Victoria has been having some symptoms which looked like her shunt was malfunctioning. These symptoms were not continuous, but they were dragging on and not going away, so on Tuesday, we made the trip down to Gillette. We learned that the shunt is not clogged, like we thought might be the case. However, when the neurosurgeon tapped it, she found that she had some back flow, which would cause similar symptoms to a clogged shunt, as the result would be that the her CSF could not drain as it ought. An x-ray revealed that the end of the drainage tube for the shunt had lodged between the stomach and the diaphragm...and the image also showed extra air in the stomach. They conjectured that this was causing the drain to pinch and force what would come down back up. When a drainage tube is put in, it is much longer than it needs to be and coils down in the stomach cavity area. As a child grows, the tubing just unrolls, so that it does not get too short. As the tubing has unrolled, it has ended up where they saw it on the x-ray...but it still has the potential to move. Also, they think it can work right now, when the pressure is off from the extra air pushing on it.
Victoria fasted yesterday from 4:00am until they started some IV fluids around 5:00pm. They gave her fluids throughout the night. They also kept her g-tube open overnight and until about 10:00 the next morning, allowing air to escape. This morning, they started her on pedialite to see if she would be able to tolerate her food again. They started at 30 ml/hr, and reduced the IV rate to 15 ml/hr. She tolerated this well, so after a couple of hours, they upped the g-tube feeds to 45 and stopped the IV fluids. So far she has been doing well. Tonight, they plan to give her 1/2 formula and 1/2 pedialite and see if she will do well with that. Next would be back to trying her normal feeding schedule. If she continues to progress well, they will assume that the problem was the tube. If not, then more detailed imaging would be the next step.
Please keep us in your prayers! You can pray that Victoria will continue to tolerate her food, and that pressure will be relieved from the extra CSF, (Cerebral Spinal Fluid), that we'll have wisdom ,and that the One who lives within us will shine through us here. We know that God always has a reason for all that He allows...and we want to be thankful in the twists and turns of life and to honor His name. Thanks so much for your prayers.
"I will say of the LORD, He is my refuge and my fortress: my God, in Him will I trust." Ps. 91:2 "I will bless the LORD at all times: His praise shall continually be in my mouth. " Ps. 34:1 "The LORD on high is mightier than the noise of many waters, yea than the mighty waves of the sea." Ps. 93:4 "Thy mercy, O LORD is in the heavens; and thy faithfulness reacheth unto the clouds." Ps. 36:5
