Wednesday, November 4, 2015

One foot in front of the other...

Last night was pretty rough for our girl. It was Mommy and Danielle slumber party night and I was pretty excited! After the day she had, it was such a whirlwind, I was thinking we would hang out and get a good nights rest. Well it didn't happen just like that.
I did get some good smiles early on in the night. She is such a little dolly.  

Danielle was pretty fussy starting around 9pm. Her heart rate was high, she was moving everywhere in her crib, sliding down and just super vocal. Her heart rate was also pretty high. If her heart rate gets above 120 that usually means she's uncomfortable. Its really important to be able to notice this because if you let it go on too long, then you are already behind on her pain control and it takes forever to get caught up because she is so feisty and really can be harmful for her because her pain tolerance is so high. If we see 130-140-150 or even higher, than something is definitely going on. I started noticing her heart rate elevated, she did have a feeding going thru her ng tube, down her nose, and also she just sounded terrible. I was really concerned that her feeding tube had gotten shifted a bit and was maybe either up out of her stomach, or that is was coiled. I had the nurse page the docs. The doc came in and she wanted us to try 4 things first. Stop her feeds, Reposition her, give her some IV Tylenol and do some blow by oxygen, and get back to her in 15 minutes. Well time went on, I was repositioning her often and before we knew it an hour went by. The doc came back in and I really almost begged for an x-ray. I said I just really feel something is going on in her tummy, she won't lay on her tummy, and that is how she sleeps, she is super feisty and the Tylenol hadn't helped at all. She didn't think the x-ray was necessary because her tummy was soft. Oh mama bear was getting a little feisty here. So I backed down and said ok, but if she continues I NEED you to do something else.
About midnight they did rounds on her. The staff doctor knows Danielle well and filled me in on the plan to take care of this new infection. Basically it was Danielle' Anaerobic culture that grew staph. They do an aerobic and anaerobic culture of her (CSF) Cerebral Spinal Fluid daily. So it basically means one culture responds to oxygen and needs it to breed and the other it doesn't. Here is the difference:
Aerobic bacteria gets energy from food when compared to anaerobic, that can survive in places where there is less oxygen, such as human guts. Some anaerobic bacteria also causes diseases in those areas of the human body where there is less oxygen supplied. Aerobic bacteria cannot grow without an ample supply of oxygen involved in a chemical reaction, whereas the anaerobic term does not imply this.
So unfortunately Danielle's Anaerobic Culture is what grew out the Staph. The Staff doctor really apologized to me about this and felt really bad. Because this infection 99% probably came from the hospital. UGH. So after those conversations I climbed back into the recliner hoping for some sleep. It didn't happen.

This fussiness went on for about 2 more hours and I had finally had enough. I told the nurse, you have GOT to do something for her, you have to figure out what is causing this. She is clearly very uncomfortable. So they wanted to pull out her ng tube and place another one. I said NO WAY. Why in the world would you put her thru that! She is already super ticked off and why not just get an x-ray to see if its in position. So they agreed to that.
X-ray came in, took some pictures about 3am and guess what. Her NG tube was smashed up along the side of her stomach. So every time she moved that was rubbing, and every time they tried to feed her or put her meds thru the ng it was probably really ouchy on her tummy. I tell you what, if your a parent, NEVER question your gut instinct. That Resident got a really important lesson from this mama. And I only say that because we know her very well. Granted she dows throw curve balls our way at times, but I just knew that something in her tummy wasn't right and by the way she was acting during feedings etc, I thought her ng was the issue. It was. They pulled it back 2cm and she was like a new kid. Relaxed and she settled in nicely.
All night I watched this feisty little hand waving around, banging her ring toys all along the sides of her crib. She was very particular in making sure I was still there and making tons of noise and not letting me sleep, letting me know that she was uncomfortable and that I knew she was still there. Oh sweet girl, how I love your feistiness You are & always have been the true definition of a Fighter!
 Unfortunately didn't sleep and hasn't really slept today. Tonight is Father/Daughter slumber party so hopefully Brad and her have a really great night together. With her having a new infection also it may cause her to feel a little bit uncomfortable. We believe they literally caught the infection right away, so her labs are still all pretty good. It is just an unfortunate slow process to let the antibiotics do their thing and get that staph out of her head and anywhere else in her body it may be. One foot in front of the other. Slow and steady wins the race right. We don't want to be doing this again EVER, so whatever it takes to get her better now is what we are ok with. 
As always thank you for the prayers, positive thoughts and energy sent to our girl. She is so loved that is for sure and not one prayer goes un noticed. We send you a very heart felt message of Thanks, for thinking of our beautiful girl.  

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