June 25, 2012 Surgery Day

Surgery Day. We were scheduled to be in pre-anesthesia at 7 am and in the OR at 7:30. They came up to get us at 6:45. At this point, her shunt had been clamped off for about 3.5 hours. The goal was to make her ventricles large enough so that her neurosurgeon could thread the new shunt catheter without problems. The night before had been almost uneventful, then at about 5 am she started to have bradies, followed by tachycardia, followed by desats into the high 60's. Her O2 was at half a liter when she went to bed the night before, and by the time she got to the Surgical Prep area it was on 1.5. No sooner had we gotten downstairs, and she started vomiting. The nurses started asking me tons of questions. "Did she eat after midnight?" "Did she drink?" "How long has she been vomiting." Just then the anesthesiologist on her case came in and saw her vomiting. She asked how long that had been happening, and I said for about an hour. The nurse told her it was probably because of the shunt being clamped. The woman gasped and said "What in the world!!" She looked scared. The anesthesiologist looked nervous and scared. What a way to put mommy's nerves to the very brink. I asked her why she was so worried, and she said that the vomiting could cause all kinds of problems, blood pressure could get bad, and she could aspirate. At this point, I was starting to think the externalize shunt wasn't such a bad thing to deal with. Then her neurosurgeon came in, took a look at her and said- "Let's unclamp this." Which he did, and I saw an immediate change in her. He got all of the paperwork and consent forms for me to sign, and I asked him how long the surgery would be. He said maybe two hours.Hugs and kisses were given, and we went to the waiting room.
8:10 am- I realized I was supposed to check in at the waiting room desk. I went up and talked to the girl an she said Grace was in the OR, and the doctor would call when he was done.

9am- I was starting to get very nervous. I went upstairs to get coffee (which I didn't drink) and Josiah a cinnamon roll (which he did eat). I came back up and immediately asked for news, but there was nothing yet.

10:15am- The 2 hours had passed and I was about as anxious as I get. I kept reminding myself that it takes a few minutes to get her under, then they had to intubate her. But, I know her doctor, and I know when he gives a time he figures all that in. He also highballs his guess, so as not to make the parents too scared. I was scared. Very scared. I started to cry. I tried so hard not to, I didn't want to scare the other parents in the room, or Josiah, but I couldn't help it. I just had to cry. I begged God on my babies behalf. I had no idea what was going on in that room, why it was taking so much longer than planned, but I knew He did.

11am- Still no word from the surgeons. I got a text asking for news from one of my dearest friends. I told her we had no idea what was going on yet. She sent me back-" I know you know this, but she is in God's hands. He is guiding the surgeons right now. She is not alone in there. Jesus is by her side & right by your side too." Did I know that? Of course I did. Is it really easy to lose sight of that truth when you're scared out of your mind? Oh yes. Thank God for the reminder. I was suddenly taken back to the day in CT waiting room, July 6, 2010, as she was seizing uncontrollably. Our Pastor sat with me and read Psalm 27 to me. I didn't even need to open the Bible right then,  I could hear Pastor read every verse to me. That was one of the worst days of my life, but from it comes one of my sweetest memories.

11:26am- The girl at the desk called "Parents of Grace Richards?" I almost killed people to get up and to the phone she was directing me to. I got in there and the nurse was on the phone. Dr. Silberstein wanted me to know everything was OK, just taking much longer than he had anticipated. She had been stable the whole time, but she was proving to be very tricky to thread the catheter into her atrial vein. I was able to breathe again. At least I knew she was doing ok in there!

1pm- Dr. Silberstein came in. He LOOKED exhausted. He told me she had done well and that the other docs were closing her up. He said that when he went into the neck this is what he expected to find:

Instead, he found this:

Hahaha...should we have been surprised? This is Grace we're talking about, after all! A little over 3 and 1/3 of the almost 6 hours total were spent trying to thread that catheter into her aorta. Finally, he had to go through her jugular, which is a bit more dangerous. She was a champ through it all...never dropped any of her stats and kept her BP right on target. He told me her neck would be very sore, she had been through a LOT in there. Not surprisingly, she hasn't complained of her head at all- just the neck.

2pm- They came and told us we could go back to recovery. I walked in and she was sitting there, awake, and asking for food! She downed 2 full containers of apple juice in the first 15 minutes I was in there. She also had NO oxygen on at all! She looked amazing. She did make me a wee bit nervous when she started talking about purple unicorns in fish tanks, but she was still coming out of some pretty good sedation. Within the hour, we were back up in her room in the PICU. Other than some massive pain, she actually had a pretty uneventful night. Pain was controlled with oral vicodin, so she stayed pretty sleepy through the evening/night.

Breakdown of the shunt- She now has a programmable VA shunt. We have to be very careful around magnets now, because that is how you change the settings on the shunt. Only a member of the neurosurgery team does those changes. The ENTIRE shunt system is completely new, since bacteria did grow out on the old system. The shunt begins in her head like before, but instead drains to her heart and is then recirculated through her body in her blood system. She will take a baby aspirin every day from now on, and we have to be even MORE vigilant about fevers and infections.

Thank you to all who have been praying so faithfully for our girl. This has been quite the valley...in many ways, even scarier for me than the stroke in 2009- but God is ALWAYS good.