He has vascular stenosis, which is the narrowing of one of the tubes in his heart. We are following up with a cardiologist every four weeks to monitor it. If there is no progress or it get worse, he will need heart surgery. So that is TBD.
He has increased tone. This means he is very stiff. He cannot fully extend his legs at the knee or hip. He has been working with an occupational therapist and a physical therapist since the week he was born.
The biggest thing he is battling is his digestive system. He has GERD, which is severe acid reflux. He has low motility and weakened stomach muscles, so he fights to get formula down and once it reaches the stomach it is met with the GERD. He can't keep even the smallest amount of formula, medications, or even his own saliva, down in his tummy. Everything comes up. So after many trials (with the help of a dietician and gastroenterologist) of trying to find the correct formula/medication combination, Gibson was labeled as "Failure To Thrive". He wasn't gaining weight and he was miserable. He had an NJ tube put in, which is a feeding tube that goes into his small intestine, bypassing the stomach altogether. It was after that, that he started to gain weight! The light was seen at the end of the tunnel, until the blood showed up.
On 12/30/2020 at 4am, he started vomiting a brown/red color, and a lot of it. He was admitted yet again to the hospital. At 12 weeks old he weighs 7lbs. He has gone through so many tests, including upper GIs, swallow studies, several types of xrays, several types of blood tests and fecal tests. He has also had several IVs and IV solutions. And unfortunately he is waiting to have a scoping done which requires anesthesia. If they cannot find helpful information during the scoping, surgery will be brought to the table.
He is also waiting to see a geneticist. Every single specialist thinks there is an underlying issue. He has gotten clear results of the first couple rounds of genetic testing, so they're thinking it's something more rare causing all of the issues listed above.
He is being seen by a cardiologist, geneticist, neurologist, gastroenterologist, pediatrician, dietician, radiologist, speech therapist, physical therapist, occupational therapist and what seems to be a never ending rotation of all types of nurses. The entire team has been and continues to be amazing. True superheros!
Mom and Dad are in Austin, TX, due to Dad's traveling (move once a year) career. Covid has kept all family and friends from meeting sweet Gibson. If it could be all wrapped up into one word, it would be "exhausted". Mom, Dad and Gibson, have all been through so much in such a short amount of time. Gofundme never felt like a necessity or even something that seemed moral, to ask for monetary help. But, over 12 weeks of struggles has been taking it's toll mentally and physically.
Thank you so much for taking the time to read Gibsons story and for any help offered.
- Hannah Rowland
- Gladys Salcedo
- Amy Woodworth
- Simone Harper
- Jordyn Hurt
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