Focusing on the Positives on a Day Full of Negatives

Today started out really good! Darein had a FFA breakfast to attend this morning and wanted me to attend it with her. I was reluctant but she was very persuasive so I ended up giving in and having a very nice time with her :) I received a call from the Shriners Hospital this morning at 9am. I was anxiously awaiting this phone call since last week and was so excited to see how long it would be before we could get Darein in. The nurse then proceeded to tell me that sometimes they can't accept patients because of their complicated health history and the fact that they have no ICU if something were to go wrong or if Darein would require more critical care following surgery. Therefore, she needed to get more medical background history so they could make a decision on whether she would be accepted or not. I went over Darein's complicated medical history with her and had to tell her that Darein had a history of sleep apnea but had not had a sleep study since she was about 7 or 8. She had a sleep study done when she was little and it showed sleep apnea so then we had her tonsils removed but left her adenoids as they didn't seem to be blocking her airway and because she has a flat nasal bridge it would make her voice nasal by removing them and we didn't want to do that if it wasn't necessary. Once her tonsils were taken out and she was recovered from the surgery we then had another sleep study done which showed that her sleep apnea had resolved. Therefore, due to the numerous other issues as well as changes in physicians another was never ordered and she seemed to be doing fine. However, I was just thinking the other day that we probably needed it checked out again and mentioned it to Darein and she agreed because she thought she might be having some problems with breathing at night. The nurse was concerned about the history of sleep apnea and the fact that she didn't have a recent test so she spoke with the nurse practitioner and they decided to talk with the anesthesiologist and see if he thought that she would be too big of a risk. The nurse suggested that we go ahead and get a sleep study done because she would need it probably for upcoming surgeries. She also stated that the same doctors that work at Shriners also work at the Children's Hospital there in St. Louis and we would just have to file our insurance if she was turned away from Shriners and then we would have co-pays and whatever insurance doesn't pay to take care. So she will be taken care of, its just a matter of which facility and our cost. My understanding is that this spine surgery will cost close to the amount it costs for a transplant so still praying that we get in to Shriners though them not having an ICU unit scares me and my husband a little so we will still have many questions if they do accept her.
Once I got off the phone I put a call into Darein's pediatricians office so that I could check and see if they would order her sleep study here in Springfield so that we didn't have to travel for it. The nurse called me back shortly and wanted me to speak with the doctor herself so that I give her the new findings and come up with a plan for her. Therefore, shortly the doctor called me to discuss things. She had already set up an appointment for Darein to get her sleep study at the hospital here in town. I then asked her if she knew what the results of Darein's KUB xray were that she had done the other day for her kidney. She said that she had sent the disc to Kansas City and was unable to pull the film up right then on her computer because it wasn't working but did read the report. Darein had had a bowel movement that morning prior to the test and didn't have the test done until after school yet there was still some showing up on the xray and she said that the report mentioned that it looked like there were pills showing up on the xray as well. I'm not sure why her body isn't digesting these but I am quite concerned about it. Unfortunately the pediatrician had no answers and just wanted to make sure that urology was following her. So now I have to find out how big of an issue there is going on with Darein's kidney, bladder or what on top of the scoliosis.
I received a call shortly thereafter from the hospital stating that they were calling to schedule Darein's sleep study. However, due to insurance issues we can't do the consult appointment and sleep study on the same day. So, Darein will go Friday for her consult appointment and for a tour of the sleep center and then she will have the sleep study Tuesday night. I called her orthopedic doctor's office to let them know what was going on so that they could be looking for the results to send to Shriners hospital when they call requesting those results.
Darein then came home from school and was upset that I had scheduled the consult on Friday as she had a field trip scheduled with her FFA that she really wanted to attend and I had forgot as I was in a hurry to get things in motion. I had to explain to her that I couldn't reschedule because if I rescheduled then I would have to reschedule the sleep study which was another couple of phone calls and would throw us further behind. She was not happy but handled it very well fortunately. I figure we won't hear anything from urology until next week but hope to hear as soon as possible so I can figure out where it falls in our new list of priorities.
I also received an e-mail from Toyota today about my truck saying that my truck that was supposed to be ready by yesterday would now not be ready until March 4th!! It is costing me quite a bit to keep this rental due to the fact that we have chosen the rental car companies insurance instead of our own. In case you don't know what's going on with my truck, I was in a wreck a couple of weeks ago and so this is pertaining to getting my truck fixed. Of course, the insurance lady is out all this week so we have no other options other than to wait and hope they will reimburse us for our expenses since this wasn't my fault to begin with.
After school Damein went to physical therapy in town and called his dad saying that he had a flat tire. He told his dad that it was totally flat and he couldn't drive to a convenience store to get it aired up. Evidently, he was just nervous as he hasn't experienced anything like this before so his dad had me take over dinner and went into town to check things out with Damein's car. Come to find out, it was pretty low but Damein hadn't been checking his tires so we are assuming it was a slow leak but not sure. My husband got it to an airhose and showed him how to air it up and they got him home safe and sound. He now has an air tank in the back of his vehicle and has been shown how to use it and so will keep an eye on this and we will see how it progresses but will get a couple of new tires and Shane is going to let him sit at the tire place while Damein's vehicle is being fixed so he understands some things that go with owning a vehicle as Damein is not learning these lessons very well :)
The expenses continue to mount and priorities continue to change on a regular basis right now. Very hard to take baby steps but are definitely a must before we can get to a result that we are comfortable with and so that we can understand the end results of things. Trying to re-adjust my attitude this evening and be happy that even though we have had set backs we are also still making steps forward. We definitely continue to learn everyday with Darein and all that is involved in caring for her. We will continue to build our character as we continue to take life by the horns and face it head on. Though going through each challenge is waring and frustrating, at the end of each challenge I know that there is hope and we are always stronger and more informed and have better character than we did before we faced the challenge and for that reason we will press forward and continue to get through life's adversity head on.