Really not much to update...we are just hanging out until he finishes antibioitcs and we get his pain meds approved for home use.
He is doing really good, no extra pain meds have been used in a couple of days..which is awesome! It is so good to actually see my happy boy back, and to be getting sleep at night. He has been in pain for 2 1/2 years now and has been waking up and screaming every night and it is so great for him and us to finally get sleep. He looks so much better now. The IV pain pump is wonderful! Hoping we can go home on it...that is the plan as long as home health allows. We might have to switch over to Kids Path, which is a kids hospice company to get approved for the pain meds but we will see. I would really hate to lose our nurse we have now, she only comes once a week to do labs and check up but she is family now. We have had her for a year and a half.
Still waiting to hear dates for Pittsburgh as well, insurance takes forever! But hopefully by the end of the week we will know something.
Yesterday, his neurologist suggested that he had a mixed connective tissue disorder. We need to see a Rhuem Dr to get diagnosed. But all of his dr's are meeting this afternoon to discuss him and try to come up with some ideas. I am praying they can have some "light bulbs" going off and come up with some good plans. I should hopefully hear tomorrow what they discussed.