As a parent of a child with a shunt what you fear the most is the shunt malfunctioning because it is surgery all over again. And not just any surgery it is brain surgery. This is the story of Katie's first and hopefully last shunt revision.
Monday, as was already written earlier we went to Memorial's ER because she threw up. This is a sign of a malfunction so we knew it was a big deal. The CT scan showed no changes except a very bad middle ear infection in both ears. She also seemed to have the start of a urinary tract infection. They admitted Katie, thank God, because Wednesday we thought she was going to be fine and we would go home. By Thursday morning she had regressed and began throwing up again. ALSO her eyes began to cross.
Up until this point our experience at Memorial was amazing. All the nurses were really kind and very sensitive to the situation. Student nurses were amazed at God's work in Katie's movements and our attitude, which only comes from Christ. I got to teach several nurses how to do Katie's catheter and share what amazing things God has done in our life. We were tired, and really missing being together as a family.
I told the doctor her eyes were looking strange and he said he was going to call Dr. Wheet immediately. Jeff and Ada were planning on being in Jake's wedding so I took Ada home to get our stuff for the wedding. I had a feeling something was wrong so we went fast and went straight back to the hospital. As I was walking back in Bonnie was also walking in. Bonnie is a friend we met in the hospital when Katie was in the NICU. She is the parent care coordinator. God placed her in our path and took Ada to her office to play for a bit. As I got up stairs to the PICU many people entered the room quickly. The PICU doctor came in to let us know that her CT scan showed her fluid building up again. Her shunt was malfunctioning. These are words we didn't want to her at all. They explained they were talking with the transport team about taking her in a helicopter. Dr. Wheet came in as they tapped her shunt and asked if I was ok. For the first time I told him no. I was scared. I knew what was going to happen. My 6th month old baby girl was going to have brain surgery.... again.
As they made decisions about transport I did Ada's hair for the wedding and Jeff and I decided he needed to stay for his brother and sister in law. I knew I couldn't stay, my little girl needed me. The hardest thing ever... leaving my husband while I rode alone in an ambulance with Katie 3 hours away. They chose ambulance due to the weather. Bonnie stayed with us as long as she could in the PICU at Memorial, the social worker comforted me as I let it sink it... brain surgery... again.
The transport team was just the right people. I rode and cried in the ambulance as my heart broke for the pain my girl must be in. The cranial pressure was increasing by the minute, her lethargy and cry told me she wasn't ok. Upon arrival a few ridiculous moments happened (they took us to the wrong ER room first, the paperwork was "lost" then magically appeared later, the er doctor didn't know what AFOs were and so on) then :::hallelujah chorus:::: I met our new neurosurgeon. An amazing woman who had details, information, and was to the point. Much like ours here in town. She said she wanted to revise the shunt and took a guess at what she thought it could be. Thankfully it was something more mild. The ventricular catheter was being blocked up. She simply replaced it. The surgery only took about 2 hours. Within 4-5 hours Katie was babbling and playing, the first time in a week.
So many details God worked out, so many rough moments. Whether it's brain surgery or discharge God is still God and no matter what He loves his people. I prayed and cried and prayed and cried.
What kept me going? God made me a champion through Christ.... "I am champion, you're gonna hear me roar, louder louder than a lion."
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