Post IVIG

Things have not been going well since the IVIG treatment yesterday. We got home a little after 3PM and Maddy was really tired but that's to be expected. What we didn't expect was the drastic shortness of breath Maddy began to experience yesterday. As mentioned before Maddy's lungs are failing so she has been having more difficulty with shortness of breath even while on oxygen. She started having more episodes yesterday afternoon, even when sitting and doing nothing. By yesterday evening it was really bad so we called Hospice. They sent a nurse out and broke into our emergency hospice kit to give her Morphine drops. She takes these under her tongue to help fight what they call "air hunger". It helps calm her down and also opens up her airways some. She can have the liquid Morphine every two hours to help her breathe. She and I were up most of the night last fighting this "air hunger".

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.