I've sat down to right this post a few times in the past two weeks and each time I get distracted. Then things change so I have to start all over. Well, the saga continues. Here's a summary of our oxygen situation.
- The pediatrician determined that Joshua was indeed ready for an overnight room air trial to decide if he was ready to come off oxygen.
- We told the nurse and the doctor the appropriate home health company to contact, and they sent an order.
- I called the home health company to discuss other business and mentioned that they should be receiving a doctor's order.
- Joshua needs a minor surgery, so we took him and his oxygen tank to the appointment. They informed us that they would prefer that he was off oxygen prior to his surgery. Joshua needs to be officially off oxygen in six days. We've been weaning him and he needs less and less everyday
- I still hadn't heard from the home health company. This surprised me because we have been high-maintenance clients and I assumed they would want to be done with us as quickly as possible. I called them and it turns out they had not received an order.
- I called the pediatrician and the nurse sent the order to the wrong company.
- As anticipated, the home health company got us the equipment we needed right away. But the problem was nothing could really happen with it until the next business day - Monday
- We set everything up, put our sweet boy to bed and attached the test to him.
- We discovered during his early morning feeding that somewhere in the four hours the test had stopped. We needed at least eight hours of data.
- Jerry dropped the test off and asked if they could check to see if they had enough data. After a series of "I don't knows," someone said they would call him.
- At 4:50 PM we still had not heard anything so I called. There was indeed enough data and it had been faxed to the pediatrician.
- I called the pediatrician's office and asked a nurse if/when the doctor could look at the test. She informed me that the neonatologist who they fax the information to would not be able to look at it until next Monday. He's a mission president in Germany and only reviews these tests on his P-Day. (Seriously, only in Utah)
- At this point, patience ceased to be a virtue. I informed her that the call needed to be made before next Monday, and that I was calling today to make sure it gets made before the holiday weekend. If the nurse had sent the order to the right company we would have had the results and decision already.
- She arranged to have a respiratory therapist look at the info and make an unofficial decision before the doctor takes a look at it.
- As I write, I am still waiting to hear back.
A few years ago, I was talking to my old boss. I said something along the lines of, "I hope I'll be able to fight for the things my kids need." She responded with something like, "You will. They're your kids. You fight for them."
I understand this now. My mother bear claws are out. I'm done waiting. I want this call to be made. We have a deadline.
Second, on the day Joshua came home from the NICU one of the nurse practitioners told us that if we think there is a problem with Joshua, there probably is. We know him better than any doctor Right now, I don't think there is a problem. In fact, I know better than a doctor in Germany who has never examined him that he is ready. I'm the one making sure he doesn't look dusky and obsessively watching his belly rise and fall. I'm the one who gets up at night because I haven't heard the monitor beep and I"m afraid it's not turned on. I know he's ready and I'm powerlessly waiting for a doctor to confirm ut.
On the upside, Joshua has had the cutest smiles today. He gets better and better at it everyday. Although he refuses to perform for the camera.