Gabe's lungs are strong enough for not needing the supplemental oxygen during the day and he is enjoying the freedom away off of the oxygen tubing.
Saturday, August 28, 2010
Friday, April 30, 2010
Appointment Snafu. Again...
We were discharged from the NICU followup clinic a couple of weeks ago. Gabe was getting too big (pediatric) and he also was backsliding on his oxygen requriement. They set us up with a Pulmonologist specialist to follow him and get him off of his oxygen dependency. It was sad to leave the doctors and nurses that we have trusted with Gabe's care since he was less that 2 pounds. Now Gabe is 9 times larger weighing in over 18 Pounds. He still is tethered to the oxygen tank and has not been able to eat enough calories on his own to get the feeding tube yanked out for good. However, he has been pulling out the feeding tube on his own more and more. We are ready to have all the tubes off of his face. We have scheduled the feeding tube surgery for May 13th. They will be removing it from his nose and installing it directly thru his stomach.
Today we had a an appointment with the CT machine at 8 AM (pictured below). The Pulmonologist wanted to get a better picture of his left lung to aid in treating his poor respiratory status. Unfortunately for us, their was no coordination done within the hospital to schedule the required anesthesiologist and the scan had to be canceled. Infants are required to be sedated so they don't wiggle around and ruin the picture. Gabe promised not to wiggle, but the staff didn't trust him. They said they didn't want to expose him too multiple scans and the radiation if the picture didn't turn out. We are planning on having the scan rescheduled to the date of his Gtube proceedure, since he will need to be sedated for that too.
Today we had a an appointment with the CT machine at 8 AM (pictured below). The Pulmonologist wanted to get a better picture of his left lung to aid in treating his poor respiratory status. Unfortunately for us, their was no coordination done within the hospital to schedule the required anesthesiologist and the scan had to be canceled. Infants are required to be sedated so they don't wiggle around and ruin the picture. Gabe promised not to wiggle, but the staff didn't trust him. They said they didn't want to expose him too multiple scans and the radiation if the picture didn't turn out. We are planning on having the scan rescheduled to the date of his Gtube proceedure, since he will need to be sedated for that too.
Wednesday, February 17, 2010
Answers
It has been so long since we've posted anything, and am not sure if anyone still checks in. If so, we recently got some answers about Gabe's eating.
He had a swallow evaluation done where he drinks barium and they take xrays to see what he is doing with the food and if he swallows properly. We found out that he has a severly delayed swallow which leaves his trachea wide open to accidently breathe in food. He could control the formula better when it was a necture consistency and a cold temperature woke up his mouth so he would eat a tad better. The reason he has a delayed swallow is because the nerves that trigger the swallow were either damaged from the respirator or burned from his acid reflux. These nerves are not things that will heal. As Gabe gets older, he'll learn to adapt to this condition. What we learned may not keep him from a G-tube (feeding tube going through the abdomen into stomach), but at least we have some understanding about the "whys."
He was recommended for a G-tube recently. We still need to have a consult with our Gastroenterologist about this. They are recommending a surgery for the reflux where they wrap part of the stomach around the place the esophagus meets the stomach to reduce/elimnate the reflux. Our concern with the surgery is we have heard from many sources (doctors included) that there frequently are very serious side effects and complications as a result from the surgery. I have been having trouble sleeping thinking about this and our options, if we really have any other options. We should know a lot more after our consult the beginning of March.
Gabe also has another surgery that will be performed after he gets off oxygen. We are assuming another 2 months on the O2.
He is gradually getting weaned off of medications, which is so exciting to see some progress. He is only on 2 precriptions now!
Gabe is definitely growing and developing in other areas. This past week he has discovered his voice and new noises he can make. At first it was cute, but that's wearing off ;)
We have been very blessed so far during the cold and flu season that he hasn't been sick. He has enough things on his plate, that he really doesn't need that to deal with also.
Thank you for checking faithfully. We are blessed to have people like you praying for our little man.
He had a swallow evaluation done where he drinks barium and they take xrays to see what he is doing with the food and if he swallows properly. We found out that he has a severly delayed swallow which leaves his trachea wide open to accidently breathe in food. He could control the formula better when it was a necture consistency and a cold temperature woke up his mouth so he would eat a tad better. The reason he has a delayed swallow is because the nerves that trigger the swallow were either damaged from the respirator or burned from his acid reflux. These nerves are not things that will heal. As Gabe gets older, he'll learn to adapt to this condition. What we learned may not keep him from a G-tube (feeding tube going through the abdomen into stomach), but at least we have some understanding about the "whys."
He was recommended for a G-tube recently. We still need to have a consult with our Gastroenterologist about this. They are recommending a surgery for the reflux where they wrap part of the stomach around the place the esophagus meets the stomach to reduce/elimnate the reflux. Our concern with the surgery is we have heard from many sources (doctors included) that there frequently are very serious side effects and complications as a result from the surgery. I have been having trouble sleeping thinking about this and our options, if we really have any other options. We should know a lot more after our consult the beginning of March.
Gabe also has another surgery that will be performed after he gets off oxygen. We are assuming another 2 months on the O2.
He is gradually getting weaned off of medications, which is so exciting to see some progress. He is only on 2 precriptions now!
Gabe is definitely growing and developing in other areas. This past week he has discovered his voice and new noises he can make. At first it was cute, but that's wearing off ;)
We have been very blessed so far during the cold and flu season that he hasn't been sick. He has enough things on his plate, that he really doesn't need that to deal with also.
Thank you for checking faithfully. We are blessed to have people like you praying for our little man.
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