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Timothy's reconstructive airway surgery

$9,823 of $20,000 goal

Raised by 214 people in 4 months
Created February 23, 2019

5/18


Have you ever been so overwhelmed that you cant stand it? Thats where i am. Panic attacks daily thinking about everything that is about to happen. I am terrified for my baby. Obviously, the reality is, this procedure is very complicated and very risky, but its absolutely medically necessary. I wish i could fix everything thats wrong with him. Severe tracheal stenosis, left pulmonary agenesis, dysphagia, asthma, his heart is in his armpit, he has hydronephrosis, and right ventricular dilation. Ugh. I try to stay positive, but there are times (like now) that everything hits me at once that it feels like my head is going to explode. 

We have pre-authorization to be seen in Cincinnati, just waiting on all the paperwork and a phone call that it's on. 
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Ok, we now have a plan for things that must be done the week before Timothys surgery! No for sure date, but within a couple months!

PLAN:

To be completed before the endoscopies in the operating room:

Anesthesia Consult – Anesthesia’s initial evaluation to ensure Timothy is safe to be sedated in our operating room at CCHMC.

Cardiology Consult – Evaluation by the Cardiology team for Timothy's initial visit to CCHMC.

Shared Clinic - Pulmonary Clinic visit with one of our Aerodigestive Pulmonologist. (Dr. Wood, Dr. Torres-Silva, Dr. Benscoter or Dr. Hysinger) and one of our Aerodigestive Gastroenterologist (Dr. Putnam or Dr. Rick).

Pulmonary Function Testing - Assessment to measure how well the lungs are working. This will require Timothy to take deep breaths in, hold that air, and blow it out forcefully to gauge how the lungs are expanding and contracting (when inhaling and exhaling) and measures the efficiency of the exchange of oxygen and carbon dioxide between the blood and the air within the lungs.

Cardiothoracic Surgery Team Consult - Clinic visit with the cardiothoracic surgeons at CCHMC.



To be completed in the operating room, with sedation:

MLB- ENT’s look at Timothy’s upper airway.

Flex Bronchoscopy – Pulmonary teams look at Timothy’s lower airways.

EGD– Gastroenterology's look at Timothy's stomach, esophagus and first part of his small intestine.

Impedance probe – The NG-tube that measures Timothy’s refluxed fluids for how acidic they are including how far up the travel in his esophagus. This will require Timothy to stay overnight for recording of pH probe information.



These procedures may be completed before or after Timothy's endoscopies on Wednesday

FEES (Fiberoptic endoscopic evaluation of swallowing) - Flexible scope placed in Timothy’s nose to look at his airway protection and vocal cord movement while he is awake.


Oh and on top of all of everything, his spine is badly curved.... That will have to be addressed.
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5/18


Have you ever been so overwhelmed that you cant stand it? Thats where i am. Panic attacks daily thinking about everything that is about to happen. I am terrified for my baby. Obviously, the reality is, this procedure is very complicated and very risky, but its absolutely medically necessary. I wish i could fix everything thats wrong with him. Severe tracheal stenosis, left pulmonary agenesis, dysphagia, asthma, his heart is in his armpit, he has hydronephrosis, and right ventricular dilation. Ugh. I try to stay positive, but there are times (like now) that everything hits me at once that it feels like my head is going to explode. 

We have pre-authorization to be seen in Cincinnati, just waiting on all the paperwork and a phone call that it's on. 
+ Read More
So far so good on Timothys tests. He did so good getting cathed! He also did well with the swallow study! They also did confirm that the procedure will not be performed in this state. Waiting on a phone call to determine where his procedure will take place...
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So his right kidney is collecting urine in the middle of it. When he was hospitalized in february they thought it may have been from all the IV fluids, but its pretty much the same today. Its caused by one of 3 things. Either the valve at the end of the ureter isnt working correctly causing moderate/severe reflux of the urine ending it back to the kidney. It could be a partial blockage or kink in the ureter. It could be thats just the way he is. More tests mext week after the important appointments. Probably another surgery to correct it, but its a common surgery and pretty minor..
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$9,823 of $20,000 goal

Raised by 214 people in 4 months
Created February 23, 2019
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CS
$200
Crista Shabazz
17 days ago
$20
Jennifer Colbert
18 days ago
KS
$100
Kitty Schild
20 days ago
$200
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25 days ago
$100
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1 month ago
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