Today was an appointment day. Not just an ordinary appointment day like we have 2-3 times a week, nay! I special appointment! A DUKE appointment! After scheduling 4 months in advance, today was our trip to Raleigh to visit the Duke genetics clinic.
First, my awesome man took a day of leave and went to the museum with Son One. There are amazing dads out there, People. As I was gathering our belongings to start driving thirty minutes early, there was a knock at the door. An unexpected visit from his wonderful speech therapist! She had called and received a busy signal multiple times but wanted to slide the appointment time. We could make it and she is wonderful. She could also wear him out so he could nap in the car. A surprise was handled with grace and the new plan was ideal.
Except the part where we ran out the door and I forgot a few things. What did I forget? Well, lunch and something to suffice as dinner. A granola bar would have to do. I also forgot more than two extra diapers. Most importantly, I forgot THE BINDER. Yes, the binder.
Military family members and parents of kids who require lots of health care often carry variations of binders that hold enough paper to make a Fern Gully fairy seek justice.
I am one of the proud women who fits in both of those categories. The binder contains all the referrals, lab work, blood levels, etc. from the past two years. It is the first step to survival for the time when robots come to take over. The binder is the Fail Safe.
We dashed out the door and I went through two construction zones and a fair amount of traffic to get to reach the clinic. Early! WOOHOO! Unfortunately, the napping plan didn’t get passed along to the baby. This was going to get ugly in a few hours.
We made a bathroom pit-stop to change an entire outfit because if a child is in a car seat for more than 15 minutes it will be soaked through no matter what precautions are taken. Refreshed and relieved, we headed to the correct floor and walked up to check in
I smiled. She smiled. I gave her my card. She read the name and typed. “Oh, you. Yes, he said we didn’t have a referral for you when we checked last week.” I inhaled deeply. I assured her I have proof. “Do you have the physical referral?” she asked. No, it’s in my other pants. It’s in the BINDER at HOME.
4 months of notice, planning to bring it and a case manager assuring me everything was settled wasn’t enough. I should have looked up the clinic phone number and called to confirm it because they were going to let me swing. I filled out the waiver and called Tricare. I had exactly 10 minutes to get the copy of the authorization faxed. The case manager’s answering machine informed me she has administrative meetings only on Wednesdays during the exact hours of my appointment. Awesome.
The RN was fantastic. While she weighed and measured I had a lovely chat with a grandmother who now works for HealthNet’s phone lines. I’m not sure when the switch was made but the phone staffers are new. They are mostly wives of retired military members who are professional and understand the plight. The service was AMAZINGLY good. Before my kid was weighed and measured the referral was being faxed. WIN!
Then on to the room. More lovely, courteous people! Excellent. Then I was told that despite all the efforts to send records MONTHS ago, even ones I personally retrieved from the hospital and sent, did not reach the file. I would have to help fill in all the information. There wasn’t much they could accomplish today. We made the “Are you KIDDING ME?” face.
For the next hour I recalled every test, diagnosis, count level, etc. from the past 18 months. After giving a full family medical history I answered everything from “Who is your daddy and what does he do?” to “Is there any chance you and your husband are related?” No, seriously. It was a fun time for everyone despite the situation.
The great news though, is that my kid looks very healthy and has finally reached his original fighting weight. My kid actually has CHUB. I am thrilled. We finally made it.
Everyone was professional and courteous but the child was wearing down.
The referral also didn’t expressly allow for blood draws and lab work. I couldn’t make it to the lab by 5:00 anyway. By now two hours had passed. The kid was inconsolable despite food, toys and ladies to hold him. His eyes drooped and he fell into that 5th circle of Dante’s Inferno where they NEED to sleep but just keep screaming to lull themselves toward the next circle.
As every order and prescription was recorded on a physical piece of paper for me to pass on I realized there was no possible way I could get back home and to the church on time. There was a VBS meeting and I was in charge. As all the paperwork was handed to me I opened the door and saw through the hallway windows. The sky was black and rain was coming down at a 45 degree angle. The thunder rolled.
We drove through the storm and drove a few minutes ahead of it all the way back home. By the time we carried everything into the house it was 7:10 pm and time for second dinner. When my other two men returned from church I saw that Firstborn had acquired a shiner under his right eye in the last 12 hours. Se la vie.
Thus, today I have spent 5 hours on the phone and in e-mail correspondence with case managers, health care professionals and a quick SOS call from a friend. Both of us had unhappy kids in the background, so there was some solidarity.
Parenting is a fight. Tomorrow we have blood labs to do and more calls to make. Today I’ve spent 5 hours doing follow up calls to medical care and therapy folks while trying to do All The THINGS that a mom must do daily. I may have also found a chocolate bar and eaten 75% of it while on hold. Send reinforcements; I’m not sure how long I can keep my dukes up.