Vanderbilt.... Our love hate relationship

On Vanderbilt, its the bearer of good and bad news. I've had so many ups and downs there. 

August 25th was her regular Spina Bifida Clinic. She saw Urology and got an excellent report from them. Something to really make me smile. Then after lunch we met with Neurology and Physical Therapy. PT thinks she is doing great moving all over the place and tracking right where she should be. #miraclebaby Her Neurologist and I talked about her head, it's been measuring pretty big and bigger then it used to be percentile wise. We were worried if her shunt was working or not. So while we were there why not get an MRI right?

Here she is waiting for the MRI. At this point we had been at the hospital for the better part of the day 8:00am- 3:30. The MRI was not the best ever. It was a haste MRI which is great because they can get an image without sedating her. But then we had to strap her to a board and listen to her cry. Poor baby, at least it was fast. 

So later that week the doctor called and said MRI showed enlarged ventricles but it was still inconclusive whether the shunt was working. So he asked us to come back next week for a test. 

Meanwhile Kali was busy just being Kali 

So Tuesday September 2nd I drove to Vanderbilt with Aubrey and Kali. 

To do the shunt tap they clean her head really well and then put a tiny needle into a special spot in her shunt. It is pretty much painless they say, but Kali had to be held down by a nurse and I. So naturally she was crying. Immediately it was obvious that the shunt wasn't working well. Most likely a blockage in the tube. So we went ahead and scheduled surgery for Monday September 8th. So what was going to be a 1 hour visit at the hospital took a few many more hours then I planned. 

This was Kali just a few minutes after they did the shunt tap. 

We saw pre-op clinic and got blood work done. After they drew her blood they put a band-aid on Kali and she reached over and ripped it off. She was not too happy about being fussed over. 

My Mom flew in to be with the kids in Knoxville while Henry and I went to Nashville. Andrew and Jess also came into town to help with the kids. 

We were thinking a lot about this: December 2012

How would she be this time? Would surgery so smoothly? This was only 21 months ago before. 

Sunday night we drove to Nashville. Kali had her last food popcorn of course. Began her pre-surgery fasting. 

She was in good spirits at 5:30 when we arrived at the hospital only asking for some milk to drink a few times. 

   Pre-surgery playing with toys and enjoying the new hospital things. She also was sporting some mighty fine pony tails to preserve the hair she has grown. 

Then it was time to go. A nurse walked in put In Summer from Frozen the video on her phone, handed it to Kali and I gave Kali to the nurse and she went happily to the operating room. Henry and I went back to the waiting room, where we sat in the kitchen and had a snack until they called us to meet with the surgeon. I am so thankful Henry was there to keep me distracted and calm during the surgery. 

Surgery was fast, the surgeon said that she did wonderful they found the place that wasn't working and replaced that tube and put in a programable valve. Should be in tip-top shape now. I immediately felt relieved and did feel nervous waiting to see Kali when she made it into the recovery room.  It wasn't too long before we got to see this little Angel in recovery. 

She was very calm when we got in there. Was talking to us but still very sleepy. At one point I moved from her side and she motioned for me to come back. She immediately started asking to take off the blood pressure cuff and the wrap protecting her IV. 

We were in recovery for quite a while waiting to get a room upstairs. She mostly just snoozed with me. 

After the moved her upstairs they were in the process of checking all her vitals, giving her pain medicine and settling her in, there were 2 nurses and then someone from her surgery team stopped by,  and then Kali threw up. But that moment was probably the worst she felt the whole time. She perked up rather quickly. 

 The surgeon told us after he finished surgery that the incision was a bit longer. He underestimated that. Here is the incision you can't even see the whole incision because her hair is hiding it. (its about 3 inches long) 

 Here is her incision from her first shunt placement. 

She recovered so quickly. She played, ate lunch, went for a walk in hallway. She was pretty bored in the hospital. Wanted to go anywhere else, in the truck, go to church. She wanted out! She definitely  wanted her arm back. Apparently she is left handed. 

 In the morning she was cleared to go home.... hooray! 

 She has been pretty happy since we got home. There are times you can tell she is extra tired. But really no problems. She tells me when I ask her how she is feeling "Feel Good"

 She couldn't take a bath until Thursday so we finally washed the ick off this morning and got to see how it looks with her hair down. It's really pretty hidden. The caught my hint I gave them with her big pony tails in surgery... please don't shave all her hair off! 

And we are Happy. Happy to have her home. Happy that the Lord blessed and comforted us. Happy our family and friends pray for us and help us when we need it. Happy to have a wonderful hospital to turn to when we need it. Even though sometimes they give us news that is hard to hear. They work hard for our little girl.