2/23 - A night at home!

Leo is doing well. He is alternating every 2 hours on/off CPAP trials. He did spike another fever and his lung secretions tested positive for bacteria again so he is on antibiotics again. He is off all pain meds except as needed Tylenol and ativan. He had two doses of ativan in the last 24hrs when he was just fussy, wiggly and making scrunchie face. He normally cries at home so I feel bad giving him drugs if he is just fussy, but since we can't hold him, I feel like we need to do all we can. Tomorrow is his first Trach change and we should be able to hold him after that :). 

Originally Terry was going to stay yesterday, but he came home at 2:00 and uncle Dave stayed with Leo until 9:00. Then Leo stayed by himself at the hospital until I came up this morning. This was only his 2nd night alone in about 10wks in the hospital. Overall the care we receive is great, but it is still hard to leave my little baby. Sometimes mistakes are made. One time a seemingly great nurse forgot Leo has a g-tube and inserted a syringe of Tylenol in his mouth. Luckily I caught her before she gave it and he choked. Thursday when I got here I noticed Leo's eye was dry and asked when his last artificial tears were given. The nurse looked at me confused. When he was on the paralytic for a day after surgery, he was given the tears in both eyes. When he came off the paralytic the tears were automatically deleted, but no one added back the prescription for his left eye. He went 2 days without the medicine. Luckily he was closing his eye more than normal and no damage was done, but things like that scare me!!!  Anyway we took the risk and it was super good to have Terry, Sammie and I under one roof for a night. It gave Ter and I some time to talk about the future and how we will make life happen with Leo's trach and home nurses :(. 

Instead of working around the house like I should have been doing on Saturday...I decided Sammie and I should have fun. She got her 2nd ever professional hair cut (only the back half) and then we went to the Children's Museum. She loves that place!

Leo is looking more and more like himself instead of the sad puffy baby, but he is losing hair at an alarming rate :(.

Sammie is going through a phase where when she sees a camera she makes an awkward "cheese" face. I end up with pictures like this below instead of her cute natural self: