This afternoon we took Kinley to Children's Mercy South for her appointment with the audiologist. Kinley's pediatrician, OT and nurse practitioner from the special care clinic all agreed that a hearing test was a good idea just to rule out any hearing problems as the cause of her delayed speech.
Kinley is at an increased risk for developing late onset/progressive hearing loss as a result of her rough start in life. This means that even though Kinley passed her newborn hearing screen, we still need to have her hearing monitored up until she is about 10 years old. I have a good friend who is an audiologist and she sent me a few studies on CDH and hearing loss. From what I learned it is not necessarily the CDH that causes hearing loss, rather the side effects from some of the treatments Kinley required. ECMO and certain antibiotics were the two main culprits for causing hearing loss, and the longer duration of treatment increased the risk. Kinley had her 21 day run on ECMO which certainly increased her risk for hearing loss. As far as the antibiotics go, Kinley was on vancomycin and gentamicin. Both of those antibiotics can cause hearing loss even with the close monitoring that she received while on those medications. There was even one study that listed mechanical ventilation, especially with the high frequency oscillator as a risk factor for developing hearing loss. Also listed as possible risk factors in that study were the use of inhaled nitric oxide, loop diuretics such as Lasix and hypoxia, or decreased oxygen levels. Based on the studies that I read it looks like anywhere from 5 to 25 percent of ECMO graduates may show signs of late onset/progressive hearing loss, so the percentage is fairly small, but worth monitoring.
Kinley's appointment started off with the audiologist looking into Kinley's ear. According to her, everything looked normal. Then she used an instrument in Kinley's ear to try and get Kinley's eardrums to move. Kinley's eardrums moved, so that was also good. Next up was the behavioral hearing test. The audiologist left the testing room and Kinley, Kevin and I were left inside. From behind the 1 way glass in the room next door, the audiologist made sounds appear from various speakers around the testing room and watched Kinley's response to the noises. After that test was finished she came back into the room and discussed the results with us. She said that Kinley's hearing was borderline, but within normal limits at this time. She said that Kinley's hearing should not be affecting Kinley's speech and language skills at this point. However, this test just tested Kinley's overall hearing, not each ear individually. So, the audiologist tried one last test on Kinley. This test involved putting a little device on one of Kinley's ears and was supposed to test the hearing of each ear individually. The problem was that Kinley had to be quiet for the test and she started to cry a little when the device was placed on her ear. We were not able to get accurate results from that test.
The audiologist recommended that we come back in 3 months to follow-up and go from there.
Friday, June 19, 2009
Wednesday, June 17, 2009
OT Visit at Children's Mercy
This morning we had to wake Kinley up early so that we could get downtown to Children's Mercy for her OT appointment on time. It was actually really bad planning on mommy and daddy's part because we kept her up late last night for the Royals game and then got her up early this morning. I really don't know what we were thinking. Oh well, live and learn.
The reason Kinley had to see the OT at Children's Mercy was because they have the final say on whether or not to do a swallow study.
We made it to Kinley's appointment on time and soon realized that she still has a phobia of medical personnel. As soon as we wheeled her stroller into the treatment room Kinley started crying. She was not herself the whole appointment, she was really fussy and uncooperative. Whether that was from being back at the hospital, or her lack of sleep, or both I guess we won't know for sure. Kinley ate a couple of bites of graham crackers and applesauce for the OT and she took a couple of sips of water from her sippy cup, but that is all we could get her to do before she was done.
After evaluating Kinley, the OT recommended that we cancel the swallow study. Her reasoning was that Kinley will have to be able to take at least 15 swallows for the swallow study and if she is not able to do that then we basically wasted our chance since she will not be able to have another swallow study for another year. The reason she can't have another swallow study for so long is because the study involves a lot of radiation. Basically it is like having a continuous x-ray machine on her watching every swallow.
The reason we originally wanted a swallow study was to see if Kinley needs to have her liquids thickened anymore. The OT recommended that we try clinically weaning her off the thickener instead of doing the test now. To clinically wean means that Kevin and I will be in charge of watching Kinley's reaction to thinner liquids.
We had been using 1 packet of nectar thickener to 6 oz of milk and we are now going to use that same packet to 8 oz of milk so that it will be just a little thinner. Kevin and I will be watching for any signs that Kinley is not tolerating the thinner liquids such as coughing, breathing heavier during feedings, or refusing the bottle. Worst case scenario is that Kinley may get a cold or infection in her lungs from aspirating some of the liquid. (Aspiration is when liquid goes into the lungs instead of the stomach.) This is the time to clinically wean since it is summer. You would not want to clinically wean in the winter because of cold and flu season, plus it would be hard to tell if the thinner liquids caused the infection/cold or if it was just the regular common cold or flu.
We were a little hesitant about clinically weaning because we were not sure we would be able to tell if Kinley was having any problems on the thinner liquids, but we felt better that the OT at Children's Mercy thought we would be just fine. They are usually just as cautious as the special care clinic, so if they were alright with it that made us feel better. Plus, we have already been giving Kinley unthickened milk in her sippy cups and she has done just fine with that. If we can prevent Kinley from having to go through another swallow study and thin her liquids that would be awesome! I was pleasantly surprised that the OT thought clinically weaning was the best course of action for Kinley.
I was also surprised to hear the OT say that we have been "babying" Kinley too much with regard to her meals. Kevin and I have still been warming Kinley's bottles before we give them to her. I guess it was just habit to warm her bottles when feeding her fortified breastmilk and we just carried that through when we switched to formula and most recently to whole milk. We have also been making sure that all the food on Kinley's highchair tray is bite size for her. The OT said we should start giving Kinley her bottles cooler and giving her bigger pieces of food so she has to work to make them bite size for her. It was very refreshing to be at Children's Mercy and hear that we should forgo the swallow study in favor of clinically weaning and push Kinley a little harder at mealtimes even if it meant that her intake may decrease a little initially.
The reason Kinley had to see the OT at Children's Mercy was because they have the final say on whether or not to do a swallow study.
We made it to Kinley's appointment on time and soon realized that she still has a phobia of medical personnel. As soon as we wheeled her stroller into the treatment room Kinley started crying. She was not herself the whole appointment, she was really fussy and uncooperative. Whether that was from being back at the hospital, or her lack of sleep, or both I guess we won't know for sure. Kinley ate a couple of bites of graham crackers and applesauce for the OT and she took a couple of sips of water from her sippy cup, but that is all we could get her to do before she was done.
After evaluating Kinley, the OT recommended that we cancel the swallow study. Her reasoning was that Kinley will have to be able to take at least 15 swallows for the swallow study and if she is not able to do that then we basically wasted our chance since she will not be able to have another swallow study for another year. The reason she can't have another swallow study for so long is because the study involves a lot of radiation. Basically it is like having a continuous x-ray machine on her watching every swallow.
The reason we originally wanted a swallow study was to see if Kinley needs to have her liquids thickened anymore. The OT recommended that we try clinically weaning her off the thickener instead of doing the test now. To clinically wean means that Kevin and I will be in charge of watching Kinley's reaction to thinner liquids.
We had been using 1 packet of nectar thickener to 6 oz of milk and we are now going to use that same packet to 8 oz of milk so that it will be just a little thinner. Kevin and I will be watching for any signs that Kinley is not tolerating the thinner liquids such as coughing, breathing heavier during feedings, or refusing the bottle. Worst case scenario is that Kinley may get a cold or infection in her lungs from aspirating some of the liquid. (Aspiration is when liquid goes into the lungs instead of the stomach.) This is the time to clinically wean since it is summer. You would not want to clinically wean in the winter because of cold and flu season, plus it would be hard to tell if the thinner liquids caused the infection/cold or if it was just the regular common cold or flu.
We were a little hesitant about clinically weaning because we were not sure we would be able to tell if Kinley was having any problems on the thinner liquids, but we felt better that the OT at Children's Mercy thought we would be just fine. They are usually just as cautious as the special care clinic, so if they were alright with it that made us feel better. Plus, we have already been giving Kinley unthickened milk in her sippy cups and she has done just fine with that. If we can prevent Kinley from having to go through another swallow study and thin her liquids that would be awesome! I was pleasantly surprised that the OT thought clinically weaning was the best course of action for Kinley.
I was also surprised to hear the OT say that we have been "babying" Kinley too much with regard to her meals. Kevin and I have still been warming Kinley's bottles before we give them to her. I guess it was just habit to warm her bottles when feeding her fortified breastmilk and we just carried that through when we switched to formula and most recently to whole milk. We have also been making sure that all the food on Kinley's highchair tray is bite size for her. The OT said we should start giving Kinley her bottles cooler and giving her bigger pieces of food so she has to work to make them bite size for her. It was very refreshing to be at Children's Mercy and hear that we should forgo the swallow study in favor of clinically weaning and push Kinley a little harder at mealtimes even if it meant that her intake may decrease a little initially.
Kinley's First Royals Game
Last night we got to take Kinley to her first Royals game! It was T-Shirt Tuesday and even Kinley got a t-shirt. We went with Grandpa and Grandma Melcher and Kinley had a great time checking out the new K. (So did mommy and daddy for that matter.) Kinley did great and just people watched as we walked around the stadium before the game. She did pretty well during the game too. We found out the hard way that Kinley prefers her own seat about 4 innings into the game though. Kinley even cheered a couple of times which is huge since she has not been making much noise at all lately. We gave Kinley her night time bottle as we watched the game from our seats. We brought a bottle of Pediasure since it doesn't have to be refrigerated before opening and a packet of thickener so that we could just mix it and give it to her without much fuss. Kinley had other plans. Kinley totally refused the Pediasure, so I went on a search of the ballpark for some whole milk. It actually wasn't that hard, I guessed that the kid's snack bar would carry whole milk and the usher confirmed it for me. Luckily we packed an extra bottle and packet of thickener, so it was not a big deal. Kinley ended up taking her last bottle pretty well considering all the distractions that come from being fed away from home. We didn't stay for the whole game, but Kinley stayed awake well past her bedtime and didn't even fall asleep in the car on the way home. She must have been too excited still. She did fall asleep shortly after getting into her nice familiar crib. What a fun night out as a family.
one size fits all t-shirt?
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