Saturday, July 25, 2015

For over 9 months we have been rejoicing in the fact that Kadyn has been healthy enough to stay out of the hospital. Take that CF! We said... We are winning right now! We said... We've got this! We said... Her luck is changing. We said. All the while CF was quietly and horribly attacking parts of our baby girl from the inside. I talked with Kadyn's doctor yesterday. Kadyn's test results from last week showed severe reflux and slow gastric emptying. It is believed that Kadyn has been silently aspirating into her lungs. This is a very scary thing to hear and once again reminds us that CF is an invisible disease... as hard as she fights, CF is always fighting against her. We do know aspirating can cause lung damage. We don't know how long this has been going on or how much damage has been done. However, this does explain the constant crackles in her lung, on and off cough without other symptoms, the ups and downs of her lung function test and the evidence of rather consistent inflamed airways. The plan is for Kadyn to be admitted tomorrow evening for IV antibiotics. Her doctor and surgeon want to make sure her lungs are as stable as possible before surgery. She will do a PFT once admitted and again 7 days into her course of antibiotics. If the test shows stability or improvement she will have a rather long surgery with multiple procedures: Nissen fundoplication with pyloroplasty and g-tube placement. The Nissen fundo procedure is to strengthen the valve between her esophagus and stomach. Pyloroplasty procedure to widen the opening in the lower part of the stomach so stomach contents can empty into the small intestine. G-tube placement is the feeding tube insertion so we may begin continuous feeds throughout the night. Ultimately, resulting in weight gain. I would be lying if I said I wasn't mad, hurt, in disbelief, sad. Every single uncomfortable feeling I've ever felt seems to be running through me right now. CF has truly invaded every single part of Kadyn's body. I HATE IT! In these vulnerable times my faith may seem shaky...these are the times I have to repeat over and over to trust in Him. God's plan not ours. Sometimes I need to remind myself of this 100x a day. This is one of those times. I do NOT understand any of this and if truly trusting in Him I know I don't have to understand. We have not told Kadyn and Koy yet. We are going to talk about it this morning then have as much fun as possible until we leave tomorrow. As always your prayers/positive thoughts/love/support are felt and sincerely appreciated. Be joyful in hope, patient in affliction, faithful in prayer. —Romans 12:12

For over 9 months we have been rejoicing in the fact that Kadyn has been healthy enough to stay out of the hospital. Take that CF! We said... We are winning right now! We said... We've got this! We said... Her luck is changing. We said. All the while CF was quietly and horribly attacking parts of our baby girl from the inside. I talked with Kadyn's doctor yesterday. Kadyn's test results from last week showed severe reflux and slow gastric emptying. It is believed that Kadyn has been silently aspirating into her lungs. This is a very scary thing to hear and once again reminds us that CF is an invisible disease... as hard as she fights, CF is always fighting against her. We do know aspirating can cause lung damage. We don't know how long this has been going on or how much damage has been done. However, this does explain the constant crackles in her lung, on and off cough without other symptoms, the ups and downs of her lung function test and the evidence of rather consistent inflamed airways. The plan is for Kadyn to be admitted tomorrow evening for IV antibiotics. Her doctor and surgeon want to make sure her lungs are as stable as possible before surgery. She will do a PFT once admitted and again 7 days into her course of antibiotics. If the test shows stability or improvement she will have a rather long surgery with multiple procedures: Nissen fundoplication with pyloroplasty and g-tube placement. The Nissen fundo procedure is to strengthen the valve between her esophagus and stomach. Pyloroplasty procedure to widen the opening in the lower part of the stomach so stomach contents can empty into the small intestine. G-tube placement is the feeding tube insertion so we may begin continuous feeds throughout the night. Ultimately, resulting in weight gain. I would be lying if I said I wasn't mad, hurt, in disbelief, sad. Every single uncomfortable feeling I've ever felt seems to be running through me right now. CF has truly invaded every single part of Kadyn's body. I HATE IT! In these vulnerable times my faith may seem shaky...these are the times I have to repeat over and over to trust in Him. God's plan not ours. Sometimes I need to remind myself of this 100x a day. This is one of those times. I do NOT understand any of this and if truly trusting in Him I know I don't have to understand. We have not told Kadyn and Koy yet. We are going to talk about it this morning then have as much fun as possible until we leave tomorrow. As always your prayers/positive thoughts/love/support are felt and sincerely appreciated. Be joyful in hope, patient in affliction, faithful in prayer. —Romans 12:12
by Kadyn's Krew

July 25, 2015 at 08:44AM
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