Our first shunt malfunction was in March of 2014. Madilyn woke up from a nap (she never naps...first clue something was wrong) and her eyes just didn't look right to me. They seemed really puffy and they did a ton of bouncing which wasn't normal. After talking with my husband I took her to our local emergency room and a few hours later we were on a med flight to our Children's hospital. By the time we arrived at Children's Madilyn had begun to twitch on her left side and had lost all strength. I could not keep her awake or rouse her. Her shunt series x-rays appeared normal to the doctor that looked at them and he was ready to send us home. I ended up screaming in the emergency room at the doctor to do something because my child was dying and they were doing nothing. I've never been so scared and angry in my entire life. The doctor agreed to order a quick MRI to keep me quiet and proceeded to inform me that the results could take quite a while and then we would be discharged. Thirty minutes later as I'm sitting in a chair with Madilyn begging her to hang on and not leave me the same doctor came running into the room apologizing and telling me that the surgery team was coming to get us. It showed up on the MRI that the catheter part of her shunt had dislodged from ventricle and the fluid was building so fast it was crushing her brain and killing her. I was shocked after surgery at how quickly she bounced back. The very next morning she was up and playful and ready to go, even with approximately 20 stitches and a 2 inch gash in her skull where they had just been digging around in her brain 16 hours prior.
Our second shunt malfunction happened way to quickly after the first. September 25, 2014, barely 6 months and Madilyn took an excessively long nap, was extremely hard to wake up, the bouncing eyes were back and the vomit started. Off to the ER again for a med flight we went. Thankfully this one didn't get quite as extreme as the first one but the recovery was much harder for her and we were inpatient for an entire week.
I am absolutely terrified of another shunt malfunction, I have no problem admitting that. I can't really put into words how traumatic it is to go through. I think I prayed to everything I could think of and probably would've made a deal with the devil in those moments to not take my sweet child. It terrifies me to know it can and will happen again. It's life with Hydrocephalus. It's life when you rely on a piece of equipment to do what the body can't. I'm so thankful for that equipment and our neurosurgeons and at the same time out of all of her diagnosis Hydrocephalus is probably the one I hate the most.
Back to summer with Hydrocephalus....heat and humidity = boatloads of vomit and screaming. Screaming while holding her head and rocking back and forth on the floor, all while vomiting. This is what happens when heat and humidity raise the pressure levels in her head. It's so difficult to watch...I can't touch her, she's sound/light sensitive during these episodes. I can only sit nearby and whisper soothingly to her to let her know that I am there. She lets me know she needs me to stay right there. Quietly, patiently just be there. It's horrific to watch. I tend to sit and cry with her as there is nothing else I can do.
We hide during the summer, in our house with curtains drawn and air conditioners running in hopes of avoiding the trauma. Sometimes it works and sometimes it doesn't. An adult with Hydrocephalus described to me what it felt like to have this happen to him, imagine your worst possible migraine (I suffer from migraines so this was not hard to imagine) and add some extra vice grips to it....UGH! I have other words for it but I won't pepper the blog with my foul mouth.
I'm focusing on Madilyn's Hydrocephalus because September is Hydrocephalus Awareness Month! We are the blue that gets lost in the gold in awareness raising in September. Don't get me wrong, I'm all for the gold awareness, I just wish there was a little more blue! Neither one has enough funds for research and neither one has made any advancements in treatment. The whole thing is sad and scary especially for me because Madilyn has chromosome abnormalities that put her at 3 times higher risk for pediatric cancer ( I won't even go into that fear).........
On top of the Hydrocephalus daily dealings we were inpatient for 4 days in June for her sugar testing which did lead to answers but not easily. Madilyn has severe hypoglycemia and is not on continuous feeds into her intestines because her stomach does not tolerate them. We do constant sugar monitoring and all new protocol has to be put into place for any procedures she has done as she cannot be without her continuous feed or D10 IV fluid without causing life threatening issues. We are adjusting to it, it's our new normal. Thankfully my parents bought her the cutest little Minnie Mouse backpack for her feeding pump so it's functional and adorable and of course it's pink. We also started wearing foot braces to help with support for hopeful walking, her wheelchair (also pink) will be here in the next few weeks, her theratogs (leg wraps) are in and we pick up her hearing aid (also pink...haha) in a few weeks at our appointments in Milwaukee. We also have to see Cardiology for the first time since the NICU for a complete exam and some tests. Madilyn's heart rate likes to be full speed ahead and her heart is enlarged so we just need to make sure everything is okay. Life has been crazy like I said but if she can do it and smile every day so can I. The new pink shoes help too...after all, life is all about the little pink shoes..:)
The picture is from Madilyn's first shunt revision in March 2014. The second picture is because she is just too cute for words in spite of everything she goes through.
