Total Role Reversal

I will start by saying I have a newfound appreciation for what my boys have endured over the years. They are such fighters, it's amazing. But we do know the apple doesn't fall far from the tree.

So I'm gonna highjack Avery's blog (bc we know it's usually all about him :))......

Backing up to my CT results from Wed morning which had all the drs. in a panic bc apparently they were very bad. The Urologist that came by was totally shocked to see me coherent bc he assumed based on the CT and labs that I would be "half dead". The abcess was 4cm which he said was extremely large and rare. He had no idea how the heck I got it (his guess is as good as mine) and was only symptomatic for 4 days. They started me on two very strong broad spectrum IV antibiotics which Avery has been on numerous. My stomach has been as mess so I can only imagine how he feels on these.

The plan for yesterday was to drain and culture the abcess. So I went down to CT to have this done. They did a repeat CT to check the size and placement and it was still 4cm. They put a local anesthetic on the area and gave me some versed. The dr was unable to aspirate anything so he said that the kidney was severely inflamed. Hmmmm.... Anyway you can imagine what it feels like after to have a needle stuck into a severely inflamed organ. I will tell you just minutes after the procedure I was in the worse pain of my life. I couldn't see straight, tears were streaming from my eyes and the swearing devil appeared. It took a good 45 minutes to get the pain under control with morphine. I continued to have a couple of episodes of this once the morphine wore off. Once the pain was finally relieved I spiked a temp of 102 yet again.

This morning I woke up feeling better than I have all week. The urologist stopped by bright and early and he is not convinced that there was not an abcess and never am I. The plan today is for me to get a PICC line placed (temporary central line) so I can go home with these strong abx. It's great they trust my medical knowledge to send me home with a line but one of the IVs runs for 4 hrs at 3x a day. ugh!!! I think that is the one they are sending me home with. I have no idea how I am going to do this with my normal life but I'm sure I will figure it out quickly bc there is no way I'm sitting in a hospital. I do have to say that adult care is so different than pediatric care. I have entered a different arena but Have quickly found a way to navigate it. Although this whole roomate thing is just plain weird, especially when you have to share a bathroom.....

Thankfully the kids have done well in my absence although there was a crazy moment that was resolved. Save that story for another time. I am sad that I was supposed to be in Canada today visiting my frien Debbie :(. I know I can reschedule though. I have to get myself better.

This weeks posting was supposed to be all about Mitochondrial Awareness Week but I guess it was in a way. For our family, this disease has meant nothing but hospitals, pain, tears, new equipment, procedures and constant adjustments and much more. One of the drs. Said to me today that her husband is a pedi. And they just had a discussion last week about Mito parents. He said they are so medical savvy and at times know more than him. I chuckled when she said it bc it's the truth. Its survival for us and our kids. The more people know about the disease the more help we can get for research to find a cure.