Baby Giovanis Heart Journey
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Baby Giovani Mateo was born on January 16 2018 weighing 6lbs 12oz, the most perfect baby his parents had ever seen .
Everything was great and Baby Giovani went home the next day . He went to his 3 day checkup & two week checkup and everything was said to be perfectly fine . At his 1 month wellness checkup his Pediatrician Dr. Rodrigo Argenal heard a Heart murmur on baby Giovani and that along with his concerns that Baby Giovani hadn’t gained enough weight prompted Dr Argenal to send him to see a Cardiologist.
One week later on March 1, 2018 Giovani and his parents went to see Dr.Khan where he received an echocardiogram to study the anatomy of Giovanis heart. Unfortunately Giovani turned out to have not one but three different Heart diseases. Giovani was diagnosed with Coarctation of the Aorta, Aortic Stenosis , and Mitral Valve Stenosis , all these conditions together are called Shones Complex meaning he has more than one defect . Dr. Khan explained to Giovani’s parents that there was no treatment for his condition, that the only option was surgery , and it could only be done at the University Hospital of San Antonio TX , 4 hours away from home , and that they needed to leave immediately. Giovani’s parents did not hesitate to pack a few things and leave right away . Upon arriving to San Antonio the staff did another echocardiogram and other tests on Giovani and confirmed his diagnosis. After discussing among themselves the doctors at the University Hospital decided that they would perform surgery on Giovani to repair his Coarctation, narrowing of the aorta, and they would do this the following day. On March 2, 2018 Giovani underwent emergency heart surgery to repair his narrowed aorta, and the procedure went well .
He stayed in the hospital for 13 days total and went home happy and smiling .
On April 16, 2018 approximately one month after returning home to the RGV Giovani had a follow up appointment with Dr. Khan where another echocardiogram was done to check the conditions of his heart once again , and there was bad news . One of his conditions, his Mitral Valve Stenosis, had gotten worse instead of better and it was causing high pressure in his lungs , 5x a normal pressure , that was making it difficult for Giovani to breathe . Again Dr. Khan prompted Giovani and his parents to return to the University Hospital of San Antonio for another emergency procedure, but this time he did not want Giovani to be taken for the 4 hour car ride and ordered for Giovani and his mother to be taken by plane to San Antonio as soon as possible. 
On April 17, 2018 the Doctors at the University Hospital decided that the best procedure for Giovani was the Norwood Procedure that would basically make his heart a single chamber heart that would reroute his blood flow to reach his lungs and other organs . Giovani was scheduled to undergo surgery on Friday April 20, 2018 to try to save his heart by Dr Calhoon and his associates at the University Hospital at 3 months old. Giovani and his parents are expected to stay at the University Hospital a minimum of 1-2 Months and will require at least 2 more procedures, one by 1 year of age , and another by the age of 2 years old. Anything would help us for our transition home with diapers , crib, supplies , and expenses for his care ! Thank you for your support and God bless you all
**UPDATE 4/20/2018 POST SURGERY**
Giovani is doing well , the surgery went as planned . He is still having difficult breathing on his own and his chest incision has been left open to relieve swelling and will be closed up in about 2-3 Days . He will be kept in a ventilator for breathing support until he is ready to come off .
** UPDATE 5/19/18 **
Giovani has now gotten his breathing tube removed and it has been replaced with a cannula. He continues to do okay .
**UPDATE 6/4/2018**
Giovanis Aorta has begun to narrow again , he will undergo a heart catheterization to stretch out his aorta with a Balloon Angioplasty .
**UPDATE 7/5/2018**
Due to feeding issues , reflux issues , and the renarrowing of his Aorta , Giovani will be undergoing surgery today to place a Gastrostomy feeding tube today and a heart surgery this Saturday July 7 to reopen his aorta , replace his vein graft , and suture his Tricuspid valve that leaks severely .
**UPDATE 7/5/18 POST G TUBE SURGERY**
Everything went well and Giovani is now resting for his heart surgery in two days .
**UPDATE 7/7/2018 POST OP FROM HEART SURGERY**
Giovani did very well in the OR . Both his Surgeon & Cardiologist from the University Hospital are pleased with the results and are optimistic that he will begin to do better . He will be left sedated , and again with an open chest wound and breathing tube until he is ready .
**UPDATE 7/9/2018**
Dr. Calhoon was able to close Giovanis chest incision and is pleased with Giovanis heart function so far .
**UPDATE JULY 11, 2018**
Giovani has gotten his chest drain removed at 7 AM. He has also gotten his breathing tube removed at 10 AM. His breathing & blood oxygen will continue to be monitored for the rest of the day to determine whether he can remain off the breathing tube . He has been switched to a nasal cannula .
**UPDATE AUGUST 9, 2018**
Giovani was discharged from University Hospital today and is on his way home with his parents & grandparents
**UPDATE AUGUST 29, 2018**
Giovani and his family have gone back to San Antonio for heart follow up and everything is okay at this point
**UPDATE OCTOBER 6, 2018**
Giovani has been taken via Air Med to University Hospital for hypoxia . He will receive a heart cath on Monday October 8.
**UPDATE OCTOBER 15,2018**
Giovani received his Bi Directional Glenn surgery today and is doing well .
**UPDATE NOVEMBER 1,2018**
Giovani has caught the RhinoEntero Virus and is requiring extra respiratory support .
**UPDATE NOVEMBER 9,2018**
Giovani has been unable to hold his oxygen saturation’s and has been placed on an ECMO circuit **
**UPDATE NOVEMBER 17,2018**
Giovani is being taken to the OR to have the ECMO circuit removed and possible surgery.
Giovani was taken of ECMO and had his Glenn undone .
**UPDATE NOVEMBER 21,2018**
Giovani got a tracheostomy placed today
**UPDATE DECEMBER 16,2018**
Giovani celebrated his 11 month birthday today !!
Giovani’s first Christmas 12/25/18
Giovani’s First Birthday 1/16/19
Giovani’s first Valentines Day ❤️ 2/14/19
Giovani’s First Hair Cut ♂️
**UPDATE MARCH 7,2019**
Giovani is doing well and is trialing a home vent
Giovani went outside for the 1st Time in over 5 months
Everything was great and Baby Giovani went home the next day . He went to his 3 day checkup & two week checkup and everything was said to be perfectly fine . At his 1 month wellness checkup his Pediatrician Dr. Rodrigo Argenal heard a Heart murmur on baby Giovani and that along with his concerns that Baby Giovani hadn’t gained enough weight prompted Dr Argenal to send him to see a Cardiologist.
One week later on March 1, 2018 Giovani and his parents went to see Dr.Khan where he received an echocardiogram to study the anatomy of Giovanis heart. Unfortunately Giovani turned out to have not one but three different Heart diseases. Giovani was diagnosed with Coarctation of the Aorta, Aortic Stenosis , and Mitral Valve Stenosis , all these conditions together are called Shones Complex meaning he has more than one defect . Dr. Khan explained to Giovani’s parents that there was no treatment for his condition, that the only option was surgery , and it could only be done at the University Hospital of San Antonio TX , 4 hours away from home , and that they needed to leave immediately. Giovani’s parents did not hesitate to pack a few things and leave right away . Upon arriving to San Antonio the staff did another echocardiogram and other tests on Giovani and confirmed his diagnosis. After discussing among themselves the doctors at the University Hospital decided that they would perform surgery on Giovani to repair his Coarctation, narrowing of the aorta, and they would do this the following day. On March 2, 2018 Giovani underwent emergency heart surgery to repair his narrowed aorta, and the procedure went well .
He stayed in the hospital for 13 days total and went home happy and smiling .
On April 16, 2018 approximately one month after returning home to the RGV Giovani had a follow up appointment with Dr. Khan where another echocardiogram was done to check the conditions of his heart once again , and there was bad news . One of his conditions, his Mitral Valve Stenosis, had gotten worse instead of better and it was causing high pressure in his lungs , 5x a normal pressure , that was making it difficult for Giovani to breathe . Again Dr. Khan prompted Giovani and his parents to return to the University Hospital of San Antonio for another emergency procedure, but this time he did not want Giovani to be taken for the 4 hour car ride and ordered for Giovani and his mother to be taken by plane to San Antonio as soon as possible. On April 17, 2018 the Doctors at the University Hospital decided that the best procedure for Giovani was the Norwood Procedure that would basically make his heart a single chamber heart that would reroute his blood flow to reach his lungs and other organs . Giovani was scheduled to undergo surgery on Friday April 20, 2018 to try to save his heart by Dr Calhoon and his associates at the University Hospital at 3 months old. Giovani and his parents are expected to stay at the University Hospital a minimum of 1-2 Months and will require at least 2 more procedures, one by 1 year of age , and another by the age of 2 years old. Anything would help us for our transition home with diapers , crib, supplies , and expenses for his care ! Thank you for your support and God bless you all
**UPDATE 4/20/2018 POST SURGERY**
Giovani is doing well , the surgery went as planned . He is still having difficult breathing on his own and his chest incision has been left open to relieve swelling and will be closed up in about 2-3 Days . He will be kept in a ventilator for breathing support until he is ready to come off .
** UPDATE 5/19/18 **
Giovani has now gotten his breathing tube removed and it has been replaced with a cannula. He continues to do okay .
**UPDATE 6/4/2018**
Giovanis Aorta has begun to narrow again , he will undergo a heart catheterization to stretch out his aorta with a Balloon Angioplasty .
**UPDATE 7/5/2018**
Due to feeding issues , reflux issues , and the renarrowing of his Aorta , Giovani will be undergoing surgery today to place a Gastrostomy feeding tube today and a heart surgery this Saturday July 7 to reopen his aorta , replace his vein graft , and suture his Tricuspid valve that leaks severely .
**UPDATE 7/5/18 POST G TUBE SURGERY**
Everything went well and Giovani is now resting for his heart surgery in two days .
**UPDATE 7/7/2018 POST OP FROM HEART SURGERY**
Giovani did very well in the OR . Both his Surgeon & Cardiologist from the University Hospital are pleased with the results and are optimistic that he will begin to do better . He will be left sedated , and again with an open chest wound and breathing tube until he is ready .
**UPDATE 7/9/2018**
Dr. Calhoon was able to close Giovanis chest incision and is pleased with Giovanis heart function so far .
**UPDATE JULY 11, 2018**
Giovani has gotten his chest drain removed at 7 AM. He has also gotten his breathing tube removed at 10 AM. His breathing & blood oxygen will continue to be monitored for the rest of the day to determine whether he can remain off the breathing tube . He has been switched to a nasal cannula .
**UPDATE AUGUST 9, 2018**
Giovani was discharged from University Hospital today and is on his way home with his parents & grandparents
**UPDATE AUGUST 29, 2018**
Giovani and his family have gone back to San Antonio for heart follow up and everything is okay at this point
**UPDATE OCTOBER 6, 2018**
Giovani has been taken via Air Med to University Hospital for hypoxia . He will receive a heart cath on Monday October 8.
**UPDATE OCTOBER 15,2018**
Giovani received his Bi Directional Glenn surgery today and is doing well .
**UPDATE NOVEMBER 1,2018**
Giovani has caught the RhinoEntero Virus and is requiring extra respiratory support .
**UPDATE NOVEMBER 9,2018**
Giovani has been unable to hold his oxygen saturation’s and has been placed on an ECMO circuit **
**UPDATE NOVEMBER 17,2018**
Giovani is being taken to the OR to have the ECMO circuit removed and possible surgery.
Giovani was taken of ECMO and had his Glenn undone .
**UPDATE NOVEMBER 21,2018**
Giovani got a tracheostomy placed today
**UPDATE DECEMBER 16,2018**
Giovani celebrated his 11 month birthday today !!
Giovani’s first Christmas 12/25/18
Giovani’s First Birthday 1/16/19
Giovani’s first Valentines Day ❤️ 2/14/19
Giovani’s First Hair Cut ♂️
**UPDATE MARCH 7,2019**
Giovani is doing well and is trialing a home vent
Giovani went outside for the 1st Time in over 5 months
Organizer
Stephanie Trevino
Organizer
San Antonio, TX