9/27 Update for the little guy!

Good evening!

Today was a wonderful day! This morning we met with his doctors and they were so happy with how he did all night on his new wedge and said that they thought that we could try just room air and get off the high flow without weening the last step to 4L. With him off high flow we were able to try bottle feeds as well.

He got the high flow off this morning and was doing great they came and checked on him a couple hours later and said his lungs sounded like there was stuff still trying to break up in there but he is moving air amazingly! They then said if he looks great at 5pm that if he was still tolerating the room air we will make the decision.

So we waited.. the clock was going so slow, we tried a bottle feed and was not a fan that’s okay. We will ween him back into bottle feeds this week. He did sleep a lot today as well which he doesn’t nap much during the day, when he napped for three hours we were shocked!

He is still doing great with his pump feeds, the residents came in to do there assessment at 4:30 and said he looked great they said he looks good and if we were comfortable with him going home they will discharge us. We both looked at each other and said yeah we are good to go home tonight rather than the morning. They said of course they will start the process to get us out of there! We were so stocked and happy that he is doing so much better that everyone was comfortable with this decision. Took about a half an hour and they said we are free to go with a stop at the pharmacy with new meds for preventative measures if this happens again. He won’t take these meds all the time but have more things in our arsenal!

I want to thank Seattle Children’s for everything they’ve done for our family. They are truly amazing and everyone there wants the best for your child. I can’t thank them enough. I want to thank all of you for your text, kind words, thoughts, prayers, and making sure we are good and the dogs are good! It truly does take a village to raise a child and I couldn’t imagine what it would be like without all the help and support that we have. Thank you everyone! We are home and unpacked and settling down. The dogs were so excited that we are home now. We are sitting here in the living room as a family watching some mariners and being a family at home.

Love you all,

Walker, Brandi, Tyler

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