Finally Home!!

Well it has been a very long week, but we are finally home! What a great feeling to finally all be here together again. We were hoping to be home sooner, but in true Emma fashion things just didn’t go quite as planned. Emma had surgery last Wednesday to revise her port as the doctors felt that it had to be what was causing all of the fluid to gush out when they deaccessed her port. The doctors felt it had to be the port even though all three dye studies said it was working. However, once they got into the surgery they could tell that the fluid was coming from the brain and was spinal fluid. They replaced part of the port to ensure it was working, but when they came out were sure it was the shunt.

After surgery the neurosurgeons felt that the fluid was not only flowing down the tubing of the shunt, but along side of it as well because it will follow the path of least resistance. So when the fluid flowing along side the tubing reached the area of the port it would pool around it, and every time the port was accessed or deaccessed it would shoot spinal fluid out. On Thursdays the neurosurgeons tried adjusting the pressure settings on her shunt to encourage the fluid to flow only down the tubing and help determine if the tubing was intact. After watching her Thursday night and Friday they decided that wasn’t doing what it needed to and that she would need surgery to revise the shunt. They felt that the there was still too much fluid around the port and that the risk of infection was too high if they left things as they were. If she got an infection it would result in meningitis and having to remove the port and shunt for ten days and then placing them again. So at 4:00 Friday afternoon Brent called me and said they were doing surgery in an hour and half. I had come home to spend a little time with Aiden since he had been sick the last two days with strep throat. (Go figure, two sick kids would be better than one right??) So they took her into surgery at 5:30 Friday afternoon to revise the shunt. The surgeons opened up both of her previous incisions and rerouted the tubing of the shunt away from the port so the fluid would no longer pool there. The surgeons also placed some dura around the top of the catheter to ensure that fluid would no longer flow along side the shunt tubing. They feel that the surgery was successful and so far the port area looks the best it has.

We spent Saturday at the hospital recovering and on Sunday Dr. A. decided that things were looking good and decided to do her second round of chemo. They hydrated her and ran her chemo Sunday afternoon. She seemed to tolerate this round of it pretty well. She didn’t get sick, but was a little more upset that night. Dr. A wanted to keep her over night to make sure she didn’t spike a fever the after chemo the next day like she had the week before. On Monday Miss. Emma’s blood pressure was higher than it had been, she had a temperature at times, and seemed to have more pain. Her head also seemed to get bigger, so the neurosurgeons came in a turned the pressure down on her shunt because they felt it wasn’t draining as fast as it had been since the fluid was going around the shunt before. They were hoping this would improve the fluid drainage and reduce some of the cranial pressure. So finally at the end of the day they decided to give her some pain meds and she started feeling better, but they decided to keep her over night to watch the temperature and blood pressure. On Tuesday they wanted to send her home, but the little peanut refused to eat. She finally ate a little for Brent late in the afternoon, and then after getting some pain meds she ate a big bottle for Mom. The neurosurgeons were happy with their adjustment on the shunt and felt it was working. The doctors decided to keep her one more night though to make sure she didn’t get dehydrated. She still didn’t eat as well today, but has at least taken a little bit of milk. The doctors aren’t sure why her blood pressure was slightly elevated, but feel it could be from pain from surgery or changes in cranial pressure. After finally eating a little for Grandpa Steve and then a bottle for Mom they finally discharged her today, and we are hoping getting home will help her eat better tomorrow. It has been an extremely long and some what frustrating week, but we are so happy to finally all be home together again. It is so nice to just be able to relax at home as a family. Brent and I have both been trying to work this week, which has added to the stress, but now that she is home, we can hopefully get into a little more of a routine. We are hoping for a quiet end of the week and weekend. Emma is scheduled for chemo again next Tuesday. Hopefully we finally have everything figured out so that we can finally get into a routine with chemo.

Sorry there weren’t many posts this last week, and so now this one is a bit long. Thank you to everyone for the continued thoughts, prayers and support. We so appreciate the love and support from everyone. Emma has been a trooper through it all and continues to amaze us with her strength and perseverance. She is #EmmaStrong!!!!