I am so sad right now I may not even make sense. And you most likely wont even understand what this means or why I feel so sad. Connor's CF doctor called and Connor has cultured pseudomonas :( That is so sad you don't even understand. I feel like a failure to my son. I mean I try so hard to keep hin healthy and I clean everything! And we use Purell all the time! I don't let him play anywhere that pseudomonas can grow. I just don't understand. Basically, it means this is his first really bad culture and it only goes down from here with is lung damage. This is something I have been working VERY hard to not have him get. SO now he will take an inhaled neb called Tobi for 15 minutes twice a day for a month on and then a month off, month on etc.....for how ever long the doctor feels. It could be forever, or a miracle could happen and the pseudomonas "PA" will go away and then we will stop I believe. He also is takng another antibiotic for a couple weeks that is just a liquid. For me I feel like this is the beginning to the end. If this treatment isn't working, then he will go into the hospital for IV Antibiotics for 2 weeks. So please remember him in your prayers that this treatment that we can do at home will work! :) I am trying to stay possitive, but I am mad, sad, guilty, and feeling like a failure. I hate this stupid disease!!! Sorry for venting. Connor is doing a treatment and I am looking at him wanting to cry. I better stop typing now, I think I am putting my feelings on you guys enough.
Now here is Connor's new treatment list.
Morning: Albuterol in Neb
Pulmozyme in Neb
Tobi in Neb
Evening: Albuterol in Neb
SO now it takes over 2 1/2 hours to do treatments! Poor Connor Boy!!!
We used to do the neb while doing the vest, but the doctor said that it will work better for the Tobi if we didn't, so now that will take longer, but it is worth it if it helps Connor even a little bit!!!!!!
Thanks for listening vent about how I am feeling. I hope you all are doing well. We love you all!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
I will keep you all posted on how he is doing. So far he has been on this meds for one week, but I haven't noticed a difference. He is still acting sick and coughing and fighting meds and treatments. Oh I would give my life to make this better for him. AHHH! I HATE CF!!!! Anyways, we see the doctor in 3 weeks, so hopefully things will change for the better.
HOLD YOUR LOVED ONES AND NEVER ASSUME THEY KNOW YOU LOVE THEM! TELL THEM YOU LOVE THEM AND NEVER TAKE A DAY FORGRANTED!!! I LOVE YOU ALL!
Dec. 2nd update:
Well Connor was doing all his treatments great, but he caught this bad sickness we all have. Poor guy was feeling so bad. Because of the throwing up I didn't give him 2 treatments, but being scared about it with him having PA now...so I wanted to give him his treatment last night. Yesterday he was doing great and keeping gatoraide down and some bread and snacks. So I had him do a treatment. I made the vest go on a very low setting, but at the end of the treatment Connor threw up everything. I felt soooooo bad! I know how important his treatments are, but also I knew he had a sick tummy. :( It is sooo hard! So the vest was fun to clean :) Well, today Connor seems to be 100% better. I think tonight I will just do the breathing treatments and wait one more day for the vest. Please keep him in your prayers that this PA clears from his lungs and wont cause anymore damage!!!!!!!!!!!!!!