UPDATES 3-31-2008

Thank you for visiting our site and welcome to our weekly update on Lauren.

Lauren is moving around as much as ever lately. She keeps trying to climb the stairs now that she has mastered that and is trying to stand up quite a bit. Her feet and legs are extremely flexible, so we are hoping that she does not injure her ankles or knees in the meantime. She could hyper-extend her knees very easily.

The big news last week related to upcoming surgeries for Lauren. The pediatric surgeon (Dr. Barsness) felt that we do need to try to do something about the keloids growing under Lauren's g tube. The nurse was still able to swap the g tube out easily and put in a new one at this point. But as time goes on, the surgeon believes that the formula would eventually start draining out of the side of the mic-key button (how the doctor's refer to the g tube) and not going into her stomach like it should. Scar tissue is very hard to predict. There is a large chance that the scarring will come back quickly after removal. If it does, then they will try other options. Eventually, the current g tube site might need to be surgically closed and a new area might need to be created to put in a new g tube.

Even if Lauren did not need the g tube anymore, the site would most likely not heal on its own without surgical intervention. Usually, the hole closes off within a few hours of the button being removed. We know that this is true because the hole did start to close when she first got the tube placed and her sister had accidentally tripped over her tubing during a feeding, pulling it out. Luckily, the ER at Edward was able to put a g tube back in within an hour of it coming out. Life is never dull in our house! I thought for sure that one of the dogs would have tripped over it, but luckily they did not.

I also mentioned to Dr. Barsness that Lauren may need a second shunt to be placed in the peritoneum. Lauren was getting abdominal pseudocysts last summer from the VP shunt. Dr. Barsness says that she could also remove scar tissue from Lauren's abdomen, which is commonly done to allow the neurosurgeon to use that area again for a shunt. The pseudocysts required the shunt to be removed for a few days and the cyst to be drained as much as possible during surgery. Once an abdominal ultrasound showed that the cyst was gone, the shunt was put back in. We did this 3 times over a several week period before the neurosurgeon (Dr. Tomita) felt that we needed a new plan. This is why Lauren has a VA shunt now instead of a VP shunt. The VA (ventriculoatrial) shunt is not an ideal solution, especially for someone as young as Lauren was at the time. Dr. Tomita would still like to change that back to a VP (ventriculoperitoneal) shunt once Lauren is bigger, hopefully by age 5. There are many complications to the chest area related to VA shunts and they can be life-threatening. The sooner we can move this shunt out, the better.

The day after we saw the pediatric surgeon, we saw Dr. Tomita and he did confirm that the spinal cyst is not getting any smaller. He would like to put in a second shunt to continuosly drain the cyst. He is planning to put in the LP (lumbar-peritoneal) shunt in around the mid-May timeframe. To avoid infection, he would like to wait at least 2 weeks after her g tube and abdominal surgeries.

Dr. Barsness is planning to do the scar excision and abdominal laparscopy on Wednesday, April 23rd. We are combining these surgeries with her ear tubes and frenulectomy that was already scheduled. We will see Dr. Tomita on Thursday, May 8th to set a date for the LP shunt surgery.

While Lauren does show amazing improvement every day, she does have a lot of challenges ahead of her. We really do appreciate everyone's support of Lauren.