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.