Last Tuesday we had Rae’s gtube placed.
It should have been 2 nights then home Thursday morning.
But if you know anything about Rae, she refuses to do anything standard.
So after 10 days,
7 blood draws,
5 antibiotics,
4 bags of IV fluids,
4 IV changes,
3 hours of sleep,
an ultra sound,
a barium contrast X-ray,
a staph infection (possibly MRSA? They never confirmed),
a room change,
suspected septic shock,
oh and a g tube surgery, we are HOME.

You can’t make these things up.
They told me there was a 95% chance of NO infection after the gtube placement, she had antibiotics before the surgery, right after the surgery and still managed to get a crazy infection. The site around her tube was very red and continued to spread for several days. Her fevers went up between 102-105 for 4 days until they continued to change her antibiotics until they worked. So she had a drug resistant staph infection….but they never called it MRSA.
But she would get an infection, we know how crappy her immune system is, so it wasn’t THAT surprising.
I was, however, surprised by several things in the past 2 weeks:
The tube leaking. It leaked a lot. It leaked so much she was missing hours of her feeds from leakage. Her digestive system is so backed up we decided to do low and slow feeds 24 hours a day (Hence why I was looking for a feeding tube backpack for her).

She still can cuddle. PRAISE GOD! That was seriously my biggest fear. I was so afraid she would be in so much pain from the tube that she wouldn’t want to lay on her belly or snuggle up against me, but she does. She’ll arch her back if she’s on my hip and it’s sensitive, but never to the point where she doesn’t want to be held, which I really feared would be the case the first few weeks. She can even sleep on her belly and it doesn’t bother her.

I wasn’t planning on continuous feeds, she was supposed to just have the night feeds like before. And let me tell you, continuous feeds for a 16 month old is ridiculous. She has to wear a back pack with her pump in it and tote it around all day. She’s just barely 19 pounds and she’s carrying around a 2 pound pump, which doesn’t sound like a lot, but it is. And the tubing gets too long and she sometimes almost trips on it. And just little things like getting her in and out of the car and putting her back pack back on and taking it off. And making sure the tube isn’t kinked anywhere or else the pump will beep at me.  She’s down on her weight despite all the IV fluids and continuous feeds, so we really can’t afford to just give her a few hours without the feeds right now.

I’m surprised at the way I was treated at the hospital. And I mean that in the best way possible. I mentioned in a previous post about one of my nurses telling Big S and I over and over how great we were. Well I also had another nurse ask me how old I was, which as I’m not so coy about, I HATE being asked and told how young I am. So when I told her I was 23 and Big S was 24 she responded in the most amazing way I  have ever experienced. She went on about how great that was that we’re so young and handling everything so well and how much we’ve accomplished by our age. It made my day/week/month.

People still notice the tube. I figured it would be more discreet than the NG tube, seeing as that literally is as plain as her face. But, I have only been out with her once since we’ve been home and it’s obvious people notice the tubing. I’m almost 100% sure that’s the only reason the guy in Walmart paid for our groceries. *Back story on that, my debit card was hacked several months back and they JUST sent me a new card while we were in the hospital, so of course I didn’t get a chance to activate it. So when I came home and saw we had no food I had to go get groceries, forgetting to activate my new card so I couldn’t pay for my groceries. I stood there awkwardly and called Big S to bring me his debit card. Then my dad after Big S said he couldn’t leave for a half hour. Then the guy behind me heard me explaining to Big S why my debit card wasn’t working and paid for my groceries. Then told Rae to be a good girl and be big and strong and said Merry Christmas as I completely choked up and thanked him profusely, fighting the urge to lunge out and hug him and cry on his shoulder. I walked away completely blessed and embarrassed at the situation.

I’m shocked at how accepting Little S is. They take baths together. It’s their favorite thing. They have full blown laughing fits every single night together and it brings such a joy to the entire house every evening to hear them together. So we knew he’d see her new tubie soon after we got home and ask questions. And he did, right away, he asked if she was “so hurt”. I gently explained to him that it was like her yellow tubie she had in her nose a while ago, that it would hurt for a little bit so we have to be extra gentle. Then I explained that it helped give her the food she needed to get big and strong. His reaction? “That’s so awesome! She’s getting so big and strong!”

She’s not sleeping though. I know she’s probably still having some discomfort. And I know it’s a major adjustment for every one in our family, and extended family and everyone who basically comes in contact with her. It’s a learning experience to figure out what’s going to work and what isn’t going to work. We’re all learning how to better care for her and make sure she’s still that happy, vibrant little girl as she transitions through this… But she needs some sleep for that to happen. I mean, she is up for HOURS the past few nights. And she is skipping naps. And she is just miserable sometimes. And I don’t know how to help her. There’s only so much tylenol she can have. And only so many times I can snuggle and rub her back, and give her a paci, and turn her music on, and rub her back, and stoke her eyebrows, and rub her hair, and give her a paci and on and on and on. I think we figured out she’s just scared of me leaving her. She’s even had a hard time with Big S trying to comfort her. Almost everything has to be me.

But. I digress.
I’m blessed beyond words. Despite the chaos of the hospital. The days that seem never ending and the tears that keep pouring. Despite the exhaustion and sleep deprivation, the leaking formula and the constant weight on both of our shoulders (hers from the backpack and mine from the guilt of putting her through this), as much as it SUCKS right now, I know this is a short term struggle. The benefits of the right nutrition out weigh the stress and trial.

For God has not given us a spirit of timidity, but of power, and love and self-discipline.
2 Timothy 1:7.

Just have to power through and know it will get better with a little bit of time and a whole lot of Jesus.


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