Wednesday, November 4, 2009
Tuesday, October 13, 2009
October 13, 2009
Our son's eye is looking good. The stitches have not dissolved yet, but the swelling is just about gone. All in all, it looks great and we feel lucky for the success. We will continue to watch it over the next few weeks to see the final result.
Picture shown was taken 2 weeks after surgery.
Thursday, September 24, 2009
Sept. 24, 2009
It is one week past our son's eyelid surgery. He is doing excellent. He hardly seems phased by the change. His swelling is almost completely gone. We’ve been diligent about keeping his eye moist, and so far, there seem to be no issues with dryness. He falls asleep and his left eye stays open (which is a little freaky), but it doesn’t seem to bother him a bit. All in all, he is doing great and we are thrilled and relieved. The result of the “sling” is most noticeable when Lane looks down because his right eyelid partially closes as his right eye rolls down to look down, but his left lid stays wide open, while the left eye rolls downward. That is when things look a little odd, but if that’s the worst of it – we’ll take it!
Thursday, September 17, 2009
September 17, 2009 Surgery
Photos taken day #1 and day #2 post-surgery.Our son had frontalis sling surgery yesterday, at 14 months old, to correct his drooping eyelid. This was the day we had hoped for and dreaded since shortly after his birth, and diagnosis. The surgery was scheduled for 11:30 am. This was much later than we had anticipated, especially given his young age. He was not allowed to eat anything after midnight, and have only clear liquids until 8:30am then nothing until surgery. How would we keep him content? He’d be so hungry. We decided to change up our morning routine so that our son would not be expecting breakfast as usual. We played in the house for awhile, then played outside for about an hour then brought him in the house around 8:15 and offered him jello, Popsicles, Propel (which he loves) and apple juice. He didn’t like the jello; ate two Popsicles and wasn’t so interested in the drinks. Okay, here we go ….. 3 hours until surgery time and no food or water. Shortly after his “breakfast” we loaded him in the car for a long drive to the hospital while he napped. I worried that he would not fall asleep without his usual warm bottle, but thank goodness, he did. We arrived at the hospital at 10:00am as instructed. We were directed to the surgical floor for check-in, and got moved to the pre-surgical area where we stayed right up until surgery time. While there, our son played with some toys and with another boy. Many folks stopped to speak with us – our surgical nurse for the day who would take us through the process, locate us in the waiting room if necessary, and provide updates during the surgery; the anesthesiologists, the fellow physician, and finally the surgeon. Towards the later end of our pre-surgery time, our son definitely started to get really hungry. At one point, he started to dig through my diaper bag which is usually full of snacks (but was not), then tore his pacifier and threw it on the floor then stomped his feet. He wanted food, and he wasn’t getting it. We continually tried to distract him with other things just to pass the time. I worried the surgery would be delayed and things would get ugly. Just as our son was getting to the end of his rope, they administered an anti-anxiety medication (the “cocktail”) so there would be not separation anxiety when they took him from us. We then changed him into a yellow hospital gown, and within minutes, the anesthesiologist came to pick him up. Literally, he carried our son to the operating room. After our son was taken, the nurse directed us to the waiting room, but recommended that we get ourselves some food and drink to build energy that we would need later in recovery and thereafter. We were told the surgery would take ~2 hours. While our son was in surgery, we received two updates. One to let us know that they had just gotten started (12:08pm) and that he had gone to sleep just fine with no tears or upset, and that we’d get another update in 45 minutes or so. The second update let us know that they were finishing the sling and the surgery would be complete in ~20 minutes. We headed up to the waiting room. After about 20 minutes in the waiting room, we were called to the recovery room. We had to follow an administrator to the recovery area, and I remember wishing and willing her to walk faster, and get me to my baby. After we entered, she directed us to our son's bed/area. I couldn't get there fast enough. I heard him crying as we approached the curtain. When I saw him, he was sitting in a chair with a nurse, quite upset, uncomfortable and lost. His left eye was heavily covered with a patch and tape, and we had been told that his eye beneath is it was sutured shut. He had restraints on both arms prohibiting him to get his hands near his eyes. He had a heartbeat monitor on his foot and an IV in his left hand. I immediately took our son from the nurse’s arms and tried to comfort him. He was quite irritable. Finally, he settled to sleep in my arms. The nurse administered a second dose of pain medication into his IV. We sat in the recovery area for about 45 minutes. Our son slept and woke irritably on and off. He drank quite a bit of apple juice when he woke. His throat was horse from the breathing tube. We were then moved back to a pre/post surgical room where we stayed for about 1 hour. Our son mostly slept in my arms. His fever, pulse, and heart rate were checked, and after an hour his IV was removed. Our nurse then brought us a prescription for an oral antibiotic (5 days) and an eye moisturizing antibiotic (4x/day). We were then cleared to leave the hospital at ~4:00pm.
The procedure done on our son's eyelid is called the frontalis sling. A plastic rod was inserted below the skin to essentially suspend the eyelid from the eyebrow muscle. He has 3 incisions on his forehead, one above the left side of his eyebrow, one (placed higher) above the center of his eyebrow, and one above the right side of his eyebrow. Each incision is stitched closed. He then has a line of stitches across the crease of his eyelid. The sling was inserted in the shape of pentagon, and is tied at the top, point of the pentagon. The eyelid height was over corrected to allow for it to “fall” a bit over the next 6-8 weeks. We were warned that it will be open more than the normal eye and will not close at all, at least in the near future. Our son vomited in the car on the way home from the hospital, then fell back asleep. We bathed and changed him at home, he ate a bit of dinner, then went to bed at around 7:00pm. We were instructed to keep the arm braces on him so that he did not touch the patch on his eye, however, we were both uncomfortable with the braces and thought they would agitate him and make things worse rather than better. So we did not use the braces, and he was far too tired and woozy to bother with the bandage. He fell asleep in my arms and slept in his crib until 3:00am, at which time I changed his diaper, pajamas, and rocked him back to sleep with a bottle at 4:00am. He slept until 7:00am the next morning. I continually checked him all night to assure he was not touching the bandage, and he was not. The morning after the surgery our soon acted fairly normal, and seemingly unbothered by the surgery. Later in the morning, though, he began to attack the patched area. He pulled, dug his fingers in – it was bad. When we held his hands down, he cried and cried. We almost considered having to put the braces on. Instead we got in the car and took him down to the hospital for his post op appointment in which they would remove the patch and release the suture. When we got to the hospital, they took us right away. My hisband held our son in place (and poor baby cried) while they removed the patch and cut the suture. I have to admit, to see our son's post surgical eye was a bit horrifying. I cried a bit. He is very swollen, his stitches are very visible, his eye is hyper-open and does not close (it reminds me of the movie “Clockwork Orange”), and he just looks a little scary right now. Our oldest son jumped into my arms and dug his face into me when he saw his little brother's eye. He said, “mom, he doesn’t look like a person”. ) All that said, a few minutes after seeing our baby this way, I (and his brother) got used to it and we saw him as the same darling boy he always was. Our son's first look at the world with both eyes wide open was amazing. He looked all around the room, squinted a bit from the light, and seemed somewhat unbothered by the change – God bless him! The doctor took a few pictures, gave instructions on the medications,and most importantly, keeping the eye lubricated, and we were off. I asked about how diligent we need to be about germs (not overly) and about whether he would have trouble napping given his eye wouldn’t close (I was told that he would not be bothered). We headed out of the hospital and our son was his old self. He was running about, throwing his arms in the air, without a care in the world. This was good for us to see because it assured us that he was okay. We headed home from the hospital, and, sure enough, our son feel asleep during the car ride with one eye open (again,this is sort of freaky). From here on out, we wait and watch. We’re told the stitches will disintegrate over a period of 10+ days. The swelling should subside in 7-10 days. Our job is to keep the eye moist ongoing. We then head back to visit the doctor in 10 days. I am nervous, and anxious, and optimistic to see our son’s eye heal over the next few weeks.
The procedure done on our son's eyelid is called the frontalis sling. A plastic rod was inserted below the skin to essentially suspend the eyelid from the eyebrow muscle. He has 3 incisions on his forehead, one above the left side of his eyebrow, one (placed higher) above the center of his eyebrow, and one above the right side of his eyebrow. Each incision is stitched closed. He then has a line of stitches across the crease of his eyelid. The sling was inserted in the shape of pentagon, and is tied at the top, point of the pentagon. The eyelid height was over corrected to allow for it to “fall” a bit over the next 6-8 weeks. We were warned that it will be open more than the normal eye and will not close at all, at least in the near future. Our son vomited in the car on the way home from the hospital, then fell back asleep. We bathed and changed him at home, he ate a bit of dinner, then went to bed at around 7:00pm. We were instructed to keep the arm braces on him so that he did not touch the patch on his eye, however, we were both uncomfortable with the braces and thought they would agitate him and make things worse rather than better. So we did not use the braces, and he was far too tired and woozy to bother with the bandage. He fell asleep in my arms and slept in his crib until 3:00am, at which time I changed his diaper, pajamas, and rocked him back to sleep with a bottle at 4:00am. He slept until 7:00am the next morning. I continually checked him all night to assure he was not touching the bandage, and he was not. The morning after the surgery our soon acted fairly normal, and seemingly unbothered by the surgery. Later in the morning, though, he began to attack the patched area. He pulled, dug his fingers in – it was bad. When we held his hands down, he cried and cried. We almost considered having to put the braces on. Instead we got in the car and took him down to the hospital for his post op appointment in which they would remove the patch and release the suture. When we got to the hospital, they took us right away. My hisband held our son in place (and poor baby cried) while they removed the patch and cut the suture. I have to admit, to see our son's post surgical eye was a bit horrifying. I cried a bit. He is very swollen, his stitches are very visible, his eye is hyper-open and does not close (it reminds me of the movie “Clockwork Orange”), and he just looks a little scary right now. Our oldest son jumped into my arms and dug his face into me when he saw his little brother's eye. He said, “mom, he doesn’t look like a person”. ) All that said, a few minutes after seeing our baby this way, I (and his brother) got used to it and we saw him as the same darling boy he always was. Our son's first look at the world with both eyes wide open was amazing. He looked all around the room, squinted a bit from the light, and seemed somewhat unbothered by the change – God bless him! The doctor took a few pictures, gave instructions on the medications,and most importantly, keeping the eye lubricated, and we were off. I asked about how diligent we need to be about germs (not overly) and about whether he would have trouble napping given his eye wouldn’t close (I was told that he would not be bothered). We headed out of the hospital and our son was his old self. He was running about, throwing his arms in the air, without a care in the world. This was good for us to see because it assured us that he was okay. We headed home from the hospital, and, sure enough, our son feel asleep during the car ride with one eye open (again,this is sort of freaky). From here on out, we wait and watch. We’re told the stitches will disintegrate over a period of 10+ days. The swelling should subside in 7-10 days. Our job is to keep the eye moist ongoing. We then head back to visit the doctor in 10 days. I am nervous, and anxious, and optimistic to see our son’s eye heal over the next few weeks.
Thursday, January 1, 2009
January 1, 2009: Our experience with our son's congenital ptosis
Our son was born in 2008 with congenital ptosis in his left eye. After his diagnosis, we found that there was not a lot of information available on this condition. We especially sought pre and post-surgery pictures of children with this condition so we knew what to expect for our son during his lifetime. For these reasons, we are writing this blog to share our story, post photos of our son's results, and correspond with others dealing with a similar situation.
After his birth, the left side of our son's face was swollen and his left eye did not fully open. The pediatrician attributed the swelling and eye problem to trauma during the birth, and advised that it should subside. (Ptosis can be caused by position in the womb or a genetic defect. We don't know for certain what caused our son's condition.) After approximately 10 days, we noticed the swelling decrease, but no improvement in his eyelid and we began research on the condition. We immediately scheduled a visit to a specialist because we were concerned about his vision in that eye. He was first seen by a pediatric opthamologist at a children's hospital at 15 days old. The doctor confirmed that he had congenital ptosis. The initial examination of his vision as a newborn concluded that his left eye was tracking with his right eye so it seemed he was using that eye to some degree. Our son was seen by this doctor, another pediatric opthamologist for a second opinion, and also a pediatric oocuplastic surgeon within his first six months of age. All the
doctors agreed that our son's ptosis was severe, and his levator muscle function was poor.
Doctor #1 recommended a frontalis sling procedure for our son due to his poor levator function and severe drooping, but was not willing to perform the procedure until our son was older; ideally 3 years old, when the doctor could use our son's own muscle tissue (fascia) in the procedure. In this procedure, the eyelid muscle would be suspended to the eyebrow muscle so that the eyebrow could then do the work of lifting and lowering the eyelid. The doctor would only perform the procedure sooner if he saw proof that our son's vision was poor enough to merit an earlier surgery.
Doctor #2 recommended a supermaximus levator resection and was willing to perform surgery almost immediately. In this procedure, the levator muscle is cut down in size (shortened), then reattached in order to hold the eyelid higher and decrease or eliminate the drooping.
Doctor #3 concurred with Doctor #1 and referred us back to him for his specialty and experience with the frontalis sling surgery.
After much debate and research, despite our anxiety to have his eyelid corrected as early as possible, we chose to take our son exclusively to Doctor #1 going forward.
For our son's first year he visited the doctor regularly. We brought pictures to each appointment which showed our son at different ages (3 months, 4 months, etc.) and at different times of the same day (morning, noon, night, etc.). Each visit they tested his vision in the ptosis eye (vision analysis is a somewhat subjective task in an infant who cannot be examined with traditional eye charts) and also examined his eyelid for any changes in droopiness and function. His ptosis eye always seemed weaker than his right eye, so we were instructed to patch hi's good eye for 1-2 hours each day to improve the vision in the ptosis eye. Just after our son's first birthday, the doctor determined that he felt it necessary to move forward with the surgery (to our relief!) sooner than later due to the severity of our son's droopiness and the apparent weakness in the vision of his left eye.
Frontalis sling surgery was scheduled when our son was 14 months old. In this procedure, the eyelid muscle is "slung"/attached to the eyebrow muscle so that the eyebrow can do the work of lifting and lowering the eyelid. A silicone rod would be used, as opposed to banked fascia, at the doctor's recommendation. As we understood it, the body accepts the banked fascia more readily due to its natural state, but the silicone provides a more long-term effect (assuming it is not rejected by the body) as it holds stronger for a longer period of time. We were told the surgery would take approximately 2 hours, that his eye would NOT close post-surgery (not even during sleep), and eye dryness was a great risk that we might encounter which could possibly require a second surgery. Our son's eye would be stitched closed after the surgery, and the doctor would remove the stitch the following day. We were to expect swelling for up to 6 weeks, and we would have to apply an antibiotic lubricant into the eye three times a day for approximately two weeks. The doctor advised that we would need to wait at least 6 weeks to see the final outcome of the surgery. With that, we prepared for surgery.
After his birth, the left side of our son's face was swollen and his left eye did not fully open. The pediatrician attributed the swelling and eye problem to trauma during the birth, and advised that it should subside. (Ptosis can be caused by position in the womb or a genetic defect. We don't know for certain what caused our son's condition.) After approximately 10 days, we noticed the swelling decrease, but no improvement in his eyelid and we began research on the condition. We immediately scheduled a visit to a specialist because we were concerned about his vision in that eye. He was first seen by a pediatric opthamologist at a children's hospital at 15 days old. The doctor confirmed that he had congenital ptosis. The initial examination of his vision as a newborn concluded that his left eye was tracking with his right eye so it seemed he was using that eye to some degree. Our son was seen by this doctor, another pediatric opthamologist for a second opinion, and also a pediatric oocuplastic surgeon within his first six months of age. All the
doctors agreed that our son's ptosis was severe, and his levator muscle function was poor.Doctor #1 recommended a frontalis sling procedure for our son due to his poor levator function and severe drooping, but was not willing to perform the procedure until our son was older; ideally 3 years old, when the doctor could use our son's own muscle tissue (fascia) in the procedure. In this procedure, the eyelid muscle would be suspended to the eyebrow muscle so that the eyebrow could then do the work of lifting and lowering the eyelid. The doctor would only perform the procedure sooner if he saw proof that our son's vision was poor enough to merit an earlier surgery.
Doctor #2 recommended a supermaximus levator resection and was willing to perform surgery almost immediately. In this procedure, the levator muscle is cut down in size (shortened), then reattached in order to hold the eyelid higher and decrease or eliminate the drooping.
Doctor #3 concurred with Doctor #1 and referred us back to him for his specialty and experience with the frontalis sling surgery.
After much debate and research, despite our anxiety to have his eyelid corrected as early as possible, we chose to take our son exclusively to Doctor #1 going forward.
For our son's first year he visited the doctor regularly. We brought pictures to each appointment which showed our son at different ages (3 months, 4 months, etc.) and at different times of the same day (morning, noon, night, etc.). Each visit they tested his vision in the ptosis eye (vision analysis is a somewhat subjective task in an infant who cannot be examined with traditional eye charts) and also examined his eyelid for any changes in droopiness and function. His ptosis eye always seemed weaker than his right eye, so we were instructed to patch hi's good eye for 1-2 hours each day to improve the vision in the ptosis eye. Just after our son's first birthday, the doctor determined that he felt it necessary to move forward with the surgery (to our relief!) sooner than later due to the severity of our son's droopiness and the apparent weakness in the vision of his left eye.
Frontalis sling surgery was scheduled when our son was 14 months old. In this procedure, the eyelid muscle is "slung"/attached to the eyebrow muscle so that the eyebrow can do the work of lifting and lowering the eyelid. A silicone rod would be used, as opposed to banked fascia, at the doctor's recommendation. As we understood it, the body accepts the banked fascia more readily due to its natural state, but the silicone provides a more long-term effect (assuming it is not rejected by the body) as it holds stronger for a longer period of time. We were told the surgery would take approximately 2 hours, that his eye would NOT close post-surgery (not even during sleep), and eye dryness was a great risk that we might encounter which could possibly require a second surgery. Our son's eye would be stitched closed after the surgery, and the doctor would remove the stitch the following day. We were to expect swelling for up to 6 weeks, and we would have to apply an antibiotic lubricant into the eye three times a day for approximately two weeks. The doctor advised that we would need to wait at least 6 weeks to see the final outcome of the surgery. With that, we prepared for surgery.
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