Sunday, March 15, 2015
Thursday, March 5, 2015
It's almost 10AM and she is currently resting. I do not know if this new development is a reaction to the IVIG, one of the side effects listed for the med is shortness of breath but she has never experienced that side effect before, or if her lungs have just begun to fail to the point where this is our next forever battle. In either case I am taking the day off again to stay with her and help her through this. As always prayers are appreciated.
Wednesday, March 4, 2015
Time for a follow up and IVIG. We thought Maddy was scheduled to see the doctor this morning followed by her next IVIG treatment. But when we got to the transplant clinic this morning at 8:00 they said she was only getting her blood work done at clinic and then her IVIG appointment was at 10:30. She has been debating wether it was going to be worth going through IVIG again at this point so we had planned on asking the doctor what good it was going to do. The main reason is because traditionally the IVIG makes Maddy sick and worn out for a few days after. Dr. Haddad was nice enough to come out and answer our questions after Maddy's blood draw. He said the IVIG could hold things off for a little while longer. And it also works as an anti-infectant so it may help her fight off new infections. That's the answer we were looking for. Maddy doesn't want to do anything that will not increase her quality of life at this point. So of the doctors believe the treatment will help give her a few more good days then we are all in.
These days Maddy isn't having much luck with any food other that Ramen noodles. So we took the opportunity to run home and have a big bowl of Ramen before coming back to the infusion clinic. It's a bit of a pain but worth it. We are glad to live close enough to TGH to be able to do that. Hopefully the IVIG treatment won't take forever but it usually does.
So far things at home are going ok. We had a few problems getting her pain managed at the beginning but that has settled in pretty good for now. So far most days have been good for Maddy. Melissa has been coming to hang out with her almost every day so that I can have a few hours to get into work. My sister and sister-in-law, as well as Ethan, have come and hung out a couple times. The whole team is working together to be sure Maddy has the best care possible!
Maddy's overall outlook on life seems pretty good. As always she is taking everything in stride. So far she has not had the energy to get out of the house but after today's excursion I think she will be more open to going places. I'm hoping we can get her out and maybe to the movies or something this weekend.
As for her symptoms, it does seem like her lungs are getting a little worse every day. But the deterioration seems pretty slow at this point. Hopefully the IVIG will bind up the antibodies and slow the damage they are doing even more. The pain in her lungs is pretty much a constant but as I mentioned before the meds are mostly managing it. Her appetite is not great but she is eating at least three times a day so she's not losing weight rapidly anymore.
That's the update. We are just going to sit here in the infusion clinic the remainder of the day and see how things look from here. Thanks for the continued prayers and good vibes.