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Saturday, July 31, 2010

No rejection!

We got the results from yesterday's 10 hour day at the hospital.....

0 rejection!!

We r gna start watching what else is causing the belly aches, weight loss & new heart sounds. But rejection is ruled out which was the worst case scenario!

Thank you for all your prayers! We are so lucky to have the support! And we are blessed with a team of doctors who are cautious & watch out for Gabriella with such love.

Thursday, July 29, 2010

Early Rejection?

Acute rejection is when the immune system of the recipient attempts to attack the donor organ as a defense mechanism. It is the body's natural way to prevent a foreign object in the body, by building up an army of antibodies to attack the intruder. A transplant recipient is placed on immunosupressant medications to trick the immune system into not fighting off foreign objects. This is why transplanted patients avoid germs, because not only does the immune system not fight off the organ, it cannot fight off anything else including infection, viruses or bacteria. Rejection is in its highest risk in the first 1 to 3 months post transplant, continuing on thru the first year. But rejection can happen anytime in following years, and a patient is never in the clear for the risk of rejection. Rejection can be caused by not taking your medications properly, your medication levels being too low to adequately trick the immune system or by the body building a stronger army of antibodies or even a new cellular mediated immune system (CMI) to attack the organ. Rejection is found through a series of clinical symptoms, and confirmed by taking tissue samples of the organ and testing them. Rejection can be treated, and the sooner the better. In early stages, it can be treated by something as simple as a steroid. In slightly advanced cases, by short term IV therapy or even a 3 step IV treatment. The worse the rejection, the harder to treat. And every episode of rejection slightly contributes to stressing the heart out over long term.

So why am I being Wiki-Kristi-A? Not because I feel super guilty for not updating my blog enough, but because we may be facing our first episode of rejection. Gabriella is 10½ weeks post-transplant right now. Her first biopsy just one week post-transplant was a big ZERO, and again at 1 month. Gabriella has been complaining of a sore belly for a few days, along with having a decreased appetite and what we found today to be weight loss. I mentioned this at clinic, but it wasn't until the clinic doctor spent (spent way too long) listening to her heart that it became relevant. In a person with their native heart, they feel heart pain in their shoulder or arm or neck, but in a transplanted patient, their nerves have been severed and have been found to feel that pain in their abdomen. Determining when it is just too many cookies in a 5 year old, or issues with the heart, is difficult, but today the doctor paired it with a gallup sound in her heart- another clinical sign of rejection. There are too many clinical symptoms put together, leading us to consider rejection as the cause.

SO the amazing transplant team that we have (how will we EVER leave them????) got us in for a stat biopsy TOMORROW. That is the true answer to whether or not she is in rejection, and to what degree, giving us a better idea how to treat it. Biopsies are risky in their own right, which is why Loma Linda does not do routine biopsies as frequently as other hospitals. There is risk for injuring heart tissue or valves, risk with the sedation, risk for bleeding and *ahem*stroke*ahem* (we all know how much I love the risk of stroke......). But this is non routine and vital, so we will have this biopsy tomorrow and PRAY for the results.

- I have never had to explain how they rate rejection because ZERO is the one time you can be happy about the goose egg. (Because it is NEVER a good thing when your bank account is a ZERO, or your gas tank, or your bottle of cooking oil when you are in the middle of making cookies). We haven't had to worry about a 1A or 2R.... but rejection is ranked on a scale from 0 to 4, having 2 severities to each grade. -

Gabriella's cyclosporine (immunosuppressant) levels were also low, but they do not feel that is a contributing factor to the possible rejection. Her white blood cells are low again, and her CellCept (the other immunosuppressant) has been stopped for a week to get them back up. This seems to be a trend for this medication, and it is a hard medication to maintain a dose on.... you pretty much have to go off of it for a week and let the cells build back up before you start it again at a lower dose and wait a week for them to get into a therapeutic range.

So, thats the deal. I am treating this rejection as an "innocent until proven guilty" case. Once we have the biopsy results, I will be able to share the verdict and sentencing with all of you. Regardless, it's presence is unwelcome and came into the wrong momma's baby. I won't stand for it, and will protect this precious sparkly heart if its the last thing I do.

Saturday, July 24, 2010

Pray for Katy

I know every heart story has its uniqueness. I doubt we will ever find another child who was diagnosed with a CHD at 4, has a stroke at 4.5 and looses her speech, has to fight to get listed due to stroke damage and gets her heart in another state a year after finding out she needs a transplant. Just like I will never know the struggle with antibody issues or the 3 step repair for ToF or HLHS.

Regardless of our difference in details, all of us heart moms share something very unique. It is a camaraderie, a global understanding, and a respect for each other because you have an idea of what they went through based on what you experienced. What we experience in those late nights or what we watch our kids go through firsthand is like admission into an elite group of mothers.

I had a mom call me soon after Gabriella was discharged. Though I couldn't relate to what she asked me about a G-tube based on my own experience, I was able to share with her how I probably would have handled such a decision given we had similar issues and talks with our doctor due to Gabriella's weight issues. Being an advocate for your child is the most important thing you can do as a heart mom, or a mom to any sick or special need kid, and I encouraged her to do what SHE felt was best for her baby... not what the doctors were pressuring her was the right choice. During that phone call though, Amiee & I linked up in the elite heart mom club, and I am so grateful we did. Her little princess has Restrictive Cardiomyopathy (G's original diagnosis), which was mis-diagnosed as HLHS (the RCM can make the heart muscle so tight and stiff I can totally see how it could be mistaken!). She is much like Gabriella was- visually not a child who has a life threatening heart defect besides being petite! She is a gorgeous little princess with a broken heart & a beautiful smile!

When I saw the picture of Katy today with her little NG tube kissing Mickey Mouse, I melted. I read Amiees blog and feel her range of emotions running on the same track mine did. They are a lovely family.... and Katy's brother is a little stud.

You all prayed for us and walked the journey of transplant with us. Our journey is not over, but as we progress on ours, others are just starting! Please consider following Katy as she will be listed in the near future as a 1B for her new healthy heart!

Thursday, July 15, 2010

Progressing thru recovery

We had clinic today, like every other Monday and Thursday the last 2 months. Today, though, was the end to another step of recovery. We are stepping down again to once a week clinics... going a full 7 days between appointments! This is hugs, since we never went more than 4 days without being at the hospital. As long as Gabriella continues to recover as well as she has been, we will only be at the hospital on Thursdays.

The next step is to go bi-weekly, then monthly. Dr Chinnock mentioned the "h" word today, reluctantly. He said Gabriella has recovered beautifully and he could see her going home at the 4 month mark. Of course, this is barring any unforseen complications we may run into, and their discretion at that time... which is why he was reluctant to mention it. Looks like I'm safe to plan a little 3rd birthday bash for PJ on September 8 in California though! It is hard to believe that if they do send us home then, which would be mid-September, we are already halfway through our stay here! I can't say I'm not a little sad. Not only have the team at Loma Linda become an extension of our own family, but we so adore California- though that isn't a new observation. But it will be nice to see our family and be back in our little apartment I love.

Gabriella continues to gain weight. She is not yet where she needs to be, but is on a great curve of gain to get to a healthy weight. She has always been tall and lean, which makes it hard to know whether she is naturally petite in weight or if she always had a super sick heart. Regardless, we are not doing anything except the normal meals and snacks, so I know her body will stop gaining when it is ready.

Currently, Gabriella gets medications at 9am, 5pm, 9pm and 1am. Her 9-5-1 meds are her immunosupressants, and last week the med doc mentioned transitioning those to 9a and 9p med times at higher doses to relieve that 1am dose. I went into todays appointment kinda excited for this, since 1am isn't the funnest time to wake up and give meds to a cranky diva who wants her sleep. But when the cardiologist looked it over, he decided to wait on this transition. The first 3 months are a critical period and she is on medications she won't be on after the 3 month mark. She also is coming from some serious meds while in the hospital that bottomed out her immune system. Messing with her doses right now while her levels are perfect is riskier than waiting until she is out of the danger zone and off her 3month meds. SO we will continue on her 1am med time until she is 4 months post-transplant. I didn't hesitate to agree with him. Really, either way is fine by me. She is here and alive and her meds are in great balance, what more could I ask for?

We spent some time at new friend's house this past Tuesday, and it was so great to feel normal and just socialize with some amazing, loving people. They have 2 little girls and Gabriella & PJ LOVED playing with them. I am finding Gabriella has so much more confidence in herself now, after seeing her interact with these girls and my friend Shannon's girls as well. I am SO proud of all she has overcome in her speech and energy barriers. My bestie is coming down from Sacramento on Saturday to spend some time, bringing along 3 little besties for Gabriella and PJ to be with. We are super excited to celebrate the 2 month heart birthday with them in Saturday the 17th, and I am sure Gabriella and PJ love all the "new" playmates after being so isolated!

I mentioned last Thursday that Gabriella's donor family accepted my letter on 6/22. Last night, I received an email that completed the connection between Gabriella and her donor. I got an email from her donor's mother, who told me that she mailed a letter through the agency but also wanted to reach out to us through email. I was blessed and honored to "meet" their beloved child in a new way thru her quick communication and cannot wait to receive her letter. Thank you all for walking the journey of grief with me for the family that lost their child and gave life to my Gabriella! As you all know, I honestly believe in the power of prayer, and I cannot thank you enough for praying for them with me. Many people have inquired about Gabriella's donor, and I can appreciate and understand the curiosity. I will, however, keep the information on this little hero confidential. It is not my decision nor right to share, unless the family asks me to. I do so greatly appreciate your understanding.

Thank you to everyone for the continued support for Gabriella, as well. As we get further and further away from the transplant that saved her life, we are still seeking prayers for this recovery to continue as smooth as it started, as well as her future well-being in regards to the side effects her meds can cause. We have had some amazing people come into our life through this journey even up into the recent days, and we always have room for more.

Sunday, July 11, 2010

July already?!

We had company come into town for the 4th of July weekend! My mom, her husband, my sister and brother in law all came down on Friday for a fun filled weekend!

Friday night the 2nd we enjoyed dinner here at our little Loma Linda pad. The kids were SO excited to have their family come. It had been a few weeks since their uncles, aunt and cousins were here, so having more familiar faces was exciting! Saturday we got up early and went to visit the kids great-grandma Evie and great-great-grandma Connie in Temecula. Gabriella and I had visited their home there in March, so we were very excited to show off the amazing vineyards and gardens on the property to everyone else! Saturday night, my mom and sister got me out of lock-down and we went to Victoria Gardens in Rancho Cucamango to have dinner and see ECLIPSE! FINALLY! I was way overdue to see it and loved every minute of it... :)


Sunday the 4th, I put my mom and sister to work. I have been super excited to make a house meal for the main Ronald McDonald House, and with them being here I had the help and they wanted to help me give back as well. We went over at about 1130a and began cooking! We made build-your-own taco salads and/or nachos and beans, and poke cake for dessert. Paul brought the kids over and ate on the patio so they could be a part of it as well without exposing Gabriella to people. As much as everyone thanked us, we thanked them back. It was an honor to cook for the house, and for all the other parents I all too much related to.

After the lunch, we came back to freshen up and grabbed some dinner. We headed to Redlands to watch fireworks on a side street, and it was SO much fun! 4th of July in Phoenix is just downright hot. In the last 12 July's I have been in AZ, I had yet to enjoy a fireworks event outside of a pool and truly enjoy myself because it is just so darned hot in the evenings. But here it was gorgeous and I definitely did not take it for granted! MAYBE 70 degrees and everyone was outside lighting fireworks, cooking out or just enjoying the weather. We sat on a residential curb (away from germie people of course) and lit some fireworks of our own and then enjoyed the show which was probably the best display I've seen outside Disneyland! It was a fun night with some major fun times...

Monday, the inevitable happened and they all returned home to Arizona, but not before a yummy breakfast. It was great having them all here for the weekend and the kids had a ton of fun. It was probably the most active they had been in one weekend since we came to California 7 weeks prior! After the family left, and considering some of the suggestions on things to do from our Doc, we jumped on an impulsive idea to go to the beach, and I'm so glad we did. With Gabriella, her medications make her prone to burning in the sun, but with an overcast sky, 100spf sunblock and our $5 beach umbrellas we got at Old Navy last year, Gabriella was able to enjoy the beach and build some sand castles! The best part was it was an entire day together and cost us no money... which you gotta love.

We went with Daddy to Anaheim on Wednesday the 7th since he works out of their office one day a week. We decided to brave it and go into Disneyland for a calm night of fireworks (a benefit of being Annual Passholders- MUST keep saving our pennies to renew this fall!). Gabriella asks multiple times every day to go to Disneyland now that he heart is better, and we have been avoiding it due to germs. We had a talk with the kids before we went, and they agreed to our terms. We got into the park at about 530p, grabbed a bench infront of the castle, Paul went to get us some dinner and we sat and ate and enjoyed the music and people for a few hours until the 930p fireworks. Being on the bench, people steered clear of us and parked on the ground in front of us. No one was behind us to worry about, and I felt a lot better than I would about being in the park! She kept her mask on the whole time except to eat, and I am SO proud of her responsibility in her mask and keeping her hands clean.... she's such a big girl! We enjoyed the fireworks (something that never gets old to us) and sat while the crowds cleared before we left and headed 'home' Inland. When she hits her 3month mark and is ok'd through the doctors, we will attempt to go and ride rides in our final weeks accessible to Disneyland before going home to Arizona! The love my kids have for Disneyland makes me SO proud.... lol.

Saturday we decided to go back to the beach. I am loving how much there is to do in California without paying. We packed lunch and snacks and spent an AMAZING afternoon on the beach playing in the sand and waves. We went to a beach we have never been to south of Laguna Beach and the sand was softer than any other sand I've seen on the west coast. The kids had so much fun playing in holes and looking for treasures.

I can't even begin to describe how amazing it is to see Gabriella with SO much life in her. She feels fantastic and it is evident in her activity. She is more confident in herself also, with her words coming back and her understanding of the responsibility she has with her heart. I find myself, even though we are obsessed with germs and cleanliness, able to truly relax and enjoy what we are doing and not having that fear in the back of my head of her heart suddenly stopping that I lived with for a year.

Here are some pics of the first 10 days of July!

July 2010

Thursday, July 8, 2010

Almost 8 weeks!

Gabriella's new sparkly heart will have been beating strong in her chest for 8 weeks this coming Monday. It is seriously insane how this time has flown by...

Gabriella is still on twice a week clinics thru next week because of her high heart rate she had and her low WBC's this past week, but the following week she should be on once a clinic week visits if we can get all these little blurps out of the way! Her ECHO's continue to show that her precious angel heart is a strong one, working in perfect sync with her body. They have been playing with her med levels because her white blood cells are dipping too low, and will start that balance all over again next week when we take her immuno suppressants from doses every 8 hours to every 12... eliminating her 1am and 5pm med times! This puts us at 9a and 9p med times only. (YAY! lol) Gabriella is gaining weight at the perfect speed. Today she weighed in at 44lbs, the highest she's ever been! We struggled for SO long to get some weight on her, and now that her new heart is working so strong, her body is able to THRIVE again!!! Her keloids on her chest are growing, and the silicone strips aren't working. I am trying to figure out what to do for this, because I want to treat it as well as possible right now when the tissue is soft and pliable before the tissue becomes more permanent.

Some other things I wanted to update on.... Gabriella's speech is doing amazing things. Like, Jesus healing the lepers and blind kind of amazing. She can initiate her own new words, perfect ones she hears once and put together combinations of sounds she would struggle for WEEKS on end to get just one! Her sentences are becoming more liquid, just flowing together with more ease every day. Since her stroke to her transplant, in that 8 month period, she went from not having mouth control to having the speech of about a 1 year old. In the 2 months since transplant, she is at about a 2½ to 3 year old level! When I try and think of how her speech will be by the 1 year marker of her stroke, I can't wrap my head around it. I absolutely KNOW it is because of that richly oxygenated blood going to her brain from her amazing little heart.

I also thought I would mention our outing habits, just for giggles. We are venturing out more and more to places that were so routine to us in the past but are now well-planned events. I carry a backpack that, if you found it on the street, you'd look in and wonder what in the world this person's phobia was or if they were a housekeeper. I carry a lovely assortment of gentle hand wipes, disinfectant hand wipes in both package and individual wrapper form, Lysol surface wipes, travel size Lysol spray, full size bottle of Germ-X foam hand sanitizer (best ever), and about 3 bottles of Bath & Body works scented plus a baggie of face masks. She stays to her stroller with her mask on and we wipe down any surface we might need to touch before she touches it. We clean all of our hands before and after we do anything and stay clear of groups of people. It's working for us, and we get the kids out of the house on occasion (besides our outings to the hospital... lol). It's also good practice for us and setting a new normal for the kids of what they need to be cautious of. Since Gabriella will always need to be aware, this will help us to transition into normal habits at home, since we will add in new elements being around family and going back to therapies and all of our other docs.

Like I first said in this entry, Gabriella's new sparkly heart will have been beating strong in her chest for 8 weeks this coming Monday, which means another sweet little one has been gone for almost 8 weeks. Please take a moment to pray for Gabriella's donor family. I got a notice from the procurement agency that they accepted my letter on June 22, and I hope that they find comfort in what they wanted from their decision to donate is REAL... that something good would come of such loss. From experience, I know how heavy life can feel when time has passed, people stop calling and you are silently expected to just move forward. You feel like the prayers might be coming less often and the quiet becomes louder. Help me this weekend to cover them in prayers. I want them to feel that their gift is still just as miraculous and cherished as the day it was given, and I need my prayer warriors out there to help me with that!!!