21 Jan Update
Just a short post today. We have some of the immunology labs back, and they’re not exactly what we were hoping to see. There are a few other labs GI has run also that came back with questionable results. We have scheduled a care conference with his docs (GI, cardiac transplant, immunology, hem/onc) and his surgeons (general and cardiac) for tomorrow afternoon at 1:30pm. We will discuss all of these labs, talk out some of the theories, and schedule Keegan for some sedated procedures for next week. I’m sorry I can’t be more clear than that, but (1) I don’t have a clear enough understanding of what’s going on yet; (2) we don’t know what it all means (or doesn’t mean) until we get all the “heads” together, and (3) I’m not really in a place yet that I can share all of this. Please keep Keegan, his doctors, and our family in your prayers as we face try to understand the clues that God is giving us for Keegan’s care. I promise we will let you know when we know something and are ready to put it out there. We just need your faith and prayers now as we continue on in this journey.
Keegan is about the same. He soldiers on day by day. You can tell he is tired, even when he is playing his best. He’s quite pale and puffy and seems to be looking more “sick” than before. Maybe I’m the only one that sees it, but I guess a mother knows. Perhaps he’s just starting to show how tired he is of this battle. Our 3rd attempt at starting his feeds back up ended in several bouts of throwing up throughout the night and morning. We let him rest for a few hours, but we’re trying again. This time at 5ml/hr and only increasing by 2ml every 24 hours. We may try a new drug that will help Keegan’s stomach empty because it seems that instead of backing up into his relief bag, he now is throwing up when his stomach stops processing. Wait and see.
Like Keegan, we are becoming tired in our journey, both in body and faith. We know without doubt that our Lord knows the secrets Keegan’s body holds, and we have faith He will lead us in the right direction to provide comfort, peace, and a better quality of life for Keegan. Thank you for walking this journey with us. What more can we say. Thank you.
Maddie
p.s. The rest of the family is starting to feel better. Thank you for your prayers for us too.
p.p.s. Posted a little video of Keegan enjoying his ride-on during his TPN “down-time”. So much fun not being connected to an IV pole!