Jamie just got a call back from the ENT.
The diagnosis is that Ella does have tracheomalacia (the wall of the trachea is soft, instead of hard cartilage). It is an area 2cm in length that is about 3cm below her vocal cords that is collapsing when she breathes. The ENT said that he has diagnosed this before, but it is rare, so he does not treat it. He is going to do some research on who he should send us to (pediatric thoracic surgeon, or another ENT that specializes in airway issues). If it was only the noise, he would have suggested we just wait and see if she grows out of it, but given what happened during the sedation for the MRI, he thinks we should talk to someone more specialized to decide what (if anything) to do. He also recommends that we talk to this person before re-scheduling the MRI, although he did say since the soft area was so close to her vocal cords that when they intubate her for the general anesthesia, it should be safe and support her airway open.
He should be able to let us know by Monday who to go see. I'm also putting in a call with the pediatrician to go over this information. I want to let her know what is going on, and discuss if she feels the MRI is still the best way to proceed to rule out hydrocephalus/"water on the brain."
Thanks for continued prayers!
Thursday, October 31, 2013
Thursday, October 24, 2013
Ella's medical update
Unfortunately yesterday wasn't a very good day for Ella (or any of us, really). We took her in to a Children's Healthcare Center for her rescheduled MRI and she was fine in the morning, without any congestion like last time (they wouldn't even attempt to sedate her last time because she was too congested). The anesthesiologist checked over Ella and said she was good to go. The IV insertion went well - Ella was only upset they had to papoose/swaddle her to hold her still, but they got it in on the first try. We went into the MRI room and they gave her the sedation medicine. They only needed to give her a milder anesthetic just so she would sleep and be still. After she fell asleep her airway collapsed ("laryngospasm" apparently) and she wasn't breathing on her own, so they had to stop the meds and use the air mask with the big squeeze bag on it (a bag valve mask, I think) to force air into her off and on for 15-20 minutes until she came around. Both of us were in the room the whole time, and Ella was never in danger, but obviously they couldn't do the MRI since she couldn't breathe on her own for the 30 minutes it would take to get the images they needed.
After she woke up she was all drunk happy/giggly and took fluids fine (half a cup of juice and a bottle). We went home where she had a little bit to eat and took a nap in her room. She woke up around noon with a fever of 101.5, had a bottle and then threw up that and everything from earlier in the day. The remainder of the day was the same: she couldn't keep anything down and was very lethargic. She would only calm when being held and she just wanted to lay her head on your shoulder and sleep. Unfortunately that meant we got drenched every time she woke up and got sick. (Jamie got thrown up on at least 5 times, Julie once.) We're still not sure if it was a side effect of the sedation medicine (a nurse at Children's said nausea wasn't as common with this med), or a stomach bug. The fever isn't a side effect of the medicine, but a different nurse said if it was a stomach bug she would have "lower" stomach issues, which never happened.
She went to bed for the night (in a pack and play in our room) around 11 and slept until 8am. Thankfully today she is keeping everything down and acting happy. We have an appointment tomorrow for an airway fluoroscopy (basically a live/movie xray from our understanding) to figure out what is going on with her airway. Fortunately we already had that scheduled because of her "honking" noise she makes, and now it would seem the honking could be related to what happened when she was sedated. Another fortunate thing is that the fluoroscopy doesn't require sedation. They actually want her to cry during it, so they can see her airway movement.
The Children's center we were at reported what happened to her pediatrician, but it sounds like the pediatrician still wants us to get the MRI done instead of waiting to see what happens with her head size over time. After we get the results of the fluoroscopy, I think I want to talk to the pediatrician directly (instead of through the nurses), if for no other reason because I want to know the risks we are weighing against each other. At this point, it sounds like to get the MRI, Ella will have to be put under general anesthesia (which puts you under so much they have to put in breathing tubes anyway) - although who knows if that will change based on the fluoroscopy results. I'm not sure if they can counter the nausea if they know she is sensitive, but I doubt any of us want a repeat of yesterday afternoon.
A couple prayer requests would be that we can find out what is going on with Ella's throat/airway on Friday, and that everyone involved can make the best decisions for how to proceed with the MRI to check for hydrocephalus/"water on the brain," given everything that has happened so far. Thank you!
Here's the little patient in the waiting room, then getting blood pressure checked.
Ella came out of sedation very happy - apparently lots of kids cry and/or are angry about it, but she was just in a happy, drugged state as she woke up. Later at home, she spent much of the day sleeping while being held.
After she woke up she was all drunk happy/giggly and took fluids fine (half a cup of juice and a bottle). We went home where she had a little bit to eat and took a nap in her room. She woke up around noon with a fever of 101.5, had a bottle and then threw up that and everything from earlier in the day. The remainder of the day was the same: she couldn't keep anything down and was very lethargic. She would only calm when being held and she just wanted to lay her head on your shoulder and sleep. Unfortunately that meant we got drenched every time she woke up and got sick. (Jamie got thrown up on at least 5 times, Julie once.) We're still not sure if it was a side effect of the sedation medicine (a nurse at Children's said nausea wasn't as common with this med), or a stomach bug. The fever isn't a side effect of the medicine, but a different nurse said if it was a stomach bug she would have "lower" stomach issues, which never happened.
She went to bed for the night (in a pack and play in our room) around 11 and slept until 8am. Thankfully today she is keeping everything down and acting happy. We have an appointment tomorrow for an airway fluoroscopy (basically a live/movie xray from our understanding) to figure out what is going on with her airway. Fortunately we already had that scheduled because of her "honking" noise she makes, and now it would seem the honking could be related to what happened when she was sedated. Another fortunate thing is that the fluoroscopy doesn't require sedation. They actually want her to cry during it, so they can see her airway movement.
The Children's center we were at reported what happened to her pediatrician, but it sounds like the pediatrician still wants us to get the MRI done instead of waiting to see what happens with her head size over time. After we get the results of the fluoroscopy, I think I want to talk to the pediatrician directly (instead of through the nurses), if for no other reason because I want to know the risks we are weighing against each other. At this point, it sounds like to get the MRI, Ella will have to be put under general anesthesia (which puts you under so much they have to put in breathing tubes anyway) - although who knows if that will change based on the fluoroscopy results. I'm not sure if they can counter the nausea if they know she is sensitive, but I doubt any of us want a repeat of yesterday afternoon.
A couple prayer requests would be that we can find out what is going on with Ella's throat/airway on Friday, and that everyone involved can make the best decisions for how to proceed with the MRI to check for hydrocephalus/"water on the brain," given everything that has happened so far. Thank you!
Here's the little patient in the waiting room, then getting blood pressure checked.
Ella came out of sedation very happy - apparently lots of kids cry and/or are angry about it, but she was just in a happy, drugged state as she woke up. Later at home, she spent much of the day sleeping while being held.
Friday, October 11, 2013
Thursday, October 3, 2013
Ella at 9 months
Ella's 9 month pediatrician visit was a couple days ago. She is 22lbs 2oz and 28.75" long. Her head measurement had been pretty consistent until this visit, when it jumped "off the charts." Since this can be indicative of some problems (or it could be nothing aside from a growth spurt), she'll be having an MRI next week. They will have to sedate her for that, so we're hoping she doesn't have any issues from the anesthesia (not expecting any, but you never know). After having Andy sedated for his surgery last year, we're probably a little less anxious about it, especially since this time it's just for an MRI.
She will also be seeing an ENT doctor about the "honking" noise she makes (not sure how to describe it other than she sounds like a goose at times). Just a week ago I had mentioned to Jamie how she must have finally outgrown it as I hadn't noticed it in about a week or two, then she started doing it again - a LOT - over the weekend and ever since. The pediatrician was a little concerned that she was still doing it and said it was probably best to have her checked by an ENT who can hopefully give us a better idea of why she makes that noise (she has been since she was born).
Aside from her big head and honking, though, she seems well. :) Not crawling yet, but she rolls and scoots around a lot, and has been pushing up on her arms more and more lately. She loves to eat and has yet to meet a food she doesn't like. She also loves "the itsy bitsy spider" (it's worked wonders to calm her down since she was about 5 months old!!) and she's started giving kisses - mostly this entails her leaning into you and making an "mmmmmm" noise (I guess we do that when we kiss her!).
She will also be seeing an ENT doctor about the "honking" noise she makes (not sure how to describe it other than she sounds like a goose at times). Just a week ago I had mentioned to Jamie how she must have finally outgrown it as I hadn't noticed it in about a week or two, then she started doing it again - a LOT - over the weekend and ever since. The pediatrician was a little concerned that she was still doing it and said it was probably best to have her checked by an ENT who can hopefully give us a better idea of why she makes that noise (she has been since she was born).
Aside from her big head and honking, though, she seems well. :) Not crawling yet, but she rolls and scoots around a lot, and has been pushing up on her arms more and more lately. She loves to eat and has yet to meet a food she doesn't like. She also loves "the itsy bitsy spider" (it's worked wonders to calm her down since she was about 5 months old!!) and she's started giving kisses - mostly this entails her leaning into you and making an "mmmmmm" noise (I guess we do that when we kiss her!).
Kinsey Family Farm
Ahh, fall has arrived! Yesterday I took Andy and Ella to the pumpkin farm we've gone to the past 5 years (since Kaylee was about 6 months old). We had fun looking at pumpkins, running around (pretty much just Andy) and eating lunch before heading home.
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