Wednesday, October 21, 2015

OVERDUE Update-Please Pray....

I should absolutely know to update more often, and update on the good, fun things in Danielle's world, not just the scary things. I don't have a ton of time to update the entire story because I just got a phone call and need to rush out. Here is the just of Danielle....

We started battling what we thought was a UTI about 3 weeks ago. But with antibiotic she didn't get better, any better. So I made an apt to take her back to her local doc. Come to find out she never had a UTI and they failed to explain that to us in full and tell us to take her off the antibiotic. So she got a not necessary 10 day course of antibiotic.
In the mean time she was having low grade temps on and off. Danielle runs cool usually so this was a little concerning. I made the decision last Thursday to get her back in. We went back to our local doc and she checked her for EVERYTHING. And I mean everything, strep, rsv, UTI, Blood infection, and on and on. Nothing came up, except her labs were really high. Her CBC was high and more importantly her CRP, which is her inflammatory marker was REALLY high. Like it should have been less than 5 and it was 264! So she was SICK. After reviewing as much as we could, including a chest x-ray, we decided to get her to the U. The only thing we had not checked was her shunt, and it was a very reasonable concern at this point.
So I rushed her to Iowa City. They immediately did an MRI and a tap of her shunt to test her CSF fluid for infection. The good news, her CSF was clear, the bad news, she had an unknown infection somewhere making her really sick and they didn't know where. So they admitted her finally about 1am.
All thru the weekend they were testing things on her body. We came to the conclusion that something was going on in her tummy. Appendicitis wasn't ruled out and neither was Peritonitis, which is an infection of the peritoneum that can develop in several ways. Many abdominal organs contain germs that do not occur elsewhere in the body. If they spill their contents into the peritoneum, infection is the result. Infection changes the dynamics of body fluids, causing them to seep into tissues and spaces. The gall bladder, the stomach, any part of the intestine, and most especially the appendix—all cause peritonitis when they leak or rupture.

So she has an obvious infection somewhere but what is causing it, nobody has been able to figure out. Not only is Neurosurgery working on her but also Pediatric Surgery and Neurosurgery. So they started her on an IV rocephin antibiotic to see if it would help. After 2 days it finally started working. Good news right!
Well then they wanted to put a suction NG tube down her nose to see if we could suck out some air in her tummy and also see if any fluid would come up. Also, xray was showing a possible bowel obstruction. So they set her up with the NG suction and then took her to the Intensive Care unit and put a PICC line in. This helps so she can have long term antibiotics and also they can draw blood from it so they don't have to poke her so much. So that course of antibiotics puts her there for at least 2 weeks.

Well Brad and I have been switching off here and there staying at the hospital with her. IT works well and allows us to work a little bit and also stay at home and sleep in our own bed, plus spend time with Dylan. So last night Brad was there and she was more fussy and irritable than before. Noticeably irritable and the IV Tylenol wasn't touching her pain. So they decided to start her on a more broad spectrum antibiotic called Vancomycin, Its a HARSH drug but kills lots of bad stuff. She's been on it before and thankfully they thought it would work again. Well not so much.

After 2 days of the  Rocephin her labs improved. But yesterday with fussiness they added the Venco and then this morning her labs are back up high again :-( This means surgery. They have to get that shunt out of there, that tubing is in her tummy and laying in that infected fluid. Also she has these balls of infection that are forming in her tummy and when that happens the medicine cannot get there to help them heal.

So the update I just got is that it is time for surgery. The Resident is very good at keeping us informed and I am rushing down there after this update. Not only does the shunt need to come out but they need to put a camera in her belly to see exactly what is going on. They will be taking her into surgery sometime in the next 4 hours. This does mean she will be moved up to the PICU unit and also they will have the ventricular drains in again. Last time this meant a month long hospital stay :-( It is looking like that could very well be the case again. I will know more this afternoon.

Please if you find it in your heart, pray for our girl. I don't understand or know the reasoning behind all of this but it just breaks my heart. She is so tough and just yesterday morning showed me some smiles and I heard some words from her. Now the pain is back and no words from my sweetie and no smiles. I will make sure and update here as I know more hopefully this evening.
Thank you for checking in. I promise when this is behind us I will be updating more positive things, because this sweet girl has a world of adventure that she is conquering on a daily basis <3 span="">

1 comment:

Maggie said...

You have my prayers!