Sparkle, sparkle little heart

Yesterday was another glimmer... As ECHO showed further improvement in her heart function! Her overall energy and morale was also wonderful! She had some bedside OT and PT to help with her weak legs and arm. We managed to be so busy she didn't watch ANY TV so I was relieved! Her bloodwork is also showing that the r-ATG is doing its job and diminshing her t-cell count. We have 2 doses left of r-ATG and will be done by Monday morning with it.

The game plan is to finish the r-ATG and get her off other IV meds, switching most to oral. Since she is moving towards being stable enough to go home mid to late next week, we will be checking blood and ECHO every 2 weeks after discharge to keep her out of here. She also will have another biopsy in 1 month to recheck pressures and rejection. The r-ATG treatment will take 3-6 months to fully remove from her system, so we will watch her blood counts to see when she is 'safe' again, but until then she is back to wearing a mask and keeping home more than we had been. This affects school in August (along with other factors I learned yesterday), something far too complicated and better suited for another blog this week when I have time to go into detail.

Gabriella is going home on more meds than she did post transplant! We are going back to all of the original meds she was sent home on last year, plus supplements of nutrients she is lacking, plus meds for her declined function. Her heart needs a significant recovery time, so we will watch for signs of improvement in the relaxing phase of her heart- the function that was badly affected. One day we will attempt to lower the function medications and see how her heart reacts. We are faithful for full restoration though, and will allow God His timing in doing that.

We haven't wanted for anything in here. Nurses have been wonderful and spoil my girl rotten, the gifts & activities have poured in like candy to keep us busy, I have snacks galore, but more importantly we have felt the love in every visit or message. We haven't really felt lonely up here because there is always someone calling, messaging or visiting to make us feel connected to outside. We do miss our hard working daddy, and little brother PJ, but we are doing what we need to in the short term to have long term time together.

God bless every one of you. I hope your Fathers Day weekend is filled with as much hope and blessings as ours!!!!

IMPROVEMENT

ECHO HAS IMPROVED! Treatments are working and function shows her heart is working slightly better! We couldn't be more relieved for this direction!!!!

Please continue to be fervent in prayer! The cries to heaven are working and we know God will guide the doctors and provide complete healing... Our faith has never wavered!

Watch & wait

We met today with key people of our cardiology team & CVICU team to talk about what's to come. Gabriellas function has yet to improve and she started presenting with PVC's today- irregular heartbeat- another sign of her aching heart. She's on so many IV drips to control her heart function as best as possible. Turns out her biopsy results were not clear cut conclusive, but she is certainly in some level of cellular rejection after further testing. The portions of her heart affected by this rejection are not typical or on track with rejection, but in a good way because some muscles have been spared this far. Her kidneys are producing beautiful urine so we do not have to stress over that right now.
The initial option today was to transport Gabriella back to Loma Linda. Reasoning behind that was more big picture. IF she goes into a more critical status where she needs ECMO, Loma Linda has the resources to care for her from a transplant standpoint. They can relist her while they cannot yet do that here. After we all conferenced with Loma Linda, they encouraged us to keep on with the full Thymo treatment and watch what her blood says. They said they'd be happy to take Gabriella but they are confident in the treatment. So we are staying here for the time being while Loma Linda runs some in depth labs on her. I'm confident in the plan, but not comfortable. I won't be until they see improvement in her. But I won't be comfortable anywhere until she improves. And that's what I continue to ask for in prayer, is improved function and restored structure.

Gabriellas spirits are completely turned around today. With the exception of being angry that she can't walk around, she's overall in good spirits! We have had loving friends, comforting family and faithful prayer warriors come today and it is just what we needed to keep us smiling.

Like Paul said to me earlier, we need more than medicine... we need God.

I'm going to have an 'iced tea party' with my smiling girl, enjoy right now and pray for many many many more years of tea parties. <3

Just a bit longer

A quick update before I attempt some sleep. Biopsy results are still pending. Cellular results came back a 1a rejection, very minor rejection with minimal impact... and the results could have been altered by the IVIG treatment or by something else going on in her body. And that surely did not cause her rapid heart decline so it is no concern right now.

We are pending biopsy stains on humoral rejection. I was going to post details on that but will wait because the stats aren't anything I want to keep looking at until we find out a diagnosis. If it is not humoral, we will further investigate.

Gabriella is critical so I ask that you do not stop praying for clarity of diagnosis and Gods continued protection over our princess. We have been enveloped by your prayers and blessed by the kind words. I am trying as hard as possible to reply to all, but I am reading them all for sure.

God bless, from a mommas broken heart. Good night.

Impatient Momma

Can you believe we are still waiting on biopsy results from yesterday??

For the medically savvy: Last nights r-ATG treatment went well with little reaction. Today they decided to start another medication called Epinephrine for her heart function, since cardiology was surprised at the more critical status her cath showed. Along with the Milrinone, steroid, fluids & lasix. We are trying to combat her heart failure while also attacking her rejection.

They just finished placing a PICC line and will remove her IV leaving just the PICC in her arm and plasmapharesis cath in her neck. I had a minor freak out session because it seems we are placing a lot of ports with no sure direction, but after talking to the docs I'm better understanding of it. Goes with my theory that if you don't feel right make them convince you. It was the first PICC I stayed in for but it went well.

She's peeing more and we are watching her renal system for kidney function to make sure that doesn't give out on us.

Once we get these biopsy results back we will decide whether we move forward with plasmapharesis or r-ATG (thymo). Whatever it is, I wanna know now. Time is ticking and doctors are anxious.

Gabriella is very tired and sad. She keeps asking me why she has to do scary stuff. PJ went to Bible Camp today and she was sad she couldn't go. This is so hard on her 6 year old little spirit, but her willpower & stubbornness is still in tack! Even after 3 doses of light sedative, she was still telling the PICC team what to do.

Who else gets to hang with a warrior today? I know I do. I love that girl.
Kristi Vega
www.GabriellasHeart.com <3
Sent from my BlackBerry

Treatment

So we are changing our course of treatment. After Loma Linda heard about the results of the cath, which showed extremely high pressures and a stiffened heart, they decided an aggressive treatment was necessary. They will be starting Thymoglobulin, what was given immediately after transplant to completely wipe her system. Whatever is going on with her heart needs to be tackled quickly because of the speed of her decline. Thymo has a lot of risks but in light of what's going on, they are risks that need to be taken. It will run slow and we will take it day by day, watching for progress and side effects. Tomorrow we will also get the results of e biopsy and decide if we are on the right path or if something more effective comes to lig with the results.

(edited to add: the r-ATG, which is the kind of Thymo Gabriella is getting is made from rabbits. r-ATG is made by injecting rabbits with white blood cells. The rabbit's immune system makes antibodies to destroy the foreign white cells. The antibodies are collected and purified to make r-ATG. Fun fact for the evening.)

Gabriella is struggling with the sedatives, and we had to further sedate her to keep her calm. It is very hard when she wakes because she cries that she is done and wants to go home. The intensivist has stopped rounds for tonight on the floor to get Gabriella taken care of, her transplant coordinators from here and Loma Linda have been calling me faithfully and everyone is working hard on tackling this rejection.

I just ask that you all pray for clear communication between all doctors involved, strength in Gabriellas body to keep pushing and full restoration of her heart function.

Rejection Results

The whole weekend of testing and waiting gave us results today, just not the ones we wanted. Her echo showed worsened function and they decided she is almost definitely in antibody mediated rejection. What we have always watched for was cellular rejection, where the heart tissue itself was in rejection, and is how we treated it this weekend but in fact was not. This antibody mediated rejection is caused by antibodies in her blood that are damaging her heart.

They are going to do a biopsy/cath here at 430 PST to check her coronary arteries and take a few tissue samples. They will also place a dialysis style port in her neck to start plasmapharesis tomorrow, pending biopsy results. Plasmapheresis is like a dialysis, where they pull her blood out, remove the plasma containing the bad antibodies and insert the cleaned blood with a donor plasma. This will be up to 10days of treatment, but I am waiting to hear the protocol from Loma Linda for Gabriella. It will also wipe out her immune system like the days after transplant so we must go back to original precautions w a mask & germs.

They also will place her on a medication to relax her aorta and redirect the increased regurgitated in her mitral valve that this rejection has caused. Stopping this rejection could or could not reverse damage, but for now we will just treat what it has done.

Loma Linda is guiding our wonderful cardiologists here in Arizona and overall I feel comfortable. The teamwork gives us comfort and we will not loose faith. This should be what we need to get her out of rejection, and we will pray that into action. Here forward we will increase her daily immunosupression meds to prevent this again. But for now we are praying her cath lab procedures go smoothly, the treatments work and her heart is a sparkly as ever when this is said and done.
Kristi Vega
www.GabriellasHeart.com <3
Sent from my BlackBerry

Rejection

The time has come. While the first year is most critical, a transplant patient is never free of the risk of rejection.

Gabriella has been having upset belly aches lately and today's was debilitating. A belly ache in a transplant kid can mean the normal too much candy or it can mean rejection. Imagine how fun that is for us as parents to figure out! The difference today was Gabriella's heart rate, elevated at resting. Her transplant team instructed us to go to the ER. I was hesitant for a few reasons, but the high heart rate sold me so we came to Phoenix Childrens Hospital.

ECHO showed a 5mm enlargement of her left ventricle in comparison to her ECHO 2 weeks ago. It also showed significant leaking in her mitral valve, where she typically just has a 'trace'. After our cardio team here in Arizona consulted with the transplant team in California, they agreed Gabriella was beginning rejecting her sparkly heart. Loma Linda advised an aggressive steroid regimine and 48hours of IVIG to help her body stop the rejection, then increase her target range of medications to prevent her from going into rejection again.

Gabriella feels great, thank goodness. Like the CMV she got August last year, we caught it early before any effects took place on her or her angel heart. She even told me in the car that her heart felt great. Gotta love my little fighter!!!

I'm convinced this was caused due to a combination of things... Changing both of her transplant meds, lowering her target range and her body not metabolizing them properly. The combination, not anyone's fault, was just enough for her body to go on strike against her sparkly heart. But the most important thing is that she's happy, her heart is not damaged or stressing too much and we can kick this before it's too late! I'm thankful to God for that!

Thank you all for the prayers and being so faithful in not forgetting Gabriella. Please pray that this plan of action is enough to stop rejection and that her heart remain strong through this!!!
Kristi Vega
www.GabriellasHeart.com <3
Sent from my BlackBerry

Powerful beyond measure

If there is nothing else you look at on the internet today besides one blog entry, do not let it be this one. Venture over to my truly amazing friend Ally's blog, Trashy Decor, and read todays message of inspiration.

Powerful Beyond Measure

Be inspired on this spring weekend of renewal and hope.

Survival

One year ago today, Paul called out of work because he felt "off", I was headed to the Phoenix Ronald McDonald House with paper towels and toilet paper and it was another manic Monday of waiting.

Until 1147am on May 17, 2010, the same time this is entry is posting, I entered a blog entry that changed our world. Gabriella got her heart call, and we were on our way to California for a life saving 4.5 month stay.

Today, Gabriella is stronger, bigger, smarter, older and happier because of her sparkly new heart. That heart sparkles not only because of the life and health in it and the spirit of Abbie that resides inside, but because of the external love and support all of our family, friends and even strangers gave to us.

And do you know what this also means??? I can say we successfully got through, with minimal effort, the "critical first year". In transplant living, this is monumental. Statistics show nerve wracking numbers, but statistics do not apply to us. God does not operate by statistics, and we remain faithful to His plan. We give all control up to Him and praise Him for his miracles.

You live on, Princess

May 15, 2010, heaven gained an angel. Precious Abbie gained her wings too soon, but not without leaving an unforgettable footprint on our lives. Her heart continues to beat on in Gabriella, and we will never forget.

Proud to be their Mommy

I tucked her into bed tonight

(And adjusted her pillow and blankie)

It's been a long exhausting day

(And she sure has been cranky)

She threw every toy from her toy box

And she tossed all her lunch on the floor

She begged me to go out to play

(She just wouldn't let go of the door)

Most people cannot comprehend

The things she has been through

They tell me... "I just can't imagine..."

"How you do all the things that you do."

I sigh... just because they don't realize

How could they ever know?

Just what a precious gift it is

To watch my child grow.

I still remember clearly

Our days in ICU

Hoping, praying, wondering

What were you going through?

Stroking your hand...feeling helpless

Whispering words in your ear

"It's alright my baby"

"Mommy is right here".

Helpless...scared...bewildered

Wanting to just see you smile

Thinking..."I"m not strong enough"

To make it through this trial.

Knowing that... not all children

Survive these surgeries

Day by day...with patience

Constantly praying...for peace.

And so...that is the "secret"

To doing the things...I must do

There is no perfect...inner strength

I guess God brought us through.

And so...when I see... footprints

All over my freshly mopped floor

Or gooey dried banana's

Smudged on the living room door

I wipe it off...with just a smile

Just praying for more to appear

These are my reminders

I'm blessed to have her here.

I tucked her into bed tonight

And as I walked away

I looked up for a moment...and said

"Thank you...for "today".

~Stephanie Husted

Nearing one year

 A couple weeks ago we went back to Loma Linda for a clinic appointment with our transplant team since we are nearing 1 year post transplant. Gabriella's ECHO function was great and her growth is fantastic! They decided to change all of her immuno-suppressants to new ones. For all those transplant people out there, she was on Neoral Cyclosporine and Cellcept, and now on Prograf and Rapamune. Her clinic doctor said that he is finding this medication combination, introduced later post-transplant, yields better long term results in terms of her coronary artery health, mouth/gum issues and kidney function. They also lowered her target levels, which means they have brought back her immune system to the highest it will ever come back. I feel I can safely say without jinxing myself, that she successfully made it one whole year with a suppressed immune system and no major illnesses! Makes me feel like all of those times we either stayed back, were "overly" cautious or went out of our way to keep her away from germs was worth it! And even then, we still let her enjoy so many things.... finding a healthy balance. Of course, it's still not 100% clear now. She still has a suppressed immune system for the rest of her life, but we are out of the harshest part of it and I couldn't be happier!!

We took the opportunity while going there to enjoy the beach, naturally. My kids are such beach babies!!!

And we also got to spend Easter with our friends at Restoration Covenant in Redlands, CA!






And have lunch with our previous Loma Linda Ronald McDonald House neighbor and fellow heart recipient, Logan!

We are returning in June to Loma Linda for quite a few appointments and tests. Paul, PJ and I all had our genetic testing done and submitted so when Gabriella and I return to Loma Linda, we will meet with the geneticist and go over the results in detail with our geneticist. Gabriella will also have a clinic appointment with our transplant team, a kidney function test, and her sedated biopsy to test for rejection. It will be an overwhelming few days of appointments, information and testing results but we are faithful in the results.

Life continues to throw us curveballs of different kinds, but we continue to move forward. Remembering how blessed we are is never forgotten, no matter how clouded the earthly problems or human judgement tries to make it. 

All settled in... finally

Can you believe less than a year ago, this little girl was in heart failure, hardly communicating and uncertain of her future? Just less than 11 months later, this is my maturing big girl... proving to the world miracles do happen.




The last few weeks have been filled with boxes, buckets of paint and hammers. We got keys to our new place mid-March (a rental that a friend owns) and did a whole bunch of updating to the place! A few weeks of painting, fixing, installing, moving, unpacking.... and now I sit here.... pooped. LOL! We love our new place though. The kids still share a room because they just do better together, but now we have a 3rd bedroom we use as a playroom/ sewing room/ school room. In a couple years when it is "so not cool" to share a room with your brother, PJ will move to the 3rd bedroom... haha! The rent is the same as what we were paying before and the landlord is a million times better, so it is a deal you can't beat. There is a great play area for the kids in our private little patio/courtyard that is secure and spacious, and they are loving it!

Hopefully soon we will have some before/after pictures to post. If I can catch it on a day when it is cleaned up, of course!

Gabriella is excelling in math, my smart little cookie. We have her not only doing home school and homebound through the school district, but also attending the Kumon Learning Center for math and reading. Seriously, get your kids into a Kumon Center. The rate that she is progressing is ridiculous. She struggles in reading, but much of that has to do with the brain to speech issues she still struggles with. BUT Kumon is helping her inch along faster than she would without any additional support! I am still struggling with what to do for 1st grade. Do I keep homeschooling her, which comes with a heavy weight of both pros and cons, or do I send her to school, which comes with its own unique qualities? I would be lying if I said I wasn't losing sleep over it, because I literally am. I want the best possible scenario for her in both education AND medical, that making this kind of a decision is huge and difficult.

Plus, you cannot do school in this kind of style when you go to a public setting....




Paul and I served dinner at the Ronald McDonald House in Phoenix on March 20, in memory of Abbie and what would have been her 4th birthday weekend. It was a blessing to serve the families there, but also pretty amazing for Paul and I to do it ourselves. We had some amazing friends make dessert, and my extremely talented cook of a mother-in-law made sides. I make a few chicken green chile casseroles which turned out super great! We had so much food left over since the house was not full, we were able to take some to the Phoenix Rescue Mission, in hopes to fill a few more stomachs.






PJ has started T-ball and is the cutest little man out there! He has so much fun playing, and oddly enough is SO extremely well behaved and listens to the coach so well. You would never guess he is my wild monkey here at home! Somehow, I thought it would be a good idea to sign up for team mom, so I am in charge of all of the mom-ish duties... which is kinda fun in its own way. :)




We have also kept busy with activities like the Mended Little Hearts Picnic last weekend, as well as the HopeKids event to see the Arizona Rattlers play (my FAVORITE live sport).








We are looking forward to a trip in a few weeks to California. Gabriella has clinic over there, so we are going to go a few days in advance, hit Sea World with our gift tickets given to us by Ronald McDonald House, and hang out with friends for a weekend. This clinic will be our last under our transplant coverage, so we need to get in one more time before the approval expires and it will be harder to get in and talk about their plan for her in the future, frequency of tests, things to watch for with her CMV sensitivity and young age, etc. I am looking forward to filling up a notebook with info from these amazing doctors, and seeing many of our angels in lab coats while we visit Loma Linda.

I hope this blog finds all my readers well! I fear no one reads anymore now that our storm has settled... but if you still do I thank you. Keep the cycle of miracles going. Gabriella's story is far from over and there is still work to be done. We have been blessed in an unrepayable way, so our attempts to spread the word of God and organ donation, giving back and being there for others will never fade.

Recent Gabriella Updates

Back in August 2010, Gabriella was taken off a routine medication given to most transplant kids called Valcyte. All kids are taken off this med at 90 days post transplant, Gabriella no different. It is used to prevent an outbreak of CMV, cytomegalovirus, in a transplant case where the recipient and/or the donor are positive for it. CMV is something minor to the average person but highly dangerous for a transplant case. Gabriella started to show elevated levels for CMV quickly after taking her off the medication, landing us in the hospital in August.

Here are those old posts:

August 20, 2010: Our unplanned vacation to the hospital

August 25, 2010: Chillin & Infusin'

August 31, 2010: Follow up on the CMV

After that very intensive treatment regimine, they put Gabriella back on the Valcyte for 6 months to give her body more time. Well, 6 months is up and we decided last week to stop the Valcyte. EEEK! We are hoping that it was just premature for Gabriella's system to come off of it in August and we will be successful this time! The highest risk for her to show active CMV is 3 months, giving us until June to closely monitor her. Since we have nothing major happening until the summer, we thought this was a good time to see what happens. We will be back on more frequent blood draws to watch for those levels and I will again be watching her like a hawk for those freckled spots she showed the first time. Our post-transplant journey and Gabriella's recovery has been so amazing, I couldn't have asked for a more perfect scenario. I am praying that this does not turn into a hurdle!

They also had to increase her cyclosporine levels once again, which is her most important immunosuppressant. She is growing and we are thankful for that!!!

Gabriella is doing wonderful between her homeschooling, homebound teachers, speech therapy and now attending the Kumon center. We had been having such a difficult time with her numbers in result of her aphasia. She was having the hardest time remembering anything past 10, but thanks to the Kumon method she is up to 30! The repetition is just what she needed for retaining the numbers and while she is still struggling a little, she is making progress! We are really eager to get her started back in dance... hoping this summer session will be possible financially for us!

I hope the coming of spring is bringing renewing power into your life!!!!