I have known for a while now that Anabelle doesn't breath as well as she should. I guess I never knew how bad it really was until they gave me some numbers behind it.
I just got back from our Pulmonology follow up. They had the results from her sleep study. And the results made me cry. She started off easy... Anabelle has 5 central sleep apneas, 1 mixed (I forgot what this means), and here are the real kickers, 236 obstructive sleep apneas, and 224 hypopneas. Her miminum oxygen saturation was 40%... It should be 100%! Her total number of desaturations was 480 for the 9 hour study.
Then the really bad part came. The doc asked if I have ever heard of a Tracheostomy, or knew what it was. Going into the appointment today I had two fears. One being they would put her on oxygen. The second, larger fear was they would want to do a Tracheostomy. I've learned when the doctors ask if you have ever heard of a procedure or surgery, they are leaning towards recommending it. Highly recommending it.
Not only is this another surgery for Anabelle. But how the heck are we suppose to handle a trach at home!? I don't know the first things about trachs! Obviously we want what is best for Anabelle... I just don't know how this is going to work.
Tomorrow night we are repeating the sleep study with 1-2 liters of oxygen, they are going to review, and then we have an appointment on Thursday with the actual Pulmonologist. These past two times we've meet with the NP, who has confered with the doctor. I am praying that all she will need is some o2 while she sleeps and wal-la! She's fine. I have a gut feeling that won't happen. I had a gut feeling about the g-tube, and I have that same feeling again. Just reading other kids stories, and the similarities.. It's just tough.
Well, we will keep you all updated on what happens this week. In all we have 8 appointments now! Wish us luck!! :D
With love,
The Polks
Showing posts with label stridor. Show all posts
Showing posts with label stridor. Show all posts
Monday, June 11, 2012
Thursday, May 24, 2012
Home at last! - again
I'm not very good at keeping up with whole posting twice a week. Opps!
Well we got home with Miss Anabelle on Saturday, so we've been home for 5 days now. On our own. With this stinking G-tube stuff. It honestly hasn't been horrible. It's just difficult to move around the house while holding her. I feel like our home has transformed into some sort of hospital clinic now. We have an IV pole and all. Oh, and our dumb apnea monitor doesn't work correctly, or we're using incorrectly.
She is still having pretty bad reflux. She is just so darn sensitive. We lay her flat to change a diaper and it starts. And it's horrible. It usually doesn't come up, it just hang out in the back of her throat. Which isn't fun. I'm sure it is just sitting there burning her, and then she cries in pain, and I fear she will some day aspirate it. And she favors being held chest to chest, and dislikes being put down. We can sometimes get away with it, but usually not for long. We have to pad her swing so that she is basically sitting straight up. And she favors this one particular head position that makes it a little tough to lay her down on her back. Luckily our home therapy people let us borrow this pillow thing. It's called a Versa pillow. It's full of little beads, and you shape it how you want, then you can suck out all of the air and it holds its shape! We finally got to use it today. She is actually liking it, kinda.
I am also excited because they do craniosacral therapy! I just learned about it earlier this week, and was sure it would be hard to find, and expensive. Luckily I asked, and they do it! And it's free! I'm just hoping we can get enough visits for us to become comfortable enough to do it if we don't get visits for it at least weekly.
I don't know how I am going to get use to this life of doctors. I know we have just begun, but shoot! How do other families do this?! This week we have 6, yes 6! doctor appointments. In 5 days! This week we had pulmonology, two home visits, Shriner's for castings, a post op check, and sleep study.
Pulmonology didn't do too much. They said that they want her to see cardiology, neurology, and be followed by the pulmonology team. As far as positioning, just don't put her head to her chest. Duh. You see, Anabelle likes to arch her back and keep her airway open. It's hard for her to breath if she is in any other position, and sometimes even that position is hard. I mentioned Stridor, and they agreed, but didn't say yes or no. Just 'yeah, that's a possibility.' UGH. Like I tell Amelia, it's either yes or no.
On a good note, we weighed Anabelle at Shriner's on Tuesday. We use their scale for her weighted since she is there weekly. And guess what!? Little miss Belle is 7 POUNDS! So in twelve weeks, she's gained two pounds. Hopefully it's all due to the G-tube and it will just keep going up and up. Also, she is super visual. As always. In the NICU the nurses said she was very 'social'. She loves looking around and seeing what's going on. But now, she is starting to really look at you. She is smiling more and more, cooing, and just being such a cutie pie! It's tough because just laying her back a little to look at her and talk with her gives her reflux. It's just a balancing act. Right now her voice is pretty raspy from that, combined with crying a bunch. It's sad. We've been giving her Tylenol for any pain she might be having, as well as Zantac and Prevacid.
It's just nice having her home though. I'll take having us all together over a few extra hours of sleep and a more organized home. <3
With love,
The Polks
Well we got home with Miss Anabelle on Saturday, so we've been home for 5 days now. On our own. With this stinking G-tube stuff. It honestly hasn't been horrible. It's just difficult to move around the house while holding her. I feel like our home has transformed into some sort of hospital clinic now. We have an IV pole and all. Oh, and our dumb apnea monitor doesn't work correctly, or we're using incorrectly.
She is still having pretty bad reflux. She is just so darn sensitive. We lay her flat to change a diaper and it starts. And it's horrible. It usually doesn't come up, it just hang out in the back of her throat. Which isn't fun. I'm sure it is just sitting there burning her, and then she cries in pain, and I fear she will some day aspirate it. And she favors being held chest to chest, and dislikes being put down. We can sometimes get away with it, but usually not for long. We have to pad her swing so that she is basically sitting straight up. And she favors this one particular head position that makes it a little tough to lay her down on her back. Luckily our home therapy people let us borrow this pillow thing. It's called a Versa pillow. It's full of little beads, and you shape it how you want, then you can suck out all of the air and it holds its shape! We finally got to use it today. She is actually liking it, kinda.
I am also excited because they do craniosacral therapy! I just learned about it earlier this week, and was sure it would be hard to find, and expensive. Luckily I asked, and they do it! And it's free! I'm just hoping we can get enough visits for us to become comfortable enough to do it if we don't get visits for it at least weekly.
I don't know how I am going to get use to this life of doctors. I know we have just begun, but shoot! How do other families do this?! This week we have 6, yes 6! doctor appointments. In 5 days! This week we had pulmonology, two home visits, Shriner's for castings, a post op check, and sleep study.
Pulmonology didn't do too much. They said that they want her to see cardiology, neurology, and be followed by the pulmonology team. As far as positioning, just don't put her head to her chest. Duh. You see, Anabelle likes to arch her back and keep her airway open. It's hard for her to breath if she is in any other position, and sometimes even that position is hard. I mentioned Stridor, and they agreed, but didn't say yes or no. Just 'yeah, that's a possibility.' UGH. Like I tell Amelia, it's either yes or no.
On a good note, we weighed Anabelle at Shriner's on Tuesday. We use their scale for her weighted since she is there weekly. And guess what!? Little miss Belle is 7 POUNDS! So in twelve weeks, she's gained two pounds. Hopefully it's all due to the G-tube and it will just keep going up and up. Also, she is super visual. As always. In the NICU the nurses said she was very 'social'. She loves looking around and seeing what's going on. But now, she is starting to really look at you. She is smiling more and more, cooing, and just being such a cutie pie! It's tough because just laying her back a little to look at her and talk with her gives her reflux. It's just a balancing act. Right now her voice is pretty raspy from that, combined with crying a bunch. It's sad. We've been giving her Tylenol for any pain she might be having, as well as Zantac and Prevacid.
It's just nice having her home though. I'll take having us all together over a few extra hours of sleep and a more organized home. <3
With love,
The Polks
Oh, and here are a few pics of the latest hospital trek
'Uhh... mom, What is this thing?!'
She loved this thing! Don't tell, but it made it home with us :D
Comfy at the hospital
After surgery, hooked up to some machines; Her feeding pump, leads, pulse ox, as well as oxygen. She liked the bouncer/swing they had though!
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