2/12 - coming to terms

We have gotten so much bad news in the past 3 months that I now know our grieving cycle. The first day is just awful and it is best just to be sad and let the emotions out. Then sleep on it and get away for awhile. The next day it's time to come to terms with a new reality. That is about where I am now. Leo is most likely getting a Trach on Monday and we need to learn as much as we can.

Yesterday after the bronc exam his docs discussed their recommendations with us, but it was just too overwhelming. They said they would meet with us again before Monday. The Pulmenologist is going to meet with us Friday after 5:00 with his nurse and someone from the home medical program. Terry and I have been working on a list of questions. We feel lucky he is scheduling a time we can both be there and Terry doesn't have to miss work. 

Today the results came back from labs they ran after Leo spiked a fever Monday. They showed a new bacteria and the Resident thought the bacteria was infectious so she put us in isolation. That means anyone who enters the room must have a gown, gloves and face mask. Poor Terry did that all day and I joined in the fun for a few hours. Our nurse double checked with Infectious Disease and found out this bacteria is not infectious and does not require isolation. Small win for us! I have eczema pretty bad and I could already feel my skin crawling from the gloves after a few hours. Our understanding is that the two bacterias found in Leo's lungs can be common in an everyday person's mouth, but can cause illness in an infants lungs.  On top of the two bacterias, the surgeon and pulmonologist still seemed pretty convinced he had a virus that was just not detected on the swab.

 

They have weaned his vent settings back down to the minimum and he will continue to do CPAP trials where they turn off the vent and simulate a nasal cannula setting every 6 hours.  They weaned his fentanyl pain killer down to .4 from its original 1. He is more awake and making his "scrunchie" face every now and then.  We don't want to see him in pain, but yesterday he seemed too out of it to breath to his full potential.

 

Also kind of exciting, Leo is starting a 1/2 breast milk/1/2 formula combo today.  This was originally scheduled for 2 weeks from now, but they figured while he is getting regular chest x-rays for his other issues, they should take advantage and try the breast milk.  Pray for good results! He does not need another round of chylothorax and a chest tube and his immune system could use the breast milk.

 

Thanks so much for everyone praying for our little guy. Today he is shutting his left eye really well! He really seems calmed by his seahorse and likes the glowing light.