worth quite a bit of attention.  Our best guess is that a piece of one of the fibrins came loose and became lodged in a vessel in Ry's right frontal lobe.  The area is very small and not seen well on the CT. Ordinarily an MRI is ordered, but because of the VAD, MRI's are not an option (because of the metal machine).  But upon a physical exam, nuero is confident with this diagnosis.
I then spent the rest of the day quizzing our poor nurse with a million stupid, but panic-driven questions like... Will her leg get back to normal?  Are we at higher risk for stroke now?  Do you think she's talking less?  Could this have caused the renal shut down?  Did other VAD kids ever have strokes?  Who helps us rehabilitate?  Do you think the stroke is causing her to stare at the ceiling all day or was it the anti-anxiety med from pre-CT?  And on and on ... (Sorry Liz)
Worry. Now it's just something more to worry about.
We have to watch her just to make sure we don't see any signs of her getting worse.  This would indicate the clot is blocking in another area as well.
It just stinks this is one more struggle Ry has to endure.  I know is a fighter, but I feel she never gets a break.  It's disheartening, but I know I have to be strong for Ry.
Due to this new development, the team has decided to switch Ry's pump tomorrow.  Yes you heard me right.  They will replace the 30ml pump with a new one (one without fibrins and thromboses).  This will reduce the risk of any of the existing ones to break loose.  She will be taken to the OR for this.  She'll be intubated, sedated, etc.  The actual process of switch the piece of equipment should take less than one minute.  During that time her own failing heart with pump.  No incisions will be made and there will be no pain.  The pump with be primed with saline so that she does not have to receive any blood products.*
We are hopeful things will go smoothly and Ry can begin working to overcome this latest challenge soon.  Please say an extra prayer for her tonight.  I feel like we all could use a little healing and comfort.

I will soon have an entire entry about blood and blood products... I am learning a lot and hoping for good things.

Today a dear heart buddy of ours got the call they had been waiting nearly two years for. Leah Grace is headed to Dallas to receive her special angel heart. Please keep them in your prayers. We hope everything goes well and Leah will be better than ever real soon.

Wow, Ry really gave us a scare on Sunday.  It's amazing how quickly she could go from very stable and doing quite well for two weeks, to a completely opposite state in less than 24 hours.  This is the scenario that we've been prepared for.  And it may take a couple of weeks to get her back to a happy place.
We do not know what caused her kidneys to literally just stop.  But that's what happened.  The team had just discussed with us that they felt it was time to back off of her diuretics because she had started to get a touch dry.  But labs were still completely normal.  24 hours later, her lab numbers all doubled and her kidneys had shut down.  On top of this, we were in the process of transitioning her pain medication from oxicodone to methadone.  There was a little overlap to make the transition a smooth one.  However this is not an ideal time for your kidneys to stop working.  The drugs just stayed in her body and weren't being metabolized or processed.  So for 24 hours Ry was in practically a coma-like sleep.  We moved down to the ICU, met with the nephrologist immediately and he all but insisted we took Ry to the OR immediately.  This urgency was based on her potassium levels being dangerously high.  At her level, a normal person would go into cardiac arrest.  Our theory was that the VAD would keep that from happening so we hoped to buy just enough time and pray her kidneys would wake up.  They did.  Sunday night at around 7:00 we had our first wet diaper.  And we were back in business.
So now we are trying to get back to her proper balance between too puffy and too dry.  We're still working on it and as I said it may take another week or two.  We hope that if she is still stable (maybe not perfect, but stable) for the next few days, that we could return to the 8th floor.  We'll know more later this week.
Today was a rough day.  She slept a lot and was not herself when she was awake.  She is already sleeping and I have a terrible feeling that tonight might be a miserable night.  I sure hope I'm wrong and she can sleep.
We appreciate you continued prayers.  Its so hard to see her take such a step back.  We hope she's feeling better soon.

So all things considered it's a great day! Last night, just as quickly as Ry's kidney's shut down ... They started working. So we're still in ICU and will be for another day or so at the minimum. It willntake a while to get Rylynn back to her happy place, but so far we're on the right track.
I will try to post more details later. Thanks for all the pee pee prayers. They were answered and we are so grateful. Happy Labor Day!

It's scary how fast we ended up back here in the ICU. Ry had a great week with only some sleep issues, pain issues (because we were changing her medication) and a daily vomitting episode. I don't have time to elaborate on each right now, but something (still unknown) has really upset Ry's kidneys. They have all but quit working in the past 24 hours. We have another 12 hours to see some changes or we'll be headed to the OR tomorrow morning. We have plans to place a pedi cath or CVHP. Each come with some risks and consequences.
I know this sounds silly but right now we are praying for urine. Among other things, we really need Ry to make some substantial wet diapers.
Everything is set for us to go to the OR first thing in the morning, but we're praying for a good night. We'd appreciate your prayers as well.
I'll update more as soon as I can.