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Raising Special Needs Kids Raising Special Needs Kids

Small update

Posted by on Jan. 4, 2014 at 7:44 AM
  • 15 Replies
I didn't know what to title this, lol. But I have some small updates since we were in the ER Monday. So they said Ty's xray showed like bits of probably hard stool and parts that were probably liquid. Tuesday Ty had diarrhea, which is an indication it probably just went around the solid pieces. He's not been again since then and we refuse to do another enema. His stomach is being cruddy again and distending so we drained him Tuesday and got stinking 10oz out in a matter of minutes. He felt much better after that and stopped coughing and refluxing a ton.

Then Wednesday night Ty's alarm for his heart rate kept going low. It was having a really hard time staying above the 40's. We called cardio Thursday and they ordered a 24 hour holter so we got that put on yesterday and he takes it off today but we return it Monday. So waiting to see what that shows.

Then I spoke to the husband of a mito specialist in Atlanta yesterday. We really like what he had to say and talked about Ty etc. It's quite expensive for the appt plus traveling there. We can also do phone and Skype appts too. We would need to be physically seen every 2yrs. But it sounds hopeful to go see her. However, there's a new metabolic Dr at our hospital who sees mito patients. So we are trying to get in to see him. My dh wants to see him and see what he does or says before going out of state. We are also going to discuss it with his pedi this month.

Then our nursing should pick up again next week, yay! And Ty's adaptive stroller should be coming next Friday too. Then school for Ty starts Monday.
by on Jan. 4, 2014 at 7:44 AM
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Replies (1-10):
Chirinos
by Member on Jan. 4, 2014 at 8:02 AM
I hope everything works out for you guys and Ty. That dose Ty have?
Mipsy
by Chelle on Jan. 4, 2014 at 8:50 AM
Thanks :)

Ty has asthma, GERD, gastroparesis, intestinal dysmotility, dysphagia, dysautonomia, epilepsy, hypoxia, food allergies, is being treated for mitochondrial disease, is fed via jtube, and on supplemental oxygen as needed. I think that's everything, lol!


Quoting Chirinos: I hope everything works out for you guys and Ty. That dose Ty have?
Momof4AEMW
by Gold Member on Jan. 4, 2014 at 9:20 AM

Some good progress there!  Thanks for the update! 

jjamom
by Michele on Jan. 4, 2014 at 9:21 AM
Hugs! Poor little guy. :(
Mipsy
by Chelle on Jan. 4, 2014 at 11:56 AM
Thanks gals :) I forgot we started Ty's new meds for his mito cocktail too. We have to crush the pills and put in water etc etc. Well going to get a pill crusher today, my hands are stained from one of them and stink like them, ew!!
Chirinos
by Member on Jan. 4, 2014 at 1:30 PM
Wow poor little guy. You guys are in my thoughts and prayers.

Quoting Mipsy: Thanks :)



Ty has asthma, GERD, gastroparesis, intestinal dysmotility, dysphagia, dysautonomia, epilepsy, hypoxia, food allergies, is being treated for mitochondrial disease, is fed via jtube, and on supplemental oxygen as needed. I think that's everything, lol!




Quoting Chirinos: I hope everything works out for you guys and Ty. That dose Ty have?
mandee1503
by Amanda on Jan. 4, 2014 at 1:41 PM
Good report for the most part! Glad there is a dr locally for you guys!
letstalk747
by Joy on Jan. 4, 2014 at 2:01 PM

lots going on , how do you drain him ?  10 ounces out in minutes wow

jessylynn33
by Member on Jan. 4, 2014 at 11:17 PM
U can always put the pills in a zip lock before smashing them. Hope he gets better.
Mipsy
by Chelle on Jan. 4, 2014 at 11:27 PM
We hook an extension to his gport (the one that goes to his stomach) and then hook a bag to the extension and unclamp it. Out pouring comes yucky stuff.

Quoting letstalk747:

lots going on , how do you drain him ?  10 ounces out in minutes wow

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