I promised I would do a post about Riley's trach so here it is.
Riley had her trach put in on 3/31/10. She had been in the NICU for more than 3 months. Shortly after she was born she started have oxygen saturation drops, meaning that the level of oxygen in her blood was too low. If the oxygen in your blood is too low than the rest of your body, especially your brain, doesn't get the oxygen that it needs to function and thrive. Your blood oxygen level should not go below 92, Riley was having drops into the 60s, and even lower into the 40s and 30s. Obviously this is a BIG problem.
The doctors did not know why she was having this severe of drops. Riley was put on oxygen through a nasal cannula to keep her level where they needed to be. However, she was still having apneas even when she was in the oxygen.
She had her 1st sleep study done at 17 days old. A sleep study records lots of different things during sleep, including brain activity, eye movement, oxygen and carbon dioxide blood levels, heart rate and rhythm, breathing rate and rhythm, the flow of air through your mouth and nose, snoring, body muscle movements, and chest and belly movement. Riley had electrodes put all over her head and chest. She was found to be having 68.7 apneic episodes an hour. She was having 38.6/hour obstructive apnea, 15.6/hour of hypopnea, 3.0/hour mixed apnea, and 8.4/hour central apnea. (See Medical Terms page for definitions of each type) She was diagnosed with obstructive sleep apnea syndrome. She also had severe hypoxemia, an abnormally low amount of oxygen in her blood.
After the sleep study Riley was put on a sleep apnea machine, which made her look like a rhinoceros.
This was bit something that she could come home on because they do not make them for at home use; for babies. So we had to find a different solutions so she could come home. She was on the sleep apnea machine for about a week before they switched her back to a high flow nasal cannula.
On January 2010 she developed terrible reflux issues. They tired feeding her over different periods of time which didn't help. The doctors thought they could severely reduce or eliminate Ri's apnea if we did a nissen and placed a G-tube (See Learning to eat blog for more details about this). About two weeks after surgery we did a repeat sleep study. This time she was having 40.5 apneic episodes an hour. She was having 35/hour of hypopnea, 4.9/hour mixed apnea, and .3/hour central apnea. She still had severe obstructive apnea with severe hypoxemia. So it had fixed her reflux issues but did not make much a difference in the apnea problem.
We went on to the next step. Her apneas tended to be position related. Meaning if we cradled her in our arms she would have an apnea or if she was laying flat she would have an apnea. To combat this we would hold her more upright or on out shoulder. And her bed was set so that her head was raised all the time. It was not enough we needed a more permanent solution.
Riley had (and still does but it is improving greatly) low tone. Her muscles as just not as strong as they should be and it makes it hard for her to do lots of things. it effected pretty much her whole body. The two most important part of her body for this topic are her throat and tongue. She also has a small chin which in turns means that she has a small mouth. (I have a small chin and mouth too but Ri's is much more pronounced) With this in mind the doctors nest thought that they apneas might be due to the low tone in her tongue and her mouth being too small for her tongue. The fact that she was having more apneas when she was in certain positions supported this theory. They believed that when she was in a flatter position that her tongue was falling into the back of her throat and closing off her airway. We could actually watch her and see this happening; The plastic surgeon suggested a procedure called a tongue/lip adhesion (or TLA).
A TLA is exactly like it sounds. A surgeon goes in and pulls her tongue forward and places a cut on the bottom of the tongue then they place another cut in the inside of her lip. They then stitch the two together. For recovery they also place a stitch that goes from the top of the tongue through the bottom of the tongue and then through the lower palate. This is secured under the chin with a small plastic bar. This is to keep her form bring able to move her tongue too much so that it can heal together. Once it is healed enough that there is not a concern that she would be able to pull her tongue and lip apart the stitch through the tongue is removed.
As I write about this procedure I realize how barbaric it sounds and let me tell you she was not pretty to look at when she came out of surgery either. It was frankly down right scary to see her like that. There was another little girls in the NICU that was having similar breathing issues as Riley and she had under gone this procedure prior to Riley having hers. They were kind enough to let us see their daughter before we decided to go ahead so we could get a better idea of what to expect.
Some of the risk and effects of a TLA are that it can harder for the child to talk and eat. Eating was not an issue for us because Ri was not safe to have food orally and she had the G-tube, But the delay in talking was a concern for us. T18p kids already do not normally starting talking until 2.5 years old and we could be delaying her even more. There was also no guarantee that it would work to get rid of her apnea.
We debated for awhile and tried to find out if there were other options. This seems like a drastic procedure. If we decided not to do the TLA, than our options would to stay in the NICU, have a tracheotomy, or a jaw distraction. All of these options were more drastic then the TLA. The tracheotomy would require 24 care when we got home. Staying in the NICU was really not an option, she could not grow up in a hospital and never see the outside world. And a jaw distraction is another surgery where they attach a device to the patient jaw and then they are able to slowly strench the jaw, this making it larger. That was way to drastic and even the doctors thought so.
We decided to go ahead with the TLA. The plastic surgeon told us that if it did not work that the next step would be the tracheotomy. After about 2 weeks they removed the stitch through her tongue. We went about another 2 weeks before doing a third sleep study. We wanted to give her enough time that she could heal and the swelling could go down. The third sleep study results were not much better than before the TLA: 59.6 apneic episodes an hour including 33.4/hour obstructive apnea, 22.7/hour of hypopnea, 3.5/hour mixed apnea, and 1.7/hour central apnea. They did a fourth sleep study 3 days later but this time they part her on oxygen to see if that made any difference and it didn't. She was still have 52.5 apneic episodes an hour including 30.9/hour obstructive apnea, 17.5/hour of hypopnea, 3.1/hour mixed apnea, and .9/hour central apnea.
So it was decided that the tracheotomy was our only option so that we could get Riley stable enough to bring home. It would mean alot of changes in our home life and seeing as this blog is super super long already I will do a separate one on how if effected our home life and what is needed to care for a child with a trach.
Once she had the procedure she was like a different baby. She was sleeping better, and calmer, she looked healthier, and she starting gaining weight wonderful. Once we got her oxygen requirements fixed she do so much better. I just felt bad that it had taken us 3 long months to get her there. Before we could leave the hospital we had to learn how to clean, and take care of, and change the trach. That was really kinda of scary at first. The first time I had to change her trach I was shaking, but after I did it I realized that it was alot easier then I thought it would be. I quickly became a pro.
I hope you have enjoy this ridiculously long post. If you have any specific questions please let me know. I hope to get home life and care part of this topic up by the end of the weekend.
Riley had her trach put in on 3/31/10. She had been in the NICU for more than 3 months. Shortly after she was born she started have oxygen saturation drops, meaning that the level of oxygen in her blood was too low. If the oxygen in your blood is too low than the rest of your body, especially your brain, doesn't get the oxygen that it needs to function and thrive. Your blood oxygen level should not go below 92, Riley was having drops into the 60s, and even lower into the 40s and 30s. Obviously this is a BIG problem.
The doctors did not know why she was having this severe of drops. Riley was put on oxygen through a nasal cannula to keep her level where they needed to be. However, she was still having apneas even when she was in the oxygen.
She had her 1st sleep study done at 17 days old. A sleep study records lots of different things during sleep, including brain activity, eye movement, oxygen and carbon dioxide blood levels, heart rate and rhythm, breathing rate and rhythm, the flow of air through your mouth and nose, snoring, body muscle movements, and chest and belly movement. Riley had electrodes put all over her head and chest. She was found to be having 68.7 apneic episodes an hour. She was having 38.6/hour obstructive apnea, 15.6/hour of hypopnea, 3.0/hour mixed apnea, and 8.4/hour central apnea. (See Medical Terms page for definitions of each type) She was diagnosed with obstructive sleep apnea syndrome. She also had severe hypoxemia, an abnormally low amount of oxygen in her blood.
After the sleep study Riley was put on a sleep apnea machine, which made her look like a rhinoceros.
This was bit something that she could come home on because they do not make them for at home use; for babies. So we had to find a different solutions so she could come home. She was on the sleep apnea machine for about a week before they switched her back to a high flow nasal cannula.
On January 2010 she developed terrible reflux issues. They tired feeding her over different periods of time which didn't help. The doctors thought they could severely reduce or eliminate Ri's apnea if we did a nissen and placed a G-tube (See Learning to eat blog for more details about this). About two weeks after surgery we did a repeat sleep study. This time she was having 40.5 apneic episodes an hour. She was having 35/hour of hypopnea, 4.9/hour mixed apnea, and .3/hour central apnea. She still had severe obstructive apnea with severe hypoxemia. So it had fixed her reflux issues but did not make much a difference in the apnea problem.
We went on to the next step. Her apneas tended to be position related. Meaning if we cradled her in our arms she would have an apnea or if she was laying flat she would have an apnea. To combat this we would hold her more upright or on out shoulder. And her bed was set so that her head was raised all the time. It was not enough we needed a more permanent solution.
Riley had (and still does but it is improving greatly) low tone. Her muscles as just not as strong as they should be and it makes it hard for her to do lots of things. it effected pretty much her whole body. The two most important part of her body for this topic are her throat and tongue. She also has a small chin which in turns means that she has a small mouth. (I have a small chin and mouth too but Ri's is much more pronounced) With this in mind the doctors nest thought that they apneas might be due to the low tone in her tongue and her mouth being too small for her tongue. The fact that she was having more apneas when she was in certain positions supported this theory. They believed that when she was in a flatter position that her tongue was falling into the back of her throat and closing off her airway. We could actually watch her and see this happening; The plastic surgeon suggested a procedure called a tongue/lip adhesion (or TLA).
A TLA is exactly like it sounds. A surgeon goes in and pulls her tongue forward and places a cut on the bottom of the tongue then they place another cut in the inside of her lip. They then stitch the two together. For recovery they also place a stitch that goes from the top of the tongue through the bottom of the tongue and then through the lower palate. This is secured under the chin with a small plastic bar. This is to keep her form bring able to move her tongue too much so that it can heal together. Once it is healed enough that there is not a concern that she would be able to pull her tongue and lip apart the stitch through the tongue is removed.
As I write about this procedure I realize how barbaric it sounds and let me tell you she was not pretty to look at when she came out of surgery either. It was frankly down right scary to see her like that. There was another little girls in the NICU that was having similar breathing issues as Riley and she had under gone this procedure prior to Riley having hers. They were kind enough to let us see their daughter before we decided to go ahead so we could get a better idea of what to expect.
Some of the risk and effects of a TLA are that it can harder for the child to talk and eat. Eating was not an issue for us because Ri was not safe to have food orally and she had the G-tube, But the delay in talking was a concern for us. T18p kids already do not normally starting talking until 2.5 years old and we could be delaying her even more. There was also no guarantee that it would work to get rid of her apnea.
We debated for awhile and tried to find out if there were other options. This seems like a drastic procedure. If we decided not to do the TLA, than our options would to stay in the NICU, have a tracheotomy, or a jaw distraction. All of these options were more drastic then the TLA. The tracheotomy would require 24 care when we got home. Staying in the NICU was really not an option, she could not grow up in a hospital and never see the outside world. And a jaw distraction is another surgery where they attach a device to the patient jaw and then they are able to slowly strench the jaw, this making it larger. That was way to drastic and even the doctors thought so.
We decided to go ahead with the TLA. The plastic surgeon told us that if it did not work that the next step would be the tracheotomy. After about 2 weeks they removed the stitch through her tongue. We went about another 2 weeks before doing a third sleep study. We wanted to give her enough time that she could heal and the swelling could go down. The third sleep study results were not much better than before the TLA: 59.6 apneic episodes an hour including 33.4/hour obstructive apnea, 22.7/hour of hypopnea, 3.5/hour mixed apnea, and 1.7/hour central apnea. They did a fourth sleep study 3 days later but this time they part her on oxygen to see if that made any difference and it didn't. She was still have 52.5 apneic episodes an hour including 30.9/hour obstructive apnea, 17.5/hour of hypopnea, 3.1/hour mixed apnea, and .9/hour central apnea.
So it was decided that the tracheotomy was our only option so that we could get Riley stable enough to bring home. It would mean alot of changes in our home life and seeing as this blog is super super long already I will do a separate one on how if effected our home life and what is needed to care for a child with a trach.
Once she had the procedure she was like a different baby. She was sleeping better, and calmer, she looked healthier, and she starting gaining weight wonderful. Once we got her oxygen requirements fixed she do so much better. I just felt bad that it had taken us 3 long months to get her there. Before we could leave the hospital we had to learn how to clean, and take care of, and change the trach. That was really kinda of scary at first. The first time I had to change her trach I was shaking, but after I did it I realized that it was alot easier then I thought it would be. I quickly became a pro.
I hope you have enjoy this ridiculously long post. If you have any specific questions please let me know. I hope to get home life and care part of this topic up by the end of the weekend.
Here are so links that we find useful. When we were trying to make our decision about the trach.
