Ethan is now off oxygen. The oximiter was delivered two weeks ago and Ethan slept with it on for one night. The next day, it was picked up and we were advised in the next few following days that the data indicated that Ethan (who still had a touch of a cold at the time) never had his oxygen saturation levels drop below 90.
Ostensibly, when he is 100% healthy, this will improve even more - but even on it's own - 90% is pretty good.
He is still on schedule for a sleep study in December where they will know for sure that the last surgery (removal of tonsils and adenoids) had it's full desired effect. But the results so far are very encouraging!
- bob
Showing posts with label tonsillectomy. Show all posts
Showing posts with label tonsillectomy. Show all posts
Tuesday, November 8, 2011
Sunday, September 18, 2011
The Road Home
It has been over 48 hours since Ethan's surgery and he is still at Children's (with Dina). He is still not eating/drinking significantly and overnight it was found his oxygen saturation levels dropped to a very low level (77 at it's lowest).
His ENT (who was also the surgeon) checked in on him this morning and determined that all the problems seem to be related to swelling in his mouth under his tongue which was due to a myriad of surgical implements that were placed there to keep his mouth open, tongue in place, etc. during the procedure.
The result of all the accoutrements that were placed in that area is that is is irritated and swollen. This means that when he reaches deeper levels of sleep, his tongue is more apt to basically flop over and obstruct his airway resulting in the depressed levels of oxygen saturation.
It was also found that when they gave him steroids to help with the inflammation, Ethan perked right up, his oxygen saturation levels improved greatly, and it was during this time he showed renewed interest in eating and drinking. About the time when the steroids wore off - that coincided with when he got much more irritable and less interested in food and liquids.
The plan going forward is to give him a shot of steroids and then watch him again during that time period. If all signs improve again, he will be sent home with a course of steroids that we can deliver (probably over the course of 5-7 days). This will help alleviate the swelling (which would disappear on it's own - but it might take up to 2 weeks on it's own).
So we are somewhat hopeful that Ethan can come home tomorrow (Monday, 9/19/2011).
- b
His ENT (who was also the surgeon) checked in on him this morning and determined that all the problems seem to be related to swelling in his mouth under his tongue which was due to a myriad of surgical implements that were placed there to keep his mouth open, tongue in place, etc. during the procedure.
The result of all the accoutrements that were placed in that area is that is is irritated and swollen. This means that when he reaches deeper levels of sleep, his tongue is more apt to basically flop over and obstruct his airway resulting in the depressed levels of oxygen saturation.
It was also found that when they gave him steroids to help with the inflammation, Ethan perked right up, his oxygen saturation levels improved greatly, and it was during this time he showed renewed interest in eating and drinking. About the time when the steroids wore off - that coincided with when he got much more irritable and less interested in food and liquids.
The plan going forward is to give him a shot of steroids and then watch him again during that time period. If all signs improve again, he will be sent home with a course of steroids that we can deliver (probably over the course of 5-7 days). This will help alleviate the swelling (which would disappear on it's own - but it might take up to 2 weeks on it's own).
So we are somewhat hopeful that Ethan can come home tomorrow (Monday, 9/19/2011).
- b
Friday, September 16, 2011
Surgery Day V
Today was Ethan's surgery to remove his tonsils and adenoids to hopefully alleviate his airway obstruction issues.
Ethan's snoring had gotten so bad we called it into Children's where they decided to admit him for a sleep study. The results showed that his oxygen levels were lower than usual and he had experienced a higher number of apnea episodes than is acceptable. The consensus from the neurologist (the sleep doctor) and his ENT was that if we do a tonsillectomy and an adenoidectomy, this should open up the airway enough so as to resolve these issues.
The surgery went well with no surprises or issues during the intubation or the procedure. They removed his tonsils (they turned out to be much larger than originally suspected) and about 2/3 of his adenoids. Before removing any of his adenoids, the doctor verified he did not have a submucosal cleft palate (http://www.cleftline.org/publications/submucous). The presence of this would have affected her decision of how much, if any, of his adenoids to remove as this could possibly impact his speech development. However, she found no evidence of this and therefore proceeded with the procedure.
The recovery was another issue, however. In his previous surgeries, with the pain medications, he was groggy but otherwise himself as he recovered from the procedures. This time, however, due to the swelling in his throat because of all the work done in the area, even with all the pain medications, the simple act of swallowing was bothersome and painful for the little guy. This meant that he could not even self-soothe on his bottle as he couldn't drink anything. At meal time, he actually tried to eat a chicken nugget but likewise, couldn't swallow it. He was obviously frustrated and in discomfort every time he tried to swallow.
He was upgraded from Tylenol to Oxycontin, to finally morphine. Surprisingly, even with the morphine, even though he was much better, he did not fall asleep. Instead he just sat and chilled out. It should be noted that during this time, while the pain was under control he still did not eat or drink anything...
The doctors said that this was, unfortunately, to be expected and is common. The swelling should subside in the next 24 hours and that he should be able to eat and drink better by tomorrow.
One of his conditions of his discharge is that he be able to eat and/or drink. Hopefully he will be able to satisfy that condition by tomorrow or Sunday at the latest...
- b
Ethan's snoring had gotten so bad we called it into Children's where they decided to admit him for a sleep study. The results showed that his oxygen levels were lower than usual and he had experienced a higher number of apnea episodes than is acceptable. The consensus from the neurologist (the sleep doctor) and his ENT was that if we do a tonsillectomy and an adenoidectomy, this should open up the airway enough so as to resolve these issues.
The surgery went well with no surprises or issues during the intubation or the procedure. They removed his tonsils (they turned out to be much larger than originally suspected) and about 2/3 of his adenoids. Before removing any of his adenoids, the doctor verified he did not have a submucosal cleft palate (http://www.cleftline.org/publications/submucous). The presence of this would have affected her decision of how much, if any, of his adenoids to remove as this could possibly impact his speech development. However, she found no evidence of this and therefore proceeded with the procedure.
The recovery was another issue, however. In his previous surgeries, with the pain medications, he was groggy but otherwise himself as he recovered from the procedures. This time, however, due to the swelling in his throat because of all the work done in the area, even with all the pain medications, the simple act of swallowing was bothersome and painful for the little guy. This meant that he could not even self-soothe on his bottle as he couldn't drink anything. At meal time, he actually tried to eat a chicken nugget but likewise, couldn't swallow it. He was obviously frustrated and in discomfort every time he tried to swallow.
He was upgraded from Tylenol to Oxycontin, to finally morphine. Surprisingly, even with the morphine, even though he was much better, he did not fall asleep. Instead he just sat and chilled out. It should be noted that during this time, while the pain was under control he still did not eat or drink anything...
The doctors said that this was, unfortunately, to be expected and is common. The swelling should subside in the next 24 hours and that he should be able to eat and drink better by tomorrow.
One of his conditions of his discharge is that he be able to eat and/or drink. Hopefully he will be able to satisfy that condition by tomorrow or Sunday at the latest...
- b
Monday, June 27, 2011
Surgery Date
Ethan's surgery to have his tonsils and (at least some part of his) adenoids removed is set for 9/16/2011. This was the earliest date that was available for both his ENT and plastic surgeon (recall that he will do a minor procedure on his macrostomia repair scar).
If something should open up earlier, we will take it, but as it stands, we are looking at mid September. This also means his follow sleep study will be in December at the earliest.
- b
If something should open up earlier, we will take it, but as it stands, we are looking at mid September. This also means his follow sleep study will be in December at the earliest.
- b
Tuesday, June 7, 2011
Trouble Sleeping
Ethan's snoring has become demonstrably worse in the last few months so we called it in. After a cursory examination by his pediatrician and then by Craniofacial at Children's, it was decided to do another sleep study.
The results were quite bad. His oxygen saturation levels were down significantly since his last sleep study (down to about 86% at one point) and he had a significant jump in the number of apnea events - especially during REM sleep which is when the number should go down.
Ethan will be seeing a number of his doctors in a couple of weeks for his regular 6 month followups. One of them will be ENT which will probably take a good look into his airway to see just what is going on.
However, his sleep study doctor did not want to wait even a few weeks without doing anything so Ethan is now on oxygen when he goes to bed. This basically involves putting a tube around his face that supplies oxygen through the nose. This tube is connected to a small oxygen tank (that is refilled every 24/48 hours by a very large unit that looks a little like a Dalek (a Dr. Who reference for the uninitiated)). We tape the hose to his face and run it down under his clothes to minimize any kind of accidental strangulation risk.
The oxygen will continue at least until he has his appointments. Longer term actions will be determined by what the doctors find at his upcoming appointments. Most likely a tonsillectomy will be involved.
Adequate deep sleep is crucial in that the body generates/releases growth hormones during sleep in children.
- b
The results were quite bad. His oxygen saturation levels were down significantly since his last sleep study (down to about 86% at one point) and he had a significant jump in the number of apnea events - especially during REM sleep which is when the number should go down.
Ethan will be seeing a number of his doctors in a couple of weeks for his regular 6 month followups. One of them will be ENT which will probably take a good look into his airway to see just what is going on.
However, his sleep study doctor did not want to wait even a few weeks without doing anything so Ethan is now on oxygen when he goes to bed. This basically involves putting a tube around his face that supplies oxygen through the nose. This tube is connected to a small oxygen tank (that is refilled every 24/48 hours by a very large unit that looks a little like a Dalek (a Dr. Who reference for the uninitiated)). We tape the hose to his face and run it down under his clothes to minimize any kind of accidental strangulation risk.
The oxygen will continue at least until he has his appointments. Longer term actions will be determined by what the doctors find at his upcoming appointments. Most likely a tonsillectomy will be involved.
Adequate deep sleep is crucial in that the body generates/releases growth hormones during sleep in children.
- b
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