Week 6 begins

Kale's nurse last night, Amanda, made him a cute little poster to celebrate his first outfit :)

Bigggg yawn

Hanging out with dad

No time for naps...wide awake!

Another steady day today for Kale, which is a nice start to week 6! His blood gases have been pretty steady over the past 48 hours, so they did one this morning and aren't doing another gas until tomorrow morning! That's the longest he's gone without having one, so we're really hoping it looks about the same or even better. His lung x-ray looked about the same today. The Dr. said that her plan is to either begin weening him off steroids or change the mode his vent has been on by Friday. The current setting of the vent gives him 55 breaths per minute, and Kale has the ability to initiate a breath and then the vent will kick in and help him complete the breath. He has been on this mode for 6 days now and they don't want to leave him on that much longer because it's meant for a short period of time. If he stays on it too long his diaphragm and lungs will get used to just starting a breath and not having to work to finish it. So, they are planning on doing either of those things Friday. We really hope he adapts to the change otherwise he may have to go back on the high frequency vent. We have faith that he'll be up for the challenge! He has been doing better and better maintaining his blood gases in all positions now. In the past if he was positioned on his back or side he didn't respond very well, but the past few days he's done great in all positions.

Derc got to end his work day today by coming to the hospital and holding Kale for about 45 minutes. Kale did great while he held him. He was really alert and kept trying to move his head to look up at Derc...which doesn't work so well when his head is stuck one way because of the vent tubing. We called in tonight and his nurse, Jodi, said that he has been a wild man since the time we left tonight. He has been pretty alert lately.

He is up to 2 lbs. 8 oz. again today. Maybe he'll break through and hit 2.9 tomorrow! As you can see, he looks pretty darn cute in clothes :) Jodi got a few pictures today of Kale WITHOUT the tape on his mouth!! She was changing the tape across his lip and snapped a picture for us since I haven't ever seen his full face, he's always had a tape mustache. We don't want to brag, but he's pretty dang cute :) His cheeks are kind of chubby, which you can't really tell when the tape is on since it sucks his cheeks together. She's going to email me the pictures so I'll post those when I get them so you can see his face.....only took 42 days!

Well, that's about it for us - getting my flat tire repaired (hopefully repaired and not replaced) tomorrow. We woke up this morning to a flat tire in the garage...how does that happen?! Derc woke me up and I had to take him to work.....I was a hot mess walking into the Kum & Go in my sweatpants, 10 year old t-shirt (complete with a hole in the armpit, no worries), bedhead and no makeup. I was seriously praying I didn't see anyone I knew. Derc asked me to drop him off far from his work entrance, haha! G'night!