8
8

Helping Sofias Heart

$585 of $1 goal

Raised by 12 people in 34 months
Amanda Martinez  GREENSBORO, NC
Sofia was born with a very severe heart condition called tetralogy of Fallot With pulmonary atresia And mapcas. In other words Sofia was born without her pulmonary arteries and valve. She wasn't diagnosed until after birth when she was admitted to 3 different hospitals in one day at 7 weeks old. At first they thought she had pneumonia, then the second hospital said it was bronchitis, and the third hospital finally diagnosed her with her heart defect along with a chromosome deletion syndrome called 22q11.2 deletion syndrome or aka digeorge syndrome . Once admitted to the last hospital (brenners children's hospital) sofia had many tests and procedures done to determine how severe her case was. After 41 days in the NICU, a gtube and Nissen placement and caths sofia was released to go home. She was suppose to have her first surgery at 6 months of age. After speaking with the surgical team at Brenners we were not convinced it was the best place to have it done so we researched Boston Childrens. Finally, after months of trying to get approval from insurance and denial from all the hospitals in NC to do Sofias surgery, we were able to bring her to Boston Children's Hospital.  June 2014 was when Sofia finally had her first heart surgery,  and June 2014 was her  second, and third. We finally left BCH in August of 2014 after a long recovery and many procedures to wait for 6 months before her next surgery. We returned  to BCH January 2015 for heart surgery #4. She had her surgery January 29 and had many bumps in the road afterwards.  Due to Sofia being intubated multiple times in the past 2 years she has developed chronic lung disease. She has also developed pulmonary hypertension due to the pressures in her right aide of her heart still being on the high side. During our stay here Sofia developed a blood infection from her picc line.   We are still waiting to get some test done and wean her from her medications, and finish her antibiotics to cover the blood infection. We still have to have an MRI to check if there is any damage from being on sedation for so long and also from being on bypass.  We are looking at being here another month and then we will be returning every few months for catherizations and any other procedures she may need. If you are able to help by donating even a dollar we would really appreciate it. Thank you in advance everyone.
+ Read More
Update 8
Posted by Amanda Arroyo
12 months ago
   Share
We arrived in Boston yesterday morning and got checked into our new home for a little while. Sofia has been a little moody just because she doesn't understand why we have to stay in our room and boredom. We did get some tickets to the Children's museum from the house we are staying at. We are hoping to take her tomorrow before every thing starts Tuesday. Thank you everyone for all your prayers, thoughts, juju, and donations. We ask that you please continue to share Sofia's page and donate if you can. Being out of work and having not only expenses here but at home as well it would really help. Again thank you everybody.
+ Read More
Update 7
Posted by Amanda Arroyo
12 months ago
   Share
It's that time again. In just 2 short days we will be heading back to Boston for another procedure. She will be needing another heart catherization and Hopefukky nothing else. Although that could always change depending on what they find. If you could please continue to help by either donating or sharing Sofia's GoFundMe. Every little penny helps. Thank you everyone.
+ Read More
Update 6
Posted by Amanda Arroyo
13 months ago
   Share
Jan 21st Sofia finally had her dental surgery. Meaning we have nothing stopping us from going to Boston in March. Yayyy.
Sofia also had her sleep study done and results show she has some blockage at night but nothing to concerning. This is why her o2 drops but they don't feel like she needs to be on a cpap machine at night.
Cardiology was saying that we may have to reevaluate what we will be doing during her cath. Everytime sofi gets upset, crys, or even gets tired she turns blue, even with her heart being fully "repaired". Her pressures in her heart are increasing and the function of her right vertical is decreasing. We are not sure whether we need to remove the patch that we use to close her VSD, close her VSD completely, or leave things as they are. Her 2 cardiologists from both Duke and Boston will talk about it and try to make a decision before we go.
We ask that everyone just continue to keep Sofi in your thoughts that this will be a simple cath procedure and we don't have to stay longer than a few days.
Sofia at her cardiologist office
+ Read More
Update 5
Posted by Amanda Arroyo
16 months ago
   Share
Today Sofia had an early visit to the cardiologist due to her oxygen going down and her just not being completely herself.
We did an echo and found that the pressure in the right side of her heart are increasing and the function of the right side of her heart is decreasing. All signs point to her pulmonary arteries narrowing.
What sucks about this is we can't have her cath done until she gets her teeth done because if they were to place shunts or any other device while having bad teeth there is an even higher chance of her developing an infection. We are looking at having her teeth done at UNC because Duke no longer has a dentistry service. After her teeth are done we have to wait 6 weeks before we can do her cath. Hopefully we get this done soon so we can get to Boston and have her cath done before things become worse. Over all though she is doing great. Now just to keep her healthy during the h*ll, I mean cold season.
+ Read More
Read a Previous Update
Be the first to leave a comment on this campaign.

$585 of $1 goal

Raised by 12 people in 34 months
Created May 15, 2014
LC
$30
Leah Craven
12 months ago

prayers for you

LZ
$60
leo zavala
12 months ago

Give a blessing to someone in need people..as the saying goes..ahora ellos, mañana nosotros

PL
$20
Perla Loera
12 months ago
ML
$20
Mayra Loera
12 months ago
B
$100
Brooke
34 months ago
TT
$25
Tammy Thompson
34 months ago

Praying for Sophia and her family God is the almighty physician he can heal baby Sophia but I pray when she goes in for surgery that God will lead the physicians hand will keep you all in my prayers daily keep faith and don't loose hope just trust in God always and put him first in all things God bless much love from our family to yours

$50
Anonymous
34 months ago
$10
Anonymous
34 months ago(Offline Donation)
$50
Anonymous
34 months ago(Offline Donation)
$100
Anonymous
34 months ago(Offline Donation)
Be the first to leave a comment on this campaign.
or
Or, use your email…
Use My Email Address
By continuing, you agree with the GoFundMe
terms and privacy policy
There's an issue with this Campaign Organizer's account. Our team has contacted them with the solution! Please ask them to sign in to GoFundMe and check their account. Return to Campaign

Are you ready for the next step?
Even a $5 donation can help!
Donate Now

Pledge now, give later.

Pledge Now
You won't be charged for this pledge. We'll let Amanda know that you have pledged support.
Thank you!
Connect on Facebook to keep track of how many donations your share brings.
We will never post on Facebook without your permission.