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Raising Special Needs Kids Raising Special Needs Kids

FINALLY! But the chaos doesn't end here **appt update**

Posted by on Feb. 6, 2014 at 11:25 AM
  • 20 Replies
They had to up Ty's feeds because he's losing weight, but they didn't want to concentrate his formula more (it's currently at 24kcal) because it can start a whole slew of new issues. So they upped his rate. Well upping his rate is giving him more fluid and he's on fluid restrictions so they were worried his sodium would drop again. Well this morning it jumped UP 4 points, finally putting him in range meaning WE ARE GOING HOME!!!! We've been here 15 days! Blagh!

But the chaos isnt ending here. He has a cardiology appt tomorrow with a different cardiologist. Today we have to recertify for our nursing company. Then his GI wants to see him next week and on the 24th. Then he's seeing the ADHD clinic on the 19th. Then blood draws and whatever tests GI wants. And Ty starts homebound schooling Monday. Plus I'm supposed to have an endoscopy next week. Total chaos this month!

*****cardio appt****
Not sure how to feel. Was nervous going in because everyone who has seen him has said it takes a lot to convince him there's an issue and he's dismissive and egotistical and a jerk. Well our cardiologist treating Ty's dysautonomia is who referred us to this cardio. He was awesome! Seriously the nicest guy! Got right to the point, very open about his thoughts and explaining everything. We saw him because when sleeping Ty's heart rate will drop into the 40's. So he said his concern isn't the number itself but the long pauses causing that number. He said the machines work by averaging out the rate so you can have 90bpm then a long pause then 90bpm again but the machines averafe it out to 67bpm. So the plan is to do holter monitors every othrr month for 6 months. If we keep missing it, they will implant a recorder in his chest and set the parameters of when to record. If they find he's having pauses of 5+ seconds or more, then they will put in a pacemaker. If it goes untreated, it could develop a deadly heart arrythmia. He said that most kids get the pacemakers out after 5-10yrs so it doesnt have to be permanent.
by on Feb. 6, 2014 at 11:25 AM
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Replies (1-10):
Momof4AEMW
by Gold Member on Feb. 6, 2014 at 11:40 AM

 Oh goodness!  So glad you are all going home!!!!  But wow mama, hold strong.  You're in for a long month!

mandee1503
by Amanda on Feb. 6, 2014 at 11:46 AM
You are super busy! Hope everything goes smoothly for you guys!
jjamom
by Michele on Feb. 6, 2014 at 12:13 PM
Yay for getting to go home! Hang in there and be strong for a busy next few weeks.
Linagma03
by Gold Member on Feb. 7, 2014 at 12:51 AM
So glad you are all going home! Busy month ahead try to stay positive amid the chaos. You need a really BIG HUG!!
Mipsy
by Chelle on Feb. 7, 2014 at 8:56 PM
Thanks gals
Codysmom2106
by Bronze Member on Feb. 7, 2014 at 9:02 PM

I'm so glad that you are at least able to go home, I hope things only get better from here.

Rosielyn
by Member on Feb. 7, 2014 at 10:02 PM
Prayers and hugs go to you and ty
Mipsy
by Chelle on Feb. 7, 2014 at 10:50 PM
Appt update
arkansasmama08
by Gold Member on Feb. 7, 2014 at 11:03 PM
Wow. It hurts my heart to think of such a little guy with a pacemaker! That's exciting to have a Dr that is taking his problems seriously and is taking steps to help. I sure hope things start looking up for you guys. I think of yall often
Mipsy
by Chelle on Feb. 7, 2014 at 11:06 PM
Thanks :) and yeah he was totally calm about it and says he's put pacemakers in kids a lot so he's experienced and not opposed to that idea for him if needed. Granted the altrrnative is a deadly arrythmia developing which can not be fixed. So a pacemaker is the best bet. If he finds what he thinks he will

Quoting arkansasmama08: Wow. It hurts my heart to think of such a little guy with a pacemaker! That's exciting to have a Dr that is taking his problems seriously and is taking steps to help. I sure hope things start looking up for you guys. I think of yall often
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