We made it to Madison, WI on Monday. It was a long drive but the kids did great. I will have to say after driving through Iowa, I was done with looking at corn and then was we made it to Madison, I was done looking at dairy cows. Tuesday was a long day, we meet with Dr Pauli and all I can say is WOW. He is amazing and so is Peggy his assistant!!! The knowledge that he has for our kiddo's is wonderful. I am so happy that I found him and other POLP's recommended him. We then meet with Dr Bragg, the neurosurgeon that will be doing the operation. She is wonderful as well. I feel so comfortable with all of them. They make you feel like you are family.
Mom and Dad flew in on Tuesday night to help out with the kids during the week. If it was not for them I don't know what we would have done.
We were told to be at the hospital at 11am for surgery to start at 12:30pm. We arrived on time and things got started. We were told that the surgery should take 2 to 3 hours but they needed to go slow to make sure everything was done correctly. It was a good thing that they did the xray and CT scan on Tuesday with those scans it showed that compression was much tighter and we needed to do the surgery ASAP. With the compression showing tighter they wanted to watch her brain function during the surgery so they need to put probes into to her brain. This freaked me out a bit but I knew they were doing what was best for Jalinn.
I walked Jalinn back to the OR around 1pm with the team of doctors and nurses. Jalinn was in my arms when they gave her the gas to go to sleep. The hardest thing to do was to lay her down on the OR table and walk out. I lost it!!! I cried so hard I just wanted my baby back in my arms again.
Around 3:30pm they told us that they had not even started the surgery yet because they had trouble getting the second line in. My heart was hurting so much!!
At 8pm Dr. Bragg walked into the PICU waiting room with a BIG smile on her face and said "We are done and she is doing GREAT". It was such a relief. Dr Bragg explained to us why it took 8 hours for the surgery to be completed. She said that they did have problems getting the second line in due the Jalinn's chucky limbs and her veins are hard to find. For them to do the surgery Jalinn has to be on her stomach (prone position) and when they flipped her from her back to stomach they lost her and they was no brain activity so they had to flip and back and get her back. Once they got her back and waiting a while to watch her brain function, once it showed it was working fine they flipped her back and they were able to start. Dr Bragg said that the hole for the spinal cord was much smaller and it was every tight and it was good thing they did the surgery.
We finally got to see Jalinn around 8:15 or so, it was the BEST thing to see her again. She was a little puffy from all the medicine but was beautiful anyways. I just kept giving her kisses.
The next day Jalinn did great, we kept up the pain medication and it seemed to work really well for her. Not even with 24 hours from the surgery Jalinn was holding her bottle for the first time ever. Jalinn generally rolled to one side of her body but she was rolling to both sides of her body and was doing great.
With in two days of surgery you would never know that she just had surgery she was back to herself again. This surgery is a miracle!!!! It saved my baby girl.
I can't thank Dr Pauli, Dr Bragg and the rest of the hospital staff enough for doing what you did for my baby girl. I also a BIG thank you to my POLP's for telling me in the beginning to do what needs to be done for Jalinn and for little to yourself and not the doctor's all the time.
