Ok, it's been an insane 5 days. Let me try to bring everyone up to speed because trying to respond to everyone via text and facebook messages about what has actually gone down via my phone is NOT an easy task. Monday night brought little to no sleep for Max and I. He cried most of the night. Something was not right. He did not bounce back from surgery 10 like he should, which is why we went back in for surgery 11 and after surgery 11...even worse. Come yesterday Greg and I were really terrified. He wasn't talking, his eyes were pretty much rolled in the back of his head. He couldn't even look at us. He was almost like in a vegetative state. I was starting to wonder if he had suffered more brain damage, or maybe even a stroke. We asked to talk to nuerosurgeon team. We voiced our concerns, asked if we could run some more testing to rule out if there could be anything else possibly wrong. The neurosurgeon agreed, we also discussed the possibility of another surgery. They did blood tests, a nasal swab, got a urine sample, etc. By early afternoon Max's nasal swab came back positive for noro rhino virus. So he went into isolation (meaning all staff that enters his room has to wear gowns and masks and he loses all privledges to leave his room to play and leave his room) :( However, this is NOT what would be causing how he was acting. (rhino virus is basically the common cold), and they were all very shocked he came back positive for it as he had NO symptoms (no cough, congestion, fever, anything!) They ordered another MRI (a more detailed one that takes 30 minutes) to see if they could get some better images of his brain to see if they had missed anything. After he was finished we were really scared because the ICU Dr who did the anestetic for it was very anxious about reachign nuero immedietly afterward, and made sure that we continued to not let Max eat or drink anything (a sign he may be headed back in for surgery soon). However when we got back up into Max's room and the Neuro PA came in to tell us the results she said there were really no changes shown in the imaging and asked what we'd like to do next. That Dr. Asadi was willing to do whatever we wanted. Max had been crying ALL day, starting around 3:30am, by this time it was later afternoon/evening. We were faced with a decision, do we go back into surgery not really knowing exactly what needs to be done. Knowing imaging has failed us in the past (like Saturday when the second shunt appeared fine so only the first was initally repaired, but then that night had to go back in and repair the second one?) Or do we continue to sit and wait. I was all for going back in. We had talked about possibly doing it earlier in the morning as the surgeon had brainstormed possible options for re-working Max's whole VERY complex shunt system. Re-wiring it essentially to make it less complex and easier to troubleshoot that (god forbid) there be another issue in the future. So that's what we decided. We CHOSE to go back in. They asked if we wanted to do it ASAP, or wanted to hold out until this morning (Wednesday), and that Dr Asadi was willing to do either. I said "I can't look at my baby like this anymore, I want it ASAP." Surgery was scheduled for 8:30, we were told it would last about an hour and a half, it ended up taking 4 hours. We didn't see Max until 1:30am. When the surgeon came out to us in the surgical waiting room smiling, my heart finally fell back out of my throat back into my chest where it belongs. He pulled us (myself, Greg and my dad) into the consult room to tell us how everything went, to show us the before and after images. He told us everything went perfectly. He removed the shunt in the lower 4th ventricle of Max's brain and replaced it and rerouted it into a better, more precise location with a longer catheter. The shunt Max had there was likely too small for him now and wasn't in the best (reaching) cavity to collect the fluid to drain. It was draining at a small dripping rate, when he put the new catheter in he said it was "flowing like a garden hose". The old catheter was working in a way that it was not draining until the fluid filled space had collected enough fluid to reach the holes in the catheter (pictures a straw with small holes down the length of it but there's no hole/holes at the very tip). But the new catherter is longer and reachs further into the fluid filled space that it is constantly draining excess fluid. (YES!) The new shunt is also a programmable shunt that can be adjusted externally by a very strong magnet. So if the flow rate is not enough, or too much the rate of flow can be adjusted without surgery. So, will this be the end of brain surgeries for Max? Will number 12 be our lucky number? We won't know but I'm going to count my blessings. He's doing a lot better today. He's not back to the Max we know yet but he IS talking now, albeit VERRRRYYY SLLLOOWWWLLYY, and not quite eating much yet. But I will take any small victory we get. We're still here at DeVos, but there's a chance we may be going home tomorrow (Thursday). A HUGE thank you again to everyone who had been here to visit, sent prayers, texts, messages, gift cards to the hospital for us, money, toys, balloons, everything! This boy sure is loved!
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.[...]
For those of you who REALLY know me you know I am NOT a reader by any means. I worked at Barnes and Noble for 8 years and I read ONE book while I worked there. ONE BOOK. (for those wondering it was "The Lovely Bones") Anyway, several friends have been talking about this book "Girl, wash your face" by Rachel Hollis, for about a month I've been trying to get my hands on one from a library but they're always checked out with several people already on a waiting list for them when they get returned. I HATE buying books because I never get a chance to read them and I probably have a touch of ADD or something because I can read a page, a chapter, a paragraph and non of it ever sticks (hence probably why I don't "enjoy" reading). Anyway, I (for some godforsaken reason) hauled the boys into Barnes and Noble this week and bit the bullet to finally buy myself the book. It's on their bestseller list so it was 30% off. Guys, I can't put it down.[...]
Well I’m not too happy about losing five years of memories on my old Carepages. But here’s to new beginnings. Truth be told my carepage site wasn’t working for most people anymore. I wasn’t able to upload anymore pictures and technical support never responded to requests so here we go! Thank you for your continued love and support. [...]