Did you know it's a proven scientific fact that those who don't get enough sleep loose brain cells resulting in irreversible brain damage? It affected your memory. Having trouble finding your keys or phone or glasses? Forgot you had then in your hand or in your pocket or on your head? Yep I do! Why? Because I'm sleep deprived and am suffering the ill effects of it. Lame.
Tonight's trigger is Liam's Gtube. I am so frustrated with feeding tubes and the fact that it's always causing trouble. It's infected again and causing Liam pain. It's just not fair. The poor kid can't catch a break...and I can't catch sleep. (If I had the energy id insert a hysterical laugh here) ;)
He woke up in pain at 2am. Finally as I'm writing this at 5am, he is snoring on the floor.
Lately I've been experiencing wanting to just take the damn thing out and let him learn to eat by mouth. (That's my depression, anger, frustration and exhaustion working) Logically it wouldn't work. It would cause more problems.
I'm working so hard to get him to eat more by mouth. Problem is everything he gets sick he just stops and were back at square one. What worked last time usually won't work this time. He's also pretty much ditch the cuppie for the most part as well. It makes me sad and it makes me angry.
Why angry? Not angry at Liam but angry at CDH, the reason he has these problems. I find that yes I am Infact angry at God. Why would he let Liam be born with CDH? Why would he allow Liam to continue to suffer and have problems? Why would he allow any baby to be born with CDH? I also find myself thanking God. Thank you for allowing my son to survive when so many other haven't. It's a confusing ordeal.
I'm angry Liam has to have a feeding tube. I am also thankful that feeding tubes saved his life when he stopped eating. The feeding tubes and feeding pump have been the bane of my exsistance since he got it. It's caused so many sleepless nights and frustration. His stoma has caused him so much pain. And through it all Liam is still failure to thrive and not putting any weight on. He's been 22 pounds since June 2013. No matter how much we pump into him he just doesn't grow. So what's the point to all of this? Being as I am extremely exhausted and sleep deprived I just don't know. Maybe tomarrow I'll remember or figure it out.
But tonight I hate the thing. If we don't keep his stomach wrapped in an ace bandage the gtube falls out or gets pulled out and we (me me me always me) has to put it back in. The bandage can be uncomfortable. Like tonight because his tube is already hurting, any amount of pressure makes it worse. He cries, makes me wanna cry. It's not helping my anxiety. And I know it's not helping Liam either.
We (me me me) had to flush hi a mediport again today and he wouldn't stop wiggling and crying (don't blame him). In the middle of it I almost broke down crying myself. An anxiety attack just hit and I almost couldn't do it. I thought to myself how unjust and unfair and crappy this all was. I realized right after these thought ran through my head that I was having an anxiety attack so I took a few breathes and sucked it up. Needless to say his mediport got flushed.
Life is just one miserable mess after another. Liam can't catch a break from being sick. I can't catch any sleep. Were a miserable pair I tell you. But Atleast we have each other <3 <3 <3
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