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.
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!
http://www.murphy216.blogspot.com
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.
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... :)
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| Temecula |
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!
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| July 2010 |
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!!!
Gabriella's video of her tricking mommy in the hospital post-transplant was a hit. I received some of the BEST stories as a result of the super amazing LIFE her little face possessed.
Well, I shot some pretty adorable videos of her last week, on our adventure down to Downtown Disney one evening. Her robot video is a hoot, but there nothing like her riverdance/ booty shakin' moves in the 2nd one!
ENJOY!!!!
CHECK OUT THAT ENERGY! LOL!
November 2008 I was here: Twilight midnight premiere
November 2009 I was here: New Moon midnight premiere
June 2010, Eclipse midnight premiere, and I am sitting in my pajamas in a home thats not mine and in a town where I know no Twilighters, foregoing one of my guilty pleasures. (and about 10lbs heavier than those pictures too.... blah)
Give me a moment while I pout... TEAM EMMETT!
June has been exciting... a new heart gives new energy! But our caution with her immune system being almost nonexistent restricts how much we can use all her new energy. The good news is we will slowly start to build a little of it back at 3 months post-transplant, but it will never be a full defense system again so right now we are using her sensitive state to practice good habits for the future!
I always post about our multiple doctors visits per week, but here is some insight on our OTHER days!
We spend most evenings outside. This SoCal weather right now is amazing! Daytimes are around 90 and evenings in the 60's as summer begins to show. .....(Yeah, yeah, please spare me the whole lesson about how it gets hot and humid here. I know, but I'm an Illinois girl and I KNOW my humidity! In Arizona right now it is about 110-112. Yeah, dry heat, but I have lived in AZ for 11 years and it really doesn't make it much easier than the humid heat we had in the MidWest. Something about your milky white skin sizzling when you walk to the car beats out thick and wet anyday)..... The relief in the evenings is something we NEVER get in Arizona from pretty much May thru October. SO we are taking advantage of that. We walk around the neighborhood, run around the campus of LLU, or just let the kids run amok in the driveway!
On June 10, we ventured out to Redlands Market Night. They shut down a 1-2mi long stretch of State Street right down old town Redlands and have vendors set up selling from flowers and lotions to fresh and organic fruits and veggies every Thursday night. I am a Farmers Market prude these days and won't buy my produce from the grocery store, so I am in heaven in Redlands! This was one of Gabriella's first outings, and we survived. I use survived loosely because we were honestly all over the place avoiding people... lol.
(Gabriella DID wear a mask but I let her remove it to eat and we just pulled off to the side away from people.... lol)
A week later we had family come and visit! Pauls sister and her brood came for an afternoon on their "tour de California" summer trip. When they left, his brother and Aunt & Uncle came for an overnighter. It was nice to see family, made that lonely feeling fade for a little bit. And the best part was seeing my 2 neices, 2 nephews and great-nephew!!!!!!!!!!! OH MAN I miss all my neices and nephews back home....
Gabriella and PJ with my Godson Marko
On Fathers Day we went for a drive up to Oak Glen, which turns out is 5k feet elevation, 10-15 degrees cooler and APPLE COUNTRY! We had a great time checking out little parks and shops and enjoying the scenery. We also indulged in a little dessert before heading home for dinner.
We got braver as the month went on, and with encouragement to explore, we utilized our Family Pass to the Aquarium of the Pacific in Long Beach. Not only was it a big deal for us to drive that far, but it was a "public" area. I do have to say, we did an excellent job keeping Gabriella clean and contained and keeping sanitizer companies in business.
We went with Paul as he worked out of the Anaheim branch of his company for a day and we people watched that evening before heading home. We sat at one of our favorite places, Downtown Disney, as much as it was torturous for us to not go into Disneyland. We found a little bench off to the side, listened to some music and the kids got to enjoy some "normal" surroundings. (yeah, our Disney addiction is THAT bad that Disneyland is "normal"). On our people spotting adventures, we saw Nicholas Cage!
I think about everything we did over the course of a month and it seems like nothing. We have always been "busy bodies" and have something going on at all times, so these couple outings is like a typical week for us! The doctor kept encouraging me to get out and do things with her to keep her from severe boredom, so I did. And in reality, this was a TON given the caution we need to put on her exposure. And when you factor in hospital visits 2-3 times a week and typical errands I have to run in shifts when Paul isn't working to watch the kids, I almost feel we did too much! Trying to find a balance in my neurotic tendencies I have developed since her transplant and real life was not on the discharge paperwork..... lol.
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| June 2010 |
Soon after we got settled into our California home and I caught up on some friends blogs, I noticed my friend Amy's pictures of caterpillars turned butterflies she did with her little ones. I was so excited, I ordered some for Gabriella & PJ! On June 3 we got our newborn caterpillars.
We had so much fun watching them grow!
On June 12, they started their process of hanging upside down.
And by June 14 they were fully cocooned....
They all emerged on Fathers Day, and this Sunday, June 27, we decided it was time to let them fly.
We let them go one at a time. This one stayed close by...
And this one flew super far....
The 3rd flew so fast.... I think he was sick of us.
Our last 2 were.... "busy".... and we couldn't interrupt them to let them go. SO we decided to take some close up pictures of their amazing wings and let them go later.
Little does Gabriella realize, but she is much like these little butterflies. Transforming through something so amazing that only God could have created the ability for it to happen. An internal transformation that gives her a new form of life. No longer slowly creeping by, but spreading her wings and enjoying the open air.
I wanted to post this separate from the biopsy entry. There is so much to be thankful for that these little hurdles don't need to pollute the good news.
Firstly, Gabriella's lovely 'zipper' had went from an open wound, to a light pink, to white and healing, to bright red and raised in 5 weeks. It seems as if she is having some keloid formation. Not a big deal, and nothing that will cause issues, but it is a cosmetic thing. We have ordered some silicone strips her doctor recommended and are hoping they get here soon to try! I need to control this now though before they grow too much because they have grown super quick over the last week!
Gabriella was also experiencing a high heart rate for about a week. They call this tachycardia. The heart rate of most transplant kids is slower, but hers was beating over 140 times a minute. This was potentially a first sign of rejection, but could have been many other things, too. Since her biospy showed no rejection, it was most likely dehydration or stress of another kind, possibly even pain she wasn't expressing. Some people post transplant have a typically high heart rate, meaning it is their normal range, but this wasn't the case for Gabriella. It started to get higher at the end of may and shot up again last week, but for whatever reason (wink, wink) it has gone back down! The doctors will watch this and maybe put her on a beta blocker to help her keep it at a healthy range. Could you imagine this girl on an energy drink???
She is also having nightly headaches. This means I get to purchase another piece of medical equipment, a blood pressure cuff! LOL.... The doctor wants to know what her BP is in the morning and again at evenings when her headaches seem to arise. They could be a side effect of the cyclosporine, but I am praying this isn't the case!
But really, when I see her with so much stamina and SO happy, it makes me forget these little hindrances. :)
What a busy week it has been! But first things first!
Yesterday Gabriella and I went to clinic as usual. She had an IV started and bloodwork done, and a quick consult with the doctor. We headed upstairs and checked into the surgical floor for her to have her 2nd biopsy done. She had one done on May 24, just one week after she got her new sparkly heart!
When they do the biopsy, they sedate her heavily and go in through a vein in her groin. (For cath's they go in through an artery). They send soft wires up into her heart and take tissue samples of the heart itself. The risks associated with doing the biopsy are damaging the heart tissue, damage the valves while entering the heart, high or low heart rate episodes and infection.
Why and how often do they do this? All transplant centers have their own protocol, and then it is on a patient to patient basis. They do the biopsy to see if the body is building up a defense system and trying to fight off the heart as a foreign object. The whole point of the immuno-suppressants she is on is to prevent her body from fighting the heart, plus any other illness, off. Biopsies for her will be done at 1month (yesterday), 3months and then annually through her life, since rejection is ALWAYS a possibility. Many think that if she is in the clear now, she is "all good", but that is not the case. We must maintain her immuno-suppressants and continue having biopsies, but also watch her temperatures, weight and heart rate to catch any possible rejection early. It is a lifetime thing, but one we are grateful to have for a lifetime.
Yesterday, they took Gabriella at about 1145a and brought her back to the room at 1pm. I managed to run downstairs, eat, call Paul and use the restroom in 20 minutes because I didn't want to miss the doctor. I'm realizing this is becoming a game for me and at the next biospy I want to accomplish all that in 18 minutes. LOL! It was hard being there alone, but I was relieved it was all simple and without any major events. She slept until about 330p, which I was VERY grateful for! Back in Phoenix, they encourage the kids to wake quickly. Sure, that gets us home quickly, but you get terrible backlash from the sedation meds if you wake them too soon! She slept off the meds and we avoided moods, vomiting and boredom while needing to lay flat for 3 hours. When she woke, she drank Sprite, ate a banana and half a PBJ and was ready to go home!
The results were going to take a while to come back, and I was SO anxious to get them. I knew for sure I would have to wait until our appointment Monday! BUT at about 9am, the ever so lovely Cheri called me and told me that her biospy came back as ZERO rejection! How AMAZING is that!
So we are going to keep enjoying the small miracles that come as a result of the big one. I keep telling people I am waiting for the hard part, but I need to remember the hard part for us was before. Gabriella went through so much with her diagnosis, stroke and overall decline over the last year. I have just seen so many precious kiddos have difficulties after transplant & surgery that I kinda prepared myself for the same given our long stretch of struggle. It dawned on me last night when I was talking to Mathildas mom and she was mentioning all the doctors Mathilda has to see that we did that, seeing a million doctors and fighting for her survival. That was the hard part. It is a relief knowing that her new sparkly angel heart is meshing so well with her body. I am thankful every moment of every day for Gabriella's heart donor... and know that God had intended Gabriella's body to love this heart for a reason.
I had a sweet new friend send me an email the day Gabriella was released from the hospital, one month ago today. We sat in her room just hours before taking our baby home, and watched the story and listened to the song, weeping. A story of not only a CHD hero, but an endless faith in God.
It was then that we knew, we were in the morning.
And the full song.
Do you wonder why you have to,
feel the things that hurt you,
if there's a God who loves you,
where is He now?
Maybe, there are things you can't see
and all those things are happening
to bring a better ending
some day, some how, you'll see, you'll see
Chorus:
Would dare you, would you dare, to believe,
that you still have a reason to sing,
'cause the pain you've been feeling,
can't compare to the joy that's coming
so hold on, you got to wait for the light
press on, just fight the good fight
because the pain you've been feeling,
it's just the dark before the morning
My friend, you know how this all ends
and you know where you're going,
you just don't know how you get there
so just say a prayer.
and hold on, cause there's good who love God,
life is not a snapshot, it might take a little time,
but you'll see the bigger picture
Would dare you, would you dare, to believe,
that you still have a reason to sing,
'cause the pain you've been feeling,
can't compare to the joy that's coming
so hold on, you got to wait for the light
press on, just fight the good fight
because the pain you've been feeling,
it's just the dark before the morning
yeah, yeah,
before the morning,
yeah, yeah
Once you feel the way of glory,
all your pain will fade to memory
once you feel the way of glory,
all your pain will fade to memory
memory, memory, yeah
Would dare you, would you dare, to believe,
that you still have a reason to sing,
'cause the pain you've been feeling,
can't compare to the joy that's coming
Would dare you, would you dare, to believe,
that you still have a reason to sing,
'cause the pain you've been feeling,
can't compare to the joy that's coming
com'n, you got to wait for the light
press on, just fight the good fight
because the pain you've been feeling,
it's just the hurt before the healing
the pain you've been feeling,
just the dark before the morning
before the morning, yeah, yeah
before the morning
BEFORE THE MORNING LYRICS - JOSH WILSON
Tonight I went to the monthly meeting of Hopeful Hearts at Loma Linda, a support group for heart parents. It was started by my friend Shannon and her friend Camille some time ago, and I was excited to attend my first meeting! There were some people there who had been coming for a while, and some who came fresh from upstairs because they saw a flyer. During introductions you could see the need for some parents to just talk... they had been thrown into this elite club that no one exactly signs up for, and not given an instruction manual. They wanted to share their story, the timeline of events, and cry. We had a short time of that, then a guest speaker give a presentation on an organization that helps arrange services for Special Needs kids (wow, they actually help you here in California?!?!).
As the meeting wrapped up, we spoke to a guy, probably a little younger than me, who came down from upstairs. His girlfriend stayed up to feed their baby girl, Matilda. Their baby was born on 6-10-10 and diagnosed shortly after birth with Tetralogy of Fallot, a once recently fatal heart condition that over the past few decades has turned into a legendary repair. He had so many questions, and was a broken man. His baby girl was sick, and he has no clue what the future holds, and he was scared about tomorrow which will be her repair surgery for her ToF. Not only is having your first baby scary enough, he was facing this as well. We spoke a little about what they have faced the past week and extended our support. He left, but came back with his precious girlfriend. These people were definitely people that needed to be around others who have survived their babies going through heart surgery. His girlfriend was a mess, so nervous for tomorrow, so nervous for the future, so where I was when Gabriella was unexpectedly diagnosed 13 months ago. After talking for a little while with them, a nurse who does the teaching on the floor and we met when Gabriella was admitted suggested we all pray together, so we did. Thats one thing I LOVE about Loma Linda, is no one is afraid of offending anyone by offering prayer.
We exchanged some more conversation and support and again I offered up my assistance since we are staying SO close to the hospital. Before we parted ways, she asked me if I would be there tomorrow with them as they waited for Matilda to get out of surgery. She said she felt a strength from me and could use having someone there that had been through something similar as they will be. It was an honor to be asked, and these kinds of moments remind me WHY God put me through what He did as a heart mom. I desire so deeply to give back and be involved- to use our experience for Gods work.
So tomorrow, that is where I will proudly be. Matilda will be going into surgery around 12 noon PST and her parents will be nervously waiting for that confirmation that she is done with surgery... something we did exactly one month prior on May 17th. PLEASE be in prayer, and that was the last thing her mom asked us all to do... just pray. Whether it be heart transplant or heart surgery, baby or child.... it is never easy to watch your precious one suffer and wonder if they will live to fulfill the dreams you had for them. I hope to be a comfort to them just as Shannon was to me last month as she sat with us before transplant- something I doubt she realizes impacted my experience profoundly.
Matilda's dad noticed a quote at the Ronald McDonald House that he said before he would have thought was hokey, before his life was thrown into perspective... Such simple words, but it is amazing how deep they can run when you are faced with the possibility of losing your child.
"Every day is a gift"
Well well well. There are always surprises to keep our faith tested. This week we have been given MANY surprises, therefore requiring us to delve deeper into our faith.
Today we had clinic, as we do twice a week. Gabriella gained .1 kilo, which in my world is good news. The clinic doctor stopped one med, cut back another to once a day and lowered the dose of her cyclosporine from 40mg to 36mg. Those were all great, making for a beneficial clinic visit. I would have been ok if it had stopped there though.
She told us that the final diagnosis of Gabriella's heart condition was coming in formally. She needed to have a talk with the transplant team and the pathologist herself, but it seems as if Gabriella's Restrictive Cardiomyopathy was in fact secondary to another condition. She said it seems as if Gabriella's original condition was possibly Hypertrophic Cardiomyopathy. Hypertrophy is an abnormal growth of the heart muscles cells, causing the ventricles to be thick and stiff (the white sickly muscle I described in my blog yesterday). In her case, it led to a case of Secondary Restrictive Cardiomyopathy, which is where her ventricles were stiff and lost their elasticity, which we knew she had. So basically, her ventricles were stiff and rigid from the outside, and thick and diseased on the inside. Either way, her heart was severe, she was at high risk for sudden cardiac arrest, all possible symptoms were the same and she needed a transplant. The transplant stands as the final treatment.
How does this change the game? Little is known about Restrictive Cardiomyopathy but they are fairly confident that in most cases it is not genetic. Now that they are finding that her primary diagnosis was Hypertrophic Cardiomyopathy, we are faced with the dreaded factor of this being a heart disease passed through family lineage. When I explained to the Doctor that we did not have any of this in our family that we knew of, she said it was very possible for it to be a new mutation in Gabriella. So now, we are going from me wanting to have her native heart genetically tested just in case, to it being a priority. She is writing me a referral to see a geneticist and Gabriella and I will consult with them while here at Loma Linda. If needed, Paul will be tested as well, so we can see if we do carry the gene for this heart defect or if it is truly a new mutation in Gabriella. This is important for many reasons. If Paul or I end up carrying the gene for this heart defect, we will need to be checked ourselves, and most importantly keep a VERY close eye on PJ. More long term, this would play a very important role in us having future children from my own womb. (Come on, I'm only 28 and I am so not done having these amazing babies we tend to create). Anyways, if Gabriella has a new mutation of this gene, this is very valuable information for her as she grows to be an adult, a wife and potentially a mother, God willing.
Here is a link to a description of the cardiomyopathies from a lovely childrens cardiomyopathy organization: http://www.childrenscardiomyopathy.org/site/description.php
So that is where we are now. God is always adding on to our plate. This has potential to be big, or minuscule, and for that answer we will be patient and wait. I have to remind myself, as I have frequently in 2010, that nowhere in the Bible does it say God will not give us more than we can handle. He gives us more than we are capable of handling on our own accord as humans, to see if we will cling to Him to tend to what we can't. Lets just say, I have been clinging to his feet for a while and have no plan on loosening my grip!
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