Well this is my first blog so bare with me. I'm Kat Mom to Mikey now 17 yrs old with Cystic Fibrosis, Diabetes and Asthma. Mikey is doing really well. I do have to keep on top of him but for the most part he does pretty good. Mikey was sick last week on Monday, I took him to see his primary Doctor there they had me take him over to see his ENT doc, as I thought he had a sinus infection he was put on cipro, I still didn't think he was OK even over the weekend, he was tired all the time and wanted to sleep alot, then on Tuesday or late Monday he was up with high fevers and a pounding headache, I took him back to see his primary doc and again it was a sinus infection that never really did go away, I then took him over to see the ENT doc again, he used the scope on Mikey and said the infection was pretty bad, this time it went deep into the sinuses, he said do levaquin and prednisone, right now he is on 50mg of the pred for 6 days then slowly get him down to 5 mg so within the next 2 to 3 weeks he should be off it, the only good thingy about the pred is he EATS and EATS he is hungry all the time, maybe now he'll gain the weight back again. then this afternoon the primary doc calls me to tell me he has the FLU it came back positive , now he is taking tamaflu for the next week, this med is great, it really does work he just had to start it by today for it to help, if he waited another day it would not work. Mikey also got the flu last year, even with the flu shot he still got it. he ate a few times today, I made him 3 shakes so far with CIB and heavy cream, since he lost 10 pounds in a week he really needs to gain it back. all he is doing is laying around or playing video games, I never let video games on the weekdays but I do give in when he is sick and maybe just doing nothing and eating will help put the weight back on.
the doc said if by Friday he is still not feeling well or still has those headaches he will need to go in and get a picc line done, I dont see that happening he really looks so much better today and eating and for Mikey to eat I know he is feeling better.
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I'm so glad Mikey looks better today! Yeah, that pred makes you eat for sure. Our grocery bill has doubled since my kidney tx. haha!
ReplyDeleteYay for your new blog. I'm so excited to follow it. We've been out of touch.
thnak you nutxy. mikey had clinic the other day, PFT's are 101% he is doing great. he did lose 2 lbs but that not bad at all ill just fatten him up.
ReplyDeletehis doc asked if he would like to be in a study a new med for the nebulizer he said he would love to, sine he is 17 i cant really tell him what to do i can give him my thoughts and ideas so i just told him it was up to him and he said yes he would love to participate. im ahppy he is doing it, since its only a med he will inhale through his nebulizer i thought why not.
studys have been done on this med already with older cfers now its the 5 to 18 yr olds. he should start it in july sometime.
how are you feeling? how does mom feel since you 2 had the surgery? she is such a strong women i really do admire her.
im not on much anymore, its either im busy or just not wanting to deal with it at times
( can be a downer as you know)
anyways ill try and call you monday after the surgeon i dont have the kids either so ill have some free time, if i get a chance ill call you in the afternoon.
love ya
kat