Tuesday, November 3, 2015

Curve Ball!

Alrighty, well you may have read my post from earlier this morning about the tentative plan for today and tomorrow. I should have know better than to post what the plan looked like, because it can ALWAYS change. And that it did.

I got there for Danielle's scans today and she was feisty as ever! Super excited to see her mama and telling me all about what she's been up to. The PICU doc came in, told me the plan for the MRI sedation etc, reviewed what they were doing and looking at and perfect, I was good with it. Just before they were ready to take her down, she was extra feisty moving all around. I picked her up slid her back up and her hands got a little grabby and opps, this happened. She thought it was SO funny.
video

A short time later they took her down and I waited in her room. Now over the weekend they moved us to a nice big room. Full couch, 2 reclines and the huge plus, our own bathroom. We've had a room like this before when she was there for an extended amount of time. Well we are just about to week 4 but are going home soon right.......here's the curve ball.

The docs came by to do rounds but decided to skip Danielle since she was down at MRI. Hmm, that sounded a little off to me so I was already alarmed by that, but ok whatever. So I sat and waited and she came back and was feisty still, you would never have known she was even sedated for the MRI! They said she didn't fully go to sleep and was a bit of a wiggle worm. She sure has a tolerance that's for sure.

So she got settled and the Infectious Disease doc came in. And he brought bad news with him. No surgery for tomorrow. Her CSF (Cerebral Spinal Fluid that is draining outside her body now) the culture from the 31st grew out infection. Staph Infection. NOOOOO. This is what she had last year. Not again :-( My heart is breaking for my girl. This complicates things even further.
First they have to let that culture grow for a few more days to try and figure out exactly what type of staph it is so they can treat it. Then they need to figure out how long they need to treat it for, depending on what kind of staph it is. Last time it was MRSA, which is bad bad bad, and they had to treat it for 3 weeks before they would consider surgery again. This will be day by day until we know what kind of infection this is, there will be no real game plan until then.

In the mean time, what does this mean? It means at least 2 more weeks in the PICU. It means they took her off the current antibiotic ampicillin and now are switching to Vancomycin again and adding in Rifampin. Rifampin if you followed along last year is a hard core drug.
Rifampicin (INN, BAN), also known as rifampin (USAN), is a antibiotic used to treat a number of bacterial infections.[2] This includes tuberculosis, leprosy, and legionella, among others. Often it is used along with other antibiotics. It is also used to prevent Haemophilus influenzae type b and meningococcal disease in those who have been exposed. Before treating someone for a long period of time testing the liver function and bloods counts are recommended. It is available by mouth and intravenously.[2]
Common side effects include nausea, vomiting, diarrhea, and loss of appetite. It may also turn urine, sweat, and tears a red color. Liver problems or allergic reactions may occur. It is part of the recommended treatment of active tuberculosis during pregnancy even though safety is not clear in pregnancy. Rifampicin is of the rifamycin group of antibiotics. It works by stopping the making of RNA by the bacteria.

I am struggling to find the words. I was struggling to tell my girl it just isn't time to think about home yet. I am struggling as a mommy, thinking what else can I do for my baby, what else can I do to make this easy on my family. I am struggling to tell Dylan that it's just not quite time for his sissy to come home yet. As the words to my favorite country song say: 'Aint like I'm the only one that's been here before.'  That is so true and what we keep telling ourselves. It could be so much worse. For some family's it is worse. The blessing in all of this today is that they found this infection BEFORE they went in and did surgery tomorrow. Because had they found it after, we would have had to go back in, take it all out and start all over again. Thank you lord for putting this in front of our face today and haulting that surgery when it just wasn't time. The rest we will deal with. A few more weeks we will deal with, or whatever it is. At least we have our baby girl.
I'd love some extra prayers sent to our girl today friends. If you have them in your heart. Thank you Thank you Thank you.

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