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Friday

11 Dec Friday

Posted at 02:57h in Uncategorized by
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Not a lot of new information to report today.  We are still working on advancing Keegan’s tube feeds.  By tomorrow morning, he should be to full volume (amount of formula per day), and then we will have to start increasing the concentration.  By Monday afternoon, we should hit 80% of caloric needs from tube feeds and be able to stop the TPN.  All of this is, of course, depending on Keegan handling these changes well.  We are not sure what to make of things at the moment because things are already not going the way we have seen in the past.  It used to be that as we made changes to the tube feeds, he might have more diarrhea or start throwing up.  Keegan is now dealing with some kind of “functional constipation”, meaning he’s not stooling enough or as frequently as he has in the past.  But it is still the mucousy diarrhea when he does go.  Considering the type of formula he is on, what it looks like when he does, and the fact that we are giving him stool softeners twice a day, he should have no problem going whatsoever!  All this is to say, we aren’t exactly sure what we are dealing with here.  It has raised a few eyebrows because any sudden departure from what Keegan usually does is unusual.  Additionally, he’s been losing weight consistently, despite not having any true output.  He is now about half a pound under the last “healthy” weight we had on him.  We will just have to continue to wait and watch him over the weekend.

He had his cardiac work-up today, and his heart is looking great still.  We have stopped running daily labs since he is already so anemic.  Continuing to take more blood each day just compounds the problem.  We were able to get him out of the room this afternoon and get some fresh air.  It was great to see him start to walk a little more.  He would stop to ask me to “pick up” every now and then, but if I pressed him to keep going, he usually would.  We are hoping for continuing improvements in his energy levels over the weekend.

Playing with his dancing Frosty the Snowman before his echo

Enjoying some time with Aunt Alex before bed

Lainey, Ainsley, & Gage stopped by the Children’s Legacy campus up by our house today.
They found the wreath we decorated for the hospital and sent us this adorable picture.
Hi, Gage!
In other news, the picture of Keegan and Tony Romo from Monday was featured on the official Dallas Cowboys Facebook page today.  It has over 3,000 “likes” and over 400 comments already!  We were also told that they may include the picture in the game program against the Redskins on December 19 and possibly in the next edition of the team magazine.  You can see the Facebook photo and comments HERE.  We are so grateful to all the Cowboys players that took time after a long game the night before to come spend time with so many special children here at Children’s Medical Center.  It was such a treat for the patients and families, and a memory that will last a lifetime.
I mentioned yesterday that I have some thoughts swirlling around that I feel like I need to get out in writing.  I’m just not sure I’m ready to sort them out yet.  I will say that this latest challenge that Keegan has faced changes so much of our picture.  That’s a big part of what I’m struggling with right now.  I am so beyond happy with the progress he has made and how well Audrey and our families have handled this.  I’m very much caught up right now in living day to day and being grateful for the improvements that have been made.  But I know that I will have to think about the future soon, and I’m not sure I’m ready for that.  If there’s one thing I know, it’s that so many people are praying for Keegan and also for our family.  Because of that, I know we will never be alone, no matter what happens, and I can afford to live in the moment a little bit longer.  Thank you once again for your prayers.  I’m not sure where we would be without them.