That being said, after such a crazy Monday.. we've had a good week. A lot of progress after our backwards step.
They found some e.coli in her cultures. This was devastating to me because it would be caused by stool. I am the one cleaning her up, so I felt like it was my fault (I know, Moms have a funny way of making everything their fault). But honestly, she hasn't had MUCH diarrhea and her incision is much higher than her diaper line.. AND it was in her neck. I promise we are being clean. Dr. Mangano seemed suspicious that this was the actual culprit. Maybe he was just trying to make me feel better (but he's not really that kind of guy).. but he said he thinks it's just as likely that the sample was contaminated since it grew so few e.coli. Also, her white blood cell count was normal, indicating no infection. Puzzling, right? Her CRP (which is a lab indicating inflammation) was slightly elevated. He said this would be elevated because of her spinal surgery. The treatment for e.coli is a wash out of the wound (which he had done in surgery) and rocephin. This is an antibiotic she would be on IV for 10 days. She started this antibiotic. They redrew her labs this morning, specifically the CRP. If it is trending down, they will switch her to bactrim, which can be taken orally. And she won't need her IV for 10 days. They don't typically use IVs on the rehab floor because it interferes with therapy.. so this is good news!! Just waiting on the results!!!! (***update.. CRP went down.. WHOOOOO!!)
However, because she IS still on IV antibiotics and needed labs.. she needed a new IV this morning because her IV was bad. Merrr.. nothing like being woken up at 5am for multiple IV sticks on your poor, scared baby. They ended up calling the VAT team (vascular access team) and starting the IV.
The awesome thing about Vivian (well, one of the MANY) is she recovers SO WELL! She can be so scared, and crying so hard.. but as soon as it's over, she proclaims "I'm better, Mom!!!" and laughs. And after she gets a lab draw, IV, tube placed (replaced, readjusted, etc.).. she always tells me after "my friend did that". I love that baby girl. She is so quick to forgive and turn things positive.
Vivi's NG tube wasn't properly functioning so it's taken a few adjustments and tests to get it to properly function. That was... fun! ;-) But so important. My girl needs a LOT of nutrition to keep up with that healing. I want to maximize all her healing right now so we can get back to rocking out therapy. The problem with her tube is.. it makes her want to eat and drink even less. And she won't take oral medications now. I think it just feels really funny (especially since she has to lie flat).. so we put everything through her tube. But her feedings are giving her enough calories and fluid that we don't have to be concerned as much about her not eating or drinking. She gets 3 boluses throughout the day and then a continuous feed throughout the night, I can tell she has more energy and her mood is improving. Yay, Viv!!!!
We still have no answers as to WHAT caused this. The rheumatologist are on her case now. Maybe everyone else is exceedingly more intelligent than I am.. but I was like.. um... what exactly is a rheumatologist? Do they think she has arthritis? (Does Grandview have a rheumatologist?? lol) I had no idea what kind of diseases they would be looking for. Inflammatory diseases. Specifically sarcoid, again.. even though the CT didn't show it. They were also looking at Wegener's disease.. which also doesn't make sense. The doctor actually called her "an enigma". Cool. Basically, we just don't know. And it's frustrating.
The plan is for her to stay on the Neurology unit throughout the weekend then back to rehab Monday. She will stay in her brace while she is up and out of it while she is lying flat. In August, she will have a CT done of her spine to see how she is healing. At that point, we (okay, they).. will decide if she can come out of the brace or wear it another 3 months.
I asked Dr. Mangano yesterday to basically shoot it to me straight.. "my girl is going to eventually have screws and rods placed, right? It's more of a matter of WHEN?!". In my mind this whole time, I assume she is going to need a spinal fusion at some point. He doesn't think that's the case. He did this same surgery on an 11 month old 7 years ago.. and that kid is walking around perfectly fine. Now, his wasn't as long as Vivian's.. but it did involve his cervial-thoracic area.. which is the main area of concern. (Hey Mom, there is the warm, fuzzy anecdote we were looking for back in April!!! Haha!).
He even said he thinks she may be running around by the time of her CT in August. WHAT!!!!!! I love this guy. (You guys.. he only says that from a neurological point of view.. he hasn't actually seen her up lol! But.. just from her movement in the bed..)
Her wound looks really good. It doesn't look like it'll heal as pretty as before.. but.. whatever!!! I've got my essential oils on board this time around. ;-)
Things just seem less grim. I really feel optimistic I'm going to get my girl back to baseline. I know we have major adjustments coming our way.. but I feel okay about it. I feel at peace with the hard work we are putting in and the hard work we will continue to put in because I just know I'm getting my girl back. My dancing, singing, funny, sweet, tumor free girl.
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