Day 2

Today (May 23), Russell had a repeat echo.  Not much has changed since the first one 11 days ago. Dr. Kraybill mentioned a hole in the upper part of the heart that I don't think was mentioned to us originally.  She said it would take at least four doses of digoxin (the new med started last night) before we saw much improvement.  Dose four will be tomorrow morning.

They also took some blood today.  Mainly to test thyroid levels since that is a common problem in people with Down Syndrome.  Plus, both Matt and I have thyroid issues so it is good to check.

Russell is on a lower dose of oxygen.  They are hoping to wean him off since that is one of the conditions to go home - off oxygen plus weight gain.  Sounds like we could possibly take him home with oxygen for the nighttime if needed.

Best case scenario, we go home Monday.

On the religion side, a couple of people asked if we had a religious background, we told them Catholic and suddenly a priest appeared to give a blessing.  I really appreciated it, especially since they also have a chaplain who we met earlier as well. I emailed our parish to find out about baptism and if we needed to expedite it to make sure he is baptized prior to surgery.  They called within a hour to say Father Cleaveland could come tonight or be available after Masses on Sunday.  I explained we didn't need it right away but wanted to know options.  Father then called and said that we would get the baptism done and worry about the details later. I thought that was great of him to personally call and reassure me that Russell would get baptized one way or another prior to surgery.

Tonight Russell is actually awake. That doesn't happen often.  I would post more pictures but it breaks my heart to see him with the oxygen tubes in his nose - I don't really want a picture of it. Yes, I know, it's great for him but I still don't like seeing it.

A special thanks to both sets of Grandparents who are taking great care of Travis so we don't need to worry about him (besides the usual Mother instincts to worry about her child).  Travis visited today, along with both sets of Grandparents, and gave Russell lots of kisses. We are so fortunate that (as my father-in-law, Chip, point out) Russell can have all four grandparents and both parents in one room.  Then we add Travis to that and all of you, Russell is one loved boy.