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
Monday, June 27, 2011
Wednesday, June 22, 2011
Ethan's 6 Month Followup At Children's
Monday (6/20/11) was Ethan's 6 month (give or take) followup with Children's. He had another hearing screen followed up with visits from his plastic surgeon, social work, otolaryngology (ENT), and pulmonary (his sleep doctor).
His hearing screen was not great - but that was not due to the test results but rather a function of his age and their inability to get a good test in. Up until now, the tests consisted of him sitting in a sound proof room (on Dina's lap) while an assistant used toys and props to keep Ethan's attention focused on her/forward. Then, at random times, the tester (in the adjoining room) would play a sound. If Ethan looked in the direction of the sound, various things would light up and move. The sounds would be varied in amplitude, frequency (pitch), and direction. As long as Ethan looked in the direction of the sound, they would conclude he could hear that frequency.
The problem now is that Ethan is of the age where this kind of thing gets old very quickly and he eventually simply lost interest and would not look at anything except what was currently occupying his attention. He would look initially, but eventually, would stop looking, but at times would just mimic the sound himself instead of looking.
The test administrator herself remarked that he is of the age where the test may or may not work. Ostensibly, at his next hearing screen, the tests will be different as he will be at least 6 months older.
What results they did get were fairly good and consistent with previous results.
The visit with the plastic surgeon was uneventful. He examined the scar from the macrostomia repair and noted it was still fairly large. It is mostly on the inside of his mouth and therefore not that noticeable from he outside. He mentioned that if Ethan were to have an upcoming surgery, he might take the opportunity to go in and do a little to the scar to help soften it up (either by a very quick and minor procedure or a cortisone injection). This segues nicely into...
His visits from otolaryngology and pulmonary both indicate that Ethan will need to have his tonsils removed and at least some portion of his adenoids removed. This was no surprise given what has been going on these last few months. We hope to have this surgery scheduled by end of next week.
The plan is to continue the oxygen until the surgery, and then continue the oxygen for 1-2 weeks post surgery as he heals. Once he's recovered from the surgery, we will then take him off the oxygen until a follow up sleep study which will be 3 months later where he will be evaluated again. It is possible (though hoped not!) that he may need to go back on oxygen at that point.
In the worst case, should the tonsil and adenoid removal prove ineffective, they will put early jaw surgery back on the table as an alternative to help open up his airway. It is, however, expected that this upcoming procedure will alleviate all his current sleep problems.
- b
His hearing screen was not great - but that was not due to the test results but rather a function of his age and their inability to get a good test in. Up until now, the tests consisted of him sitting in a sound proof room (on Dina's lap) while an assistant used toys and props to keep Ethan's attention focused on her/forward. Then, at random times, the tester (in the adjoining room) would play a sound. If Ethan looked in the direction of the sound, various things would light up and move. The sounds would be varied in amplitude, frequency (pitch), and direction. As long as Ethan looked in the direction of the sound, they would conclude he could hear that frequency.
The problem now is that Ethan is of the age where this kind of thing gets old very quickly and he eventually simply lost interest and would not look at anything except what was currently occupying his attention. He would look initially, but eventually, would stop looking, but at times would just mimic the sound himself instead of looking.
The test administrator herself remarked that he is of the age where the test may or may not work. Ostensibly, at his next hearing screen, the tests will be different as he will be at least 6 months older.
What results they did get were fairly good and consistent with previous results.
The visit with the plastic surgeon was uneventful. He examined the scar from the macrostomia repair and noted it was still fairly large. It is mostly on the inside of his mouth and therefore not that noticeable from he outside. He mentioned that if Ethan were to have an upcoming surgery, he might take the opportunity to go in and do a little to the scar to help soften it up (either by a very quick and minor procedure or a cortisone injection). This segues nicely into...
His visits from otolaryngology and pulmonary both indicate that Ethan will need to have his tonsils removed and at least some portion of his adenoids removed. This was no surprise given what has been going on these last few months. We hope to have this surgery scheduled by end of next week.
The plan is to continue the oxygen until the surgery, and then continue the oxygen for 1-2 weeks post surgery as he heals. Once he's recovered from the surgery, we will then take him off the oxygen until a follow up sleep study which will be 3 months later where he will be evaluated again. It is possible (though hoped not!) that he may need to go back on oxygen at that point.
In the worst case, should the tonsil and adenoid removal prove ineffective, they will put early jaw surgery back on the table as an alternative to help open up his airway. It is, however, expected that this upcoming procedure will alleviate all his current sleep problems.
- b
Sunday, June 12, 2011
Oxygen Update
Ethan's oxygen was delivered in early June by Seattle Children's Home Care Services. The delivery guy went over how to use the big tank, how to fill the portable tank, how to use the cannula and all the other pertinant information that we need to know. It was great working with him and great to know that we will NOT have to work with Apria for our home care equipment this time around. SO relieved! Our normal driver will come every 3 weeks to fill the tank unless we call sooner to have it refilled. Our normal driver will be Deon.
The smaller tank is the portable machine and gets refilled by the big tank.
Ethan did not like the oxygen the first night. He tried to pull it out and fought me for hours, so I finally gave in at 2am and let him sit on the couch and watch Sprout. He would cry and then get distracted by the show and then remember and cry a few minutes later and then get distracted by the show again. Each time, I would have to keep him from pulling out the cannula.
The next night went much smoother. I waited until he fell asleep and then put the cannula in. He woke up and fussed, but fell back asleep pretty quickly. The rate of oxygen is really low, at .25. Ethan did wake up a couple of more times, but overall, the cannula stayed in. When he woke up in the morning, he was a little upset. When he saw me, he pointed at the cannula and said, "Dis (This). All done." He didn't try to pull it out and waited for me to do it. What a good boy!
I think things will continue to go well and hope that we can get a plan on how long he will have to be on oxygen at his craniofacial appointment on June 20th. At that time, we will not only get to talk to his regular doctors, but also his ENT and his sleep doctor (pulmonary).
-Dina
The smaller tank is the portable machine and gets refilled by the big tank.Ethan did not like the oxygen the first night. He tried to pull it out and fought me for hours, so I finally gave in at 2am and let him sit on the couch and watch Sprout. He would cry and then get distracted by the show and then remember and cry a few minutes later and then get distracted by the show again. Each time, I would have to keep him from pulling out the cannula.
The next night went much smoother. I waited until he fell asleep and then put the cannula in. He woke up and fussed, but fell back asleep pretty quickly. The rate of oxygen is really low, at .25. Ethan did wake up a couple of more times, but overall, the cannula stayed in. When he woke up in the morning, he was a little upset. When he saw me, he pointed at the cannula and said, "Dis (This). All done." He didn't try to pull it out and waited for me to do it. What a good boy!
I think things will continue to go well and hope that we can get a plan on how long he will have to be on oxygen at his craniofacial appointment on June 20th. At that time, we will not only get to talk to his regular doctors, but also his ENT and his sleep doctor (pulmonary).
-Dina
Saturday, June 11, 2011
Clutz
Well, I gave myself a mild concussion. Not a pretty story and no, I did not get it playing soccer. I wish. So the story goes like this: I was in the kitchen and spilled some fish juice on the floor. I got a paper towel and went to look for the spill by bending over at the waist at a 90 degree angle. At that angle, I began walking forward looking at the floor but I wasn't watching where I was walking and I walked right into the countertop. Yes, the top of my head hit smack into the lip of the granite countertop. I didn't think I hit it that hard, but it did hurt. I stood there for a minute and then regrouped to find the spill. Once I cleaned it up, Jonathan wanted me to lay on the floor with him so I did and the room began spinning. I didn't think much of it and thought that it was to be expected considering I had just hit my head. Later that night, I started feeling a bit dizzy and off. The next morning, I still felt funny so I went to the doctor and she diagnosed me with a mild concussion. I feel pretty stupid since I am always telling the boys to watch where they are going and I didn't follow my own advice. I will be out of soccer until I am symptom free for at least 24 hours. At this point, I just hope I can be back in a few weeks time. I know that this means I will no longer be doing any headers considering the prior diagnosis of a split down the middle of my brain which was probably caused by doing too many headers to begin with
-Dina.
-Dina.
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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