Saturday, January 12, 2013

Q&A #255

Huh, I can't imagine what in the world could be holding you up in the house you're currently in. Are they holding you hostage, lol? I'm sure you'll share what you can when you can ;). 
Yes! LOL It's a big old mess. I'll go into when I can... like, when we've moved and don't have to think about it anymore!  

I'm very behind and I'll keep reading, but have you all been able to move yet?
We get the keys to our house this weekend and will start moving. I haven't packed a darn thing. LOL 

I'm sure that you get tons of unsolicited advice. But, I thought I would share our story with you. If so many Momma's hadn't told me their story, I don't know where we would be now...
My son had the same issue. We had to have him sedated, and have an ABR test, because we thought he was deaf when he was a baby. After 3 years, countless ear infections, and ear tube surgeries. I figured out that he was allergic to milk. He did not test positive on any allergy test at the Drs office, but I kept reading about dairy allergies/intolerances causing fluid buildup. We took out every trace of dairy, and he has had one problem with fluid in almost 4 years. And, that was after a diet "infraction". 

Hmm, I actually have not heard of that before. Kennedy doesn't actually get ear infections though... they never hurt or anything. She just has fluid built up in there any time her tubes fall out and then her hearing goes down. Her ENT said it's because her ear canals are so tiny, which is common with Ds. I will ask her ENT about this... she's going back for a recheck on the 30th. Thanks!!

Prayers for Kenn! Is there another more permanent ear draining procedure they can do since hers keep falling out? Hope all goes smoothly !! 
I asked about that and apparently we are already doing the most "permanent" thing for her. I guess there's nothing more right now. They are going to start having her come in to get her ears cleaned out every few months (IF she can tolerate it... I have heard it's uncomfortable) and they're hoping that will help. We'll see! 

Each of my daughter's first 3 sets of tubes lasted about a year, then we had the T-tubes put in and they have lasted almost 3. Are you going to try those this time around? 
Yes, this is actually her 3rd or 4th set of t-tubes. The regular tubes (pe tubes??) would fall out within a month or so! It was nuts! These ones last about a year on average. *sigh* I've heard so many stories of kids who actually had to have theirs removed because they never fell out! Not the case here!

The fact that Kennedy's ear tubes have fallen out for about the upteenth time is that another Kennedy medical anomaly or is this relatively common with the tubes? I have heard that they fall out, but every set? Just wondering what is it about Kennedy that makes them fall out or if this does happen a lot why they aren't coming up with a more permanent solution. 
I think it depends on the kid. As I mentioned above, Kennedy has REALLY tiny ear canals. The ENT said they're about the size of a 2 year old's instead of an 8 year old, so that, combined with the fluid could be pushing them out. Also, we know her body does NOT like foreign objects in it. When she was going through chemo and had her Hickman lines, they kept falling out too because her skin would just break down around them. Her doctor there said she broke the record for the number of lines she had to have put in in only 6 months! Then when she got her halo, her skin broke down around the pins too and caused all kinds of issues. So who knows, maybe the same thing is happening inside her ears with the tubes? Hard to know for sure since we can't see in there. Our ped can't even see in there with his otoscope because her canals are so small. 

why isn't Kennedy a special case with her hypoglycemia? It seems like that should matter. :(
Well, I think in this case there was just a LOT of miscommunication. I didn't get her surgery time until 2 days before her surgery. When I mentioned I was worried about her blood sugar, the nurse who called told me that the anesthesiologist would be calling me the next day and to mention it to them... they never called. So when I got to the hospital I mentioned it again. Our nurse there tried to contact anesthesia to see if they were even planning to do an IV and what would be in it. They didn't answer until it was time for her to go back and they weren't go to put an IV in... which they usually don't for ear tubes. I think the fact that they don't KNOW Kennedy (that's her only specialist in that hospital) and they just looked at her chart and saw she was 8 years old, made them schedule her later... they didn't even know she had Ds until we got there. Now that I KNOW all of this, I'll push next time for an earlier surgery slot. Of course I hope "next time" won't be for a long, long time. 

If her issue with hypoglycemia is so severe, why don't they make sure that she has a constant dextrose IV? As someone who has had surgery before, this can be allowed depending on the severity.
Since they don't typically do IVs for ear tubes (she just did sedation through a mask), they didn't want to stick her unless they absolutely had to. They said if it took too long to get her back (they were like 2 hours behind schedule anyway at that point) that they could stick an IV in and get her some sugar, but I agreed to hold off as long as she was hanging in there. Like I said, next time I'll be more prepared... it was just kind of chaos this time.  

How do you guys not know who Carly Rae Jepsen is?.. She's basically shoved down our throats right along side Bieber. LOL. 
LOL I am awful with names! If my kids don't talk about them, I have no idea! Kassidy did know who she was of course and Kennedy just knows her Call Me Maybe song lol. 

Loved her face...Hey I saw the Moody Blues, third row center, and Justin Haywood was singing Nights in White Satin to me.. and only me.. So I am sure he said I love you to only Kennedy.. and 33 years later she'll still remember her heart beating just a little faster.. 
:) I have no doubt!! She has been talking about it EVERY day so far... you know, that he loves her and that she saw him "naked"! ha!!! 

1 comment :

Lynn said...

Know that I'm still here praying!
Revelation 21:1-4 And I saw a new heaven and a new earth: for the first heaven and the first earth were passed away; and there was no more sea. And I John saw the holy city, new Jerusalem, coming down from God out of heaven, prepared as a bride adorned for her husband. And I heard a great voice out of heaven saying, Behold, the tabernacle of God is with men, and he will dwell with them, and they shall be his people, and God himself shall be with them, and be their God. And God shall wipe away all tears from their eyes; and there shall be no more death, neither sorrow, nor crying, neither shall there be any more pain: for the former things are passed away.
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