September 25th

Wow, what a crazy, emotional, exhausting week it has been. I guess this week has been a reminder that we are not in charge and that things don’t always go as you plan for them to.
Emma’s pressure reading when they tapped her shunt on Friday showed that her pressure was at a 16-17. The doctors had decided that if it was above 15 they would open her up and look at her shunt. When they got her open they found out that there was a malfunction in the distal end of her shunt, which means that there was clog in the tubing in her stomach that was causing the shunt to not be able to drain in her abdomen. This was causing her spinal fluid to back up into the brain and causing her ventricles to become enlarged. This is what was causing the increased pressure and some of the symptoms we were seeing.
The good news is that they were able to find a problem and repair it, so it should hopefully take care of the problem. They were able to put new tubing in from her head down to her stomach and also went ahead and replaced the valve since they had her opened up and hers was three years old. They aren’t sure what caused the malfunction, but wonder if the swelling of her liver when her liver counts were elevated may have played a part in it.
Emma is sore from the incisions on her stomach and back of her head, but otherwise is doing pretty well. She was tired yesterday, but had a little more spunk today. Emma was discharged from the hospital late Saturday night, so we have been just laying low and relaxing at the hotel. We are all very happy to no longer be sleeping at the hospital.
We had a bit of a scare last night when the doctor on call at the hospital called and said Emma’s roommate from the hospital had shingles. This is very alarming when your daughter has not been able to have any live vaccinations, has had pretty serious skin issues recently, and has a comprised immune system. Needless to say, we were a bit worried last night. This morning our doctor, Dr. Chi, called and said that dermatology had been up to see our roommate and doesn’t feel it is shingles, so hopefully that is a good sign. She said we should still watch her carefully but that it was good for us if it wasn’t really shingles.
We had a follow-up ophthalmology appointment today. While Emma’s right eye responded to light slightly better than last week, and her pupils were the same size, her ability to see out of her right eye was not improved. We are really upset and disheartened about this. Emma fights so hard to overcome so much and now we have yet another hurdle to deal with. The doctor said that only time will tell if she will regain any vision in her right eye.
We see dermatology again tomorrow for a follow-up, but the best news is that is our last appointment and then we can fly HOME!! We are so anxious to get back home to Aiden and Easton and all be together again.
It has been a very long and hard week,but we are so very thankful for all of the love and prayers that have been sent our way. Believe me, we can feel all of the support even though we are half way across the country. Thank you for being EmmaStrong with us!!