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Jan 30, 2009
Jan 28, 2009
Hearing Loss
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Today Ainsley had a behavioral hearing test and I realized that unfortunately I didn't really know much about hearing loss. Here is some info I got from a website:
The early identification of hearing loss permits the initiation of
treatment and rehabilitation of the hearing-impaired child at a very young age. The child can then learn more normal speech skills when hearing loss is identified early and intervention begins.
Hearing loss can range from a mild impairment to profound loss. Many people think that hearing is only graded as normal or deaf. They may also think that the child is hearing normally if he or she is responding to sounds and voices. However, there are many subtle gradations between normal hearing and deafness and a child's hearing loss may not be apparent.
For example, it is common for a child with moderate hearing loss to develop speech and language and yet miss over half of what is being said. A child in this situation will have a distinct disadvantage in development and learning and will often reach a point where advancement stops unless the hearing loss is detected and treatment begins.
Ainsley is at risk for problems with speech and language already because of her trach. The fact that airflow happens through the trach means that air does not pass through the vocal cords so she is unable to make sound unless she is wearing a special speaking valve, a Passey-Muir Valve (or PMV for short). But she also has a malformation of the cerebellum, the part of the brain which controls, among other things, the processing of language. Two big strikes against Ainsley for the normal development of language skills.
The hospital did a hearing screening when she was inpatient and the results were within normal. They recommended a behavioural test at a later date. When Ainsley was 9 months old we tried but she was uninterested in turning toward the sound and was far more interested in watching the person who was supposed to be keeping her attention so her head would stay in the forward position, until a sound was made to either side. So we were told to come back when we felt she would developmentally be able to perform the test.
We knew she could hear us. She can even understand certain familiar commands such as no, come, give me, hi, and bye-bye. But she is far far behind where she should be for her age. I assumed the fact that she could hear us meant she could hear normally. Little did I know that there could be losses that make some of the sounds drop out, making language very difficult to understand. Now I am concerned because this would explain why some things she picks up quickly and other things, especially verbal commands, she doesn't.
She was unable to perform the test again today. This time she started to cry every time the sound was played about half way through the test. It started moments after the helper blew some bubbles into her face and they popped. It's almost as if it startled her and she realized "A scary weird rabbit is drumming and lights flash every time there is a weird voice or a strange sound? I'm locked in a padded room without my mom? What the hell is going on here?" She wasn't having it. No matter what we did. Even when I came in the room, held her or replaced the bubble blowing girl as the distractor.
The audiologist, who unfortunately had a profound hearing loss herself, was difficult to understand and communicate with. I left not being able to get answers to the questions I had partially because of that and also because we'd run out of time. She recommended we reschedule for 1-3 months out. We had already had to reschedule once because she had a ruptured eardrum. And this made the second failed test.
In addition at the beginning of the test she placed some special earplugs in to measure her eardrum function. The response was somewhat flat. The last time she'd been tested the result was the same, but there seemed to be fluid in her ears then. Now that we know there is no fluid I am very concerned about this finding and I want answers.
So when I expressed my concern at rescheduling, since we have no idea if she'll be able to perform the test at the third attempt either, the audiologist suggested a BAER under anesthesia. I rescheduled Ainsley's airway scope and salivary gland botox procedure so that she could also have a BAER at the same time and avoid a second anesthesia. That puts the scope into mid-March. More waiting. What's new. Over two years into this journey to Holland I am still not any better at waiting.
As I drive home with our nurse my head is reeling with the realization of what may be going on. So later I checked Ainsley's medical binder and found the report from her inpatient evaluation and found that it was, in fact, a BAER that was done. So now I am questioning whether a second BAER is going to give us the information we need. I have a call into the department and hope to hear back before the weekend.
My heart is sinking thinking there is a chance we missed something as important as a hearing loss. Please think positive thoughts for Ainsley while we wait for answers.
Jan 25, 2009
Thoughts on Breastfeeding
I wrote this post planning to save it in my drafts without publishing it. Unfortunately my laptop is a little overly sensitive and somehow I accidentally published it while I was typing. This is my 102nd post and I've never had that happen. Of course it would happen the one time I didn't intend to publish. I deleted that post but any of you that subscribe to the blog via Atom may have received it in e-mail form half way written. So I figure I may as well send out the completed version. I warn that this is a personal post and very long. More intended for the day I write a book than a cute quick blog post. Although my blog posts are seldom quick or all that cute. If you are squeamish about breastfeeding you probably won't want to read this.
We've had a stomach bug around here and as a result Steve went to bed early. I decided to spend a little time with Ainsley by myself. The other kids were asleep. First she was laying in my lap and she gestured toward my water. She surprised me by drinking quite a lot. She has done that on a handful of occasions. I can never figure out why some days she will eagerly drink from a glass and then other days but most days will refuse even a sip. Ah, the frustrations. Then we played pat-a-cake which basically means I move her hands and do the movements. Then she started reaching toward the drawer of my nightstand. I gave her the tiny tube of Lansinoh which she likes to chew on. We played with a beaded bracelet that Evie made me that I keep in the drawer. It was so cool to watch her turn it so she could slowly place it over my hand. She was really examining it. Then she'd take it off and put it on her own wrist. Off and on. Back and forth. So simple. Yet it was really nice. Then she lunged over me to get other things from the drawer. Quite rascally, really. But as I realized it was late I asked her to lay down even though I was enjoying this relaxing time together alone.
She was straddling my legs so she was laying her head on my chest. Every few seconds she would pop her head back up and I would ask her to lay down again. This is a familiar game that we play almost every time I try to get her lay quietly in my arms. I often feel as though she resists close bodily contact. Especially in proximity to my breasts. We gave up trying to nurse long ago but I think the memories are still there somewhere buried deep.
In the hospital when Ainsley was born she had a really good suck reflex. She would suck on her endotracheal tube (the breathing tube going down her throat that she was intubated with). The nurses would give her a pacifier and she would suck on that WITH the endotracheal tube in place. That's a challenging thing to do, no doubt, but no kidding she would. On the rare occasions that we could hold her she would suck on our gloved finger for long periods of time until I would be dying to pee. I hated to give her back to the nurse. It was SO difficult to get positioned with all the wires and tubes connected to her.
When she got the trach it was GREAT! Her mouth was free and she would suck that pacifier all day and night. Or if I happened to be there at the hospital, my finger. There was one time that she was sucking on my finger and my nail (which I usually cut) had gotten longer and she lunged and my fingernail stabbed her on the roof of her mouth. She then would not suck on my finger anymore, or at least for a long time. The girl has a memory.
While the endotracheal tube was in she could not eat. And she'd had that tube in for 5 weeks by the time she got her trach. As soon as she got the trach they tested her swallow with a video-fluoroscopic swallow study and detected micro-aspiration. Very small quantities of formula getting into the airway that could harm her lungs. So my worst fear came true. I would not be able to nurse her and she would remain fed with a tube through her nose that led to her stomach. Despite have a child in the NICU and two other young children at home I had been pumping my breast milk around the clock to maintain my milk supply so I could eventually nurse her.
I had breastfed both of my other children with good success. I was dedicated and pumped while my first child was in daycare and I worked despite the semi-disapproval of my employer. I continued to nurse her until I became pregnant with my second child. She longed to continue but I just didn't think my body could handle it. When Adrian was born he did well nursing. Unlike Evie he would take a pacifier and so I was less of a human pacifier than I was with her. But both children had a very strong desire to suck as many kids do. With Adrian we had to take the pacifier away on his third birthday and it was hard on him.
Like her brother and sister Ainsley had a strong drive to suck. I wanted to nurse her and hoped that eventually she would be given the approval to eat orally. I was given the approval to dry nurse, meaning I could nurse her after I'd pumped so she wouldn't get milk. And I found she loved that. She would root just like any baby. Sometimes when I was holding her I would find her trying to latch on and that she'd slobbered all over my shirt. Not a great look.
Eventually we got to bring her home from the hospital. December 22, 2006 was the date, just over two months after her birth. I continued to pump my milk and dry nurse despite the fact that it was exhausting. I clung to the hope that eventually things would change. Since we didn't have an exact cause for her airway troubles I naively hoped that they would resolve, the trach would come out, and she would magically be able to nurse. That did not happen. But I did notice that sometimes after dry-nursing for long periods of time she would actually get a little bit of milk. And she even seemed to like it and be able to swallow it.
This was exciting and bumped us into the next phase of our journey as we passed into the stage of working with feeding therapists and repeating swallow studies. By the time this happened her airway had become swollen completely shut at the level of her vocal cords. And this allowed her to pass a swallow-study, albeit not quite fairly, due to the fact that she could not aspirate formula because the swelling blocked passage to the lungs. I was allowed to wet-nurse her as tolerated with the approval of a very experienced feeding therapist at Children's Hospital.
Ainsley did fairly well. She liked to nurse but just couldn't take large quantities of milk. I dutifully tried to use an HME (for humidification of her lungs) while she nursed. Eventually I found a Tilson trach guard worked pretty well to keep the trach from being blocked by my body. But it took some practice for me to not be afraid I would accidentally suffocate her by covering her only source of air. All this time she was nursing with an NG (naso-gastric feeding) tube. The fact that she could nurse some gave me such hope that if maybe the NG tube came out of her nose and throat she would be able to do better and leave that feeding tube behind.
I tried even harder. I rented a breastfeeding scale so that I could weigh her before and after a feeding to know how much she was getting. Of course she hated the scale. She would occasionally take an ounce or two but not nearly enough to sustain her weight. I would get frustrated with her. She would cry. Slowly breastfeeding was becoming un-fun and the more I would push the more she would resist.
After giving it my best shot I realized that it would be a long time before she could feed herself. So we proceeded to get her a gastrostomy surgically placed into her stomach so she could be fed by a tube without it having to run through her nose, mouth, and the swollen airway tissue. She was vomiting too and we hoped that maybe all these things would be helped by eliminating this foreign object. I knew I would be happy not to have to reinsert the tube any time she accidentally pulled it out. I knew I would not miss having to tape it to her sweet little cheek. But the idea of cutting into her soft little belly killed me. Yet I knew it had to be done.
She was happy not to have the tube on her face and we anxiously watched for signs that it's removal would help her swallow, would help her airway, would stop her from vomiting. But it did not. We took a break from nursing while she recovered from the gastrostomy surgery. And again the next month when she had her second cranial reconstruction. I was so terrified to hurt her with the massive trauma to her head and the stitches that went from ear to ear. These breaks did not help our breastfeeding efforts. She did continue to nurse but she also started to get teeth. Lots of beautiful teeth. Looking back I think this is where things went bad. One too many times she bit me and didn't like the reaction. With her cognitive and motor delays I think she just didn't know what to do or even understand that she was hurting me. I got nervous and had a hard time relaxing and trusting her.
Things were further complicated because I was working in our home with a feeding therapist who wasn't particularly experienced. Not that there are a lot of occupational therapists doing home visits who know much about breastfeeding an infant with a trach and a cerebellum malformation that effects all motor skills. Many times I got the feeling she didn't really think I should be nursing. I frequently felt confused. The swallow studies showed she was at risk for aspiration yet we'd been given the okay to feed. She was able to nurse yet there was clearly a problem of some kind. The therapist wanted to move forward to each new level of feeding, introducing textures and hard munchables even though Ainsley was barely able to handle smooth purees without gagging.
So about the time of her first birthday she nursed for the last few times. There was one occasion when she had a high fever that she nursed for comfort for quite awhile. It gave me such hope but it was false hope. It was not to be. I finally conceded defeat and stopped pumping. It broke my heart to know that it was over. I still would try to hold her close in the cradled position so I could pretend. I felt like in some way that if I could nurse her and do that one thing that mothers and babies have done for thousands of years that somehow that would make up for all the terrible things we'd been through: The time separated in the hospital, the dozens of doctors, the surgeries, the comments from family and strangers, the knowledge that our lives would never be as they were before. When I held her close and nursed her I could almost feel like I had the child I'd been expecting. It felt like it did with my other children. And I loved sharing that sense of peace as they drifted off into a blissful sleep in their mother's arms. And that's why it hurt so much when that too was taken.
Just holding her near me seemed to make her uncomfortable. Many times I could see that she wanted to nurse but didn't trust herself or me. She wanted to so badly but was afraid and so she learned over time not to even be held in that position. So I was surprised when tonight after all this time that she moved herself from straddling my legs with her head on my chest, into a cradled position. And then she put her fingers in her mouth and explored her tongue and lips. Even biting her finger very very gently. I could see in her eyes that she was processing thoughts. After a few minutes I lifted my pajama top just to see what she would do and she brought her lips up to my nipple for a few seconds. All of a sudden all the old feelings and grief came back over me and I had to fight back tears I thought I'd long stopped shedding over this. I let her lay there in my arms without moving and hoped that somehow if I could relax and let her be in control she could simply enjoy being close to me. And just maybe this could lead to her being more comfortable being held. I enjoyed every moment as she slowly drifted off to sleep in my arms.
.....And then I took her to the crib and hooked her up to her blood-oxygen level monitor, like every other night since she was born, so that she is safe while she sleeps and it will alarm if anything goes wrong.
We've had a stomach bug around here and as a result Steve went to bed early. I decided to spend a little time with Ainsley by myself. The other kids were asleep. First she was laying in my lap and she gestured toward my water. She surprised me by drinking quite a lot. She has done that on a handful of occasions. I can never figure out why some days she will eagerly drink from a glass and then other days but most days will refuse even a sip. Ah, the frustrations. Then we played pat-a-cake which basically means I move her hands and do the movements. Then she started reaching toward the drawer of my nightstand. I gave her the tiny tube of Lansinoh which she likes to chew on. We played with a beaded bracelet that Evie made me that I keep in the drawer. It was so cool to watch her turn it so she could slowly place it over my hand. She was really examining it. Then she'd take it off and put it on her own wrist. Off and on. Back and forth. So simple. Yet it was really nice. Then she lunged over me to get other things from the drawer. Quite rascally, really. But as I realized it was late I asked her to lay down even though I was enjoying this relaxing time together alone.
She was straddling my legs so she was laying her head on my chest. Every few seconds she would pop her head back up and I would ask her to lay down again. This is a familiar game that we play almost every time I try to get her lay quietly in my arms. I often feel as though she resists close bodily contact. Especially in proximity to my breasts. We gave up trying to nurse long ago but I think the memories are still there somewhere buried deep.
In the hospital when Ainsley was born she had a really good suck reflex. She would suck on her endotracheal tube (the breathing tube going down her throat that she was intubated with). The nurses would give her a pacifier and she would suck on that WITH the endotracheal tube in place. That's a challenging thing to do, no doubt, but no kidding she would. On the rare occasions that we could hold her she would suck on our gloved finger for long periods of time until I would be dying to pee. I hated to give her back to the nurse. It was SO difficult to get positioned with all the wires and tubes connected to her.
When she got the trach it was GREAT! Her mouth was free and she would suck that pacifier all day and night. Or if I happened to be there at the hospital, my finger. There was one time that she was sucking on my finger and my nail (which I usually cut) had gotten longer and she lunged and my fingernail stabbed her on the roof of her mouth. She then would not suck on my finger anymore, or at least for a long time. The girl has a memory.
While the endotracheal tube was in she could not eat. And she'd had that tube in for 5 weeks by the time she got her trach. As soon as she got the trach they tested her swallow with a video-fluoroscopic swallow study and detected micro-aspiration. Very small quantities of formula getting into the airway that could harm her lungs. So my worst fear came true. I would not be able to nurse her and she would remain fed with a tube through her nose that led to her stomach. Despite have a child in the NICU and two other young children at home I had been pumping my breast milk around the clock to maintain my milk supply so I could eventually nurse her.
I had breastfed both of my other children with good success. I was dedicated and pumped while my first child was in daycare and I worked despite the semi-disapproval of my employer. I continued to nurse her until I became pregnant with my second child. She longed to continue but I just didn't think my body could handle it. When Adrian was born he did well nursing. Unlike Evie he would take a pacifier and so I was less of a human pacifier than I was with her. But both children had a very strong desire to suck as many kids do. With Adrian we had to take the pacifier away on his third birthday and it was hard on him.
Like her brother and sister Ainsley had a strong drive to suck. I wanted to nurse her and hoped that eventually she would be given the approval to eat orally. I was given the approval to dry nurse, meaning I could nurse her after I'd pumped so she wouldn't get milk. And I found she loved that. She would root just like any baby. Sometimes when I was holding her I would find her trying to latch on and that she'd slobbered all over my shirt. Not a great look.
Eventually we got to bring her home from the hospital. December 22, 2006 was the date, just over two months after her birth. I continued to pump my milk and dry nurse despite the fact that it was exhausting. I clung to the hope that eventually things would change. Since we didn't have an exact cause for her airway troubles I naively hoped that they would resolve, the trach would come out, and she would magically be able to nurse. That did not happen. But I did notice that sometimes after dry-nursing for long periods of time she would actually get a little bit of milk. And she even seemed to like it and be able to swallow it.
This was exciting and bumped us into the next phase of our journey as we passed into the stage of working with feeding therapists and repeating swallow studies. By the time this happened her airway had become swollen completely shut at the level of her vocal cords. And this allowed her to pass a swallow-study, albeit not quite fairly, due to the fact that she could not aspirate formula because the swelling blocked passage to the lungs. I was allowed to wet-nurse her as tolerated with the approval of a very experienced feeding therapist at Children's Hospital.
Ainsley did fairly well. She liked to nurse but just couldn't take large quantities of milk. I dutifully tried to use an HME (for humidification of her lungs) while she nursed. Eventually I found a Tilson trach guard worked pretty well to keep the trach from being blocked by my body. But it took some practice for me to not be afraid I would accidentally suffocate her by covering her only source of air. All this time she was nursing with an NG (naso-gastric feeding) tube. The fact that she could nurse some gave me such hope that if maybe the NG tube came out of her nose and throat she would be able to do better and leave that feeding tube behind.
I tried even harder. I rented a breastfeeding scale so that I could weigh her before and after a feeding to know how much she was getting. Of course she hated the scale. She would occasionally take an ounce or two but not nearly enough to sustain her weight. I would get frustrated with her. She would cry. Slowly breastfeeding was becoming un-fun and the more I would push the more she would resist.
After giving it my best shot I realized that it would be a long time before she could feed herself. So we proceeded to get her a gastrostomy surgically placed into her stomach so she could be fed by a tube without it having to run through her nose, mouth, and the swollen airway tissue. She was vomiting too and we hoped that maybe all these things would be helped by eliminating this foreign object. I knew I would be happy not to have to reinsert the tube any time she accidentally pulled it out. I knew I would not miss having to tape it to her sweet little cheek. But the idea of cutting into her soft little belly killed me. Yet I knew it had to be done.
She was happy not to have the tube on her face and we anxiously watched for signs that it's removal would help her swallow, would help her airway, would stop her from vomiting. But it did not. We took a break from nursing while she recovered from the gastrostomy surgery. And again the next month when she had her second cranial reconstruction. I was so terrified to hurt her with the massive trauma to her head and the stitches that went from ear to ear. These breaks did not help our breastfeeding efforts. She did continue to nurse but she also started to get teeth. Lots of beautiful teeth. Looking back I think this is where things went bad. One too many times she bit me and didn't like the reaction. With her cognitive and motor delays I think she just didn't know what to do or even understand that she was hurting me. I got nervous and had a hard time relaxing and trusting her.
Things were further complicated because I was working in our home with a feeding therapist who wasn't particularly experienced. Not that there are a lot of occupational therapists doing home visits who know much about breastfeeding an infant with a trach and a cerebellum malformation that effects all motor skills. Many times I got the feeling she didn't really think I should be nursing. I frequently felt confused. The swallow studies showed she was at risk for aspiration yet we'd been given the okay to feed. She was able to nurse yet there was clearly a problem of some kind. The therapist wanted to move forward to each new level of feeding, introducing textures and hard munchables even though Ainsley was barely able to handle smooth purees without gagging.
So about the time of her first birthday she nursed for the last few times. There was one occasion when she had a high fever that she nursed for comfort for quite awhile. It gave me such hope but it was false hope. It was not to be. I finally conceded defeat and stopped pumping. It broke my heart to know that it was over. I still would try to hold her close in the cradled position so I could pretend. I felt like in some way that if I could nurse her and do that one thing that mothers and babies have done for thousands of years that somehow that would make up for all the terrible things we'd been through: The time separated in the hospital, the dozens of doctors, the surgeries, the comments from family and strangers, the knowledge that our lives would never be as they were before. When I held her close and nursed her I could almost feel like I had the child I'd been expecting. It felt like it did with my other children. And I loved sharing that sense of peace as they drifted off into a blissful sleep in their mother's arms. And that's why it hurt so much when that too was taken.
Just holding her near me seemed to make her uncomfortable. Many times I could see that she wanted to nurse but didn't trust herself or me. She wanted to so badly but was afraid and so she learned over time not to even be held in that position. So I was surprised when tonight after all this time that she moved herself from straddling my legs with her head on my chest, into a cradled position. And then she put her fingers in her mouth and explored her tongue and lips. Even biting her finger very very gently. I could see in her eyes that she was processing thoughts. After a few minutes I lifted my pajama top just to see what she would do and she brought her lips up to my nipple for a few seconds. All of a sudden all the old feelings and grief came back over me and I had to fight back tears I thought I'd long stopped shedding over this. I let her lay there in my arms without moving and hoped that somehow if I could relax and let her be in control she could simply enjoy being close to me. And just maybe this could lead to her being more comfortable being held. I enjoyed every moment as she slowly drifted off to sleep in my arms.
.....And then I took her to the crib and hooked her up to her blood-oxygen level monitor, like every other night since she was born, so that she is safe while she sleeps and it will alarm if anything goes wrong.
Jan 23, 2009
We Got A Cap!
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A crowded car driving carpool to school and then the appointment. Thankfully her trach didn't need suctioning during the 5 minute drive there, she was able to wait until after the other 4 kids got out of the car. Sheesh.
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Waiting, always waiting.
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Ainsley wearing her cap for the first time AND getting scoped.
A snapshot of her airway (and epiglottis) from the scope.
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The CAP,WOOHOO!
The appointment today with Ainsley's new otolaryngologist went pretty well. We were afraid he may just scratch his head like he did the day he saw her in the NICU. She wasn't his patient then. Today he was funny, actually sang Ainsley songs, was attentive and thorough. He gave me a bit of a hard time about taking her to Cincinnati last April, asking how much I thought that cost and did it make any difference in managing her care. When I replied that the FEES was more informative than a VSS and that they did a chest CT and found bronchiectasis (irreversable lung disease) last April, and that they offered to do a saliva gland removal (which we opted not to get) I think he realized that perhaps it wasn't a complete waste of time and money. Oops. And I didn't even get a chance to mention the Impedance Probe Test which was more conclusive than the PH probe at determining the level of reflux she had. And there were other benefits but I won't go into that again right now.
We were thrilled to be able to tell him, that with the exception of when she's in the car, sleeping, or when I can't get our nurse to follow my instructions, that she is wearing the PMV almost the entire day. He asked about capping and I reported that she has been able to get breaths when the trach is covered, that she has been tolerating a slow trach change much better (best when sitting as opposed to laying flat on her back which is still not so great). He covered her trach to see for himself. She did really well, breathing with the trach covered for half a minute which seems to drag on forever in this situation. So he orders a cap (a cover that fits over the end of the trach).
The purpose of a cap is to cover the trach completely so that no air goes through the trach tube and it is rendered inactive. All breathing then takes place through the nose and mouth just like you or I would. Although the tube is still in the trachea taking up a small amount of space. For Ainsley the plan has always been to go from full time PMV use to capping and then hopefully decannulation (removal of the tracheostomy tube). Our new otolaryngologist agreed with others that due to her airway we probably don't want to try just pulling the tube out and she needs to work up to wearing the cap full time. Like the adjustment to the PMV this is likely to take time. Hopefully less time than the adjustment to a PMV, but probably many months as she gets used to breathing a new way.
We chose to do the scope with the cap on. Not the best combination. Being capped for the first time while a camera is being put down your nose. You can see in the picture how thrilled she is. But I think it gives him a better picture of what her airway would be doing without the trach. We had to remove and replace it once for her to catch her breath. The scope revealed that the airway swelling is a little better. Yet you can see from the picture that it is still swollen. I think because it had gone down some he could see better. He felt that her larynx is a little squished together and that there is some degree of laryngeal stenosis. I think it's still pretty hard to tell since the tissue is swollen. He cautioned us that kids with cerebellum issues can sometimes have sleep apnea even if they do well capped when awake. This means she will probably require the oh-so dreaded sleep study before attempting decannulation.
So where that leaves us now is that the swelling that was assumed to be from reflux, was only partly from reflux. As today marks 3 months since her Nissen surgery and the swelling is not completely gone. Or perhaps it will take longer than 3 months to go away but the more time that passes since the surgery the less hopeful I am that reflux was the answer. Clearly it helped but it was not the magic ticket. I'm still suspicious that the swelling could be from irritation of the area rubbing together since it's so swollen. Not much you can do about that other than wait. The other possibility is that it is from aspiration of saliva. I have noticed that when she's wearing her PMV she drools more. So we have scheduled Botox injections to the salivary glands. This has been successful for some kids on the trach forum. And it's temporary (as opposed to surgical removal that was offered by the Cincinnati team). If it doesn't help then we just won't do it again. He will do that in the operating room under anesthesia at the same time that he does a microscopic laryngoscopy and bronchoscopy, which he agreed to do. Yea!
I'd have loved to have seen that the swelling was gone and her airway looked normal. But realistically I knew that was unlikely. The great news is that we got to bring home a cap, we like our new doctor and we have the MLB and Botox scheduled for 2/26. Not a bad appointment.
Now let the capping fun begin!
Jan 21, 2009
Ptosis Surgery Update
As I'm sure you've noticed, Ainlsey has droopy eyelids, a condition called ptosis, as well as a downward slant to her eyes. These conditions were present at birth but to a lesser degree and worsened after her second cranial reconstruction when she was 9 months old. In December we followed up with Ainsley's ophthalmologist (and surgeon.) For the details of that appointment see my prior blog post: http://ainsleyrae.blogspot.com/2008/12/eye-appointment-ptosis-follow-up.html A few weeks later we met with Ainsley's cranio-facial plastic surgeon. Unlike the eye doctor who was not sure, he thought there should be enough brow bone to anchor the frontalis sling to. However, when asked, he suggested a second opinion with another eye plastic surgeon that he works with on complex cases like Ainsley's.
We were fortunate that the second surgeon had a cancellation and we were able to get in to be seen today. This issue has been on my mind, especially after the recent follow-up appointments, so I was thankful to be able to meet with him in order to get clarity in my mind of how this was going to play out down the road. We were warned that he does a lot of plastics work and not to let that put us off. I admit after viewing his website http://www.allurecosmeticsurgery.com/aboutdrsires.html I was a bit concerned. The idea of taking my daughter to a surgeon whose specialty seems to be reversing the aging appearance of older ladies left me a bit uncomfortable. The fact that he was listed as one of the best doctors in America and the Seattle area helped ease my mind as I prepared myself mentally for this appointment. Since the appointment was made, we went, and I'm glad we did. He was knowledgeable, personable and professional. And he had a different idea of how to help Ainsley.
This surgeon suggested cutting the tarsus in half and re-using that tissue to "prop up" the corners of her lower lids along with canthopexies (tightening of the lateral canthal tendons) . He calls it a tarsal switch procedure. He thinks it is less likely to fail over time than the frontalis sling operation. The eye pretty much reaches mature size sometime between ages 3-4. So he said he could perform the surgery any time after her 3rd birthday. The other surgeon wanted to wait until she was 4-5 years of age (if there was enough bone, if not then later). I am pleased at the idea of doing the surgery sooner rather than later. However, the first surgeon cautioned against any surgeon who would be willing to operate sooner. I'm not sure where this leaves us. I do believe the first surgeon also mentioned surgery to the tarsus as a possibility depending on what muscle is there, but that was long ago, as he seems to believe the sling is the way to go. Perhaps we should discuss it with him although he did not want to see Ainsley for a year.
When the first surgeon saw Ainsley at birth and said he was not worried about her eyes, that he could make them look normal, I clung to that. Clearly it is not as easy as he made it sound. At least now it seems as though we will not have to wait to do surgery until potentially Ainsley had a brow prosthetic at age 8. That is a relief. That would have been just too long to wait. The second surgeon said her eyes may not look as "open" as ours even after the surgery. And since her eyes are somewhat wide set that her eyes will always have a slightly different appearance. Her eyes will probably not ever look completely normal. Of course the first surgeon would agree. I'm finally coming to realize that it would be best if I just expect that her eyes will never look "normal". No room for disappointment that way. Although I'd love to be proven wrong. Mostly I hope they can make enough of an improvement that she doesn't have to work so hard to lift her lids. That we can see her eyes more so we can read her emotions and comprehension more easily. And that strangers will stop commenting on how sleepy she looks when we are out and about. No matter what she will always be beautiful to me.
We were fortunate that the second surgeon had a cancellation and we were able to get in to be seen today. This issue has been on my mind, especially after the recent follow-up appointments, so I was thankful to be able to meet with him in order to get clarity in my mind of how this was going to play out down the road. We were warned that he does a lot of plastics work and not to let that put us off. I admit after viewing his website http://www.allurecosmeticsurgery.com/aboutdrsires.html I was a bit concerned. The idea of taking my daughter to a surgeon whose specialty seems to be reversing the aging appearance of older ladies left me a bit uncomfortable. The fact that he was listed as one of the best doctors in America and the Seattle area helped ease my mind as I prepared myself mentally for this appointment. Since the appointment was made, we went, and I'm glad we did. He was knowledgeable, personable and professional. And he had a different idea of how to help Ainsley.
This surgeon suggested cutting the tarsus in half and re-using that tissue to "prop up" the corners of her lower lids along with canthopexies (tightening of the lateral canthal tendons) . He calls it a tarsal switch procedure. He thinks it is less likely to fail over time than the frontalis sling operation. The eye pretty much reaches mature size sometime between ages 3-4. So he said he could perform the surgery any time after her 3rd birthday. The other surgeon wanted to wait until she was 4-5 years of age (if there was enough bone, if not then later). I am pleased at the idea of doing the surgery sooner rather than later. However, the first surgeon cautioned against any surgeon who would be willing to operate sooner. I'm not sure where this leaves us. I do believe the first surgeon also mentioned surgery to the tarsus as a possibility depending on what muscle is there, but that was long ago, as he seems to believe the sling is the way to go. Perhaps we should discuss it with him although he did not want to see Ainsley for a year.
When the first surgeon saw Ainsley at birth and said he was not worried about her eyes, that he could make them look normal, I clung to that. Clearly it is not as easy as he made it sound. At least now it seems as though we will not have to wait to do surgery until potentially Ainsley had a brow prosthetic at age 8. That is a relief. That would have been just too long to wait. The second surgeon said her eyes may not look as "open" as ours even after the surgery. And since her eyes are somewhat wide set that her eyes will always have a slightly different appearance. Her eyes will probably not ever look completely normal. Of course the first surgeon would agree. I'm finally coming to realize that it would be best if I just expect that her eyes will never look "normal". No room for disappointment that way. Although I'd love to be proven wrong. Mostly I hope they can make enough of an improvement that she doesn't have to work so hard to lift her lids. That we can see her eyes more so we can read her emotions and comprehension more easily. And that strangers will stop commenting on how sleepy she looks when we are out and about. No matter what she will always be beautiful to me.
Jan 15, 2009
Super Scare
Normally I don't drive anywhere with Ainsley. We go to and from "preschool" and that's it. I schedule doctors appointments when we have a nurse to sit in the back seat with her. And I do my grocery shopping, fulfil our carpool commitment and run errands on those days too. Driving and trachs don't mix. But things were much worse when she needed a lot of suctioning and would vomit if left to cough it out. Since things have been so much better lately I thought after school today I'd drive to a shoe store a friend had told me about since it's pretty close to Ainsley's school and the shoes I'd put on her today wouldn't stay on.
Funny just today I said to Ainsley's speech therapist that she's been wearing the PMV all day but not in the car because I'm worried she'll pull it off and pull the trach out. So instead I put a Portex HME without any filters to keep her from splattering the car with secretions. We use one without filters because she doesn't like to wear an HME and I don't want her taking it off while driving.
Well unfortunately she pulled on it anyway. Even though they are fairly easy to get off she pulled at an angle and pulled the trach out. I heard her making some weird noises, looked in the rear-view mirror and saw the cannula and a very startled look on her face! OMG! I ran a red light making a right turn into a load zone, put on my hazards and jumped out of the car. Thank God I wasn't on the freeway. Luckily the very tip was still in the hole so without really thinking I pulled the trach away from her neck (the velcro ties were still on and secure) and tried to slide it sideways back in. It didn't quite look right but with a little wiggle it went it and it could be adjusted so it was straight again. In hind sight I probably should have undone the tie so the trach was free to be inserted straight rather than at an angle but then it probably would have come all the way out and I would have had to put it in without the obturator. Amazingly once it was back in things were totally normal. She didn't turn blue and there was no bleeding. I was so worried that perhaps I'd hit her trachea with the cannula by putting the trach in at a strange angle.
Then I bawled my eyes out for a minute and then went and got my girl some shoes. Now I need a glass of wine, or three.
Funny just today I said to Ainsley's speech therapist that she's been wearing the PMV all day but not in the car because I'm worried she'll pull it off and pull the trach out. So instead I put a Portex HME without any filters to keep her from splattering the car with secretions. We use one without filters because she doesn't like to wear an HME and I don't want her taking it off while driving.
Well unfortunately she pulled on it anyway. Even though they are fairly easy to get off she pulled at an angle and pulled the trach out. I heard her making some weird noises, looked in the rear-view mirror and saw the cannula and a very startled look on her face! OMG! I ran a red light making a right turn into a load zone, put on my hazards and jumped out of the car. Thank God I wasn't on the freeway. Luckily the very tip was still in the hole so without really thinking I pulled the trach away from her neck (the velcro ties were still on and secure) and tried to slide it sideways back in. It didn't quite look right but with a little wiggle it went it and it could be adjusted so it was straight again. In hind sight I probably should have undone the tie so the trach was free to be inserted straight rather than at an angle but then it probably would have come all the way out and I would have had to put it in without the obturator. Amazingly once it was back in things were totally normal. She didn't turn blue and there was no bleeding. I was so worried that perhaps I'd hit her trachea with the cannula by putting the trach in at a strange angle.
Then I bawled my eyes out for a minute and then went and got my girl some shoes. Now I need a glass of wine, or three.
Jan 12, 2009
Craniofacial Appointment
We had follow-up appointments with the cranio-facial pediatrician as well as the cranio-facial plastic surgeon today. We started out the appointment with a fellow, she's a developmental pediatrician. This is an extra doctor we didn't schedule an appointment with. She took a fairly detailed medical history and spent a fair amount of time with us. But after answering all her questions I realized that that this was for her benefit and learning not ours. Her big tip was to suggest maybe we get Ainsley a stander. Which we had already tried 6 months earlier. Our physical therapist think she doesn't need one and I trust her completely. It occurred to me that perhaps it is because Ainsley is so medically complex that we always "get to " see extra doctors before we see the actual doctor we have the appointment with. Perhaps it is just how it works at a teaching hospital and every patient goes through this? But I also can't help but wonder if this is why they are always running late and why today the appointments take a total of 2 1/2 hours. Anyway...
So the cranio-ped can see how well she's doing and the numbers speak for themselves. She's 27 months old and 29lb and 37" tall. A massive weight gain since the Fundoplication. It's amazing what can happen when you can keep your food down. She had reviewed the notes from our last ENT appointment and said that since things are going so well with the PMV that the next step will be capping. Capping is when the trach is covered with a cap which forces the patient to breath through the nose and mouth instead of the trach. Sometimes capping can go very well right away and other times it can be more of a struggle to get used to and capping is done for increasing amounts of time depending on tolerance. Our otolaryngologist moved and we are going to see someone new on the 23rd. Thankfully he's very experienced so I feel okay about the change. In light of the fact that Ainsley's airway had opened up some only 3 weeks post Nissen we are hoping that we will see some good things at this appointment and maybe even come away with a cap. It's up to the otolaryngologist. Please be crossing your fingers for a good appointment for her.
I was most excited to meet with the cranio-facial plastic surgeon. He is really fabulous! I wanted to discuss the frontalis sling surgery to correct her ptosis. The otolaryngoloist wasn't sure if there is enough eyebrow bone to anchor the muscle to. I found out the surgery can be done to a prosthetic, in case there isn't enough bone, which is a relief. I've been very worried that we will have to wait until she gets eyebrow prosthetics at age 8. Too long to wait in my opinion. I really want to see her eyes again. He agreed. And gave me the name of another surgeon who he works with a lot on complex cases like Ainsley. So we'll be scheduling an appointment for a second opinion about how to proceed with her eye surgery(s). Ainsley has two small soft spots where bone did not fill in from the reconstruction. We laughed at how convenient that was of her because he could feel her brain and tell that it is not under pressure, a sign that her skull has not fixed since her cranial surgeries. Those soft spots may need to be filled in later on if they don't fill in on their own at about 9-10 yrs of age. He also said that her cheek bones are in line with the orbital rims and that indicates that her mid-face has been able to keep up growth with the forehead expansion. So this means that, so far, there is no need for a mid-face surgery. Although she does still have a bit of an under bite. This may be fixable with orthodontics or may require an upper jaw surgery. Only time will tell. I'm still hoping she'll just outgrow it. She has beautiful teeth and for now it's not a problem. He will keep monitoring Ainsley every year to see how she is doing or sooner if anything comes up.
Last we saw the dietitian. We've made a believer of her with our home-made blended formula. She was thrilled and said it made her day to have one of her kids growing so well.
So the cranio-ped can see how well she's doing and the numbers speak for themselves. She's 27 months old and 29lb and 37" tall. A massive weight gain since the Fundoplication. It's amazing what can happen when you can keep your food down. She had reviewed the notes from our last ENT appointment and said that since things are going so well with the PMV that the next step will be capping. Capping is when the trach is covered with a cap which forces the patient to breath through the nose and mouth instead of the trach. Sometimes capping can go very well right away and other times it can be more of a struggle to get used to and capping is done for increasing amounts of time depending on tolerance. Our otolaryngologist moved and we are going to see someone new on the 23rd. Thankfully he's very experienced so I feel okay about the change. In light of the fact that Ainsley's airway had opened up some only 3 weeks post Nissen we are hoping that we will see some good things at this appointment and maybe even come away with a cap. It's up to the otolaryngologist. Please be crossing your fingers for a good appointment for her.
I was most excited to meet with the cranio-facial plastic surgeon. He is really fabulous! I wanted to discuss the frontalis sling surgery to correct her ptosis. The otolaryngoloist wasn't sure if there is enough eyebrow bone to anchor the muscle to. I found out the surgery can be done to a prosthetic, in case there isn't enough bone, which is a relief. I've been very worried that we will have to wait until she gets eyebrow prosthetics at age 8. Too long to wait in my opinion. I really want to see her eyes again. He agreed. And gave me the name of another surgeon who he works with a lot on complex cases like Ainsley. So we'll be scheduling an appointment for a second opinion about how to proceed with her eye surgery(s). Ainsley has two small soft spots where bone did not fill in from the reconstruction. We laughed at how convenient that was of her because he could feel her brain and tell that it is not under pressure, a sign that her skull has not fixed since her cranial surgeries. Those soft spots may need to be filled in later on if they don't fill in on their own at about 9-10 yrs of age. He also said that her cheek bones are in line with the orbital rims and that indicates that her mid-face has been able to keep up growth with the forehead expansion. So this means that, so far, there is no need for a mid-face surgery. Although she does still have a bit of an under bite. This may be fixable with orthodontics or may require an upper jaw surgery. Only time will tell. I'm still hoping she'll just outgrow it. She has beautiful teeth and for now it's not a problem. He will keep monitoring Ainsley every year to see how she is doing or sooner if anything comes up.
Last we saw the dietitian. We've made a believer of her with our home-made blended formula. She was thrilled and said it made her day to have one of her kids growing so well.
Jan 9, 2009
It's A New Year
To celebrate the passing into a new year I wanted to do a family slide show. Unfortunately I have so many pictures that it is very difficult to keep up with deleting the bad (and duplicates) and rotating the sideways ones so that you can actually sit down and view them as a collection on the big screen (which is networked to our computer). Our computer was not up to the task so much of 2008 it was just too slow to do the work. We finally bought some more RAM and that helped but it was still a massive job. So during this winter break I spent several full days working through the photos. No, I wasn't able to finish but I made a really good start and we were able to spend several evenings viewing pictures from the first half of the year. A couple thousand to start and we needed a little break anyway.
Viewing those pictures, what was painful was to be reminded of how much energy we put into feeding and how she's actually regressed in that area despite the hours of feeding therapy. Oh, the frustration. I have pictures of her from the beginning of the year covered in food and putting the spoon into her mouth. She would open for several bites and in April and May would even eat a few tablespoons in a sitting. The few bites she would take always gave me such hope that she would take more but it was never to be. After the Nissen surgery in October I saw evidence of some micro-aspiration and she started refusing to eat. I have spent so many hours trying to make sense of it and now looking back I think two things are going on. I think she is protecting her airway because she knows that often when she eats little bits of food get down and it's irritating. I think also with the trach and her neurological issues controlling the food in her mouth, the timing of the swallow along with breathing at the same time are too much for her to coordinate. I really believe that some day when she doesn't have the trach she will be able to eat. Perhaps not enough to eliminate the feeding tube but enough to be able to enjoy some foods for sure.
It's been interesting to see, despite an inability to eat, that Ainsley has a really good relationship with food. She has always "eaten" dinner with us and has over the last few months gotten really adamant that she have all of the same foods we have on her plate and will gesture toward the table if we neglect to give something we have on our plates. Most recently she seems to have noticed that she didn't have a drink like the rest of us and has started demanding one, even drinking a few swallows. She even puts the food up to her mouth. As always she loves to play with it. Many children with food aversions will not get near food or touch it.
It was interesting to see how Ainsley changed during the year. In her own way she really did change from a baby to a toddler even though developmentally she is still more like a baby. She is an interesting puzzle and I so wish we could see inside her brain to watch how the neurons are connecting. I look forward to seeing her development over 2009 because I think it will shed a lot of light on her potential.
Recently a friend and I were talking and she was telling me how the birth to three center that her son and Ainsley attend had made a really grim prognosis for her son's development back in the beginning. Now he is doing so well a stranger would hardly notice there is any issue, other than perhaps a speech delay. Then there is Ainsley whom you would have thought would have received a very grim prognosis. She was delayed in all areas and had a known brain malformation of the cerebellum. Then there are all the medical issues on top of that. People have suggested to me that perhaps they don't want to give a negative prognosis because it may scare us or leave us hopeless. But I've always thought it was because they really don't know due to how unique she is. Hearing what this friend said confirmed that for me. And certainly she isn't the only parent to receive a negative prognosis or to receive one that turned out to be wrong. I wish we had an answer for the many questions we have about what Ainsley will be able to do. But at least in 2008 she answered the following:
Yes, I will be able to:
1) Sit independently
2) Move in and out of sitting
3) Crawl
4) Play purposefully with toys - push a car
5) Tolerate a PMV
6) Laugh
7) Open a drawer and get into the contents - cups
8) Make simple choices
9) Stand with Support
10) Get into mischief - pull DVDs off a shelf, wipes out of the box etc.
11) Wave hi and good night
12) Come when she's asked
13) Understand and respond to the words No and No Touch
14) Push my arms through the sleeves when getting dressed
With all that she has been able to achieve despite all she's had against her I have such hope for her future and this coming year. May you all be blessed with health and happiness.
Viewing those pictures, what was painful was to be reminded of how much energy we put into feeding and how she's actually regressed in that area despite the hours of feeding therapy. Oh, the frustration. I have pictures of her from the beginning of the year covered in food and putting the spoon into her mouth. She would open for several bites and in April and May would even eat a few tablespoons in a sitting. The few bites she would take always gave me such hope that she would take more but it was never to be. After the Nissen surgery in October I saw evidence of some micro-aspiration and she started refusing to eat. I have spent so many hours trying to make sense of it and now looking back I think two things are going on. I think she is protecting her airway because she knows that often when she eats little bits of food get down and it's irritating. I think also with the trach and her neurological issues controlling the food in her mouth, the timing of the swallow along with breathing at the same time are too much for her to coordinate. I really believe that some day when she doesn't have the trach she will be able to eat. Perhaps not enough to eliminate the feeding tube but enough to be able to enjoy some foods for sure.
It's been interesting to see, despite an inability to eat, that Ainsley has a really good relationship with food. She has always "eaten" dinner with us and has over the last few months gotten really adamant that she have all of the same foods we have on her plate and will gesture toward the table if we neglect to give something we have on our plates. Most recently she seems to have noticed that she didn't have a drink like the rest of us and has started demanding one, even drinking a few swallows. She even puts the food up to her mouth. As always she loves to play with it. Many children with food aversions will not get near food or touch it.
It was interesting to see how Ainsley changed during the year. In her own way she really did change from a baby to a toddler even though developmentally she is still more like a baby. She is an interesting puzzle and I so wish we could see inside her brain to watch how the neurons are connecting. I look forward to seeing her development over 2009 because I think it will shed a lot of light on her potential.
Recently a friend and I were talking and she was telling me how the birth to three center that her son and Ainsley attend had made a really grim prognosis for her son's development back in the beginning. Now he is doing so well a stranger would hardly notice there is any issue, other than perhaps a speech delay. Then there is Ainsley whom you would have thought would have received a very grim prognosis. She was delayed in all areas and had a known brain malformation of the cerebellum. Then there are all the medical issues on top of that. People have suggested to me that perhaps they don't want to give a negative prognosis because it may scare us or leave us hopeless. But I've always thought it was because they really don't know due to how unique she is. Hearing what this friend said confirmed that for me. And certainly she isn't the only parent to receive a negative prognosis or to receive one that turned out to be wrong. I wish we had an answer for the many questions we have about what Ainsley will be able to do. But at least in 2008 she answered the following:
Yes, I will be able to:
1) Sit independently
2) Move in and out of sitting
3) Crawl
4) Play purposefully with toys - push a car
5) Tolerate a PMV
6) Laugh
7) Open a drawer and get into the contents - cups
8) Make simple choices
9) Stand with Support
10) Get into mischief - pull DVDs off a shelf, wipes out of the box etc.
11) Wave hi and good night
12) Come when she's asked
13) Understand and respond to the words No and No Touch
14) Push my arms through the sleeves when getting dressed
With all that she has been able to achieve despite all she's had against her I have such hope for her future and this coming year. May you all be blessed with health and happiness.
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