19 Jan Update
Keegan’s hanging in there. We stopped his feeds in the middle of the night on Saturday because he continued to throw up. That stopped when we stopped his feeds. We’ll try again today, and we’ll only increase just 1 to 2ml every 12 hours. Not much else has changed. He continues to have the same amount of mucousy diarrhea both on and off the feeds. He will finish his antibiotics on Wednesday, and we’ll draw another culture to be sure the infection is gone. This morning, his white counts and ANC had just come up into the normal range after an entire week on the upper limits of GCSF doses. We’ll probably stop the GCSF tomorrow or Wednesday because transplant will object to his white count being too high. This afternoon, we’ll draw the blood for the immunology tests, and we’re anticipating needing blood tonight. His red counts are too low today to accomodate that amount of blood. The first round of immunology tests should be back by the end of the week, and they will tell us where to go from here.
In other fun news, the entire rest of our family is sick. Gray started feeling bad on Saturday, and by Sunday, he needed IV fluids at the urgent care doctor. He is still running a fever and has a stomach bug of some type. It seems he’s passed it on to the rest of us too. Both my parents are sick, and I’m not feeling too hot. I’ve been able to keep the worst of it away luckily. It feels like we’re back in the days just after transplant, spending the entire day in gloves and a mask. We think Keegan must have had a bug on top of everything else because his defenses were too low to not have picked up what we have. More than likely, it was something picked up here. In a kid with constant diarrhea and vomitting, it’s hard to tell if there’s a difference. You can’t exactly ask him!
I actually have some specific prayer requests for you today. Thank you so much for caring about our family.
1. Please keep us all in your prayers, that this illness passes quickly and that it doesn’t affect Keegan any more than it already has.
2. Please also pray that Keegan will tolerate his feeds this time. We need him to use his stomach if at all possible. We want him to be able to eat normally when we can get him through this.
3. Please pray, yet again, that this next round of testing provides an answer for Keegan. The immunologist today said that they don’t have a particular dysfunction/disregulation in mind at this point, but they think the evidence is there that Keegan’s immune system is not functioning properly. We know our Lord holds all these answers and Keegan close to His heart. Please pray for wisdom and guidance towards these answers for Keegan’s doctors.
4. Lastly, another little girl is getting her miracle today. Please pray for 7-year-old Emily who went into the ER for her new heart at 7am this morning. She has been waiting since April for this miracle. Pray for improved health and a smooth recovery for little Emily and for strength for her family through this process.
We’ll update again tomorrow. Thanks so much.
Maddie
This quote was in the Jesuit Prayer Network’s recent email for Keegan, and I think it fits perfectly. Thanks, Karen.
“This is my hope, my one comfort, that in all my troubles I can turn to you, trust you, call upon you from the depths of my being, and in patience wait for you to comfort me.” Thomas A Kempis