Wednesday, November 11, 2015

Update! Approaching week 6...

I can hardly believe its been a week since my last update. Not a ton has changed in the world of Danielle so that is probably the best news. They feel like they did get her 'suspected' infection under control. The sensitivities came back the other day and so they did some switching around of her meds. They took her off of the Venco, that drug is just really really harsh and they constantly have to do blood levels before they give each dose, and so her being able to come off of it was good with us.
They added in an additional antibiotic called Nafcillin and then the Rifampin. There seemed to be some confusion on Saturday tho about the Rifampin. The PICU docs took her off of it, well then Monday mama had an intuition and rushed up to the hospital, its a good thing because when I got there the CDC docs were in there and talking about her meds and what she was on. They wanted her to continue to be on the Rifampin, well I explained the PICU team took her off, he wasn't super happy about it and they got her started right back on it. That leads me to the other part of Monday.....
Dylan is such an amazing big brother and often leads the way to sissy. He knows the routine and right where to go. Things that kids should never even know how to do, but he does and has had to learn, and he never complains. 
I was struggling Monday morning. I just had this terrible feeling in my tummy and was feeling even more horribly guilty not being with my girl. We had been the night before and Brad even there that morning and she was fine but something just wasn't sitting well. So I took off and headed up there. I arrived to have the CDC docs in the room, thankfully I was there to tell them about her med being discontinued because HE wanted her on it! Ugh. Second thing was that her feeding tube was just about popping out and that could have been so bad because she had a feeding going and then also she threw up. It was just one of those moments where I wanted to stop time, pick up my baby, block out the outside world and not let anything else in and just run away with her. I know I quickly told myself that couldn't happen and that wasn't reality, but it was a frustrating moment and mama bear came out. I also sat there and waited 45 minutes before I even saw a nurse to come help! This is Intensive Care and it gets very busy because that is where the kiddos are that NEED that care, but I couldn't even bare to think if I hadn't gone up there what would have been going on. Mommy guilt.
We still haven't been able to hold our girl, but when they change the bedding out we get to hold her standing for a few minutes at her bedside, I soak up all the lovin' I can in those few minutes.
So we got her all situated, Daddy was up for the afternoon and evening and all was well. We are approaching week 6 this coming week. Seriously. I can hardly believe it. There is no doubt in my mind that Danielle needed this long to be there and to get well. She was really really really sick for a very long time, and it just goes to show, because it took a week of being there to even begin to figure out what was going on. But as a parent our guts knew a LONG time ago that something was wrong. When we left that hospital last December we knew something was wrong. So a rocky 10 months it took for something else to show so they could investigate further. And here we are.
Here is a recent picture of her tummy incision. We are so happy with how well it looks and how nice it is healing. We were pretty nervous about it before but it looks really good and doesn't seem to bother her at all. She is back sleeping on her tummy most nights which is nice.
She really has been in good spirits most of the time. She is no doubt stir crazy and ready to bust out of there but we keep rotating toys and child life brings in some amazing fun things for her, and us too. We are so grateful for those amazing volunteers!
  video

They are looking at doing surgery either tomorrow or Friday to replace the shunt. This is where I beg for your prayers. This is where I get down on my knees and call and cry out to God to PLEASE protect our baby girl. We are sick about it and so nervous. This will be different, but I know that with your prayers and our prayers and the best docs in the world, that she will be ok. Here is the purposed plan, but as we all know, it could change, but as of yet it hasn't. Ok here goes:
They will place a Ventricular Atrial Shunt in Danielle's brain and run the tubing......to her heart. Yes, to her heart. This is where I almost throw up because it makes me so nervous to say that and to even think about this. Friends you thought our girl was fragile before, well I want to put her in a glass case now and protect her even more forever. and ever. and ever and ever. That's not reality either but this just makes us incredibly nervous, because its new.
So the shunt will be in the ventricle of her brain set to drain the fluid at whatever type of setting they put it to, to drain constant fluid. It will again be controlled by a magnet so they can change it to drain more or less fluid at any time. Next they will run the tubing down thru a vein in her neck and into the first chamber of her heart. :-( This is a fairly normal practice for them they say, but not something they do a ton of as priority, because the preferred position for the shunt tubing would be in her belly. But they cannot put it back into her belly because she's had 2 infections stem from there causing issues. I asked tons of questions, stated my concerns and they ensured me that the risk actually is still just as if it went into her tummy, only slightly higher. Easy for them to say right! The Neurosurgeons will work along side the Pediatric Surgery team who will be outlining the vein and placement of the tubing into her heart.
Here is what it looked like before going into her tummy, and here is what the new shunt placement will look like going into her heart.


So I am calling out to my prayer warriors. I am asking God to PLEASE protect our baby girl over the next few days and beyond. Her little body is so fragile. She has endured so much pain and suffering. It is time to get this behind us and let this little beautiful 7 year old girl be a kid and grow and learn and play all the rest of the days of her life! No more surgeries please! We want our baby girl home.
Thank you so much for your love and support over the past 6 weeks and beyond. If you've got them in your heart for awhile longer and would be so kind to send them our way, we would love it so much. We will continue to keep you posted on surgery as we know more. Today Daddy is spending the entire day with his girl and tonight, head shaving party! Yep you've heard it right! Over the past 3 years with all of her surgeries they have only shaved parts of her head that they needed to, we would then let it grow and it would be pieced together at several different lengths. Well Brad and I have been talking and we are ready for our girl to have a fresh, clean start. This girl has rocked the pixie before and now we are going to shave her head so it is all one length and let it grow as one. As we are praying this surgery will do for her, it will be the end resolve for the past 3 years of issues and the old will be behind us and shaved away, only to grow and flourish from now and beyond.
Our Beautiful girl a few years ago when the front of her head was shaved. How beautiful is she and how beautiful are those eyes!

Make today count friends. Hug your babies and show your gratitude today to ALL Veterans.
Thanks for checking in.

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