26 Feb More Waiting..Or Enough is Enough!!
We had one good day at home on Tuesday. Yesterday, Keegan didn’t look right (swollen, red), and he seemed pretty lethargic and uncomfortable. He didn’t tolerate his second feed of the day at all. Around 1am, he hit a pain episode hard and started throwing up again. His temp climbed to about 102, and he couldn’t stop vomiting, even though he didn’t have anything left in his stomach. We drove across the street to the Legacy ER around 3:45am, and his heartrate was almost 220!! Talk about scary. Of course, we’ve been in the ER waiting for a room to open downtown since then. At least it’s this nice new ER, and not the nasty one downtown. It’s almost noon on Thursday, and the nurse just popped her head in to say the ambulance is finally here.
We’ll update again later when we have more information. This is getting absolutely ridiculous though. We are drawing the “line in the sand”. If the docs can’t figure this out here, we WILL be transferred to another hospital that can help him.
UPDATE 6:40pm – Keegan is on the cardiac floor and back on heart monitors. His fever broke this morning without too much trouble, and his heartrate is better, though still high. So far, we have not heard of a positive culture or results from his abdominal xray. He is scheduled for an abdominal CT scan. The plan per our primary transplant team and the GI department chief is to address any acute issues that caused Keegan so much pain last night. Then, we will be seeking an immediate transfer to a larger hopsital for a second opinion. Options being explored tomorrow by the team are Cinncinnati, Boston, Philadelphia, and Columbus (evidently one of the best motility experts in the country is there). We greatly appreciate your continued prayers for Keegan, specifically for a better night with restful sleep, lessened pain for Keegan, and guidance and wisdom in seeking this referral. Thank you!