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.