We're in Milwaukee again. Seven appointments in three days. That's nothing new but staying at the Ronald McDonald House across the street from the hospital is. This place is incredible. It was so odd to come down here and not have to wonder where I was going to eat or what kind of construction was I going to have to deal with to get anywhere. It was also really odd to sit down to dinner in an entire huge room full of people just like me. Worried mom's, dad's and grandparents. Some were like me and had their child with them and other's are inpatient across the street. It felt really strange to be in a room full of me's. Quite often on our special needs/rare disease journey we tend to feel quite alone, but not today, today was a first.
Seconds...this is only the second time I have traveled to Milwaukee alone for appointments with Madilyn. It's too many days for anyone else to take off to accompany us, so we're flying solo this time. Thank goodness for portable DVD players, Mickey Mouse and Sophia the First, they make for a very cooperative toddler on the long car rides.
Fears...let's be real for a moment, I am full of fears when it comes to Madilyn and only for a brief second am I going to acknowledge them. One month ago Madilyn had her second shunt revision in six months. I understand shunts malfunction, they are equipment after all, it just terrifies me. It terrifies me even more when the neurosurgeon goes into your child's brain to fix the shunt and comes out saying "I hope that works cause I feel like we're missing something, things don't seem to add up". He had expressed concern with the first revision that her symptoms were not true shunt malfunction symptoms, they were brain stem related symptoms but she bounced right back after surgery and we had zero issues for six months. Then she didn't want to wake up, and when I finally got her to wake up the vomit started, the violent kind that leaves her almost non responsive for moments afterwards. The eyes, they no longer flutter from side to side when she's tired, they bounce in total opposite directions and tend to cross, it makes me hyperventilate. The balance that she fights so hard for just isn't there. I can't explain the feelings that come along with these episodes. It's pure adrenaline and prayer. Prayers that we make it in time, prayers that nothing happens on the flight, prayers that it will be "fixed" and that she'll bounce back quickly to her normal, happy self.
It took a few days this time, that did not go unnoticed by any of the neurosurgeons. I have since discovered that it may be her Posterior Fossa Cyst (her Dandy-Walker cyst) that may be the problem and not the shunted area of her brain. The Posterior Fossa Cyst is a fluid filled pouch that is where the cerebellum area of Madilyn's brain is supposed to be. I vividly recall the nurse from Special Needs pointing out the fact that the Posterior Fossa Cyst was smaller on the MRI than it was 6 months ago. It's time for me to address this with our neurosurgeon and see what he feels. I know of two little girls that passed away because of the Dandy-Walker cyst and sudden pressure changes in it and I know of one other that had to have it decompressed because of the issues it was causing. This terrifies me. Nobody ever said that this could happen, it's never been talked about and when I learned about it (from other mom's) I felt like I had been sucker punched. Of course, neurosurgery is our 7th and final appointment late Wednesday afternoon so I have lots of time to make my lists of questions for him, and lots of time to pray.
I'll update after all of her appointments are over, all I know for sure at this moment is that Madilyn is snoring very loudly next to me and it makes me giggle. I also know that after her appointments tomorrow we are coming back here to find Nugget the dog, the house mascot and therapy dog. I think we needs some pictures with him and quite possibly some new little pink shoes.
