ER again

Carly was in the ER today. She woke up at 4AM with a high temperature. After not sleeping we finally decided that she needed to go to the hospital to get checked out. I took Cayson to school and dropped Burke off at the sitter and headed to Cardon's. We went over her history and symptoms. This is her 2nd high fever in 3 weeks. The ER pediatrician agreed that a 2 1/2 year old should not have as many fevers and as frequently as she has. Blood, urine, x-ray, CT...all normal and was pawned off as another viral infection. I don't buy it though. Everything was normal. No elevations in anything. How can she have a viral infection? Her neurosurgeon was sent in and I talked to him for a while. We talked more about the ETV. Her vents have not increased in size and are still fairly small. The ETV is still an option for her but there would be more to it than previously discussed. Because visibility is less with thicker and smaller vents, he would have to expand her vents first. He would remove the tube from her belly and attach it to a bag of fluid and use gravity to expand her vents as far as they will go. Since they are making her hydrocephalic she will have all the symptoms...(loss of appetite, vomiting, headaches, sunset eyes)...NOT FUN! Then he couldn't guarantee that her vents would expand enough to greatly improve visibility. Less visibility means higher risk. Those risks include damage to pituitary gland (hormones), tissue damage (memory loss), optic nerve damage or femoral artery damage (which he stated, "she wouldn't leave the OR alive.") So after talking about it we decided that we can't handle those risks. We are going to go ahead with a revision and if that doesn't work then replacing her shunt. So that's where we are. Surgery is scheduled for Oct. 13th at 12:30. I'm nervous. She's going to be okay. Please tell me she is going to be okay.

Sometimes being a mom sucks

I took Carly to see Dr. Moss in April...he is her new neurosurgeon. Our old NS was good and I really liked him but we never saw him after Carly had her shunt placed. We always saw his NP, Katie and I didn't like her. So now we have Dr. Moss who I like! Back in April we talked about Carly having slit ventricles, waking up at night with headaches and headaches throughout the day. He looked at all of Carly's MRI's, CT's and X-ray's. He didn't really like the shunt location or where the catheter was placed inside her brain. He said that it could cause shunt obstruction, especially with slit ventricles. (slit ventricles are due to over drainage) We talked about the possibility of placing a new anti-siphon shunt one day. We talked about doing an Endoscopic Third Ventriculostomy (ETV) at some point but her ventricles were too small to consider doing one then. So we left with the plan to watch Carly and see if her headaches got any better with increasing the pressure on her shunt.

Fast forward 5 months. Carly is still waking up at night with what we think are headaches. We saw Dr. Moss today to discuss changes. He recommended replacing her shunt with a new anti-siphon shunt. He thinks that the catheter is becoming obstructed with choroid plexus tissue. He looked at her new CT and compared it with her MRI from March. Her ventricles have increased in size and she is now a candidate for ETV. He left us with three options; A- leaving the shunt alone and waiting for an emergency to replace it. B- placing an anti-siphon shunt. C- ETV. Let me explain what the ETV will entail for Carly. First the surgery to do the ETV. Then he will remove the tube from her stomach and attach it to a bag for her shunt to drain into. This is an exterior shunt. The only reason to leave the shunt in is to verify that the ETV worked and the CSF is draining properly. If no fluid is present, the second part of the surgery will be completed. Her shunt will then be removed completely. Let me repeat that. NO MORE SHUNT!!! But let me make one thing clear. ETV is in no way a cure for hydrocephalus. After 5-7 days in the hospital she will be good as new and living without a shunt.

How do I make this decision? I don't know what to do. Instinct says go for the ETV. Wouldn't that be great for her not to have a shunt anymore! No more worrying about infection or fevers or hitting her head. She would still have yearly MRI's but no worrying about shunt revisions or emergency surgery. But there are risks. The morbidity rate is quite low but it is there. Damage to certain soft tissues of the brain could cause hemorrhage, brain injury or memory loss. The mom in me now instinctively says "NOOOOO!" What would it do to me if something happened in surgery and all I know is "I chose this surgery. This is my fault." What would it do to me if I waited and there was an emergency with her shunt and something happened and all I know is "I was given the option to try the ETV and I chose not to." I'm in a loose/loose situation here. I don't know what the right thing to do is. I'm trying to get rid of the headaches. I'm trying to help her. I'm trying to eliminate the struggle of having a shunt all her life. I'm trying to eliminate complications. And now given the option, I don't know what to do. WHAT DO I DO!???! What would you do?

I'm nervous. I'm scared. I'm confused. I'm lost. I'm terrified. What if I choose surgery? What if something happens to her? I'm to blame. What if I don't do it? What if something happens to her? I'm to blame. Am I getting my point across? I want to fix this for her but I'm afraid. I think that EVT is the best treatment for her but I'm scared. If we do this it will be around the 1st week in October. I'm scared to loose my little girl. I'm scared that I'm going to get bad news. I'm scared to see her after surgery. I'm elated that she could be shunt free! But I'm scared.

Any thoughts?