Dakota W.
Ohio
Birth Date - July 06, 2000
Main Diagnosis - Shone's Complex
THEME: MILITARY (TO INCLUDE: VEHICLES (TANKS, HELICOPTERS, AIRPLANES, ETC. and SEALS/EMBLEMS OF THE NAVY, ARMY, AIR FORCE, MARINES) NOTHING PATRIOTIC! Mature patterns only
Quilt Deadline: 4/1/15
Dakota's Story
Dakota is my 14 year old son who was born with Shone's Complex. This is a complex set of congenital heart defects that have required numerous operations and care though out his life to this point.
At age 9 months his Coarc was repaired. At age 2.5 he had a sub-aortic resection done. At age 5 he had a Ross Procedure done and at age 13 he received a melody valve to open up the valve he received during his Ross Procedure at age 5.
In July of 2014 Dakota was hospitalized due to severe anemia, rapid weight loss and vomiting. During his 9 day stay it was determined that he had an infection caused by a bacteria called Bartonella henselae. Normally this type of infection is not at all a problem but with Dakota it caused a host of rare symptoms including an enlarged liver, enlarged spleen, anemia involving iron, vitamin K, palettes, red blood cells and white blood cells. He had a bone marrow biopsy which came back clean. He is still being treated for the bacterial infection along with Endocarditis due to the donor heart valve he received when he was 5.
14 days after his initial released he was hospitilized again with anemia and he had contracted a rhinovirus and the Enterovirus D68. His kidneys were also only working at 30% and his red blood cells were still tanked. They got him stablized again and he was sent home after 4 days.
On September 24th he was hospitalized again for a repeat bone marrow biopsy and a kidney biopsy. He stayed 3 days and while his white blood count and his palettes have returned to normal his kidneys and red blood cells have not. At the end of this visit they extended all his antibiotics for two weeks because he is still showing a large amount of antibodies in his system that are still fighting the bacterial infection.
Latest Update:
The final tests were back from his bone marrow biopsy and the level of infection from the bartnella has not decreased since his last biopsy. While the antibiotics are managing his infection and he is feeling better the antibiotics are not getting rid of the infection. This means that the source of the infection is hiding somewhere in his body.
The most logical place for it to be hiding is in his heart. When Dakota was 5 he received a new conduit and pulmonary valve and they believe that is where the infection is hiding because the donor material is considered foreign tissue and that is what infections like to feed on. Because of the placement of the conduit they are unable to see it clearly on any of the tests they have done so he has to have open heart surgery to replace both the conduit and the valve. This area is located just under the sternum so he will not require heart lung bypass this time. We expect this to occur sometime in the next month depending on scheduling.
They are electing not to replace his leaky mitral valve because it is a much more complex surgery that will require heart lung bypass and he needs to be free of the infection first. They plan on doing a cath procedure to balloon the mitral to buy them some more time. The mitral valve is currently causing a lot of increased pressure and has about reached the end of its usefulness. This valve has leaked since birth and has been limping along for a while now.
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"Thank You"
Dakota wasn't feeling well when the quilt arrived, and he didn't want me to take his picture. But he loves the quilt very much. Thanks to everyone who made this possible for him.
