Only had to spend 11 days in this trip so all in all not bad considering. We have at least managed to bring her once almost routine month long stays to a much more do able 2wk average. Although I must say this was definetly one of the more 'intense'(for lack of better word) stays given the time fame... But it truly was one time things could have gone very different and VERY wrong for many reasons but thankfully I know my baby must have someone watching out for her! It was truly touching in the mitst of everything to see SO MANY Dr.'s and other hospital staff so worried, upset, and determined to help her as I did the other day. All because it was happening to "Riley". Of course we all know they would have sprung into action if it would have been any child. But in such a large childrens hospital it is so amazing to see how much they truly care about her and how special she is to everyone when they see a hundred children just like her every day. We are very blessed to be right where we are!
I just wanted to give a quick update since it is late. Her temp were better today. Still having some autonomic issues but to me they weren't as persistent as yesterday. She did go up to 101.2 before bed tonight but we will see how it goes. She was ready and HAPPY to come home as were all of us. Given everything she has been through I am glad they were more causious. Now is not the time to wait and see... I remembered she needed her TPN labs drawn today too so we pulled them off when her TPN was done. I was glad I thought of it with all the temp issues. When I looked at it her Hemaglobin was 8.1, well hello! Hopefully this explains the autonomic issues! She doesn't handle being that anemic well so if it is only 8.1 now, 48hrs after surgery, I can only imagine what it was a few days ago. Especially considering they purposly drew an H&H the night before surgery and I was shocked and thrilled to hear she was 10.5 then... That's a little on the higher side of her norm. I should have know since she has dried up blood all matted in the back of her hair in PACU and it was all over her body. I had been hoping what was on her was bedadine but it actually washed off a little to easy the other day. I have no idea what they did that caused her toloose so much blood since no one spoke a word about it to me. It doesn't matter now though, I am just happy that hopefully this is what is stressing her body out and causing the autonomic issues rather than an infection.
Liam is being a trouble maker to now. He must have heard about Riley's escapaid the other day and desided he needed to try to get some more attention to. Wil took him for his follow up to the ENT's office today. Apparently something happened to his Left ear tube and it flipped all the way out and around and has almost fallen into his ear drum, Only my children! Of course I didn't even know it was possible but it needs to be fixed now. So, they have schedualed him to go back to surgery on Tuesday to have a new one put in. Hopefully it will be as simple as it sounds. Otherwise they said everything looks good. There is still a small amount of packing in his nose and they said he should be able to breath much better once it all comes out. So, that was good to heat. It's hisown fault since he wont use the saline spray it takes longer to fall out and heal as well.
But all in all I'm just glad to be home and a little tired, LOL :) What can you do but be thankful as I said things could easily be very different right now...