So, after many frustrating hours on the phone with multiple different people and the help of two truly wonderful Dr.'s (to whom I am yet again forever grateful for!) WE ARE GOING TO NC!!!! I am so happy! I would have just so hated to have waited all this time and made a ton of plans all for nothing. Just start praying now something useful comes of all this! Since as of this morning we thought the trip was off we have a lot of unfinished plans to hurry up and get together. Thankfully, most of the big thing were already mostly arranged like flights and someone to watch Liam (I love you Denise!!!) so now it's a matter of everything else like packing for Riley... No small task.
On to Liam. He woke up with a temp of 105 today. That was fun.... but I was finally able to get that down around noon and surprisingly they have actually been under control today. It wasn't until around 5pm he started going up and I just headed it off with meds. He was up the ENTIRE night last night however itching. His rash has just all run together now and all you see is a white streak here or there everything else is just red and swollen from the rash. Literally, it's even under his hair! I was talking to the pediatrician this afternoon about both the kids and when I told her about his itching and the max doses of benadryl still not even letting him be able to sleep, she quickly called in some Atarax syrup for him. I think all the meds together had him all wired and he missed his "window" earlier when he was sleepy and is still rolling around and now itching again next to me at 1am. He has yet to go to sleep... Thank goodness it's time for more meds!
I did hear from GI finally after spending the majority of my day trying to get a call back from their office or even someone to answer the phone! But after much debate we decided Riley could wait to see GI until we get back from NC. I also heard back from Hematology, they want a Doppler of her Right Subclavian and the SVC. This will help to check for clots so I'm just happy someone is doing something! Well since Cardio decided to take the wait and see approach anyway. She is still doing good and being exceptionally good and happy even though she does probably have a sinus infection. But I'm glad she's happy.
Liam is out there FREAKING out so I better get to him! I'll update again soon....