Lessons Learned, Part 1

Before I get into the details of this post, I want to apologize for the lack of updates. You’d think with being home 24/7 I would have a lot of extra time on my hands. Turns out, it doesn’t work that way with a kid. 

I’ve had a few people comment recently about enjoying Wyatt’s story, the impact his story has had on them, and the joy he brings to them. To those people, I thank you. To each of you reading, I thank you. What originally started as a way for us to communicate with family and friends about Wyatt’s early days in the NICU has turned into something else all together. And for that, I’m grateful. 

I find it incredibly ironic (in a not exactly funny, but also funny because if you don’t laugh, you’ll cry kind of way...) that I’m a special educator by trade. That my passion for children with disabilities began back in daycare with an amazing kid with Down syndrome who captured my heart and showed me what is possible with inclusion. So armed with a little bit of background knowledge and a love for teaching, I went into special education. 

And you know what? That degree doesn’t mean a thing when it comes to being a parent of a child with a disability. Turns out, I didn’t know squat about not only parenthood but also parenting a child with a disability. 

Because I have always used this space to share Wyatt’s story as well as a place to put down my thoughts and feelings, good and bad, I thought it might be a good time to share some things Wyatt has taught me. My hope is that this will be a multi-post series that will include pictures, some history, some of the present, and a well rounded look into our lives. It may even include a few laughs along the way. 

Thanks again for following his story. I hope you’ll stick around for some lessons learned. 

I’ll leave you with this photo of our guy, standing in his gait trainer, pants half down because he had tried to remove them, standing askew because he was actively telling me that it was time to move the gait trainer since he ran into another piece of furniture. We’re just thankful he had on two socks for once. 

Summer Updates

Wow. Hard to believe it’s been since May that I’ve posted here. We have, like everyone, been busy staying at home. Life has been much slower paced, with many more moments together. Some days it is overwhelming, but most days it’s been an amazing blessing in the midst of a pandemic. 

Wyatt has been continuing with physical therapy in the virtual world and it’s been incredible watching his progress over the past six months. The downside has been less time spent with his therapist, but the positive has been her being able to provide things we can do at home with the materials we have. 

Wyatt has many strengths and one of them is his incredible gift for impeccable timing. Usually it’s things like popping out his feeding tube just after I finalized a scheduled tube replacement for two weeks out, requiring an emergency room trip and an overnight stay. 

During the pandemic? He’s decided crawling is much more efficient, taking risks is way more fun than playing it safe, and furniture is definitely meant for climbing. Sure, these are all AMAZING things. Huge milestones. Incredible timing as I’ve been able to witness these milestones. Also incredibly inconvenient because we weren’t quite prepared and thank god for Amazon Prime to get all the toddler-proofing items we needed. 

Tomorrow we head in for a scheduled sleep study. Well I should say a rescheduled (three times? Maybe four... thanks COVID) sleep study. We are hopeful this study may provide some insight as to why he sleeps so little. Lots of people complain their kids don’t sleep. Ours actually doesn’t and even with some medication to help? He still averages about 5 hours at night. Then a nap of anywhere from 1-2 hours. His team is hopeful we can get some info from the full EEG he will have placed, giving us some idea of what’s going on neurologically while he’s sleeping. In hopes that we can treat it. 

The bright side? We aren’t worried about the trach conversation this time, which has been a theme of all of his previous sleep studies. 

I’ll leave you with this video. The video shows him crawling to get places (he goes further than this but never when I have my phone in hand), being incredibly “helpful” with the dishwasher, and some photos of him climbing. 

We hope you’ve all stayed healthy and safe! 

Here we go Again...

Yesterday after meeting with our GI the day before, we were given the go ahead to try transitioning his feeding tube feeds to a portion being in his G port (his stomach) from his J port (small intestines). We were eager to see if we could reduce the time he’s forced to spend on the feeding pump, tied to cords. 

He did great, until he began vomiting profusely. After a few vomiting sessions, some coughing, and desats, he became unresponsive. I called an ambulance and the EMT’s and I were forced to make the difficult decision to go to our local hospital rather than make the 50 minute trek to Hopkins. 

We would always prefer to go where his doctors are, but we understand that safety is paramount and we needed to get him stable before transporting him to Hopkins. At our local hospital they ran some tests, did a chest X-ray and determined he likely aspirated when he was vomiting. That means either food, gastric contents, or both, made their way to his lungs. 

He was transported to Hopkins and taken immediately to the ICU. His night last night was up and down, with oxygen requirements much higher than home and needing BiPAP when he was awake. After some snuggles and playtime, he perked up a bit and we transitioned off of BiPAP when awake to a nasal cannula. This is one step closer to home. 

He’s currently resting in my arms and we have transitioned out of ICU to a step down unit. Hoping for a calm remainder of our stay. 

Feeding Tube FAQ’s

Happy last day of Feeding Tube Awareness Week 2020. I’ve posted all week on Instagram and Facebook, so figured I would end the week on the blog for those followers who only catch us here. 

I thought long and hard about what to post for the last day since our Facebook and Instagram posts covered quite a bit in a short period of time. I realized that we get asked a few of the same questions somewhat regularly, so why not make a FAQ post? 

Keep in mind, these are questions we get asked and our response is not representative of everyone’s journey with feeding tubes. 

How long will Wyatt have the feeding tube? 

We don’t know. He will have it as long as he needs it. For him to not have it, he would be required to take all of his daily calories orally. He currently takes 0. We have hope that one day we can transition away from tube feeds, but for now it’s keeping him alive. 

Why can’t he eat by mouth?

We don’t know. He ate orally for about 10 months his first year. Around 8 months he began a rapid decline in what he would tolerate, then completely refused. Current theories include his reflux became unbearable, around 6-8 months sucking stops becoming a reflex and becomes a skill and he didn’t make that switch, or since he was working so hard to try to breathe and eat, he stopped eating so he could breathe. But those are all theories, and the truth is we may never know. 

Why can’t you just not feed him? If he goes long enough without eating, he will eventually, right?

Nope. It’s not that he’s a picky eater or doing this behaviorally to get what he wants. So we can’t apply a behavioral approach to it. We tried this long ago before transitioning to the nasal tube, as we wanted to be sure this was what he needed. He ended up hospitalized. It wasn’t because he was doing this behaviorally. 

What all does it involve? Is it easy? Does it hurt? 

These are actually some of our favorite questions! It involves quite a bit, but it’s now routine for us. It means we have to prepare his food, load up the feed bag, prime the bag, attach, and go! He’s fed 20 hours a day, so we refill his bag throughout the day. We also give him his medicine through his feeding tube. It wasn’t easy at first, but now it seems like second nature for us. So yes, it’s easier now. It wasn’t before. 

It doesn’t hurt to get him hooked up to feeds, and it doesn’t hurt when he’s fed through the feeding tube. We imagine it hurts a bit when it’s changed (under sedation in the hospital) every 6-9 months, but he takes it like a champ and nothing a bit of Tylenol can’t help. It did hurt when the tube was originally surgically placed, and he spent about a week in the hospital. 

It also doesn’t seem to hurt him when he’s rolling around and gets to the end of his line. He just grabs the bag and pulls on his line to bring the pump and bag with him. It’s quite comical. 

We hope you’ve learned a thing or two about feeding tubes this FTAW! 

Double Whammy

On Thursday, Wyatt presented with symptoms of the flu. After some weird breathing issues and some desats, I called our on call team who advised we come to the hospital to be admitted. After a bit in the ER, we were up to our regular floor. He was not positive for the flu. He has not one, but two viruses- adenovirus and parainfluenza (not the flu). 

{photo of Wyatt in a recliner at the hospital, his eyes are red and watery and his lips are chapped. Clearly, sick.}

Friday was a relatively good day, he seemed to be turning the corner. He was requiring less deep suction, which is a catheter in his nose that goes beyond the nostrils but not as far as the throat, to get out mucous. Since he was still requiring it, we couldn’t get sent home as that’s hospital level care and not something we can do at home. 

{photo of Wyatt looking out the window with his toy bus on the window ledge. It’s not visible, but he was attempting to lick the window.}

Last night we had high hopes for a calm night and our plan was to attempt to get him through the night without having to deep suction him and prepare for discharge home. 

Wyatt had other plans. 

Middle of the night brought lots of oxygen desaturations, with increasing difficulty getting him to recover from them. We tried multiple interventions, but none of them worked. In a very urgent effort, we deep suctioned him and he recovered slightly, but levels weren’t fabulous (89-91, he should be 95+). We had to then add on oxygen while awake, via a nasal cannula. He’s on oxygen when asleep via BiPAP so this means around the clock oxygen. 

{black and white photo of Wyatt sleeping on his stomach, with a nasal cannula and tape on his face}

After speaking to the team, we will try one more intervention in hopes that we can thin out his mucous so he moves air better. That will be a nebulizer treatment that we are hoping we can give via his BiPAP since he tolerates that mask better than a neb mask. 

We are in an uncomfortable place right now, as Wyatt is reaching the maximum level of what the regular pediatric floor can do. If he requires an increase in oxygen support, we will be sent to the pediatric ICU. Our hope is we can avoid the PICU, but we recognize that he may need increased care and we will do whatever it takes to get him healthy again. 

His team continues to reiterate that fighting one virus is hard for Wyatt on a good day. Fighting two, just two weeks after fighting one, is really hard. Double whammy of viruses (and not so great ones at that!) is tough. 

My How the Fears Change...

Yes. You read that correctly, fears. Sure, the years change and that’s inevitable. But as the years change, so have our fears. 

Four years ago, we brought our 4 lb 10 oz boy home from the hospital. Our fears were huge that day, as we were going from 24/7 observation, with medical professionals on watch and ready to intervene if need be, to home. Alone. With a heart monitor, which we both loved and hated. 

{Photo of a tiny Wyatt, in a car seat that looks ten sizes too big, with smiling parents on either side.}

The next year, we had just brought our guy home a few weeks before with a feeding tube. New fears surfaced with navigating the feeding tube world, fears about his potential sleep apnea, which was being treated with O2. So our guy has a few more medical devices. I think we might have wished that year we were just dealing with a heart monitor. Oh. We also added a hearing aid that year, too. (Thank goodness for photos, or I likely wouldn’t remember the details...) 

{Photo of Wyatt, in black and white, with a smirk on his face. His face has tiger stickers being used to hold his oxygen nasal cannula in place. He’s wearing a headband hearing aid.}

The following year, 2017, was much of a blur. That’s the year we spent a whole lot of time at the Hop. Our lives revolved around ER visits, blue spells, hospital trips, ICU stays, and specialist appointments. Oh and lots of tests. That year, we feared a trach was on the horizon. I remember New Year’s Eve of that year spending lots of time wishing for no trach and some “normalcy” in our lives. (Lori of now laughs about that thought... normalcy. Ha! Hadn’t Wyatt already proven that idea to be a farce?!)

{Photo of Wyatt, in black and white, giggling while his mom steals a kiss}

The fears last year seem to be much of a blur, as we were riding the high of Wyatt learning to sit independently. We had watched our guy grow even more, learn some new skills, spend some time in the hospital, and I think a lot of laughs along the way. That year, we remained in fear of the trach, but we also feared him starting school. Our medical team was very concerned about him being exposed to so many germs and we lived in fear of viral infections, knowing they could put us in the hospital. 

This year, the fears seem eerily different. They stem from a more developmental standpoint. The fears about his medical concerns are still very real, as his seizures haven’t been completely solved and he constantly changes the game on us, but there’s also a confidence, almost a comfort of knowing we can tackle things. 

Today as I’m typing this (maybe through tear stained eyes, I’ll never tell...), the fears are about his growing independence. As he’s climbing up the foam stairs and laughing and clapping when he reaches the couch, I fear him falling. As he pulls the dishes out of my cupboards, I fear things breaking (and having to drill child locks into my brand new cupboards!) on him. I fear as he grows more independent, he will learn his limitations. Which is heart breaking as a mom. One day he will know he’s different. And while we as parents will do whatever it takes to keep working towards full independence, what if he tires of the hard work? 

Fear is a funny beast. It’s consuming, it’s empowering. It’s real. 

Here’s to an amazing and incredible 2020. The last decade has been amazing for our family and we know the next one will be just as fantastic (with a few less hospital visits, please!). 

{video of Wyatt chatting away}

On The Eve of Your Birthday...

On the eve of your birthday, I can’t help but think how different this one feels. I think I say this every year. 

{Photo of Wyatt, smirking while laying in bed. His shirt says, “A little bit awesome” but you can only see part of it.}

As I lay here typing these words, I hear the same sounds I hear each night. The sounds of his oxygen concentrator, his crib aquarium, and the random pulse ox alarm. While these sounds bring a feeling of familiarity, comfort, and sigh of relief, I can’t help but feel a bit different tonight. 

Last year I wrote 

this about Wyatt’s birthday eve. Tonight I still have mixed emotions, but I also have even more excitement than I did last year. Even though this year has been very scary. We had more ambulance rides than I care to count, more doctors scratching their heads unsure of where to begin with treatment, but also we have had a lot of really great times too. 

Tonight we watched him climb up the stairs with minimal support, we held his hands as he took steps down the hallway, and we laughed together while he touched the pages in the book we read.

{Black and white photo of Wyatt laying on his side in his crib, his thumb on his cheek and hand in front of his face, before his biPAP mask was placed}

I am sad that I tucked in my three year old and tomorrow I’ll tuck in a four year old. But I think I am also eager to see what four brings. 

Bring on FOUR! 

Dentist, Pediatrician, Pulm, Oh My!

Wyatt has had a busy week so far. 

A 12 hour car ride with one little hiccup, a great dentist visit, a trip to the pediatrician for an infected toe (I can’t make this stuff up), and a fantastic trip to the pulmonologist. 

{photo of Wyatt in his car seat, rocking his pajamas, with his leg hanging over the side of the car seat in full on relax-mode}

The 12 hour car ride from Michigan involved a little nap that turned exciting when Wyatt’s pulse ox alarmed letting us know that he was not breathing so well. A quick pull off on the side of the PA turnpike & a fast application of bipap turned that around quickly only to wake him up and turn him into a bear. The next stop showed us that his pulse ox probe was shifted while he was playing with it and wasn’t actually reading correctly. Oops. 

The dentist visit that was riddled with anxiety for mom went smoothly thanks to a patient dentist and a cooperative kid. Phew. 

Pediatrician visit was due to the pesky pulse ox sensor that broke down his skin, causing a small infection. Nothing a round of antibiotics can’t fix, just annoying to have a leaky toe infection cause a lot of drama. 

And a trip to the pulomonologist rounded out our trifecta of appointments this week. Pulmonologist was pleased with his lungs, shocked to see him standing, and ready to remove BiPAP as an emergency intervention when he has his seizures (before they were diagnosed as seizures, this was the prescribed intervention given his history of turning blue and the original hypothesis that these were lung related). This is HUGE for us as it gives us one less piece of equipment to travel with and creates a bit more freedom. This kid is constantly plugged into medical equipment, making us look like a mobile ICU wherever we go. Sure, he still has a lot of technology to lug around but this is definitely a good thing. Don’t worry, he will still have constant monitoring with pulse ox so we will know if breathing is an issue or if he’s having a seizure. 

{photo of Wyatt, dressed in his orange for Unity Day. His shirt reads, “Choose Kind” with text and ASL finger spelling. He’s reaching into his Dino backpack to pull out all the items for fun.}

We hope your week has been as awesome as ours and you’re choosing kindness always. 

School

Wyatt started half day school this year. He attends school at a local center for students with special needs through the public school system, in an Early Childhood Intervention (ECI) classroom. When he turned three this was an option for him, but at the time it wasn’t right for us or for him. It was the height of cold and flu season and we knew that came with a lot of risks. His medical team suggested we do what we could to give him one more winter to fight, to keep his lungs strong. So we opted for continued in home services to do that. 

So when the school year was approaching, we could have either continued on those services or start him in the ECI program. We chose to start the school year so we could get him in a routine and start the year strong. 

To say we were anxious would be a gross understatement. We were sending our heart and soul to school, with near strangers. Our son with significant medical needs, who began having weird “episodes” that were medical emergencies when they occurred. The pain of saying bye to him that first day was indescribable. We were all on edge, unsure of the unknown. Would he be okay? Would he learn? Was he safe? Would he be happy?

{photo of Wyatt, in a yellow plaid shirt, grinning with the happiest eyes}

You tell me. 

{photo collage of Wyatt in school. In each picture he is smiling and clearly enjoying school}

The boy we see at home, after only a few months in school, is not the boy we sent them. He’s happy. He’s thriving. He’s safe. He’s learning. And perhaps most importantly? He’s loved. He has a lot of cards stacked against him with seizures happening with increased frequency and intensity, ambulance rides and absences, schedule changes and sleep issues. But this boy is making great progress. He’s sitting independently (briefly) in a chair at school. He’s crawling into the laps of the adults there to let them know he wants their attention. He’s walking in his gait trainer. He’s using a switch (communication device) to communicate. This boy is really killing it at school. 

{black and white photo of Wyatt with his back to the camera, standing using a bar on the glass door, one arm for balance and one arm grabbing a toy}

We couldn’t be more proud of this guy and we are so thankful he’s in a surrounded by people that celebrate his successes with us, believe in him, and love him. 

Thankful...

It’s that time of year where we reflect on all that we are thankful for. Although I like to think we do a good job of that no matter the season. 

{photo of a wooden ornament hanging from a branch. On it is written the word health.}

This year we started a thankful tree, where we hang a statement of what we are thankful for each day. Yesterday as we were talking about what we might write, both Brian and I paused a moment and agreed that health would be our chosen word (our tree is small and our space to write is smaller... I am not known for brevity, so we are attempting to limit to one word). 

I’d like to explain a bit about why we paused, because of course we are thankful for health. But in the past three plus years, there have been days we thought we wouldn’t be bringing Wyatt home from the hospital. There were times where we couldn’t go more than two weeks without ending up back in the hospital. There were times where we didn’t know what illness we were attacking. Times where we questioned, times where we cried, and times we were fearful. 

But today? We are thankful for his health. 

We don’t know what tomorrow (or even this afternoon!) will bring for his health, so today we are thankful. 

Some Milestones are Cooler Than Others...

Wyatt’s been hitting some pretty cool milestones lately and its been quite enjoyable watching him continue to develop. Some really cool things he’s started doing:

• Attempting to stand on all the things
• Pulling anything that’s near him 
• Crawling on all fours for short distances
• Cruising in the crib
• Using consonant sounds and making vocalizations to get our attention 
• Assisting with dressing and undressing himself

Some things he’s started doing that aren’t quite as cool (not because he’s making progress but because it puts quite a wrinkle in things)

• Attempting to stand on things that tip
• Pulling anything that’s near him that we need or can break. Ex: my slice of pizza- pulled it right out of my hand, licked it, and threw it to the ground
• Using those consonant sounds and vocalizations at really loud volumes in the middle of the night (or any other inopportune time)
• Undressing himself without our permission. He can’t wait to get into bed and take off his pajama pants. He’s recently explored taking off his shirt as well. And may have figured out how to unlatch his diaper. While it was filled with poop. I’ll let you guess how that ended. (Poorly)

I say each of these in jest and with a smile on my face. We continue to be proud of this little man we created, even if his milestones mean more work for us and a lot more quick thinking (and a little baby proofing). 

Wyatt was in a wedding this weekend and when the bride asked him to be in the wedding back in February, I was fairly anxious about what it might look like for him to be a ring bearer. How would he get down the aisle? What if he acted like a toddler? How disappointed would the bride be if he needed to be pushed in a stroller?

Wouldn’t you know, he had different plans. He rode comfortably (and I’m being told adorably) in a wagon down the aisle with a smile. He also stood with some support with the other ring bearers for photos, and stood and danced with me. I don’t have many photos of the wedding, but will share once the official shots come back. 

I’ll leave you with this...

{blurry zoomed in photo of Wyatt, in a little tuxedo, standing with his mom on the dance floor. Wyatt is holding her hands and dancing. You can’t see it, but both of them are beaming. You also can’t see his dad behind the camera who is beaming as well.}

Oh. And this. 

{Photo of Wyatt, dressed in his pajamas, standing in his crib. He is leaning over the side with a grin on his face.}

Never Boring

Well, our boy has done it again. Stumped an entire team of doctors and left many really smart people scratching their heads. 

{photo of Wyatt, laughing at the camera with a devilish grin}

On Saturday, Wyatt started with a few dots on his body. Nothing alarming, but enough to grab our attention. Sunday he had a seizure, again not alarming but attention grabbing for sure, especially since we had started him on a medication to reduce seizures and he had been almost a week seizure free. The dots turned to full on rash. 

For some super odd reason, rashes get us a bit panicky around here. Which is extremely ridiculous since our “normal” is seizures, not breathing, 911 calls, catheters, etc. Some scary stuff. And we tackle it as it comes. But throw a rash our way and we are unsure what to do. 

Sunday evening we ended up in the ER, since we realized there was a chance the rash was from the new medication, which has a rare but potentially deadly rash as a side effect, causing Stevens-Johnson Syndrome. ER was stumped, but we were sent home. 

Fast forward to Monday, rash had doubled since the night before and he had some desats in the night. We ended up at the pediatricians office (also scratching her head) with the fear that it could be related to the meds but also could be a viral rash. In typical Wyatt fashion, he was presenting with hallmark signs of both types of rashes and nothing super typical for either rash. (Typical isn’t in our vocabulary!) After a consult with neuro at Hopkins, it was determined we would monitor at home and remove the offending medication.  Thank god for pulse ox! What a relief to be able to know his oxygen saturations and heart rate at all times. Both of those would be indicators that things were going south and the rash was evolving requiring emergency attention. 

{photo of Wyatt in his stroller, wearing one sock, a diaper, and giggling. His body is covered in a red rash}

Today he has looked better, rash appears to not have progressed, and we will sleep a bit easier tonight. We certainly aren’t out of the woods, but we are now 24 hours with no meds and the rash hasn’t evolved. Hoping this is a good sign!

As one of my friends put it, we can never accuse Wyatt of being boring! 

California Coast

Our boy has been rooting for his dad this week. His dad is currently somewhere between San Francisco and Los Angeles (although today he rides into Los Angeles, so I’m guessing closer to LA than San Fran), raising money and awareness for The Arthritis Foundation. 

{Photo of Wyatt smiling, while wearing a shirt with a silhouette of California, with two hearts connected by a dotted line}

Brian is riding his bike 500 miles along the coast of California, camping each night, and pedaling over VERY large “hills”. He’s doing this to raise money for The Arthritis Foundation, to support programs and research for those battling arthritis. This foundation is near and dear to our hearts, as our beloved Addie is a child fighting Arthritis. (Yes! Kids get arthritis too!) 

{photo collage of Wyatt, rocking his California shirt. The pictures are outtakes, including one very blurry photo of him trying to crawl toward the camera and one making a silly face}

If you’d like to learn more about Brian’s fundraising efforts, or to donate, click 

here!