Share. Connect. Love.

Posted 2018-07-23T01:02:00Z

10 and 11

Friday started like most other days. You know the crazy stay-at-home-mom life. By the evening after another one of Max's meltdown tantrums while we were out shopping, he worked himself up so bad he threw up in my van. By late evening he was complaining his head hurt. He asked for "mecin" (medicine). I finally gave in and gave him some Tylenol before bedtime and a cold compress for his head. Maybe he had a headache? He fell asleep on the couch. About 2am he woke up again complaining his head hurt and asked for "mecin" this time I gave him Ibuprofen, he started vomiting pretty consistently and didn't sleep much the rest of the night. None of us did. By 6am or so we were all up, Greg was at the store. He still didn't feel well. He was vomiting anything and everything he had in his stomach. Which wasn't much but water, Ibuprofen, and a few bites of jerky Daddy brought home from the store. We started to grow concerned about a possible shunt malfunction. Greg decided he would take him to DeVos to check it out and I would stay home with Miles. (it didn't take long before we both knew Max would NOT be ok going ANYWHERE without his Mama) . Soon I hopped in the shower while Greg tried to find arraingments for Miles as we KNEW hauling Miles with us would NOT be a good idea. We headed towards Greg's sister's house. As we entered the Muskegon Heights area I spotted a woman in a fenced in area, it was kind of...odd. I said something to Greg about her (jokingly) being trapped in there. As we turned away from there I noticed her waving to get our attention. Sure enough, she WAS trapped in there. I had Greg turn around and we pulled up to her. She was in the building and found a toad inside and shooed him outside into the fenced in yard of the business and got herself locked out. She asked if we had a phone she could borrow to call her husband to have someone come let her back into the building. So, I oblidged of course (had I known this was all due to a toad I don't know I would have stopped, I HATE toads with a passion). However, as we pulled away I said I hoped that my good deed would bring us good luck for whatever the day would bring. It didn't. We arrived at DeVos' (very empty) ER thankfully and got right back. I had called an hour before we arrived and talked to nuerosurgery to give them a heads up that we were heading in and what the situation was (yes, I have now become THAT mom). We got right back, saw a nurse and attending physican right away. MRIs and shunt surveys (Xrays of the entire shunt system) were ordered and done faster than ever before) and before we knew it the one surgeon we have never met before (OF COURSE!) we were informed was on call this weekend, we were told there was signs of a shunt malfunction, and Max was going to have to go into the OR. (Side note: Max has had MULTIPLE shunt revisions due to these TWO shunts failing, all but one of these times has been emergent surgeries and EVERY time has been by a surgeon we hadn't met before). So before we knew it, we were in pre-op getting him prepped for surgery. We have NEVER gotten into surgery that fast before. Meanwhile he is still very upset, crying, inconsolible. Friends and family started showing up, my dad, Greg's parents... were all here during surgery. Dr Asadi found the VP shunt in the top of Max's head (he also has one in the back) was plugged. He disconnected it, cleaned it out, ensured the flow was working well, reconnected it and closed him back up. Later in the afternoon the boys prechool teacher and her family visited, along with my friend Courtney who brought me the most awesome bag of necessities (because I didn't send her a list when she told me to). As the evening progressed Max was not improving. Normally within just a few short hours after surgery that boy is eating, drinking, playing, laughing, smiling and ready to go, go go! Last night this was not the case. We asked to speak to nuerosurgery. They ordered a STAT CT Scan and found the lower VP shunt (the one in the back) had also failed, so back to surgery late last night we went. Now mind you, this is not the first time this has happened. A few years ago we came in for one shunt revision, went home the next day (as we normally do) and returned because he wasn't improving, and they found the second one failed too. Dr. Asadi told us last night after performing the same procedure on the lower shunt the odds of both shunts failing like this at the same time are like winning the lottery. (Really? Well, we better start playing because this has been twice now). SO... two brain surgeries yesterday on Max. That's number 10 and 11 on his little head in 5 years. Normally, he'd go home today. He'd be feeling better. He'd be up eating, playing, laughing, flirting with all the cute nurses. But still... not the case today. One of his incisions is bleeding. He's JUST now (about 8pm tonight) started to eat and drink. Most of his day he spent crying, inconsolible, or completely knocked out tired. It has been a very, very hard couple days on all of us. Miles is staying with Grandpa and Grandma Gable for a second night tonight. We're staying here at the hospital with Max again tonight in hopes that he really starts to turn around soon. Meanwhile we have had some WONDERFUL support from friends helping us. Neighbors with Reese, friends cleaning our house, friends visiting us in the hotel bringing us necessities, all the texts and facebook messages that I can't even keep up with (so apologies to those of you I've missed). All of you thank you SO much. Max is here in Helen DeVos Childrens Hospital, 5th floor, room 510. Hopefully not for much longer.

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