Riley still isn't interested in eating or drinking. I will get some PediaSure (based on Dave's recommendation), although if he won't drink chocolate milk, not sure he'll like that much either. But we'll give anything a try.
I spoke with the fellow from UCSF again this morning, and she wants him to go in for an appointment to make sure that he's not dehydrated. So, Riley has an appointment at 1:20 this afternoon. He keeps saying, "I'm not feeling very good." The fellow also recommended us getting a different flavor Tylenol (he has cherry), and he's been fighting us. I finally tried it and it has a *horrible* aftertaste.
Sunday, March 05, 2006
Concerned about dehydration, heading to doctor
Posted by Mother in Chief at 3/05/2006 10:01:00 AM
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It pains us to hear that he is in so much discomfort. We are all praying for him and hope that he feels better. Caitlin has been saying a special prayer every night for her "Christmas train buddy". :-)
I think the trip to the doctor is a good idea. Maybe the doctor can re-hydrate him intravenously and that will make him feel better. In my experience, mild dehydration can really make you feel crummy... a little hydration boost may do him wonders.
Anyway, I hope things go well and thanks as always for the updates.
so by the time you read this, you'll be at the appointment..i'm a work and i bounced the scenario off our PICU fellow (and a friend of mine) he felt that given the current scenario "feeling bad" may just be as a result of coiling off of the collateral circulation that Riley's body adapted to the low Oxygen levels. He agrees he should be brought in and just checked out. Given his asplenic history they may send off some cultures of blood to make sure there is no viral or infectious process developing.(is he on Antibiotics prophylacticaly?) Slightly elevated Temps are normal reaction of the body post-catheterization and coil placement. They will want Riley at 100% health for the Fontan. So we'll see what happens.This may be just a passing reaction to the Cath./coil
Our thought are with you guys.
So by the time you guys read this, you'll have been at the appointment. I'm at work today and I bounced the scenario off our PICU fellow (a friend of mine) and he felt that Riley not "feeling well" and slight temp could be a normal reaction to the Catheterization and coiling off of the collateral circulation that Riley's body created due to his usual low oxygen saturation. Now they're coiled off, that may be what he is experiencing. The temp is the bodys natural reaction to the catheaterization and coils. However given Riley's asplenia, he thought it was good to bring him in and just check him out. They may send off some blood labs (ouch) to make sure no infectious process is developing. (sitting in a waiting room in the hospital is wonderful for this concern...)Anyway, depending on a variety of things, they may give him some IV fluid if he is dehydrated. As for the surgery date, if in the next few days he presents like he may have a cold or not at 100% healthwise, they would likely postpone the surgery until he is. The Fontan is a serious surgery and Riley being 100% healthy is a plus for our side. Our thoughts and prayers are with you guys.
My thoughts and prayers are with you and I hope Riley feels better soon. I know about the anxiety and worry that comes along with the Fontan as I went thru it with my daughter Amanda (hard to believe that was 6 years ago). Please feel free to call (916)408-4251 or(916) 390-5196 or email lkoski@surewest.net if you have any questions I might be able to help you with or just need to talk with someone who has been thru the Fontan. Prayers,
Linda Koski and Sabrina and Amanda Kwok
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