Nov 13, 2007
Biopsy Results
Faster than expected the biopsy results came in and we received a call from Dr. Chen last night. She says that Ainsley is negative for eosinaphilic esophagitis which they thought perhaps she might have as a result of reflux. It would have explained the swelling but I think it’s good she doesn’t have that. The cells do test positive for inflammation/swelling. That’s good in that it rules out some sort of congenital abnormality of the tissue and the swelling should go away. Unfortunately since the doctors have no idea what’s causing the swelling, there is no specific way to treat it. She’s starting a new reflux medicine ranitidine. Although Ainsley doesn’t have classic acid reflux she does still throw up about twice a day from coughing (due to the secretions from the trach). It would be great if it helped but she was on Prevacid in the past, and that didn’t help. Over the last 2-3 weeks she has been throwing up less, and when she does I give her water by mouth to try to wash away any acid. I figure it can’t hurt and maybe it’ll help. They would like the swelling to go down some to make surgery on the vocal cords easier. So we’ll be hoping that somehow something changes and that the swelling starts to improve. She has a speaking valve (PMV) that allows her to inhale through the trach but restricts airflow out of the trach requiring that she exhale by mouth/nose and therefore push air past the vocal cords to achieve vocalization. Now she can wear it for a few minutes before it builds pressure and shoots across the room. If she starts to be able to tolerate that regularly we’ll know that the swelling is reducing. If that happens of course we’ll let everyone know.
Nov 9, 2007
Hip Surgery and Laryngoscopy
We wanted to let everyone know that after some drama we made it home from the hospital tonight and Ainsley is doing pretty well. I think she’s happy to be home. Me too. One night in the hospital is enough for me.
As you know Ainsley has hip dysplasia. In other words the legs popped out of the hip sockets and don’t stay in place. Attempts to correct the condition with a Pavlik harness when she was a newborn failed. There was some improvement in one hip but not sufficient improvement in the other. We’ve known that she would eventually need the surgery and a cast to keep the hips in place while the bone grew into place to form a more secure ball and socket. They were able to place one hip with the less invasive closed reduction however the muscle was tight enough that they still had to make an incision to cut the muscle to “release it” and get the leg into place. The other hip needed an open reduction which means they had to clean out the hip socket before repositioning the leg. After the surgery she was placed in a body cast. It goes from the tummy to the ankles. Luckily our orthopedic doc doesn’t use the bar between the legs. Even so the cast is bulky and will require a new wardrobe of specifically sized items. Mostly big dresses and Baby Legs. When you see the cast, you’ll understand what I mean. Our skinny little girl now looks mighty chubby.
We had some problems with the cast. They had to re-cut it to allow better access to the gastrostomy. The way the legs were bent made it difficult to position her in her carseat and stroller. In the end we had to order a special car seat from a medical supplier that is designed especially for spica casts and even that didn’t fit her properly. They were going to redo the leg cast (mostly due to the car seat) but the technician felt it would compromise the integrity of the cast and he couldn’t reach the doctor so we had to pad the carseat with a blanket (against hospital policy) to get her home. Perhaps we’ll get it corrected next week. She’ll be in this cast for 6 weeks, have the cast replaced (for growth), will wear that for another 6 weeks and then a brace 24/7 for another 6 weeks. After that the brace may be used less frequently, depending on how secure the hips are in the sockets.
The biggest challenge is mastering diaper changes so that the cast doesn’t become soiled. It is inevitable that it will, and it’ll stink. We have the added challenge of the gastrostomy and the fact that she throws up a couple times each day. Trying to keep the cast clean and dry is going to be tricky. It’s also bulky and heavy making it awkward to hold or move her. But as with all this stuff, it gets easier the more you do it.
Typical Ainsley style, she’s pretty happy. Not too fussy about it all, although she’s obviously still sore. While we were in the hospital she discovered that the wrapper from a suction catheter makes a really interesting toy. I hope that since her movement will be restricted she’ll focus on other activities, like that.
The laryngoscopy showed that the swelling in her airway is still the same. They did a biopsy this time, that we hope will shed some light on the cause of the swelling. We hope to have results in about a week. They pried open the vocal cords this time and saw what appeared to be some scar tissue restricting the movement of the cords (presumably from the intubation during the first 5 weeks of her life). They think they may be able to do some reconstructive surgery on the area as well as surgical removal of a granuloma (tissue growth) some time next year. What isn’t clear is if they can operate if the swelling doesn’t improve. Our otolaryngologist was paged to surgery during the conversation but we’ll probably get clarification on that part when we get the biopsy results.
We’ll let everyone know if there is any new news.
As you know Ainsley has hip dysplasia. In other words the legs popped out of the hip sockets and don’t stay in place. Attempts to correct the condition with a Pavlik harness when she was a newborn failed. There was some improvement in one hip but not sufficient improvement in the other. We’ve known that she would eventually need the surgery and a cast to keep the hips in place while the bone grew into place to form a more secure ball and socket. They were able to place one hip with the less invasive closed reduction however the muscle was tight enough that they still had to make an incision to cut the muscle to “release it” and get the leg into place. The other hip needed an open reduction which means they had to clean out the hip socket before repositioning the leg. After the surgery she was placed in a body cast. It goes from the tummy to the ankles. Luckily our orthopedic doc doesn’t use the bar between the legs. Even so the cast is bulky and will require a new wardrobe of specifically sized items. Mostly big dresses and Baby Legs. When you see the cast, you’ll understand what I mean. Our skinny little girl now looks mighty chubby.
We had some problems with the cast. They had to re-cut it to allow better access to the gastrostomy. The way the legs were bent made it difficult to position her in her carseat and stroller. In the end we had to order a special car seat from a medical supplier that is designed especially for spica casts and even that didn’t fit her properly. They were going to redo the leg cast (mostly due to the car seat) but the technician felt it would compromise the integrity of the cast and he couldn’t reach the doctor so we had to pad the carseat with a blanket (against hospital policy) to get her home. Perhaps we’ll get it corrected next week. She’ll be in this cast for 6 weeks, have the cast replaced (for growth), will wear that for another 6 weeks and then a brace 24/7 for another 6 weeks. After that the brace may be used less frequently, depending on how secure the hips are in the sockets.
The biggest challenge is mastering diaper changes so that the cast doesn’t become soiled. It is inevitable that it will, and it’ll stink. We have the added challenge of the gastrostomy and the fact that she throws up a couple times each day. Trying to keep the cast clean and dry is going to be tricky. It’s also bulky and heavy making it awkward to hold or move her. But as with all this stuff, it gets easier the more you do it.
Typical Ainsley style, she’s pretty happy. Not too fussy about it all, although she’s obviously still sore. While we were in the hospital she discovered that the wrapper from a suction catheter makes a really interesting toy. I hope that since her movement will be restricted she’ll focus on other activities, like that.
The laryngoscopy showed that the swelling in her airway is still the same. They did a biopsy this time, that we hope will shed some light on the cause of the swelling. We hope to have results in about a week. They pried open the vocal cords this time and saw what appeared to be some scar tissue restricting the movement of the cords (presumably from the intubation during the first 5 weeks of her life). They think they may be able to do some reconstructive surgery on the area as well as surgical removal of a granuloma (tissue growth) some time next year. What isn’t clear is if they can operate if the swelling doesn’t improve. Our otolaryngologist was paged to surgery during the conversation but we’ll probably get clarification on that part when we get the biopsy results.
We’ll let everyone know if there is any new news.
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