Post Surgery update....Week 2 @ UIHC

Little update on Danielle. Surgery last Saturday went well. They placed the ventricular drains and removed her old shunt catheter from her brain. Her incisions are pretty ouchy and the next 3 days we again struggled with making her comfortable and finding the balance of pain meds and what she needed to calm her down and make her comfy.

Monday she spiked a fever which was SO unfortunate. It was just a low grade temp, but enough to raise a little bit of an alert. This could have been some of her ouchiness or it could have meant that something else was brewing. She also started having some really nasty colored fluid coming out of her ng, which is the tube down her nose that is continuously pumping out her tummy and the air in her tummy. Here are a few pictures that may help you understand a little bit about not only why she is in so much pain, but just an over all picture of what is going on with her.
     This is her Ventricular drain. It takes the place of her shunt temporarily, since she has to always have something that can drain the fluid from her brain for her, since her body can not drain it on its own like yours and mine do. So this ventric goes into the ventricle of her brain and constantly drains fluid outside of her body into a glass tube and then a bag. The flow is centered by gravity. So the ventric needs to be level with her ear at all times so it does not drain too quick or too slow. There are pressure limits that are set also that show on the monitor above her head. It will beep if something is off with the pressure limits they have set. For this reason, we are unable to hold her or pick her up out of bed. If you know Danielle well, and what a snuggle that she is, this is very difficult for all of us. It is going on a week and a half since I have held my girl in my arms and that absolutely breaks my heart. The Neurosurgeons are taking fluid samples from the CSF (Cerebral Spinal Fluid) that is draining out, daily, and letting the cultures grow for signs of infection. We want it to be negative showing that the infection is cleared.

This Is her tummy incision. Absolutely heart breaking. This incision is a LOT larger than they wanted it to be. But her shunt tubing was wrapped so much and tight up against her bowel that they needed it bigger to clear out some tissue and also make sure there was nothing else in there growing etc, causing any issues that they could not see. But this incision is just gut wrenching to me.

 

Tuesday of this week was the first time Danielle really started showing signs that she was becoming a little less painful. This was WONDERFUL news! The weekend was really tough on all of us. Trying to balance her pain with a new drug, rather than just up'ing her morphine was really tough to get all of the doctors and nurses on board and understanding her. She has such a high tolerance for pain that it takes a lot for her to show she's in pain, and if it gets to the point where she is telling you, then its often too late and making her comfortable is a tall task. We spent a lot of time sitting and holding her hand, watching the clock, praying, and doing anything we possibly could to help distract her enough to fall asleep.

 



 



Probably the biggest news over the past couple of days is that her tummy has started to have more bowel sounds. Her tummy is waking up from her 2 surgery's and they have decided to try and feed her starting in very small amounts. They are using a tube down her nose and they have it hooked up to a pump giving her 5 cc's over the course of one hour every hour for 12 hours and then if it goes well they will up her feeds from there. This is wonderful news. Although they have been giving her nutrition and lipids thru her PICC line, this is the good stuff that she is use to having!

That is about all the update I have for now. It is just a waiting game at this point to get her CRP number down below 0.5, which it is still at 10 as of yesterday. And also making sure that all of the infection is out of her shunt etc before they decide to put it back in. We are anticipating at least another 1-2 weeks in the hospital if things go as they are now, slow and steady. Tomorrow marks the completed week #2 and the start of week 3. I cannot believe it. I just cannot believe we are facing this again. I swear Brad and I are running on auto pilot, trying to balance jobs, kids, hospital, time etc as much as we can. If you have prayers we appreciate them so so much. Prayers for our girl are the most important and then prayers for us as a family, that we will be home again together before the Holidays.

Sending love to you on this Wednesday.