For some reason, I'm craving kielbasa
We just got back from the ENT's, and it looks like we could be going to the hospital as early as tomorrow morning to get Lil J started on the Propranolol and hooked up to an EKG to make sure it's not affecting his circulatory system adversely. He'll have to stay overnight whenever they can fit us in, so, actually, tomorrow would be better than next week since we have so much house stuff going on then. But we're mostly hoping that everything is ok and the medication doesn't have any bad side effects for him. The ENT said that we have the option of doing nothing and just observing Lil J right now because he doesn't sound as bad as he did, but with it being cold and flu season, the ENT really didn't recommend that because if Lil J does catch something, it could get bad quickly. So that's the score. We're waiting on a phone call to tell us when to go to the hospital, I'll probably pack a bag tonight, and then brace myself for more hospital food and sleeping on a plank while gnashing my teeth with worry all night long. Ahhh yes. But I suppose this is better than being in the hospital over Thanksgiving. I can only imagine what cafeteria could do to turkey and stuffing. Yech.
posted by Ann at 10:55 AM
6 Comments:
Well, at least he will be in a hospital and hooked up to monitors... much better than just listening for breathing all night long. But I can only imagine how scary all of this is. Good luck. And get yourself some good kielbasa... and peirogies!!
Mmm...I love peirogies
I hope all goes well with the little man!
I had peirogies last night! yum! You should package up some of those for the hospital!
Good luck and I am sure that everything is going to be fine!
Mmm, whoever Ashley is, she better be giving me some peirogies. POTATOES!
Btw, you should read my latest blog... it's crazier than face doughnuts.
Anonymous again with the now 21 month old daughter with a hemangioma on the side of her head. I hope your little one does well on the Propranolol. Took my daughter to her Hemangioma Dr for a checkup on Monday. Talked at length with her as she arrived back from the Nova PHACES conference in Houston the day before and of course Propranolol was the hot topic. She is a part of the Hemangioma Investigative Group and when we last talked to her, she was very cautious about using it as she only had one patient on it. This time, she said that it was our choice if we wanted to and had a better comfort level after having 3 of her own patients on it and from talking to other Dr. at the conference. Some Dr. are no longer doing the EKG overnight stay, but said that she would. A cardiologist at the conference said that he suggested that the full MRI/ECHO scan should be done beforehand. My daughter had this done, and I'm sure your son has as well (pretty standard with large H's).
Some anecdotal side effects from Propranolol. She said that these are not a fact (no data to back up these yet), just observations from a group of Dr.s talking.
1. Possible low blood sugar (possibly patient looses some appetite). After seeing ours who is a bit round said that "she would not have a problem..."
2. Possible problems regulating body temperature (kids always feels hot/cold). However, she said that some kids with H's without taking medication also have this problem.
Good luck. Our Dr has had very good results with it. One patient didn't respond to steroids, vincristine (!!! how bad a H must be to not respond to chemo), but did to Propanolol. At times it is scary to think that this is experimental, but what you and your family is doing will potentially save future families from going through the same uncertainty and medical problems associated with hemangiomas. Thanks.
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