We spent the day downtown yesterday for 2 doctor appointments and x-rays of her chest and upper GI. Turn's out Faith's hiatal hernia is back again, although the doctor said it is pretty small right now and he does not want to operate on it yet. Instead of doing surgery the doc wants us to manage it by decreasing the amount of her feedings and adding another feeding time (basically keeping her total calories the same but spreading it out more over the day). He said the surgery can hopefully wait 2-3 years as long as she is not having significant symptoms, which she is not for now anyway. I'm glad this can wait, I just don't want to put her through this surgery for the 3rd time right now. I'm not sure why but getting news like this really depresses me. I think it's because she already needs so many surgeries that adding one more to the list, even small ones like this are upsetting. I'm sure I'll bounce back in a couple days, but just needed to vent about it.
All for now.
Robin
Friday, September 5, 2008
Tuesday, August 26, 2008
Jaw Reconstruction versus Jaw Distraction
That's what I'm trying to decide between for Faith's first major jaw surgery. Because Faith is missing a lot of her left lower jaw bone (the ramus and the TMJ) most the doctors we have consulted with say that she need a bone graft first, where they would take one of her rib bones and basically shape it to where the ramus part of her mandible should be. Then, roughly a year after the bone graft, she would need a jaw distraction where they break the jaw and widen the gap between the break 1mm per day and grow new bone to add the length she needs to her jaw to open up her airway. But another doctor thinks she doesn't need a bone graft ever and that he can do a distraction now.
For the bone graft or jaw reconstruction surgery, the doctors we have consulted have varied opinions about when to do the surgery, NYU says around 2-3 years old, CHOP (Children's Hosp of Philadelphia) says around 5, maybe 4, which although it doesn't sound like a big difference, it is so close to when she would be ready to start school that we are not thrilled about waiting that long. They want to wait because they want the rib bones to grow large enough to make the surgery more successful. In addition to the timing, it is a pretty invasive surgery and there can be problems with the bone getting reabsorbed by the body and needing to be redone, the bone not being strong enough to distract a year later, and there can also be a risk of the bones fusing at the TMJ site locking her jaw shut (bony ankylosis). I'm also not clear whether they would try to create a TMJ (temporo mandibular joint) during the same surgery, but I have heard this is very difficult to do and I'm really don't know whether anyone has been very successful at it.
The alternative option is to do the jaw distraction first although there's only one doctor at Cincinnati Children's Hospital who thinks he can do it. I was actually given his cell phone number by another parent (Judy) who asked him if I could call him to discuss my options. I called him on a Saturday morning at home and he was very generous with his time and we talked for a good 30 minutes or so. He said that he believes there is no reason to try and create a joint for these kids, that they will create their own joint where the mandible meets the skull bone and that it is adequate even though it doesn't look like a typical joint. He agreed with my concerns that jaw reconstructions are not highly successful and there are significant risks is that surgery. He has found a way to successfully distract kids with missing jaw bone in a way that other doctors perhaps have not wanted to try yet or do not believe is possible.
I am planning to have further consultations with him to ask more about possible risks of this surgery if it fails, etc. but right now, I am leaning towards this being the lowest risk surgery that, if successful, could lead to Faith being decannulated (getting her trach out) much sooner than the traditional route. If it fails, I'm pretty sure we can still go down the route of doing the bone graft and will have not really lost anything, other than putting Faith through an extra surgery, but I don't think it would fail entirely. I think it is more likely that he just wouldn't be able to gain enough length in her mandible. From there though, it could be that she would just need another distraction to gain more growth and length, or she could need to have the bone graft after all.
Anyway, our next step is to have a CT scan done of Faith's jaw and head again to send that to both Cincinnati and NYU and then consult with them both again to make a decision. If we go with Cincinnati, it could be very soon (he said he has done this surgery on newborns, so it would probably just be up to us as to how soon we want to do it).
Just wanted to share what I spend most of my free time thinking about!
Thanks for reading and please SOMEONE post a comment!! It's very easy! :)
Robin
For the bone graft or jaw reconstruction surgery, the doctors we have consulted have varied opinions about when to do the surgery, NYU says around 2-3 years old, CHOP (Children's Hosp of Philadelphia) says around 5, maybe 4, which although it doesn't sound like a big difference, it is so close to when she would be ready to start school that we are not thrilled about waiting that long. They want to wait because they want the rib bones to grow large enough to make the surgery more successful. In addition to the timing, it is a pretty invasive surgery and there can be problems with the bone getting reabsorbed by the body and needing to be redone, the bone not being strong enough to distract a year later, and there can also be a risk of the bones fusing at the TMJ site locking her jaw shut (bony ankylosis). I'm also not clear whether they would try to create a TMJ (temporo mandibular joint) during the same surgery, but I have heard this is very difficult to do and I'm really don't know whether anyone has been very successful at it.
The alternative option is to do the jaw distraction first although there's only one doctor at Cincinnati Children's Hospital who thinks he can do it. I was actually given his cell phone number by another parent (Judy) who asked him if I could call him to discuss my options. I called him on a Saturday morning at home and he was very generous with his time and we talked for a good 30 minutes or so. He said that he believes there is no reason to try and create a joint for these kids, that they will create their own joint where the mandible meets the skull bone and that it is adequate even though it doesn't look like a typical joint. He agreed with my concerns that jaw reconstructions are not highly successful and there are significant risks is that surgery. He has found a way to successfully distract kids with missing jaw bone in a way that other doctors perhaps have not wanted to try yet or do not believe is possible.
I am planning to have further consultations with him to ask more about possible risks of this surgery if it fails, etc. but right now, I am leaning towards this being the lowest risk surgery that, if successful, could lead to Faith being decannulated (getting her trach out) much sooner than the traditional route. If it fails, I'm pretty sure we can still go down the route of doing the bone graft and will have not really lost anything, other than putting Faith through an extra surgery, but I don't think it would fail entirely. I think it is more likely that he just wouldn't be able to gain enough length in her mandible. From there though, it could be that she would just need another distraction to gain more growth and length, or she could need to have the bone graft after all.
Anyway, our next step is to have a CT scan done of Faith's jaw and head again to send that to both Cincinnati and NYU and then consult with them both again to make a decision. If we go with Cincinnati, it could be very soon (he said he has done this surgery on newborns, so it would probably just be up to us as to how soon we want to do it).
Just wanted to share what I spend most of my free time thinking about!
Thanks for reading and please SOMEONE post a comment!! It's very easy! :)
Robin
Monday, August 18, 2008
Feeding Clinic Evaluation
It's been interesting to see Faith's progress with food. We started over a year ago after she passed a swallow study (meaning they saw her swallow and protect her airway from aspiration) to offer her some baby food at meals to taste and she seemed to go up and down in her level of interest in it. Overtime we slacked off as Faith seemed less interested in putting it in her mouth instead of everywhere else. In May, while Fred was away I took Anthony and Faith out to dinner at Red Robin and gave Faith a kids cup to play with and a small piece of ice from my glass. She was having fun putting the ice in her mouth and then it disappeared - I asked her where it was and she pointed to her throat, so I figured she swallowed it (it was really small, like the half the size of a dime and melting), so I gave her more and a few more times she ran her finger down her throat indicating she had swallowed it again. She was really excited about it, so I decided to start ramping up her eating again and she really has become much more interested and I have been able to see her swallow some baby food although it is still extremely small amounts (at most, MAYBE about a teaspoon's worth). I decided to have her evaluated at Children's Hospital of Denver feeding clinic to see if there is more we could be doing to take advantage of this new event. Basically I wanted to find out if the "experts" had any ideas of new things we could be doing to help Faith start swallowing better and make sure we aren't falling any further behind on the oral eating learning curve that she will eventually have to tackle.
Before the appointment, I had to fill out and mail a bunch of paperwork with Faith's medical history, her abilities, and do a 3 day journal of everything she ate (via G-Tube or orally). Then, they asked us to bring her favorite cup, plate, spoon 2 foods she likes and something she doesn't like. They had us (Faith, me, nurse Rachel, and Kim - Faith's Speech Lang. Pathologist) sit in a room facing a one-way mirror and feed her so they could observe her behavior. She really impressed Kim, Rachel and me - she was really excited about everything, from getting things out of a bag, to actually taking a BITE out of a chewy granola bar which she has never done before (well, Rachel told me she bit a graham cracker the week before). Of course as soon as she bit it off she leaned forward and let it all fall out of her mouth because she can't really do anything with it, but we were excited just to see her so interested in it. Then she tasted some applesauce and tried to drink some water, with most of it just running out of her mouth.
Anyway, the experts came in afterwards and weren't so excited about her biting the granola bar - they were concerned that it was a choking hazard and that we shouldn't be giving her things like that. Well, like I said that was the first time I've ever seen her take a bite of anything! I didn't give it to her to try and eat it, it was just to show her level of interest in it and let her taste it. They felt Faith's interest in food was great but that we (I) might be pushing too hard. They felt like due to her jaw anatomy that she is unable to move food to the back of her mouth with her tongue and prepare to swallow it. They also didn't like it when I used an eyedropper to squirt baby food to the back of Faith's mouth to help her practice swallowing because Faith made some faces that she didn't like it. They basically said to only allow her to feed herself and to taste liquids or meltable solids until she has had her first jaw distraction/reconstruction.
For the most part I agreed with everything they had to say, although I felt like they were being overly conservative. I was glad to hear they didn't think Faith was missing out on some important therapy but I also felt like I might hear something very different from a more aggressive clinic. In the end, I'm just nervous about letting too much time go by doing very little if a more aggressive approach would make it easier for her in the future. I understand it's a delicate balance and that being too aggressive could cause her to have significant aversions when she is older, but I see her making progress and I want to encourage her to do as much as she is comfortable with.
Thanks for listening,
Robin
Before the appointment, I had to fill out and mail a bunch of paperwork with Faith's medical history, her abilities, and do a 3 day journal of everything she ate (via G-Tube or orally). Then, they asked us to bring her favorite cup, plate, spoon 2 foods she likes and something she doesn't like. They had us (Faith, me, nurse Rachel, and Kim - Faith's Speech Lang. Pathologist) sit in a room facing a one-way mirror and feed her so they could observe her behavior. She really impressed Kim, Rachel and me - she was really excited about everything, from getting things out of a bag, to actually taking a BITE out of a chewy granola bar which she has never done before (well, Rachel told me she bit a graham cracker the week before). Of course as soon as she bit it off she leaned forward and let it all fall out of her mouth because she can't really do anything with it, but we were excited just to see her so interested in it. Then she tasted some applesauce and tried to drink some water, with most of it just running out of her mouth.
Anyway, the experts came in afterwards and weren't so excited about her biting the granola bar - they were concerned that it was a choking hazard and that we shouldn't be giving her things like that. Well, like I said that was the first time I've ever seen her take a bite of anything! I didn't give it to her to try and eat it, it was just to show her level of interest in it and let her taste it. They felt Faith's interest in food was great but that we (I) might be pushing too hard. They felt like due to her jaw anatomy that she is unable to move food to the back of her mouth with her tongue and prepare to swallow it. They also didn't like it when I used an eyedropper to squirt baby food to the back of Faith's mouth to help her practice swallowing because Faith made some faces that she didn't like it. They basically said to only allow her to feed herself and to taste liquids or meltable solids until she has had her first jaw distraction/reconstruction.
For the most part I agreed with everything they had to say, although I felt like they were being overly conservative. I was glad to hear they didn't think Faith was missing out on some important therapy but I also felt like I might hear something very different from a more aggressive clinic. In the end, I'm just nervous about letting too much time go by doing very little if a more aggressive approach would make it easier for her in the future. I understand it's a delicate balance and that being too aggressive could cause her to have significant aversions when she is older, but I see her making progress and I want to encourage her to do as much as she is comfortable with.
Thanks for listening,
Robin
Friday, August 15, 2008
Another video to share
Just wanted ro upload another video to share with everyone. This was taken in May also, so I really need to get something more recent up soon.
Love, Robin
Wednesday, July 30, 2008
Faith Talking
So I've promised for months I would upload some videos of Faith, and now I finally can do it pretty easily (I think). Please see if you can view this and let me know if you have any problems. I took this video in May of her being VERY vocal with her Passy Muir Valve (PMV)on. The PMV is a one-way valve that forces Faith to exhale through her mouth instead of her trach. That means the air goes across her vocal cords and she is able to make sounds more easily than when the air goes out through her trach before it gets to the vocal cords (although for Faith anyway, she has been quite good at forcing air past her trach even without the valve, but this makes it much easier for her).
Wednesday, June 18, 2008
Dr's appointments and getting ready for Spain!
So we had 3 doctors appointment in the last week. The first was with a nurse at the pediatric surgeon's office for Faith's G-tube button which has had a sore (they call it a Granuloma) that has never healed all the way since the first surgery after she was born. The nurse changed her button to a longer one and treated the granuloma again with silver nitrate and sent us home with more silver nitrate to keep treating it for the 10th time. She did show me that I wasn't going as deep as she was or leaving it on there as long, so I'm hoping MAYBE this time we can finally be successful.
The second appointment was with Dr. Guarin, Faith's pulmonologist. She is my favorite doctor and very talkative with us. She took a mucus culture of what Faith coughed up (I guess it's the same as a throat culture for someone without a trach) and then talked to me about trying another prescription, Singulair, to see if that might finally knock out the secretions and morning cough/congestion Faith has struggled with off and on for months now. I had hoped to show off how Faith is able to breathe both in and out of her mouth now, but when Dr. Guarin went to listen to her lungs Faith became extremely upset and cried uncontrollably and signed "no" to her. So we had to give up on that.
The third appointment was this past Monday with the GI (gastrointestinal) doctor for a simple weight check. Two months ago Faith's weight had jumped from the 25th percentile to the 60th and they wanted to make sure it wasn't continuing at that rate. Well it was - she is now in the 75-95th percentile which made me really frustrated. I wish they had tracked her more closely before it got this high. Anyway, they want to lower her calorie intake from 1000 cals to 900. That's fine. I also plan to start trying to introduce to homemade blended food (if I can find the time to start doing it!) and Fred and I want to get her off her nighttime drip as she gets all tangled up in all her various tubes at night and there have been enough mishaps where something got disconnected and we find her in the morning sleeping in a soggy wet mess or it causes her pulse ox monitor to quit working and we have to deal with it in the middle of the night. No fun.
Today, Dr. Guarin called me back with the results from the culture she took last week, Faith has an "abundant" colonization of pseudomonas growing in her trachea. Not great news, but also not very serious. So she wants to take her off her humidifier at night and let her sleep with just the artificial nose (HME) on her trach, which is great news and she wants us to start another prescription for 2 weeks - a Tobi nebulizer treatment 2x/day. Luckily the nurses can do it while they are there, and Fred will only need to do it on Sundays (because I'll be in Spain).
Yes, I am off to Spain!!! I leave Saturday morning and I can't wait! Mom, Dad, Terry and Sonya arrived on Monday and Leslie, Steve and Ali arrived this morning (assuming no more cancellations due to weather). I will be there until July 2nd, and will get home on the 3rd, just in time to spend the 4th of July weekend at home with Fred and the kids. Wish me luck with the travel arrangements, I'm a little nervous about it all going smoothly! I'm not worried about Fred taking care of both kids at all, he's a pro at it now, plus he'll have extra help during the days from nurses and his parents who are coming to visit while I'm gone.
Will write again when I get home.
Love to all,
Robin
The second appointment was with Dr. Guarin, Faith's pulmonologist. She is my favorite doctor and very talkative with us. She took a mucus culture of what Faith coughed up (I guess it's the same as a throat culture for someone without a trach) and then talked to me about trying another prescription, Singulair, to see if that might finally knock out the secretions and morning cough/congestion Faith has struggled with off and on for months now. I had hoped to show off how Faith is able to breathe both in and out of her mouth now, but when Dr. Guarin went to listen to her lungs Faith became extremely upset and cried uncontrollably and signed "no" to her. So we had to give up on that.
The third appointment was this past Monday with the GI (gastrointestinal) doctor for a simple weight check. Two months ago Faith's weight had jumped from the 25th percentile to the 60th and they wanted to make sure it wasn't continuing at that rate. Well it was - she is now in the 75-95th percentile which made me really frustrated. I wish they had tracked her more closely before it got this high. Anyway, they want to lower her calorie intake from 1000 cals to 900. That's fine. I also plan to start trying to introduce to homemade blended food (if I can find the time to start doing it!) and Fred and I want to get her off her nighttime drip as she gets all tangled up in all her various tubes at night and there have been enough mishaps where something got disconnected and we find her in the morning sleeping in a soggy wet mess or it causes her pulse ox monitor to quit working and we have to deal with it in the middle of the night. No fun.
Today, Dr. Guarin called me back with the results from the culture she took last week, Faith has an "abundant" colonization of pseudomonas growing in her trachea. Not great news, but also not very serious. So she wants to take her off her humidifier at night and let her sleep with just the artificial nose (HME) on her trach, which is great news and she wants us to start another prescription for 2 weeks - a Tobi nebulizer treatment 2x/day. Luckily the nurses can do it while they are there, and Fred will only need to do it on Sundays (because I'll be in Spain).
Yes, I am off to Spain!!! I leave Saturday morning and I can't wait! Mom, Dad, Terry and Sonya arrived on Monday and Leslie, Steve and Ali arrived this morning (assuming no more cancellations due to weather). I will be there until July 2nd, and will get home on the 3rd, just in time to spend the 4th of July weekend at home with Fred and the kids. Wish me luck with the travel arrangements, I'm a little nervous about it all going smoothly! I'm not worried about Fred taking care of both kids at all, he's a pro at it now, plus he'll have extra help during the days from nurses and his parents who are coming to visit while I'm gone.
Will write again when I get home.
Love to all,
Robin
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