Maggie's Upcoming Surgery

(The Latest from Brant)

Friends,

Maggie is continuing to grow and develop every day. Her breathing continues to improve, her feeding is good, and she clearly has some muscle and nerve control in the lower half of her body. However, the CT scan on Tuesday showed fluid is accumulating in her cranium so she is scheduled to have a shunt inserted in her head to help drain this fluid away.

We are very pleased with Maggie's overall health. She has begun taking a very limited amount of bottle feeding and nursing the last few days and has responded well. That is even better news than normal as sometimes babies with a Chiari brain formation can have difficulty sucking. On a related note, her weight has been increasing consistently, even when she was only receiving nutrients from her IV line. In the first few days the staff at Children's would have preferred she actually had lost a little weight, but she has been unstoppable in that regard.

Monday, Maggie was evaluated by a team of physical, occupational, and speech therapists. She does have movement in all parts of her body. However, they did say she may have some difference in the muscle tone of her legs. We're watching and looking at everything she does a lot. Maybe too much sometimes. We know it is really hard to know what her capabilities really are at this point, but we are encouraged. Today, the therapists started a regular program of therapy with her to help assure maximum development of her muscle control.

Tuesday morning Maggie had a CT scan on her head. It showed that she is slowly accumulating fluid in the ventricles of her brain. The ventricles are a series of four cavities within the brain that are open to the central canal of the spinal cord. The Cerebrospinal Fluid is created in the ventricles and then flows through the ventricle system into the spinal column. The cerebellum portion of Maggie's brain is sitting so low in her head (the Chiari malformation mentioned in earlier emails) that Maggie has restricted flow of her cerebrospinal fluid from the ventricles into her spinal column. Consequently, her ventricles are slowing increasing in size as more fluid accumulates there.The danger from the accumulation of fluid on the brain, usually called Hydrocephalus, is too high pressure on the brain tissues. Overtime this can cause issues such as headache, nausea, vision issues, mental developmental issues, and just lots of other bad stuff. If untreated, Maggie's skull could also expand abnormally. So Maggie is currently scheduled for an operation next Tuesday to insert a shunt system. This shunt will be a small tube that will go from the brain ventricles to a one-way valve which sits outside the skull, but under the skin behind the ear. The tube then travels down the neck into the abdominal cavity. We are extremely thankful that Maggie is being treated by this particular group of Neurosurgeons at Southwestern. They are simply excellent, excellent at this procedure, and clearly one of the best in the country at shunts. This shunt may last her a lifetime, but children who receive a shunt this early in life frequently need a revision to the shunt as they grow in size.

The medical staff wants to wait a few days to let her lungs develop stronger first. They have been slow to develop, given her early birth, but are doing better all the time. Day by day she has been weaning from Oxygen and air pressure being supplied to her mechanically. This morning they finally removed the last of the devices to assist her breathing, so she is now breathing entirely room air, on her own. Over the next few days we expect her lungs to grow stronger. During her shunt surgery she will be intubated again and her breathing will be assisted by a ventilator. One of the goals of the medical staff is for her breathing to strengthen before surgery so she is able to both generally recover from surgery sooner, and specifically to be able to get off breathing assistance from the ventilator without difficulty.

Brooke and Matt have now been able to take turns sleeping at home, while the other one sleeps in the room with Maggie. They are slowly becoming better rested. The 3 Cole boys seem to be doing very well, thanks to the excellent care that Russ and Susan Cole, Matt's parents from Denver , have been providing to them.

So our thankfulness, our desires, and our hope all remain. We are thankful that there are answers and potential solutions to the issues that Maggie is facing. We are thankful that she is receiving such excellent care and we are confident that she is getting the best care possible. We are thankful that her path and our decision seem clear. We are thankful for the movement and healing that has already been seen. We are thankful for the excellent surgery and results from the surgery to close her spinal defect. We are thankful for the tremendous love and care that has been given to us abundantly. We are thankful for your prayers, thoughts and concerns as we believe they matter.We desire for her to have normal ability to move, think, and function. We desire for her surgery to go well and the surgeons to do excellent work. We desire for her fluid levels to remain low and not rapidly expand. We desire for her urological functions to continue towards normal functioning. We desire her to breathe well and her lungs to be strong.

And, we are nothing if we are not people of hope.