Busy Busy

Since our last post we have been very busy. After being denied for nursing care about six or seven times we were about to give up! Finally we were approved for 35 hours per week! We were hoping for 48 but will take anything. We started the busy process of meeting with our case manager and meeting nurses. We found the perfect nurse and she started last week! Because I am also an RN, I was able to apply for something called a Hardship Waiver. It allows parents who are nurses to care for their family member if they are unable to have a job outside of the house due to the medical needs. I technically work 17.5 hours as an RN with Oliver and get paid for it.
We also have some new equipment in the house. New bath chair, which Oliver so far hates, but will have to learn to love. Also, we now have oxygen tanks, a suction machine, and an Oximeter in the house. I didn't think we would really ever need them, but due to the fact that Oliver has trouble with excess saliva and getting it out of his mouth we need suction for emergency. Since he turned blue in his last seizures we need the oxygen and the Oximeter. While training in the nurse I showed her the equipment and said, "I really don't think you will ever need this equipment." Ten minutes later Oliver started having seizures, Oxygen sat level went from 98% to low 80's, and needed oxygen for about 20 minutes. He also needed his emergency seizure meds that day, so overall I told the nurse it was a great training day! I do have to admit that it was incredibly hard for me to hand Oliver over, even though I trust the RN. John and I do not feel comfortable leaving Oliver with anybody, really, so this was tough—but important! He is so sensitive to everything and has seizures so easily, but the nurse was fantastic! Adina and I were able to go outside and play for two hours in the snow, I was able to do house work, and laundry during the day!!! Usually we have to wait until night to do these things when we are both home. Adina already knows how to work the Oximeter and silence the alarms, she is a little nurse as well. Daddy has been gone almost all day because he’s doing his clinical work at the Good Samaritan (not the VA) and having the nurse come will be a real help.
Oliver had his sedated hearing test and has PERFECT hearing! When the audiologist said this I said, "Excuse me, perfect!? So he is just a normal man with selective hearing!!!" The nurses and sedation doctor were not able to get an IV placed because his veins are so bad. They had to use meds through his G-tube to put him out. Of course all of the excitement from this caused seizures, but he has perfect hearing!! Next time he is sedated for anything we have to tell the nurse ahead of time so they can make some special arrangements.
Adina has been ice skating a few times, but has now also decided that when she grows up, she wants to be a professional bull rider (she saw it on ESPN)! Don't worry, we will not be going out anytime soon to buy her a bull! She is also sure that she has a baby in her belly just like mommy. Now that we have a nurse we will be able to have more special Adina days. The first day that we left Oliver with the nurse, Adina was very worried that the nurse was going to leave Oliver. She is very protective!