Owen Airway Looks Good!

We got very good news about Owen's airway today. It looks like it has minimal swelling and no scarring which is the best news. It's possible he has weakened throat muscles from not having to use them for so long, but mostly the only treatment they think he needs is more growth and time. So we'll see.

We're a little confused now about our stay at Kosair. Now that he doesn't need any type of surgery, we're not sure if they want us to stay there or not. Yesterday they were saying that he would stay at Kosair until he went home, and today we were asked several times about our plans to stay or go back to University. We would prefer not to move him again, but hopefully that will resolve itself in the next few days. So many things to think about!!! At least little Owen doesn't need a tracheostomy or something crazy like that. A little payer answered.

Owen Copies his Parents and Decides to Move

Owen pulled his ventilator tube twice yesterday. The second time was in the middle of the night and it was difficult to get the same size tube back in his throat. Dr. Robinson at U of L was concerned this morning that his throat was still so swollen despite his steroid treatments. She called us both after morning rounds and suggested that we authorize a transfer to Kosair Children's Hospital to get a Bronchoscopy performed to see exactly what is causing his airway troubles.

Owen was whisked away to Kosair around noon today and he is resting comfortably in the enormous NICU there. It's the seventh largest in the country apparently and is so different than what we had at University. It's a big change for all of us and we're nervous and anxious to know what the outcome of these throat images will be. The procedure should happen around 3:30 tomorrow afternoon. We will be able to be with him the whole time. We'll try to post tomorrow to fill everyone in. We hope it's something on the more easily treatable end of the spectrum.

Kosair will more than likely be Owen's last stop before coming home. We have to say goodbye to all the NICU mom's at U of L Hospital tomorrow. There were some wonderful, caring ladies over there that we really grew to love, and you could tell they loved Owen too. It's pretty sad to leave them, but we know it's best for Owen to find out what's causing his airway problems. Another big day in the Owen saga. Say a little prayer for our little man!

Owen's First Bath!!

Now He's Comfortable

Owen - All Clean and Adorable





Last night we got some good news. The test showed that Owen has some immunity to chicken pox. He's not completely in the clear, but it looks a lot better, and he doesn't have to be in isolation anymore.
He got his first real bath in a little tub during our visit last night. We got to help! He seemed to like it and he was very relaxed afterward. --We took pictures. I'll add them soon.
He weighs 1724 grams. That's 3 lbs and 13 oz.
This will be the fourth day of his steroid course. Wednesday will be the last day, and when they try him off the ventilator again. He's still low on his settings. Hopefully that will be the day!

Thursday Owen started the steroid that he can safely be on for a longer period of time. He also had his eyes tested again, and they are more improved!! This morning they shared that he was having a more difficult day. The steroids seem to be making him more irritable and restless. He turned his head today and managed to get his tube out again. They were able to put back in the larger size tube, which helps him breathe better, and also means the steroid is working. His airways aren't as swollen. They weren't able to put that size in when they reintubated him this last time because his airways were so swollen. They've upped his feedings again. He's at 30ml now. He's maintaining weight despite the diuretic. Tonight we got a call from the nurse manager. One of the nurses who regularly works with Owen has shingles. The entire section of the NICU that she worked in is at risk, but Owen is more so, because she often works directly with him, and because she did so when he was off the ventilator. That made him more open and susceptible. The nurse manager asked me if I had chicken pox. She shared that since I have, he is a little less susceptible. He's now in isolation. When we visit we have to wear rubber gloves, face masks, and covering for our clothes. If he has the virus it will be in incubation until Sunday. They're running tests, but the accuracy of them is weak at this point because the steroids mask it. So we have to kind of wait and see. They say this has happened a few other times in the last ten years or so, and the babies have not been infected. Please pray for Owen. He's pretty compromised. Chicken pox would not be an easy journey for him.

We're still on the roller coaster....

Owen is back on the ventilator. He did well without it for about 16 hours, but had a drop in his breathing abilities and they put him back on. Yesterday was a rough day. It was hard to put the tube back in with the swelling in his airways. His lungs look good and seem to be functioning well. Its his airways that continue to make it difficult for him to breath. He's back on steroids to help with the immediate anti-inflammatory efforts. They brought in a pediatric pulmonologist, and are looking at a longer acting steroid that's safe for him to stay on until the next extubation. The hope is to give it another week and then try it again after the swelling in his airways has decreased.
He weighs 3 lbs and almost 12 oz. He's still growing. His blood counts are good today. He's been resting well.

A short clip

Owen was discovering the benefits of moving his lips without a big tube in the way. He was busy blowing bubbles with his slobber. It was so cute!