And so it Remains, He’s One in a Million

We constantly joke Wyatt is quite literally one in a million (one diagnosis proves he’s one in 100,000 and his combo of diagnoses make him closer to one in a million) and we have had numerous specialists admit he stumps them. Today was no different. 

Today’s adventure had us back up with our favorite team, Pulmonology. Wyatt had a follow up in office and it happened that his sleep study results were also available. I was prepared for some disappointment, as Wyatt only slept for four hours during the study and I knew they were waiting for REM to begin changing his vent settings. He barely hit REM and it was not sufficient time to attempt weaning. 

{Photo of Wyatt, tucked in for his sleep study. He’s wearing bandages around his head to cover the electrodes and his giraffe pattern BiPAP mask is over it.}

His CO2 levels during the study were steady and great. This was very encouraging news, as his CO2 levels have typically been somewhat elevated. This tells us the current interventions are working. In his short sleep, he had minimal number of apnea events and none of them were central apnea events. This is great news! 

The study did reveal some unusual levels for his oxygen saturation levels that were much different from previous sat levels and Pulm feels this may be indicative of some other things going on, not related to his breathing. The sat levels were low and not related to apnea or shallow breathing, which is common in sleep apnea. And we know the BiPAP is doing its job, so the unexplained low sats mean we need to do some investigating. There’s a chance it’s cardiac, neurological or lung related. But his lungs look and sound great, so it’s likely not lungs. 

We follow up with neuro next month and will bump up our cardiology visit to get an echo done sooner than planned. For now, we know he is monitored closely while sleeping and we have next steps. Once again, a top doc reminded us that our toddler son is outsmarting a team of docs. 

He’s lucky he’s cute. 

{Photo of Wyatt’s mom snuggling a pajama clad Wyatt, who has his hands around her neck. She has a smirk on her face, as if to confirm Wyatt is lucky he is cute}

April and Lots to Share

Wow. It’s April already?! Time sure has flown this year. The great news is we have remained relatively healthy so far this year and have really cut down on our unexpected visits to our friends at Hopkins. We still hang out for planned visits, of course. 

The biggest news we have is our guy is doing some amazing things. He’s attempting to stand and WALK. I maintain, not bad for a kid who has had some doubters along the way. 

Here’s a video of Wyatt taking steps with his PT intern, Mya. 

Tomorrow is a big night for us, as he has a follow up sleep study planned. The sleep study is to determine if his current settings are appropriate and to see if O2 continues to be required while he sleeps. During his last hospital stay, we had great difficulty weaning him from the oxygen and we left the hospital with a small amount bled in while sleeping (that’s a fancy medical term which essential means he was getting oxygen through his BiPAP). During our attempted weans, he struggled to maintain his oxygen saturations. So after meeting with his pulmonology team, we determined we wouldn’t mess with weaning and instead let him remain on the 1/2 L of O2. 

As always, we hope for a good outcome tomorrow night. A good outcome means we are sent home and not to the hospital and that Wyatt continues to show us what he needs while sleeping. The best outcome would be a decrease in his settings, but we remain that safety while he sleeps will always be our priority, so if his settings need adjusting, we hope it isn’t to a level that may require an alternate intervention. 

{Photo of Wyatt, wearing a blue jacket and inquisitive look while swinging in his new swing at home}

Wyatt has had some adventures to the park, to an indoor water park, and we added in feeding therapy to his schedule. Our hope is an increased focus on oral feeds will allow for some flexibility with his feeding. Currently, he is attached to his feeding pump 20 hours a day. As he becomes more mobile, we are facing the challenge of keeping the pump and backpack going along with him. Sometimes you can find an adult (or kid) jumping or running over to him to untangle him or push the pump toward him. The fear being, if he gets to the end of the tubing, he could pull out his feeding tube. Because he is GJ fed, it is not as simple as replacing it at home (or on the go), it requires sedation and Interventional Radiology replacement. So any additional time we can have him off feeds, will certainly help. 

{Photo is a black and white photo zoomed in on Wyatt’s face. He’s sleeping peacefully with his hand resting on his moms chest and his mouth wide open. Some people have reported this is exactly how his mom sleeps. She will neither confirm nor deny.}

We welcome your prayers and positive thoughts for a smooth sleep study, continued progress with oral feeds and with motor development! As always, thank you for joining us on our journey with Wyatt.