Saturday, February 27, 2010
But nothing compares to what I found tonight.
@phxnews New Hospital for Pediatric Transplants: In the past, infants that needed a heart transplant would have to travel t... http://bit.ly/9cFGkH
@stevekrafftfox New children's heart transplant program at St. Joseph's hospital is first one of its kind in the Valley of the Sun
I watched this article: FOX 10 NEWS
And I researched Dr. John Nigro who graduated Med School from University of Illinois, specialized in pediatrc cardiothorasic surgery at Childnres Hospital of Los Angeles and did further training at Stanford University in NorCal.
And I read the press release, released yesterday.
I have a lot of work to do on Monday....... :)
Tuesday, February 23, 2010
She has gotten to the point today, just shy of 5 months later, where she can say approximately 30-40 words and phrases in context and accurately (including Disneyland, which makes me the happiest mommy on earth). I couldn't be more proud of her progress! And to think that when her stroke happened, she had no control to even open her mouth or stick out her tongue! Granted, if she wasn't like me... stubborn and a perfectionist... she'd probably have more. But it'll come.
I had to share a video I shot of her counting to 10 this past weekend. Most of Gabriella's words are crystal clear, but as you can see from the video, the words counting to 10 are not "perfect"... yet. The whole point of therapy is to train her mouth to move in the proper motions to get that sound and word in her head out accurately. The more and more she practices, this counting to 10 will be crystal clear. And she only follows my prompts, not because she doesn't know how to count to 10, but to train and prompt her mouth to move in the right sequence for the word itself.
I'm hoping to post a followup video of her counting to 10 solo and crystal clear soon!
Monday, February 22, 2010
Oh yeah, my point. To go back a bit, Gabriella does this throat clearing thing. After some research in both anatomy and symptoms of RCM, I found this to be a 'normal' tick for her condition due to the back up of blood flow from the stiff heart. She started a cough last Tuesday which at first I attributed to this tick she has. By Thursday she started fevers. Come Saturday, I couldn't keep her fevers under control and her cough was constant. I feared the stress it was putting on her heart. My amazing and near-Godly pediatrician took a bit out of his evening to talk to me and suggest I take her to the ER. He even called ahead to tell them to not let Gabriella sit with the cooties in the waiting room.
(Can I stop for a moment and say I'm NOT that mom... I don't go to the ER for anything unless it involves gaping wounds, missing limbs or convulsions. In the 5 years I have been a mom, we had been there once when Gabriella had 105 fevers and couldn't breathe, and it turned out to be croup. Makes sense now why her body took it so hard, she had a sickly heart... but anyways.)
So we headed to Cardon Childrens Saturday night...
When we got there, they were cleaning a room for her so sat us in the hallway outside the room to wait. I cased out the situation, the little girl before her had stepped on something and needed 4 stitches in her foot- so I knew the room wasn't just plastered for hours with RSV or another cootie. The downfall to sitting in the hallway was watching things go down in the room next to her where a 1 month old baby was being intubated for severe RSV. I was highly emotional, trying to not cry.... those poor parents. Later the nurse told me the cases they have seen have been so severe that day and they even had a 4m old breathing 96 times per minute! GEEZ!
They hooked her up to a Pulse-Oxcimeter. I've decided I need one for my house. The last time she was monitored for any length of time was when she had her stroke. She was my 100% baby, to everyones surprise! Well, she tends to run about 94% sitting up not coughing and 89% sleeping. They did a chest X-ray which was clear despite wheezing and decreased lung sounds. They did a strep swap to rule out that, which ticked her off. They drew blood from her arm, and she fought so hard she blew her own vein! Nurse Toni was so amazing and calm about it all... she got some blood out of the blown vein anyways! (Shout out to nurse Toni! I hope you check in on the blog!!) She then started an IV in her hand to get more blood and be prepared if she needed IV antibiotics. All her bloodwork came back normal. She had elevated liver enzymes but they said that's common with fevers and general illness, and she was slightly dehydrated due to the Lasix for her heart. They decided she had a chest cold.
That's right. We were in the ER until after 3am for a chest cold. So if this mom, who only takes kids missing limbs or convulsing to the ER, was in the ER with her 5yo and a chest cold, it can paint the picture of how hard that ridiculous cold was on her body. Her special heart can barely tolerate keeping HER going, let alone fight illness as well. I'm sure this is just a preview of the Immunosuppressed lifestyle she will have!
So by today she is doing well. Her fevers have taken a hike, and her coughing has decreased. And as if I needed the comparison of a healthy vs. unhealthy kid, PJ is now sick! He has the same nasty cough, but is handling it so much better. Now that kid, he got ALL the strength. I wouldn't be surprised if they find his heart to be made of platinum muscle. Probably for a reason too, he has 2 tough women in his life. :)
Sunday, February 21, 2010
Gabriella is in the ER tonight trying to diagnose and treat her high fevers and cough she's had. We have had an Xray, throat swap, 2 blood draws, O2 monitoring, heart monitoring... And haven't found anything conclusive yet. I will write tomorrow after we (hopefully) have a reason for all of this and after this exhausted and drained mama gets either sleep or strong coffee!
Friday, February 19, 2010
(all information according to www.unos.org)
As of February 19, 2010 there are 3,093 people (adults and children) in the United States waiting for a heart.
(OPTN data from February 12, 2010)
There are 88 kids waiting for a heart in the age category 1 to 5 years in the whole United States.
There are 18 one to five year olds waiting for a heart in Gabriella's blood type of A+. Half/9 of those kids have been waiting less than a year in the United States.
Region 5: Arizona, California, Nevada, New Mexico and Utah
There are 16 kids ages 1 to 5 waiting for a heart in the Region 5.
There are 2 one to five year old kids matching her blood type of A+ in Region 5.
"If you you could spend the day with the child whose heart will one day go to your daughter, would you?"
Thats deep... it is kinda like asking "If you have the option to know when it is you will die, would you like to know?"
Of course, spending time with him/her would be extremely heartbreaking- knowing they were not going to live, but that is a fear I live anyways... everyday with my Gabriella.
But the answer for me is easy and sincere.... yes. If it were even remotely possible to know who it would be, I would love to be with that child. Like I blogged, whoever the donor is will not die BECAUSE of Gabriella, Gabriella will live because of them and the necessity of God's divine plan. And to actually know that child, experience their personality, and form that living bond... that would be priceless. To think of the legacy that could be carried on by Gabriella and I actually knowing about them in human flesh... just amazing. I have such a passion to always keep the donor's spirit alive and always tell the story. To always include him/her in Gabriella's story, so that the importance of their gift, and reality of the fact that they were a living and impactful vessel of God, can always remain as real as Gabriella's survival is real.
Thank you so much for asking me that!!
Sunday, February 14, 2010
In the early weeks of finding out she needed a new heart, her doctor told us Gabriella would have, potentially, a maximum of 5 years before this condition would take her life. He said it with much caution, as no one knew what to expect of this condition that children just do not get. Everyday we wait is a day closer to loosing her... it is just that no human knows how many of those waiting days there are. As these more recent visits have gone, I see Dr. Alhadheri's doubts in having 4 more years visual on his face.
We had so much fear in August, when we went for our intake visit to Loma Linda. It was still such a hard concept for us, with Gabriella being so visually healthy. To think of the surgery and the severity of what we were putting her through, we just couldn't be 100% at peace with it all. When she had her stroke in September, and were given a visual experience of how unhealthy she really was, we were given a wake-up call. These months of recovery and waiting, and watching her get worse, put us in a position this past week to go to Loma Linda for listing with excitement and joy.
The only way to ensure Gabriella gets to start school, experience recess, face peer pressure, win a competition, learn to drive, dye her hair odd colors, go to prom, graduate from high school, choose a career and pursue it, meet her soul mate, have or adopt babies... or even change the world- she needs a new heart.
In the very same way, another child will not.
It is impossible to have a single moment rejoicing in the memories yet to come without grieving in the moments another mother will not have. My heart is so full of excitement and happiness and in the same moment compassion for another woman out there I don't know yet. It is something I will never be able to explain, not on my blog or in person. It is a feeling that is just a feeling, and one that is only shared among others who have actually experienced it.
The most important thing to remember is that a child will not loose their life SO THAT Gabriella can live. Gabriella will live BECAUSE a child had to loose their life. It is all part of God's divine plan. Which to me means, it is okay to pray for Gabriella's new heart. It does not mean you are praying the death of another child. I find it my best advice to pray for God's timing and ultimate design. That, if another child does have to loose their life, that their gift can be forever shared and displayed in the life Gabriella lives. That the mother, father and family of the child who gives this gift can find peace and comfort, if in nothing else, that they spared another parent of that pain.
The day we get the call for Gabriella's new 'sparkly heart' will be a day our family expands. Whether or not we ever meet the donor family, they will be forever a part of ours and my debt to them can never be repaid. I will make it my focus in life to make sure Gabriella always understands the gift like no other she received.
I asked a friend of mine if she would like to write something, to share the 'other side of the story'. I have been blessed to know her, and know that God put her in my life for a reason. Here is what she shared for all of you to read.....
My name is Lara and I am a friend of Kristi. I am constantly amazed how people come into your life for a reason. I worked with Kristi for a very short amount of time, but became great friends. I am also a mother of a child that has gone home to Jesus. Her name is Avery and I now have my very own Guardian Angel. As a mother, we all want the very best for our children and the thought of losing one is nearly unbearable for us all. Trust me, it is. But...in the loss and over time, you become aware that your life becomes an example for others that are going through similar situations or hardships. For me, I have been blessed with Kristi and Gabriella. I unfortunately was not able to donate any organs of my precious Avery, due to severe internal injuries. BUT... I WOULD HAVE! I truly believe that the greatest blessing a grieving mother could get, would be the knowledge that your child saved someone else. What an amazing gift!!! The loss of your child will not go away and your gift will not bring her back, but I would never, ever, ever wish the pain of a lost child on my very worst enemy. What a wonderful feeling to know that you have spared another family that pain. God has a day and time for us all. Unfortunately, some are taken away before we believe they should be. But some, a very few, need help from another special angel so that they may live life until their time comes. Much love to you all.
Thursday, February 11, 2010
Praise God and His amazing love. And my heart is constantly with the family who will give my daughter the gift of life while greiving their own loss. God knows who they are already.
Tuesday, February 9, 2010
We got word this afternoon that our insurance approved a visit for this Thursday and we are leaving Wednesday afternoon for California! We will stay in Riverside (thanks Priceline for your killer NYOP deals) and have an appointment Thursday morning for Gabriella. Neuro documents approving her for transplant have been sent to Loma Linda (not without a days worth of fighting to get them sent today) and everything is in line! They will do some bloodwork and a general evaluation of her status and get her on the list within 24hours of our visit!
I am ecstatic! This stage of chaos I've been dealing with this week to get this pulled together is definitely going to pay off when everything is in line and we come home to WAIT!
For those interested in the 'list' procedures.... They basically put Gabriella's stats into a national database, UNOS- United Network for Organ Sharing. She isn't listed as "Number 34" or whatever number she would be. Rather, they have all the candidates in there with all their stats, and when a donor heart becomes available, they plug in the donor heart stats and a list is THEN generated for that specific heart offers compatibility. Of course, part of the stats they enter for candidates is level, and Gabriella being a non-urgent level (praise God), she would not get the heart before a child on life support. It is a gamble every time they get a donor heart.
On that note, imagine if more people were donors. The wait would be shorter, the list would move faster and more people would survive instead of dying while waiting. If you were to die today, wouldn't you want to help someone who has a chance at living? That choice a parent will make for their child come time for Gabriella's new sparkly heart will be what saves her life, and a gift more valuable and precious than any other. PLEASE consider officially signing up to be a donor here: http://donatelife.net/
Monday, February 8, 2010
This week is Congenital Heart Defect Awareness Week, as well as Heart Disease and Stroke Awareness Month!
What is a CHD???
You passed me in the shopping mall
(You read my faded tee).
You tapped me on the shoulder,
Then asked, "What's a CHD?"
I could quote terminology,
There's stats that I could give.
But I would rather share with you
A mother's perspective.
What is it like to have a child with a CHD?
It's Lasix, Aspirin, Captopril
It's wondering...Lord what's your will?
It's monitors and oxygen tanks
It's a constant reminder to always give thanks.
It's feeding tubes, calories, needed weight gain
It's the drama of eating...and yes it's insane!
It's the first time I held him, I'd waited so long,
It's knowing that I need to help him grow strong.
It's making a hospital home for awhile
It's seeing my reward in every smile.
It's checking his sats as the feeding pump's beeping
It's knowing that there is just no time for sleeping.
It's caths, x-rays and boo boos to kiss
It's normalacy I sometimes miss.
It's asking do his nails look blue?
It's cringing inside at what he's been through.
It's dozens of call to his pediatrician
She knows me by name, I'm a mom on a mission.
It's winter's homebound and hand sanitizer
It's knowing this journey has made me much wiser.
It's watching him sleeping his breathing is steady.
It's surgery day and I'll never be ready.
It's handing him over, I'm still not prepared,
It's knowing that his heart must be repaired.
It's waiting for news on that long stressful day,
It's praying...it's hoping...that he'll be okay.
It's the wonderful friends with whom I've connected,
It's the bond that we share, it was so unexpected.
It's that long faded scar down my child's small chest,
It's touching it gently and knowing we're blessed.
It's watching him chasing a small butterfly,
It's the moment I realized I've stopped asking why.
It's the snowflakes that fall on a cold winter's day,
They remind me of those who aren't with us today.
It's a brave little boy who loves Thomas the train,
Or a special heart bear or a frog in the rain.
It's the need to remember we're all in this plight,
It's their lives that remind us we still need to fight!
It's in pushing ahead amidst every sorrow,
It is finding the strength to have hope for tomorrow.
And no, we'll never be the same. It's changed our family,
This is what we face each day.
This is...a CHD.
**Written by Stephanie Husted (fellow heart mom)
GABRIELLA'S CLOT IS GONE!
PRAISE GOD! Her scan looked great! The area has 'recannulaized'. He said the blood flow has been restored to the area and the clot is gone! The damage done to the surrounding areas is irreversible but to know the cause of the issue is completely gone is TOTALLY God! And to know she is safe for bypass and transplant is invaluable news! Gabriella is most excited that her Lovenox shots are all done and she only has to chew a baby aspirin!
I barely had the call disconnected before I dialed Loma Linda. I am waiting now to hear back from them if we can go this Thursday to clinic and get her listed then or if we are too late for this week and have to go next Thursday. They will evaluate her and get her listed! EEEK!
Thank you to everyone, who from September 25th until today had their prayers on Gabriella. Those deep and heartfelt cries to God to take the clot and destroy it worked! And to know that those prayers will now be on her new heart and the surgery it entails makes me so excited to see God work again in that area!
Saturday, February 6, 2010
Be sure to take advantage of the buy 2 or more items at regular price, get 2 or more expensive items half off! All items ship direct to you.
I love the Lia Sophia pieces I own and it is such a great jewelry line. Rodium jewelry that won't tarnish and lifetime warranty for any damage to the piece!
Check out the previous post for ordering details. 50% of all the proceeds go directly to Gabriellas Heart Fund!
Friday, February 5, 2010
We got up early and went to Phoenix Childrens for Gabriella's MRI. We got registered and taken back quickly to MRI waiting. The anesthesiologist came in and went over Gabriellas history with us. She told us about her approach to putting Gabriella under this time, since she was so unstable in September. By the look of shock on my face, she asked me if I even know what happened in September. She proceeded to tell me that putting Gabriella under when she had her stroke was risky, and her heart was extremely unstable during the MRI. She hit a critical point under anesthesia and she needed to prepare for that today. She decided to only put the gas on Gabriella briefly and only do what meds were absolutely necessary. So I went in with Gabriella, and she was such a big girl. She laid on the table willingly. She was scared and crying but knew this was something we had to do. They put the gas on her and it took her about a minute to calm, and they kicked me out. About 45minutes later, they called us back. We could hear Gabriella crying from the hallway. When we got in, they let me hold her. They told me that she was doing well with the gas and her heart remained stable, so they only did minimal IV meds to keep her under. The downfall to this type of anesthesia is it causes the kids to wake up quickly afterwards and VERY agitated. Gabriella cried for a good 25 minutes before we got her to calm down. She started coming around and she drank some water, and before we knew it we were being discharged!
She has been home and relaxing all afternoon now. She's eaten a PBJ sandwich, sausage, cereal and chicken nuggets. I swear, that girl can put DOWN some food nowadays!!! Positive part of the type of anesthesia they did is she isn't sick!
My work has started though. I have called the cardiologist directly, his nurse, and the Neurologists nurse. I am about to start my second round of phone calls right now before close of business. We NEED these results and the authorization for transplant SOON! Once we get that, we can head to Loma Linda for clinic and that's IT! She'll be listed!!!!!!!
If you can pray specifically for the MRI results being clear and the process being quick, because Gabriella's heart cannot wait forever.
I was reading some links from Twitter and found a GREAT write up on kids with RCM. I have read a lot of restrictive cardiomyopathy reports, but rarely do you see them for kids. Probably because it happens in less that 1 per million children. There's not a lot of information. But if you want a refreshed on Gabriella's condition, here is the link:
Thursday, February 4, 2010
The Ronald McDonald House was always a great place to me when I would hear about it here and there. But until I experienced it, I could never have fully appreciated what it offered. Our stay at the RMH Phoenix Childrens was merely a preview of the blessing they are, since we will be staying at the House in Loma Linda for months come transplant time.
Tomorrow Gabriella has her MRI at Phoenix Childrens. Everytime we head to Phoenix for an appointment or test, I try and make it a priority to put something together to take to the Ronald McDonald House on campus that so blessed us in September and October. Because of how much we appreciate what they offered to our family, we want to help do our part in giving back what we can right now. We want to help more in the future by making monthly meals and volunteering in whatever way we can. For now, we take different foods and essentials to the house. There were a couple days when we stayed there that quick snacks or fast meals were in short supply and there was not much to eat. I keep that in mind when grocery shopping and packing a box. Do you know how cheap you can get some things like boxes of macaroni and cheese or crackers? Or how valuable those free samples or travel sized shampoos and lotions from a hotel are? And do you know how much those simple items mean to a family at the RMHC? I'll tell you, it means the world.
I encourage you to clean out your pantry's. Are there canned fruits you haven't opened yet and don't have plans for? Do you have way too many boxes of Ritz? Do you have a plethora of travel sized items you took from those last 4 hotel stays? Consider taking them to your local RMHC.
You can find a complete list of foods, personal items, household items, games, etc and a link to search your local chapter here: RMHC NEEDS They will give you a donation receipt, and it's a great lesson in charity too for kids. My kids totally understand that mommies and daddies stay at this special house when their babies are sick in the hospital, so we take them things they need. And if you live in Arizona and want to bring them to me, just email me or comment here I will make a special trip with all your donations!
Thanks, Gabriella's friends!
Tuesday, February 2, 2010
Please visit http://supportgabriellasheart.blogspot.com/ for very important information on a very special fundraiser!
Posting this message on behalf of Laurie Nelson and Michelle McCrea.... thank
you, lovely ladies!
In Honor of the Vega family we are having a "Jewels for Gabriella" fundraiser on February 6, 2010 featuring Lia Sophia Jewelry at the home of the McCrea's at 584 S Golden Key Street Gilbert, AZ 85233. We are asking you to come and support this very special family by purchasing jewelry. Our special will be, buy 2 or more items at regular price get an equal number of items at HALF price! Make your highest-price selections your HALF-price items! There is no limit. (Lia Sophia jewelry has a lifetime Replacement Guarantee.)
If you are unable to attend and want to help Gabriella, please visit www.liasophia.com/laurienelson (orders can be placed beginning February 1!)
Follow these steps to place an order
Step 1 click on "Our Jewelry"
Step 2 click on "Spring/Summer 2010"
Step 3 click on How to purchase
Step 4 Hostess Name – Michelle Mc Crea
Step 5 Place your order.
Thank you in advance from all of us.
Monday, February 1, 2010
This morning we went to our monthly (very early) cardiology visit. They did her EKG and ECHO like normal. Dr. Alhadheri came in like usual to talk with us. He said Gabriella's 24 hour montitor she wore last month came back stable, and showed no real issues to worry about. He complimented her weight gain, which at 45" tall she is now 43lbs! Dr. A, with urgency and concern, said he doesn't want to drag any more heels. I discussed my fears over the urgency, or lack of, on the end of neurology. He ensured he would do his part in keeping up on this all. He even said he would call Gabriella's neurologist today and remind him of the critical nature of the MRI results and status for listing. He also told me to text him Friday after her MRI to let him know it was done so he can persue the results and get them to Loma Linda for us. Have I mentioned lately how much I love this guy? He truly is invested in Gabriella and cares for her so much. Anyways, as his urgency grew, I asked about todays ECHO. Like my blog title says, it was inevitable. I knew we were going to hit a month where the results weren't stable and consistent with the month before. We dodged bullets until we could no more. He said her left atrium is growing. As it grows, it starts disturbing the heart connections all around it, like an electrical system that gets crowded.
What are arrhythmias? Simply, they are like episodes of irregular heart activity. They can cause tiredness, chest pain, dizzyness, fainting... and in her case cardiac arrest. This exact thing is what I have mentioned in the past.... about those stories where young people collapse and die suddenly while playing sports because they were unaware they had a heart condition. You can read more about Arrhythmias here if you want to read in detail: WIKI But if you are anything like me in faith and hope, just rebuke the constant phrase 'sudden death'.
Of course, she could have aquired these episodes long before today, but the growth of her heart only makes the risk that much greater, and enough that our cardiologist is ready right now to get things in order. It is quite possible she may have had some arrhythmia episodes in September that caused her stroke, as I am discovering with research. Time is essential now. No more wasted time, neurologists vacations, delay in testing, etc etc etc.
So what happens now? Thankfully, Gabriella's MRI is this Friday bright and early. Given we can get the results sent to Loma Linda in a quick timeframe, we will head over to Loma Linda next week. They will reevaluate her and relist her. There is nothing standing in our way besides the results from this test. I am ready to be wherever I need to be whenever I need to be there. She just needs this heart. And soon.