Today is March 18, 2010. One year ago today we had our very first of what we would later find to be a lifetime of cardiology visits. We had our initial consult with a Cardiologist on March 18, 2009, to find Gabriella had heart abnormalities we never knew existed. It is amazing how this past year seems to have lasted an eternity while also flashing by in the blink of an eye, in perfect sync.
To 'celebrate' this year marker, we have our monthly clinic appointment at Loma Linda! Gabriella and I came over to California yesterday for a long stay. We have limited medical transport available for almost two weeks, so Gabriella and I are staying locally to the hospital in the event the call comes in this time frame. It turns out to be cheaper to stay locally than to pay for some of the flight quotes we have as back up resources, and since it is something we were able to plan for, we decided it was best to go. My insanely talented trip planning skills got us into an extended stay less than an hour from Loma Linda for a smoking deal!
It turns out we have a lot planned! We are meeting up with my best friend from NorCal for the first couple days since they will be in town also, going to visit family a short drive away, meeting new heart friends we have met through this journey, playing at the beach and going to some fun places, and spending some quality mommy daughter time. I started to realize as I planned this trip how little time Gabriella and I get recreationally! Sure, I spend a ton of time just us 2. But it is typically going to doctors, emergency room, therapy, etc. So despite the fact that we will miss Daddy and PJ back home, we are going to make best of the necessary situation! And hope the time that we are gone flies like this past year has!
If I could ask for prayer, I'd ask for you all to pray protection over us on this journey! And also that God fill in our emptiness as we miss our family back home. This is almost a preview of how it will be post transplant as we stay close to the hospital for 4-6 months! And finally, that if God wills Gabriella a heart in this time, that he guide Paul with safe travels making it to us!
This picture was taken St Patricks Day 2005 when Gabriella was just 2 months old. And no, we did not position her hand that way! It became a 'classic' shot we will remember forever and show her boyfriends one day. ;)
We went to a Spring training game this past Sunday thanks to our cousins! I had to share this insanely sweet picture!
I thought this information to be highly interesting!!! (Read the Seventh Day Adventist position, this is the faith base of the hospital Gabriella will be at!)
AME & AME Zion (African Methodist Episcopal)
Organ and tissue donation is viewed as an act of neighborly love and charity by these denominations. They encourage all members to support donation as a way of helping others.Amish
The Amish consent to donation if they know it is for the health and welfare of the transplant recipient. They believe that since God created the human body, it is God who heals. However, they are not forbidden from using modern medical services, including surgery, hospitalization, dental work, anesthesia, blood transfusions, or immunization.Assembly of God
The Church has no official policy regarding donation. The decision to donate is left up to the individual. Donation is highly supported by the denomination.Baptist
Though Baptists generally believe that organ and tissue donation and transplantation are ultimately matters of personal conscience, the nation's largest Protestant denomination, the Southern Baptist Convention, adopted a resolution in 1988 encouraging physicians to request organ donation in appropriate circumstances and to '...encourage voluntarism regarding organ donations in the spirit of stewardship, compassion for the needs of others and alleviating suffering.' Other Baptist groups have supported organ and tissue donation as an act of charity and leave the decision to donate up to the individual.Buddhism
Buddhists believe organ donation is a matter that should be left to an individual's conscience. Reverend Gyomay Masao Kubose, president and founder of The Buddhist Temple of Chicago and a practicing minister, says, “We honor those people who donate their bodies and organs to the advancement of medical science and to saving lives.” The importance of letting loved ones know your wishes is stressed.Catholicism
Catholics view organ donation as an act of charity, fraternal love and self sacrifice. Transplants are ethically and morally acceptable to the Vatican. Pope John Paul II stated, "The Catholic Church would promote the fact that there is a need for organ donors and that Christians should accept this as a “challenge to their generosity and fraternal love” so long as ethical principles are followed."Christian Church (Disciples of Christ)
The Christian Church encourages organ and tissue donation, stating that we were created for God's glory and for sharing God's love. A 1985 resolution, adopted by the General Assembly, encourages “members of the Christian Church (Disciples of Christ) to enroll as organ donors and prayerfully support those who have received an organ transplant."The Church of Christ, Scientist
Christian Scientists do not take a specific position on transplants or organ donation. They normally rely on spiritual, rather than medical means for healing. Organ and tissue donation is an issue that is left to the individual church member.Episcopal
The Episcopal Church recognizes the life-giving benefits of organ, blood, and tissue donation. All Christians are encouraged to become organ, blood, and tissue donors "as part of their ministry to others in the name of Christ, who gave His life that we may have life in its fullness."Greek Orthodox
According to Reverend Dr. Milton Efthimiou, Director of the Department of Church and Society for the Greek Orthodox Church of North and South America, "The Greek Orthodox Church is not opposed to organ donation as long as the organs and tissue in question are used to better human life, i.e., for transplantation or for research that will lead to improvements in the treatment and prevention of disease."Gypsies
Gypsies tend to be against organ donation. Although they have no formal resolution, their opposition is associated with their belief in the after-life. Gypsies believe that for one year after a person dies, the soul retraces its steps. All parts of the body must remain intact because the soul maintains a physical shape.Hinduism
Hindus are not prohibited by religious law from donating their organs, according to the Hindu Temple Society of North America. In fact, Hindu mythology includes stories in which parts of the human body are used for the benefit of other humans and society. The act is an individual decision.Independent Conservative Evangelical
Generally, Evangelicals have had no opposition to organ and tissue donation. Donation is an individual decision.Islam
Muslims believe in the principle of saving human lives, and permit organ transplants as a means of achieving that noble end.Jehovah's Witnesses
Jehovah's Witnesses believe donation is a matter best left to an individual's conscience. All organs and tissue, however, must be completely drained of blood before transplantation.Judaism
All four branches of Judaism (Orthodox, Conservative, Reform, and Reconstructionist) support and encourage donation. Said Orthodox Rabbi Moses Tendier, "if one is in the position to donate an organ to save another's life, it's obligatory to do so, even if the donor never knows who the beneficiary will be. The basic principle of Jewish ethics - 'the infinite worth of the human being' - also includes donation of corneas, since eyesight restoration is considered a life-saving operation." In 1991, the Rabbinical Council of America (Orthodox) approved organ donations as permissible, and even required, from brain-dead patients. The reform movement looks upon the transplant program favorably. Rabbi Richard Address, Director of the Union of American Hebrew Congregations Bio-Ethics Committee, stated that, "Judaic Responsa materials provide a positive approach and by and large the North American Reform Jewish community approves of transplantation."Lutheran
In 1984, the Lutheran Church in America passed a resolution stating that donation contributes to the well-being of humanity and can be "...an expression of sacrificial love for a neighbor in need." They call on members to consider donating organs and to make any necessary family and legal arrangements, including the use of a signed donor card.Mennonite
Mennonites have no formal position on donation, but are not opposed to it. They leave the decision to the individual or his/her family.Moravian
The Moravian Church has made no statement addressing organ and tissue donation or transplantation. Robert E. Sawyer, President, Provincial Elders Conference, Moravian Church of America, Southern Province, states, “There is nothing in our doctrine or policy that would prevent a Moravian pastor from assisting a family in making a decision to donate or not to donate an organ.” It is, therefore, a matter of individual choice.Mormons
The Church of Jesus Christ of Latter-Day Saints considers the decision to donate organs a selfless act that often results in great benefit and the decision to donate for medical purposes, or the decision to authorize donation from a deceased family member is made by the individual or deceased member's family. The Church states that the decision should be made after receiving competent medical counsel and confirmation through prayer.Pentecostal
Pentecostals leave the decision to donate up to the individual.Presbyterian
Presbyterians encourage and endorse donation. It's an individual's right to make decisions regarding his or her own body.Seventh-Day Adventist
Donation and transplantation are strongly encouraged. Seventh-Day Adventists have many transplant hospitals, including Loma Linda in California, which specializes in pediatric heart transplantation.Shinto
In Shinto, the dead body is considered impure and dangerous, and thus quite powerful. Injuring a dead body is a serious crime. It is difficult to obtain consent from bereaved families for organ donation or dissection for medical education or pathological anatomy because Shintos relate donation to injuring a dead body. Families are concerned that they not injure the itai, the relationship between the dead person and the bereaved people.Society of Friends (Quakers)
Quakers do not have an official position. They believe that organ and tissue donation is an individual decision.Unitarian Universalist
Organ and tissue donation is widely supported by Unitarian Universalists. They view it as an act of love and selfless giving.United Church of Christ
Reverend Jay Lintner stated, “United Church of Christ people, churches and agencies are extremely and overwhelmingly supportive of organ sharing. The General Synod has never spoken to this issue because, in general, the Synod speaks on more controversial issues, and there is no controversy about organ sharing, just as there is no controversy about blood donation in the denomination. While the General Synod has never spoken about blood donation, blood donation rooms have been set up at several General Synods. Similarly, any organized effort to get the General Synod delegates or individual churches to sign organ donation cards would meet with generally positive responses.”United Methodist
The United Methodist Church issued a policy statement regarding organ and tissue donation. In it, they state that, "The United Methodist Church recognizes the life-giving benefits of organ and tissue donation, and thereby encourages all Christians to become organ and tissue donors by signing and carrying cards or driver's licenses, attesting to their commitment of such organs upon their death, to those in need, as a part of their ministry to others in the name of Christ, who gave his life that we might have life in its fullness.” A 1992 resolution states, “Donation is to be encouraged, assuming appropriate safeguards against hastening death and determination of death by reliable criteria." The resolution further states, “Pastoral-care persons should be willing to explore these options as a normal part of conversation with patients and their families.”
"If children have the ability to ignore all odds and percentages, then maybe we can all learn from them. When you think about it, what other choice is there but to hope? We have two options, medically and emotionally: give up, or Fight Like Hell." Lance Armstrong
As we finish our first whole month of waiting on the transplant list (March 11 completes one month)..... I wanted to answer on the blog my most common asked question. "Does the heart need to come from a child?" The answer is simply, no. Gabriella can receive a heart from a larger toddler up to a small teenager. More important than the age of the heart is the size. Her new heart needs to be big enough to pump enough blood for her 43lb body, but small enough to fit into her little frame. Hearts are not dependent on age, race, gender or religion.
I thought it would be helpful to paste a little info about how UNOS matches organs here, just for educational purposes. It truly is a fascinating process... and not so much of a "list" as it is a database. The list itself is not generated until there is an actual heart available, and the list is specific to that heart. Please, read on!
Donor Matching SystemBE A DONOR!All patients accepted onto a transplant hospital's waiting list are registered with the UNOS Organ Center, where a centralized computer network links all organ procurement organizations (OPOs) and transplant centers. Staffed 24 hours a day throughout the year, the Organ Center assists with the matching, transporting, and sharing of organs throughout the U.S.
Transplant centers, tissue typing laboratories, and OPOs are involved in the organ sharing process. When donor organs are identified, the procuring organization typically accesses the UNOS computerized organ matching system, enters information about the donor organs, and runs the match program. At times, when requested or when there is a need to identify perfectly matched kidney donor/recipients, the matching process is handled by Organ Center personnel at UNOS headquarters in Richmond, Virginia.
For each organ that becomes available, the computer program generates a list of potential recipients ranked according to objective criteria (i.e. blood type, tissue type, size of the organ, medical urgency of the patient, time on the waiting list, and distance between donor and recipient). Each organ has its own specific criteria. Ethnicity, gender, religion, and financial status are not part of the computer matching system.
After printing the list of potential recipients, the procurement coordinator contacts the transplant surgeon caring for the top-ranked patient (i.e. patient whose organ characteristics best match the donor organ and whose time on the waiting list, urgency status, and distance from the donor organ adhere to allocation policy) to offer the organ. Depending on various factors, such as the donor's medical history and the current health of the potential recipient, the transplant surgeon determines if the organ is suitable for the patient. If the organ is turned down, the next listed individual's transplant center is contacted, and so on, until the organ is placed.
Once the organ is accepted for a potential recipient, transportation arrangements are made for the surgical teams to come to the donor hospital and surgery is scheduled. For heart, lung, or liver transplantation, the recipient of the organ is identified prior to the organ recovery and called into the hospital where the transplant will occur to prepare for the surgery.
The recovered organs are stored in a cold organ preservation solution and transported from the donor to the recipient hospital. For heart and lung recipients, it is best to transplant the organ within six hours of organ recovery. Livers can be preserved up to 24 hours after recovery. For kidneys and typically the pancreas, laboratory tests designed to measure the compatibility between the donor organ and recipient are performed. A surgeon will not accept the organ if these tests show that the patient's immune system will reject the organ. Therefore, the recipient is usually not identified until after these organs are recovered.
Source: http://optn.transplant.hrsa.gov/about/transplantation/matchingProcess.asp
Please read this lovely blog entry written for Gabriella! And be sure to leave her some love in the comments! YOU ALL are, afterall, the reason we can smile so big!
http://earlphotography.info/2010/03/09/gabriellas-sparkly-new-heart/
I just wanted to share that God's newest angel ascended to heaven this morning. Her body is renewed and she is no longer in pain. Layla Grace's story can be found at www.laylagrace.org and her family on twitter www.twitter.com/laylagrace
Today, her family tweets: @LaylaGrace: Layla went to play with the angels early this morning. Rest in peace precious Layla. 11/26/2007 - 3/9/2010
God bless you and your families.
I decided 2 things this weekend. 1- I made 2 of the most amazing and adorable kids on the planet and 2- Rachael Earl is a goddess with a camera.
My friend Andrea, Owens mom, entered our name into a photo session giveaway and we won it way back when! It took a while to get this session scheduled because everything for so long post-stroke was hectic, and then the holidays, and getting her listed... blah blah blah. Anyways, we finally got the session scheduled and had our pictures done this Saturday!!
CLICK HERE TO SEE OUR SESSION
I am, NO DOUBT ABOUT IT, going back to Rachael in the future for more family pictures. Her style, ability to capture personality, and laid back structure of the pictures is just absolutely perfect! And she is such a sweetheart to boot!
VISIT RACHAELS WEBSITE! AND BOOK A SESSION!
(Family, no worries. I will have prints to share with everyone in a few weeks! If anyone out there wants some pictures, please comment here or email me and I'll make it happen!)
I last posted the statistics for the waiting list on February 19... it looks like they update the data every 2 weeks! Here is the most current- and the statistics for kiddos Gabriella's age hardly budged.
(all information according to www.unos.org)
As of March 3, 2010 there are 3,130 people (adults and children) in the United States waiting for a heart.
(OPTN data from February 26, 2010)
Nationwide:
There are 86 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+.
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.
I posted Saturday about St. Joesph's hospital in Phoenix now being approved by UNOS to do heart transplants.
Yesterday, I made my calls. I called and left a message for our transplant coordinator (Sharon, for those of you who know the office) and also for the coordinator at St. Joesph's. I got a call in the early afternoon from St. Joseph's nurse, and she was extremely nice! I was able to give her a rundown of Gabriella's history, and she then told me about their team. Their individual credentials make for excellent people to build a transplant team! The doctor started at CHLA and did additional work at Stanford. The Cardiologist spent most of his career at Children's Memorial in Chicago. And the coordinator worked at CHLA, and worked closely with our Loma Linda team, and also at Mount Sinai on the east coast! She was very excited and even said if this went through, Gabriella would be the first transplant kiddo in Phoenix! We talked a bit about being listed at multiple transplant centers and left it with her calling my insurance coordinator to feel them out.....
A while later, Sharon called me back from our cardiology office. I really do love talking to her. She told me about how their offices met with the team at St Josephs the day before the press release came out, and they are a very well put together team! Our cardiology office has been dealing with transplant kids and sending them out for 20 years or so, so they know what it takes! The 2 teams spoke about the future, post transplant care and other suggestions. St Josephs seemed eager to take the suggestions and work quickly on getting them in place! Sharon said in a few months they should have all aspects of the process in line and she'd definitely feel good with us going there. But.... a few months or so. And I value their opinion highly... they haven't led us wrong yet!
Later that night, the St Josephs nurse called me back and said she talked to insurance. There was NO way they were going to approve Gabriella for St Josephs.... darned HMO. So... we are back to where we were. But I met a super awesome new nurse in the process and hope to get to see her, under POSITIVE circumstances, in the future!
Surprisingly, we are not upset. Sure, having a heart transplant in Phoenix would be ideal. It is 30 miles away, we wouldn't have to split up our family, Gabriella could have in-home school and therapy, we could have help from family. But God wants us in California for this, and there is a reason- that of which I do not question. And I did my work, and I tried it out as an option.
The best part of this whole story is it IS available! There are kids out there who will benefit from this center and families that will stay together. In a region of Arizona that has 10 to 20 kids per year who need a new heart, most of them can stay home to get that now! What a blessing, and long overdo for the Valley of the Sun!
If you read my blog in an RSS reader or through email, take a minute to stop in to the website! It got a spring-y facelift!
www.GabriellasHeart.com
I LOVE Twitter. Daily I do a search for the term 'heart transplant' to find other moms or interesting articles. I have found some great follows through this avenue!
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....... :)
Gabriella is a smart, smart cookie. She was always on her game when it came to speech. As anyone who has ever been on my blog before knows, that was all ripped from her September 25, 2009 when her stroke attacked the very spot in her brain that operate her speech.
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 r stick out her tongue! Grated, 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!
Just Friday an article was plastered all over local papers and new stations about the rise in RSV cases this week. It's that time of year, where RSV reeks havoc on babies and little ones and kids under 12 are restricted from the hospitals. They said something like there is a normal 1600 cases every year, and so far 1300 cases have been identified. It is obvious to me this year will be a huge outbreak of it... seeing as how 64% of that 1300 was in the last week!
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. :)
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