Walker Kelly John Bush Journey to life

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...

Good evening! Heres our update on our little guy! He woke up again all smiles. Very talkative, really wanted to talk to everyone not sure who he got that from must be Brandi. We had more rounds and here is what the doctors wanted to do with him today. -Bring his high flow down to 6L, continue with the steroid drops Talk with ent to see how long we should stay on the steroid drops Have endocrinology do a consult to make sure he is okay to stay on the steroid drops while he is sick, surgery, any injuries get back to bolus feeds in the afternoon One concerning thing was he hasn’t had a bowel movement since Monday so help him with that. Right after rounds we dropped down to 6L and he hasn’t been killing that all day. Our original plan was to maybe drop to 4L this evening but with the bolus(scheduled) feeds and not having a bowel movement we all decided that we will just drop to 4L in the morning. The little guy did need some help to have his bowel movement but we got that today and he seem...

Good evening everyone! Walker had a very good day! Woke up and was doing so much better he was awake attentive, giggling and smiling. The nurse we had yesterday was his nurse again today and said that he looks like a whole new kid. We met with the doctors for morning rounds and they were happy with how he looked as well. The plan that they came up with for the day; -Get back to regular oxygen level of 21% -See how he does there and start weening him down on the flow. -Start feeds very slow and start getting him off the iv. -Monitor him, do the steroid drops and let him heal. -Consult ent on how long to stay on the steroids and see if they want to come look at him and come up with a longer term plan. Walker was so much more energetic, he wanted to sit up and look around. We raised his bed up more under his head and he loved it. Brandi did get a lot snuggles with him today and he loved it. He is getting smart and rubbing his head against Brandi to try and get the cannula out of his nose,...

Good afternoon everyone, I am posting today because our little guy got his first cold and he isn’t doing so well with it. He started getting sick on Wednesday last week with nasal congestion, and a dry cough. Luckily we already have a lot of things at home that we need for this and we have been talking with his doctors everyday. On Saturday we took him in to urgent care due to the increase of mucus coming out of his nose and mouth. We had a deep suction done on both nostrils and nasal passages which is very tough to do with his very small nasal passages. Sunday he was still sick but was looking better. We were also suction at home from his nostrils. Monday was the same situation with a little bit more of a cough. Tuesday he went to his wellness check and the doctors said that he was looking really good. At about 3pm that same day he started getting very sleepy and fussy. We thought it was his gasses as it matches up as his regular routine. I came home from work and he was still very sl...

Hello everyone! We have been enjoying our little guy and being a family! Thought I could get on here today to go over some of the fun things we have been doing in the past month and also give you an update on the medical side of things for our little warrior. We have a big cranial facial appointment today with his doctors and a couple of the surgeons to go over a surgery schedule for our little guy. This morning he weighed in at 15 lbs. 12oz. Measuring in at 25 inches! He is part of the 2 foot club now! Walker has done a bunch of first this month! He went to fair, saw his first car races, helped his father stain the deck, meet more people, go to the Everett marina and look at boats, celebrate friends and family birthday parties, go to and finally go on his first camping trip! He also watched his first Seahawks game! Walkers daily routine now is waking up his parents around 5 am wanting to snuggle with them, we bring him into our bed and snuggle with him till about 9 am. With me I get t...