First Tummy Bug...

We had another first around here. Wyatt had his first tummy bug. We have been dreading this day for a little over a year because Wyatt had a Nissen Fundoplication, which is a procedure where they wrap a portion of the stomach around the esophagus in order to prevent reflux. What that means is nothing can come up... at least not easily. Many different providers will tell you that it isn’t impossible to vomit with a Nissen, but it’s very, very difficult. We found out just how difficult it is this week. I’ll save you the details, but trust me, it wasn’t a pretty sight. https://youtu.be/QXq23DK3wm8

This was before the tummy bug hit. 

Following the night of vomiting, he had a pretty rough day and was lethargic. He was home with Daddy that day and there were quite a few phone calls, texts, and some FaceTiming to determine how to proceed. Thankfully our pediatricians office had an appointment, so we saved ourselves a trip to the ER. They believe it was a combination of the work he had to do with the tummy bug (and vomiting through his surgical procedure) and perhaps another seizure so he was just wiped out and needed to sleep. He’s feeling much better and so far, nobody else in the house has gotten it. 

He’s slowly returned to his normal self, which involved telling his PT just how much he doesn’t want to do what she wants, and telling us all about his day. I snapped a video of him while he was “talking” to us. Unfortunately he caught me during the video and stopped, but I got a few seconds of him chatting. 

We likely have a surgery date scheduled for the beginning of March. This will involve at least 4 of our specialists, and there’s a chance a 5th, but we are unsure if the OR will accommodate that many different procedures in one day. ENT will do adenoids/tubes/tonsils, pulmonologist is doing a scope to get a better view of his airway and lungs, audiologist is doing a hearing test, and the ophthalmologist will do a vision test/get photos. We are hopeful urology will jump in and do their procedure but we aren’t sure if he needs one or two procedures with him and adding that on may extend the sedation time. So, we will see. The good news is someone the scheduling gods worked in our favor to get all of these doctors to be in the same location on the same day. 

This guy is loving his new found independence! A lot of the our daily happenings like diaper changes, getting in and out of the car seat, and eating have changed now that Wyatt has figured out he can “help”. Let’s just say he’s really acting his age. Sometimes Brian and I just laugh, shrug our shoulders and say, “He’s two!” I’ll admit, it feels pretty good to have him do something typical for his age. Okay, I don’t usually admit that when he’s eating because I don’t love sticky hands or avocado in his hair. 

This shirt says it all. He IS the boss. 

EEG Results

We spoke with the neurologist this week. Wyatt’s EEG came back normal. While it’s a huge sigh of relief that his brain is functioning normally and his brain waves were normal, we are still going to treat with anti-seizure meds. The doctor believes what we are seeing is seizure behavior and felt strongly that we should treat accordingly. We were in agreement and proceeded to discuss options, and chose to medicate using Keppra. 

(Sometimes you just gotta lick the bowl when your dinner is finished...)

As the doctor explained, if he is responsive (see a decrease in the staring episodes) to the medication, we will know he has been having seizures. If he does not respond to the medication, it will mean either a) the episodes we are seeing are not seizures or, b) we need to try a different medication. {insert huge eye roll here because of course it can’t ever be easy with this kiddo!}

(Mark on his eye is from his BiPAP mask...smile on his face is from his new favorite food- dairy feee yogurt mixed with avocado)

The neurologist has a wicked sense of humor like we do and simply said, “Well, looks like he’s outsmarted us once again!” She’s describing a very common theme with our guy. He continues to be a medical mystery. The cutest medical mystery you’ve ever seen, I would bet. She described his seizures as most likely partial complex seizures (also known as focal seizures). We need to be aware that these could mean one day he jumps to tonic-clonic (also known as grand mal) seizures or he may not. Currently the partial complex seizures are only impacting one portion of his brain. If it turns to impact his entire brain, it would impact his whole brain which would then impact his whole body.  Only time will tell. The hope is by treating him with medication, we will greatly reduce the likelihood that he has a tonic clonic seizure. 

Big things are on the horizon for our favorite blondie. We are awaiting the final confirmation on who will be joining his next surgery and a date. The best news we got was confirmation we do not need cardiac clearance for sedation, which means one less appointment. While I understood this to be true based on our last cardiology appointment, it seems the team needed to hear it from the heart guy himself. 

We would appreciate continued prayers for controlling the seizure episodes, battling cold and flu season, and a little bit of sleep around these parts. Our guy is back to middle of the night party sessions. 

What We Have Learned (so far...)

Being a mom has taught me a lot. More than I ever thought I could learn. I learned you can survive with very little sleep, with lots of coffee. I learned a love so deep that it makes your heart explode and hurt at the same time. I learned that little boys need to be covered at all times when you change their diaper. I learned that my husband is a pretty amazing daddy. Being a mom has taught me that you have to be flexible sometimes and schedules aren’t always followed. Turns out, kids don’t have an on and off switch. I’ve learned a lot in the past two years, thanks to being a mom. 

But being a mom of a medically complex/special needs/all around bad@$$ kiddo has taught me so much more.

It’s taught me empathy, compassion, advocacy and strength. I’ve always thought I knew these things. I’m a special educator by trade, afterall. I know empathy. I know compassion. I know kindness. I’d argue now that I was pretty clueless before. Sure, I was respectful. I treated families and kids with respect and attempted to put myself in their shoes. But I had no idea. It’s also taught me how to reflect, speak with emotion but also with logic, and it’s taught me to always ask questions. 

You see, you learn a lot when you watch your kid fight for his life. You learn a lot about strength when doctors look you in the eye (most of them, at least) and give you earth shattering news. And you learn a hell of a lot when you have to tell others how to care for your child, since he pretty much defies most medical definitions. 

Wyatt isn’t textbook by any stretch of the imagination. He’s not typical. He’s not straightforward. And he certainly isn’t weak. Which is why I can’t be weak either. 

Compassion was taught to us by nurses, doctors, therapists. They showed us how to care for our son, despite his differences. They showed us love when we were in our darkest hours. We now know how to love others in their darkest hours. They also taught us how to fight. To speak up for Wyatt and for others. I’ve always advocated for those with special needs, but now I do it with more passion than I’ve ever had because it’s personal. 

I have learned how to be strong even though I may feel so weak. Putting on a brave face and fighting this fight head on, because that’s what Wyatt needs. Strength to push Wyatt when he needs to be pushed, and strength to say when it’s enough. Strength to know my own limits in terms of feelings or abilities. Looking to others for support, when we need it. I’ll admit, this lesson has been the hardest one both personally and professionally. Friendships have been tested, priorities have shifted. It’s hard watching the world around you continue to go on, but strength is what gets us through our days. 

Wyatt will continue to grow and amaze us, continuing to teach me about being a better mom. 

EEG (no results, yet)

Today was EEG day. The EEG, electroencephalography, is a tool to monitor waves inside the brain. It records electrical activity within the brain and the hope is that it can record any abnormal events, if they occur. During the test, they wanted moments of being awake, asleep, and stimulated. 

The waiting was the hardest part today. I made a mistake with the time and we arrived super early, which meant extra time waiting. In case you didn’t know, two year olds aren’t the best at waiting. He took it like a champ and we got creative while trying to entertain him. Thankfully we were in a waiting room with mainly adults and they were all gushing over his hair and trying to entertain him with me. 

The EEG involves lots of electrodes attached to your head. The tech commented that his luscious locks would get messy, and she was right. They use some sticky stuff to attach the electrodes. It felt like we would get 4 attached and he would pull off or wiggle out of two. It was a process. Thankfully the tech was patient and didn’t seem to be bothered by his squirming and protesting. She also wasn’t bothered when he smacked her hand away. I was mortified. I know he’s two and we were really pushing his buttons, plus he lacks the ability to communicate his frustration, but it’s still embarrassing. 

We finally got him settled after wrestling with him and sweating bullets. He was pretty thrilled when we stopped touching him. 

They wanted him to sleep and I finally got him to take a little snooze. It took some creativity and I hope I never have to see the video (yes, they record the study) and the contortionist moves I had to do in order to get him to sleep. He slept, I laid next to him, and then it as time to wake him. With strobe lights. It seemed like torture to me, but he just laughed at it. 

The hope is the pediatric neurologist will review the study this evening and pass along the information/results to his neurologist. That information will be shared with us immediately if it’s urgent. If it’s not urgent, we will review at his follow up appointment. 

We aren’t 100% sure what we want the test to show. While we never want to hear bad results, it would give us answers for the staring spells we are witnessing and could help us determine next steps. It’s always strange to be hoping for a diagnosis, but we have found that a diagnosis can help bring some clarity. We have also found that often times some answers cause more questions. 

That, my friends, is why we love our boy. He’s unique. That’s for sure. 

Keep on Keepin’ on...

I know this isn’t a shock to you, but our little guy is pretty awesome. You see, we’ve had a rough couple of weeks. He’s fighting something and has had a few hiccups along the way. About 4 pediatrician visits, a phone call or two to the on call pulmonologist (can I get an amen for the poor doctors who have to take phone calls at all hours of the day and night?!), an antibiotic, another phone call to the on call pulmonologist, a steroid for good measure, and I think we might be on the mend. Cross your fingers and toes. 

Look at that face. We always know when he’s fighting something because his face gives it away. The bottom right picture is on day three of steroids. Always the worst day. Our nurse shared that steroids can make kids agitated or hyper. I think we realized which way it sends Wyatt. Pure agitation over here. ‘Roid rage is real, folks. 

Tonight he was much better after eating twice as much as normal and some extra snuggles with Mom. This was him when we were singing our goodnight song. 

That’s our happy boy!

He continues to love to roll and sit. Check out these videos. Please note, he finds the most unusual ways to do just about anything, as evidenced by the slightly awkward roll into sitting. 

But check out how long he sits now!

Before you ask, yes... this was at bedtime. It’s a common pattern in our house. We put him to bed, he thinks it’s playtime. Seriously, dude. 

We have an appointment with GI tomorrow to review his weight. He has been eating more real food recently and we are hoping the avocado and other foods are helping. I suspect we will add some calories to his feeds, as he hasn’t gained much weight since our last appointment. I’m also excited to share with them he has tried drinking orally. He attempted a straw and did well but has since refused since we have to help. We are now using a training sippy cup with a bottle nipple and he’s loving it. Doesn’t love when we help him (he is two, afterall..) but loves to try. That’s important. Lots of tube fed kids can become so frustrated with oral feeding that they refuse to do it. But our guy has some willpower and drive, so we will continue to expose him to oral feeding following his lead. 

In addition to GI this week, we will get an EEG done on Friday, as we are suspecting he is having absence seizures. He will stare off for 3-10 seconds at a time. Given the fact that he has a genetic “error” that includes a high likelihood for a seizure disorder, we knew it was important to reach out to his neurologist and share this information. She ordered an EEG stat and we got in for Friday afternoon. In all likelihood, the EEG won’t capture anything, just like when you take your car into be fixed and it doesn’t make the sound you’ve heard for days on end, but I suspect our neurologist will want to see him following the EEG and will treat as if he does have absence seizures. For those who are unfamiliar, absence seizures are also referred to as petit mal seizures. They are not the violent shaking episodes people think of with seizure disorders. These are seconds of staring off into space, or stopping in the middle of what you’re doing and then returning to whatever it was you were doing. We are hopeful this isn’t a sign of something more and that there is a plan for treatment. 

We appreciate your continued prayers for improved health during cold and flu season, as well as a good recommendation for nutrition tomorrow & encouraging results following the EEG. 

Here’s to a New Year

2017 was filled with some really high highs and some pretty low lows. We started off the year with what seemed like hospital stay after hospital stay and eventually the trios became less frequent. We established some solid care routines for Wyatt and grew in our ability to care for him from the comfort of our home. He became even more of a bionic boy, with the addition of his BiPAP and the switch from a G tube to a GJ tube. We added in his least favorite torture device, The Vest. He screamed his way through some grueling PT and pool therapy sessions. 

But you know what else we did? We laughed. A lot. 

We went to the beach, traveled to Pittsburgh & Michigan, we made new friends, we learned new tricks, we kept up with lifelong friendships, we celebrated big milestones and little ones, too. 

I can’t wait to see what 2018 has in store for our guy. Whatever it is, I know it will be awesome. 

We thank you for continuing to follow our journey. Many of you have laughed and cried along with us. We hope you will stick around, share our story, continue to pray for us, and most of all, we wish you happiness in 2018. 

Here’s to a great year. 

P.s.- as I write this, Wyatt is sleeping comfortably after a fever scare. He went from no fever to 101+ in less than an hour. Thankfully, no seizure! His temp has slowly decreased with Motrin and we will continue to monitor. Cross your fingers and toes we can ride out this sickness from the comfort of our house. We love our Hopkins peeps, but we love our own beds more.