Surgery Scheduled
Posted May 26, 2010 12:30am
The weekend came and went quickly. Kaden had and continues to have a difficult time regulating his heart rate. He isn't eating much and starting to lose weight quickly. We will meet with one surgeon (Dr.Partrick) this Friday at 12:30 and the other surgeon (Sr.Streubel) on June 7th. Brian and I asked for a second opinion about our little man and were informed yesterday that 5 docs have reviewed his case. Again, I will post what the two major problems are: (please note...this is only so hard because these findings have nothing to do with Kaden's current or future health issues that we were intending to address. Both findings are extremely rare and unrelated to his current problems for the most part. It was by mere coincidence that we found out this new info, but we are grateful as undiagnosed hernias of this type can be fatal.)
Problem 1 again- Hiatal Henia aka paraesphogeal hernia...The top part of Kaden's stomach slipped through a tear in his diaphragm and is collapsing his left lung.
Problem 2 again- Laryngotracheal Cleft aka... a hole in his throat (larynx) that doesn't belong there allowing food to slip into his lungs.
Problem 3- Related to his symptoms, lesions in both lungs
Problem 4- Scar tissue in his airways indicating he's aspirating on his own saliva.
Problem 5- Under anesthesia last week, Kaden's system went haywire indicating that his ability to self regulate and compensate were taken away from him. By taking that control from him it would be similar to taking a paralyzed persons wheelchair away. I mean no offense, but it's the best way to explain how phenomenal Kaden is in his ability to self regulate.
Both of these surgeries are very complicated. The docs have already had a case conference and are all on the same page. Kaden will undergo two major surgeries each taking approximately 4-6 hours in length. They are very concerned about him going under anesthesia at all much less for several hours. He will stay on a ventilator heavily sedated in Pediatric Intensive Care for several days following each surgery. Brian is donating his own blood for Kaden's surgeries. We've been told that problem 1 is a much more complex surgery, but easier recovery. Problem 2 is an easier surgery but much more difficult recovery. It is highly probable that Kaden will come home on a ventilator with a tracheostomy (breathing tube) to allow his airway to heal. We are working diligently on signing with him again and taking many pictures that he can point to in order to express his needs without frustration since he won't be able to talk. It is crucial that he not get too upset after surgery or he could tear open the repair site. I think Brian and I both are out of the denial phase and more into the planning phase of this crappy situation. Surgery will take place June 24th in order for all of the team to be involved and present. Dr. Partrick is out of town from the 29th through the 22nd. He will be there along with an assitant surgeon, a pulmonologist, a cardiologist, a neurologist and the anesthesiologist. We are trying to coordinate finances, a house sitter, a dog watcher, and housing while we're up there. I guess that's all for now folks. I only re-posted this because several people said they didn't get to read the last post that I already had deleted. Thank you for prayers and support. Many blessings to you all.
Julie
Problem 1 again- Hiatal Henia aka paraesphogeal hernia...The top part of Kaden's stomach slipped through a tear in his diaphragm and is collapsing his left lung.
Problem 2 again- Laryngotracheal Cleft aka... a hole in his throat (larynx) that doesn't belong there allowing food to slip into his lungs.
Problem 3- Related to his symptoms, lesions in both lungs
Problem 4- Scar tissue in his airways indicating he's aspirating on his own saliva.
Problem 5- Under anesthesia last week, Kaden's system went haywire indicating that his ability to self regulate and compensate were taken away from him. By taking that control from him it would be similar to taking a paralyzed persons wheelchair away. I mean no offense, but it's the best way to explain how phenomenal Kaden is in his ability to self regulate.
Both of these surgeries are very complicated. The docs have already had a case conference and are all on the same page. Kaden will undergo two major surgeries each taking approximately 4-6 hours in length. They are very concerned about him going under anesthesia at all much less for several hours. He will stay on a ventilator heavily sedated in Pediatric Intensive Care for several days following each surgery. Brian is donating his own blood for Kaden's surgeries. We've been told that problem 1 is a much more complex surgery, but easier recovery. Problem 2 is an easier surgery but much more difficult recovery. It is highly probable that Kaden will come home on a ventilator with a tracheostomy (breathing tube) to allow his airway to heal. We are working diligently on signing with him again and taking many pictures that he can point to in order to express his needs without frustration since he won't be able to talk. It is crucial that he not get too upset after surgery or he could tear open the repair site. I think Brian and I both are out of the denial phase and more into the planning phase of this crappy situation. Surgery will take place June 24th in order for all of the team to be involved and present. Dr. Partrick is out of town from the 29th through the 22nd. He will be there along with an assitant surgeon, a pulmonologist, a cardiologist, a neurologist and the anesthesiologist. We are trying to coordinate finances, a house sitter, a dog watcher, and housing while we're up there. I guess that's all for now folks. I only re-posted this because several people said they didn't get to read the last post that I already had deleted. Thank you for prayers and support. Many blessings to you all.
Julie
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