Post secondary surgery day 2 was slow and steady. Surgery went as well as could be expected although the morning started off a little crazy.
They weren't to do her surgery until mid afternoon on Monday. So I thought I would stay at home in the morning, work for a few hours and when surgery time was announced I would make my way to Iowa City.
My husband called me pretty anxious at 740 that they were about to rush her into surgery, plans changed. UGH, I wasn't there, I was just getting in my car and I wouldn't be able to kiss my baby girl before she went in. Thank GOD Brad was there and was able to take her to surgery as we do each time. My heart sank and I just couldn't get to Iowa City Fast enough. A approx. 3 hour wait would seem like forever! An angel friend of mine just must have known that I was anxious, without even knowing what was going on, she called in a gift certificate for us and we promptly took a few minutes for a breather and coffee. Thank you friend, you were divine intervention that morning and it was a perfect distraction and wake me up!
We met Danielle up in the PICU just as she was arriving. The surgery went well. They removed the remainder of Danielle's shunt that was in her brain and placed ventricular drains. These drains drain the Cerebral spinal fluid from the cavities in her brain to a bag outside her body. They take place of her previous shunt for now. These drains flow with gravity depending on how thy are set up. For that reason we are unable to get Danielle in and out of bed on our own. It would be very harmful if those drains drained too much or too little fluid, and they are only attached with one stitch, so if they pulled out it would be horrific. They have to clamp the drains when we move her and we have to get the help of the nurse, it is a two or three person job.
Later that evening we spoke to the CDC Doctor dater surgery and asked him some questions about her plan of care and what were they going to change. That is when he told me that she'll be here for awhile. They will not allow neurosurgery to go back in and internalize a new shunt until she has had negative cultures for 2 weeks. Wow! My heart sank, this is a longer road than we realized. We know for the safety of her and because this is the second time in just over a year, but holy moly, it's the holidays :-( and we are waiting for a final negative culture still.
Because her infection was so severe they are now treating her with an additional antibiotic that is also a Mega drug. Rifampin is the name. It is not commonly used however it is used to treat infection in hardware such as plastic, metal etc like Danielle's shunt. It's so powerful, and expensive that they would not give her a IV dose unless she really didn't tolerate oral doses. Also it is orange and not only turns her tears orange but also some of her skin in her nose and her stools! Crazy right! Thankfully she takes it we'll & is getting oral doses twice daily.
We have started feeding her again with her bottles and formula and also puréed organic pouch food and she is doing well. Of course she prefers dad and mom, & she has made a mess of a few nurses but is eating ok for them too.
We are all a little stir crazy. Not sure if we are coming or going. Dylan Is now home and it's just a lot to handle but we make the most of it the best way we know how......by being thankful for what we have, praying and having the strongest most possible outlook, envisioning us all at home again hopefully before Christmas.
Thank you for your love and support and checking in on our girl. We ask of only prayers and for you to never take any day or time with your children or loved ones for granted. It's very sad to see all going on around us in a PICU unit that is full. All of these children, including ours deserve a healthy chance at life and to be healthy enough to go home.
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