I gotta tell you I am not quite sure what happened to this summer. There were quite a few differences from previous and some additional High family chaos, which has resulted in the synopsis vs. the day to day update.
What was good, even great, about this summer? Well, it was the first summer in two years that Aaron was home for the WHOLE summer! We had lots of fun things planned, camps for Max, a trip to FL, beach time, but of course, as usual nothing goes quite as planned.
My working this summer, thank you LuLaRoe, was a new added wrinkle to our normal schedule, albeit a fun and fashionable one. In between pool time and summer tutoring I was photographing and having online pop-up boutiques. It was crazy busy!
Max and Alex both attended VBS at Blessed Sacrament and LOVED it. It was Alex's first group experience and he had a blast! Summer was off to a great start. We had a week off for major hanging out and then Max had Robotics camp scheduled. He went the first day and loved it, but was clearly feeling off. On Tuesday he was really not feeling well and could not attend, but Wednesday his heart rate was VERY LOW and we made the call to take him to the ER. There we discovered via blood work that his potassium was extremely low, 1.4, for those who are aware of what the numbers are. Well, this won him a one way ticket to an admit. He was given IV fluids and potassium over the next 18 hours and released. Unfortunately, he missed the majority of his robotics camp. He did manage a triumphant return for the final day.
I have to appreciate that when SMA takes some time off from throwing us curve balls. Other calamities come in to keep us on our toes. I mean, Max had never had an EKG before. Some SMA families are followed by Cardiac docs to monitor the strain on the heart from the weakened respiratory system, but this was an area I figured I would rather be oblivious too. Is that wrong? Maybe. To me, it is one more appointment that only brings us possibly dismal information without any real way to combat it. I've had enough of that in our lifetime, thank you very much!
Thankfully, Max was back to himself just in time for Alex's birthday party. This was the first time Alex actually had a real birthday party, so it was a pretty big deal to him. Now, he is our superhero obsessed child, so it was only fitting that he would have a Captain America themed party.
Now what happened after his party could not have been planned any better. Alex always likes to tell people that he is calling the police (the poe poes, as he likes to say) and getting you taken to jail. Aaron and I joked about getting an officer to come and pretend to arrest him. Now some people think that is a bit mean, but if you knew how much Alex teased all of us and his crazy sense of humor (and our really terrible senses of humor) this is to be expected. Now, of course, we didn't do that, so imagine my surprise when we are heading home from the party at the pool and see a police car pull into our cul de sac with lights on. Alex immediately starts freaking out, thinking all of his threats have come to pass. He is saying to me, "please don't let them take daddy to jail." The officer gets out of the car and asks for Aaron, now Alex is really freaking out. I actually had already dealt with this officer for a neighborhood issue previously, so we knew each other. Turns out there were some teens hanging out in our driveway when Aaron and Max got back from the pool and Aaron was none to happy about it. Well, the officer was super nice and he even had an Ironman mask with him, so he and Alex were able to discuss superheroes for a bit. What a crazy end to Alex's birthday!
Now July really flew by. We had a great Fourth of July with friends, enjoyed a lot of pool time and even some beach time. Aaron finally fulfilled his dream of seeing Guns N Roses in concert. Then to round out the month Aaron's brother, Andrew, his wife Jodee, and our niece and nephew, Kaydee and Sam, came for a visit. This was HUGE! We had not seen each other since Max was 9 months old. We had a fabulous time mostly just hanging out and spending some serious quality time together. The boys (and all of us) loved every minute of it. It was a little rough to see them go.
It was a good thing the boys had a trip to FL to look forward too. Just a few days after they left the boys and I packed up for a trip to FL, complete with my entire Lularoe inventory (as I was doing a pop-up). We really didn't do much at all while we were in Florida. It actually rained every single day while we were there. I can't complain too much, because the last two years we were there the weather was beautiful. Of course, it didn't matter the boys just love being at Papa and Nana's house and we were able to celebrate my Granny's birthday a little early.
Back to South Carolina to hurry up and get ready for school to start. Meanwhile, we were continuing to try and manage Alex's issues with constipation. While in Florida we thought we were doing pretty well, but by the time we got back to SC it was evident there was a bigger issue. Even with Mirilax and multiple enemas we were getting very little in the way of results. His poor belly was distended and hard. We were at a loss. I decided, and I am fairly good at this judgement, when it is time to call in someone else. So after Mass and the boys open house at school, I took Alex into the ER. They were very concerned with what they saw, so much so that now Alex won an admit to the hospital. Basically, without being overly graphic, Alex had a ball of stool so hard and large it could not break up or come out. There began four of the craziest days...and I say this being a parent who has seen emergency intubations and crash carts in my kids room. Alex was admitted to the regular unit and it was a debacle of miscommunications, new residents, and unfamiliar doctors. Honestly, our stay should have been overnight, possibly, two nights at most. All they were doing were enemas and Go Lightly, all of which we could do at home. They mentioned bringing in surgery, which obviously, Aaron and I found concerning, but then surgery would come in and say he isn't surgery material that we needed GI. Okay, that is fine, then LET US GO HOME. I would then tell the residents and attending, okay, if you aren't bringing in surgery then discharge us, we can follow up with GI and do all of this at home. Apparently, they interpreted that as I wanted surgery. No, I don't want surgery...do you people understand basic communication skills. It was so frustrating.
But clearly, that wasn't enough...we are always ready to up the crazy. We were managing pretty well. I was staying the night at the hospital, then Aaron would take Max to school, go into work for a bit, then come and relieve me, so, ya know, I could shower and what not.
Well, on Wednesday Aaron takes Max to school only to find out there is a bit of illness going around the class. He decided we had enough going on to risk that, so he took Max and Nurse Gina back to the house. He headed into work and then came to the hospital. I got home had something to eat and spoke to both Max and Gina. I then went to get in the shower. As I was literally stepping into the shower there was a banging on my bedroom door. I open the door to find Gina holding Max and saying he is unresponsive. I tell her to go put him on his bed and get his pulse ox monitor on. I get my robe on and follow her into the room. One look at him and a recognize he is having a seizure. Yep, that's right people, my kid who has been seizure free for over 3 YEARS, who went off meds last February, is having a freaking seizure. Add to that, that his oxygen is dropping and his heart rate is very high. I have Gina start to cough him and I am pulling out the oxygen machine and getting his bipap ready all while dialing 911. I gotta be honest. I was freaking out. I mean, what the hell?!?! The fire truck and ambulance got there and sort of took over, because Max's oxygen starting dropping again. He was turning blue. I had the nurse calling Aaron to tell him what was going on and that we were heading to the ER. Why did she call, the nurse? Oh, because I was freaking out! The EMTs administered Ativan, but Max was not coming out of the seizure. In fact, Max did not come around until almost on hour after onset and even that is conservative. Due to his frail respiratory state they were nervous to administer another dose, as it suppresses the respiratory system and that was the last thing we needed, if there was an order of "last things." Thankfully, Max responded, finally, to a nice hard pinch. Well, a seizure like that will also win you an admit, so now if you are keeping up we have TWO children inpatient in different units at MUSC. Now I know they are building a new Children's Hospital, I just didn't think my kids would be single handedly funding it with their admissions! Seriously, the docs could barely look at us without pity while we were there. Thankfully, upon seeing a FB post so many took it upon themselves to jump in and help out. The boys OT, who the LOVE, immediately text me and said she was coming to the hospital to sit with Alex, so that Aaron and I could both be with Max to get him settled and I was able to finally run home and get that shower. Another friend called our parish and let our priest know and he was down at the hospital with lightening speed to anoint both boys. Another friend ran Aaron and I dinner, which many offered to do, the timing just happened to be best with this person.
Thankfully, the night was uneventful for both boys and we managed to score what may have been the most coordinated discharge (and quickest) in hospital history. Both boys were in their chairs headed out of MUSC at 10:30am the next day. I still can't believe it!
We opted to keep Max home for the next week to see how he did and if we noticed any seizures and for the next few weeks all was quiet.
We closed out summer with a week in the Outer Banks. We rented the same house we did last year with hopes of a relaxing week at the beach. We followed a tropical storm up to Nags Head for our week. It was a week of beach time (after the crazy tropical storm waves receded), hot tub time, and exploring. Mostly, we just got to hang out, which after our summer was a treat. We learned about the Lost Colony at Roanoke, which was pretty crazy. We also took another horse tour this year. We requested the same guide as last year and John did not disappoint. This time we actually got to see the horses running on the beach. The boys loved his “crazy” driving and the adults loved all of the great information regarding the area. Of course, Nurse Gina didn’t really enjoy it when he pretended the truck was stuck way out and in deep water.
The hot tub is always a favorite, so much so that Aaron went out and got the boys an inflatable hot tub (yep, you read that correctly) for them this fall and winter. This will be great for Max and Alex, and I’d be lying if I said the parents are going to enjoy it too. This was an inexpensive venture to see if we would actually utilize a hot tub.
Aaron and I even managed to escape for a few hours for a bit of beach and frozen yogurt.
We headed home after a very peaceful/uneventful week. Thankfully *most* of our drive was uneventful. Unfortunately, about an hour from home the whole van started shuddering. Aaron is pretty handy to have around and pulled over to check the tires. The torq was fine on them (what the heck is torq anyway???), but obviously there was an issue. Upon arriving home he discovers one tire is completely misshapen. We ended up having to order all new tires for the van, not really an expense you want right after vacation. We couldn’t complain too much though, because we made it home safely.
When we returned home it was time to settle in for the school year. Max returned to school after a full two weeks off. Fourth grade is challenging and Max is working very hard this year.
Just when we thought summer was all wrapped up…I went and signed the boys up for adaptive surfing last weekend. I seriously thought Aaron was going to kill me. For that weekend alone we were scheduled for a charity walk with Carolina Children’s Charity in the morning, adaptive surfing experience in the afternoon, and the an adaptive recreation expo on Sunday afternoon. Over commit much?
Well, we were up early on Saturday and getting ready to go. I heard Aaron talking to Max and he sounded a bit funny. I knew what was coming…Aaron called out to tell me that Max was having a seizure. This seizure was a bit different, this time he was blinking rapidly and his face was twitching. Thankfully, this seizure lasted only 4 minutes, so we did not have to give any additional medications. Max’s oxygen level dropped rather low, but only for a brief bit. We put Max on his bi-pap and he slept for about an hour and a half. When he woke up he was upset about missing the walk and having had another seizure. We have now come to the point where we need to learn to adapt. We cannot let seizures rule our lives. We didn’t cancel the whole day out of fear of another seizure (or fear of letting our immobile children into the waves with strangers on a surf board, but I digress). Instead we loaded up and headed to the beach. We got out to the beach a bit later than we were hoping for and the waves were getting quite rough. Aaron and I began to feel very uneasy about letting the boys go out there and Max had already expressed his concern. Thankfully, The guy who was to ride with the boys on the board came up and started talking to us about it. He was so amazing and we breathed a sigh of relief. Both boys were able to go out and Max referred to it as “EPIC.” Alex loved it too. For Aaron and I it was a chance to relinquish a little control for a brief period and you know what, everything was fine! Who would have thought????
We are now knee deep into fall, having already survived Hurricane Matthew, although at one 12 hours without power you would have thought our children lost the world, first world problems much.
The boys have their Halloween costumes and are ready to try our Disney trip and praying the third time is the charm in a few weeks. We are about to enter what I like to call the Max trifecta…Halloween, birthday, and Christmas and now to throw in a vacay too! I hope he can handle all the fun. Alex has recently informed me that he needs another birthday each year…good luck with that one kid.