We've been having some "issues" since early February, up until this past Saturday morning they were all chalked up to "it must be a virus". I absolutely positively despise those words. Those are a doctor's polite way of saying I have absolutely no clue what is wrong. Madilyn was fine on Friday morning and then she went down for her nap...when she woke up her eyes didn't look right. They tend to flutter when she's tired but they appeared to be little slits and when they were open her eyes were darting in completely opposite directions. I watched her closely for quite a while and then noticed she went completely cross-eyed...this NEVER happens and is a huge flag for a shunt malfunction. I also noticed her balance that we've worked so hard for was not there so I called Special Needs in Milwaukee and talked to them and brought her to our local emergency room.
It's difficult to explain the panic I felt bringing her there. One moment she appeared fine and the next everything was haywire. Thank god the local doctor that was on duty that evening knows me and Madilyn and knew something wasn't right. Med flight was arranged to bring us to Milwaukee and by 1:30 am we were on our way. This is the second time we had to med flight to Milwaukee and it scares the daylights out of me, Madilyn however, loves the plane ride...the ride doesn't bother me either it's just the circumstances surrounding it that tend to drive me crazy with worry and panic.
When we arrived at Children's Hospital emergency room the chaos ensued when the first ER doc acted like I was a little crazy....I do realize they deal with people every day that insist there's something wrong with their child when there really isn't, this however wasn't our case and I was adamant. They went over her labs from our local hospital, multiple doctors came and looked at Madilyn and talked to me and they finally sent us for shunt series x-rays. The doctor came in a little while later and said the shunt series showed absolutely no problem with it. I freaked out! At this point Madilyn had a constant tic on her left side and was unable to sit much less to anything else, she was struggling just to pick her head up and could barely open her eyes and the whole time she kept letting out with this horrid gut wrenching painful screech. I totally flipped on that doctor and demanded they do something because something was seriously wrong and for the third time in a year I could feel her slipping away from me.
He agreed to send us for a CT scan to check the shunt and within 35 minutes of heading to the scan we were heading to emergency surgery. The catheter part of her shunt that goes into the ventricle and does the draining had come out and the pressure on her brain was building quickly. Surgery last an hour and a half and thankfully all of her symptoms were gone afterwards. It amazes me that they can open up their head and repair something that goes into her brain and less than 24 hours later we were ready to come home.
We were informed by the neurosurgeon that all of the feeding "virus" issues that sent us to Milwaukee in mid-February and the sleep issues were probably all the shunt starting to malfunction. My gut told me then that they missed something but it wasn't a feeling that made me panic like when she woke from her nap that day. That day was the third time in 13 months that I was told that if I didn't trust my instincts and had just put her to bed she probably would've never woken up. Those are the hardest words I have ever heard and hearing them once was awful but three times....CRAZY!!!
I don't focus on the "what could've happened" because I trusted my gut and it turned out for the best and if I focus on what could've happened I will miss out on way to much of the now. It does put it into perspective just how precious every single moment is in our lives. They don't give us life expectancy guesses with Madilyn because they don't know. She could live for 70 years or 7...they've never seen her grouping of rare diseases and her complex X-chromosome abnormality they know nothing about so we choose to make long-term plans but we live in the now and are thankful for every single moment that we get.
As we are really wanting to just recuperate from this whole thing life must go on and we are packing to head to Milwaukee again for another eye exam under anesthesia to make sure the fluid pocket hasn't moved. So for the next few days we will pray exceptionally hard for no changes, we will enjoy every moment and we will wear her new little pink shoes......cause that's what it's really about.....those little pink shoes.
