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Just want a break

Posted by on Dec. 27, 2013 at 1:16 AM
  • 12 Replies
I just want a break. Not from Ty, but from all this medical crap! I'm so sick of making formula, fixing his feed bag and pump and backpack 20x a day (and Ty is sick of his pump too), changing his diapers and sheets several times a night, sick of filling 10 syringes with meds at least twice a day sometimes three, sick of checking his oxygen, sick of his nebulizer, sick of all the cords between his pump and pulse ox and oxygen, sick of the phone calls and emails, and soooooo sick of the appts.

We had a crappy appt last week with genetics. It was crappy for several reasons but she added 3 more meds to his mito cocktail. Then she thinks his hypoxia can be related to his dysautonomia so she's contacting his cardio and requesting a 21 day holter moniter but instead of the one with the stickies all over this one is a needle they put in his chest and he carries a small battery pack. Yeah totally freaking out about that but they could be able to better regulate his heartrate (been in the 40's lately) and possibly treat and fix his hypoxia which would be phenominal. But this means more appts and more crap. We have to get our blood drawn for whole exome sequencing too, all 3 of us.

Tys hypoxia is getting worse which is just frustrating as hell! I want it to end! He's been hitting low 60's and 70's during the day after being really active and on average is just sitting at 90-93 during the day, pedi says we need to keep him above 92 so increasing time on the oxygen and needing to call pulm and let them know what's going on. So again, having to call another Dr and probably another appt.

Then stooling. Ugh. Distention is back and Ty is having a really hard time pooping. He can't get it out. We have upped his miralax, upped his senna, even doing magnesium citrate daily for the last few days and not helping! Only thing helping move some are enemas. Ty *HATES* the enemas. I don't blame him! But he fights it so bad, its just hell for all of us. We think at this point he needs a clean out. You can feel the stool in his stomach. It's just miserable. And again requiring another call into GI this week alone, most likely needing an xray. Just so done with all of this! I hate not being able to fix this on our own. We tried, only reason I called GI earlier this week was to find out what port to put the mag citrate in, his j or g port. We've been battling this all month. But I wish it were just easy to take care of. I feel like a nurse, not a mom, and like the drs are more of a parent than I am and I feel like a failure having to go to drs just to help Ty do the most basic of functions like eat, breath, and poop.


Ever just want to stop it all and go off the grid and live in a cave?!
by on Dec. 27, 2013 at 1:16 AM
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Replies (1-10):
mandee1503
by Amanda on Dec. 27, 2013 at 2:18 AM
Sounds good. Ill pack my bag! *hugs* I really wish you guys could have a good month. It has to be so overwhelming. I hope they are able to help Ty so he feels better soon.
darbyakeep45
by Darby on Dec. 27, 2013 at 9:25 AM

I'm so sorry mama...I'm sending you all the hugs I have.  Love to you guys!

arkansasmama08
by Gold Member on Dec. 27, 2013 at 9:37 AM
I'm sorry mama. It sounds so exhausting and stressful. I get tired of drs appointments and therapy, but at least we get a break now and then. I'm praying for you and Ty.
Mipsy
by Chelle on Dec. 27, 2013 at 10:01 AM
Thanks gals. We have had a break from speech therapy since October just cuz of Ty and I being sick, my mom.passing, and me sick again, then out of town. So it like rotates what we get breaks from but I just wish we had a whole month where we got a break from everything. No drs, no appts, no med refills, no issues, just staying stable and able to do stuff on our own.

I am trying to get excited cuz Ty's wish granters are coming tomorrow morning, but instead I'm more stressed cuz our house is a wreck lol! Since my mother got sick and admitted to the hospital a wrek before her death, we've not had time to clean at all. Then we just got home yesterday afternoon from my dads house. It was a miserable 12.5 hour drive.

Today i have to call pulmo and gi and I don't want to! I need to call our nursing too to restart servives (we put them on pause for now as we have been gone but now should be home for months)
jjamom
by Michele on Dec. 27, 2013 at 10:14 AM
I'm sorry. I know it seems endless. Hugs!
Bluecalm
by Bronze Member on Dec. 27, 2013 at 10:22 AM

I hope things settle down for you for awhile at least. I don't deal with 1/4 of what you do and I'm tired of medical stuff, can't imagine how you do it all.

Codysmom2106
by Bronze Member on Dec. 27, 2013 at 10:33 AM

I'm so sorry. It sounds like you all are going through so much. Lots of thoughts, prayers and well wishes. I hope things slow down for you and maybe you can catch your breath. Hang in there. 

Linagma03
by Gold Member on Dec. 27, 2013 at 11:47 AM

I'm sorry that this last month or so has been so rough. I am sending lots of hugs to you. I don't deal with anything near to what you do and I have times like that. I wouldn't worry at all about the house, people tend to be more understanding about a messy house than we give them credit for. And before you say anything I won't believe you when you say your house is a wreck or a disaster area. It is probably just messy and so you need to step back take a deep breath and close your eyes as you walk thru the room you think is the worse. Besides I believe a messy house is a house full of love. You can't have a lot of fun and love in a house where the clean factor is that of a sterile lab. 

Your house is a house full of fun and love!!!!! Now here is a huge HUG just for you!!!

Mipsy
by Chelle on Dec. 27, 2013 at 2:30 PM
Lol, you're lucky e cleaned a ton cuz otherwise I would have posted a pic just for you lol

Quoting Linagma03:

I'm sorry that this last month or so has been so rough. I am sending lots of hugs to you. I don't deal with anything near to what you do and I have times like that. I wouldn't worry at all about the house, people tend to be more understanding about a messy house than we give them credit for. And before you say anything I won't believe you when you say your house is a wreck or a disaster area. It is probably just messy and so you need to step back take a deep breath and close your eyes as you walk thru the room you think is the worse. Besides I believe a messy house is a house full of love. You can't have a lot of fun and love in a house where the clean factor is that of a sterile lab. 

Your house is a house full of fun and love!!!!! Now here is a huge HUG just for you!!!

Momof4AEMW
by Silver Member on Dec. 27, 2013 at 3:37 PM

Hugs, Mama.  It can be overwhelming at times when everything is hitting at once.  Try to enjoy tomorrow, maybe that will bring some pep back in to the old routine.   

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