Long Update….. a lot has been going on, most of which will interest few of you. This is the “fun” stuff that us parents need to deal with. As though the emotions of having a child going through this is not enough, we get to do all the legwork to get claims filed, meds delivered, appts scheduled, etc….. Sorry for the length!

Monday was Day 152. Naomi and I made a trip to COH for her monthly follow up. When we checked in at the registration desk, someone had made a mistake and scheduled her for the 19th instead of the 16th. Knowing that we are always there on Mondays, it was obviously an error on their part. After an email to the clinic and about 15 minutes waiting, we were sent right up to the clinic. Arriving there, we knew we would be sent back to the lab for blood work. Sure enough, once we told the clinic she did not have a catheter anymore, we were redirected to the lab, but not before they could call and squeeze us into the schedule.

Naomi was amazing during her blood draw. She had a conversation with the technician about her siblings and homeschooling and did not even flinch. Over in less than a minute, we were on our way back up to the clinic. After vitals, we were told to go get lunch and come back around 3pm….. In 3 hours!

So, not really hungry, we went to the Japanese Garden and enjoyed over an hour of watching fish and turtles in the pond. There were 5 adult turtles and 2 very, very small babies. The babies were smaller than the palm of my hand and were fascinating to watch. Naomi sat on a rock next to the pond and just stared at them. She would sing, and two of them kept coming closer to her as she sang. It was something really special to watch.

We grabbed lunch in the cafeteria and took our food to a quiet place in the park. Watching birds eat cracker crumbs that someone left for them, we enjoyed the peace and made new memories. The last time we had been in that park, our time came to an end and was ruined by Cait peeing and her diaper failing. I was soaked and had to run to the car for a change of clothes. So, we were thankful for the new memories and laughed about that time as we talked about it.

Her visit with the dr started with the dr walking in with her arms open to hug Naomi. Dr. P remarked at well she looked and how “really, really good” she is doing. We looked over her labs, which are all in normal range and no longer elevated due to illness. The dr also gave her the go-ahead to return to gymnastics. Slow at first and not strenuous. Naomi was very excited and did a cartwheel for the Dr to celebrate.

It was another very positive visit. We do not need to return for another month and will have labs done in two weeks at home, again.

On other news, we have had some difficulty getting meds again. The story is long, but for documentation purposes, I will write it out. Last Wednesday night, a shipment of the generic brand arrived. It was sitting on the front porch in 110 weather and the cold pack was not cold anymore. On Thursday, I called to return it and get the name brand GENGRAF, which the Dr specified. I also told them that future deliveries needed to be signed for so they did not sit in the Vegas sun!

I spent over an hour on the phone. Some times, on hold. Other times on a three way call getting the return process started, an override noted on her account so the name brand could be sent in the meantime without delay, and all this sorted. We had Aetna Home Delivery, Aetna Specialty Pharmacy and Aetna Insurance claims all dealing with it on three way calls. After the call was done, I was told that the return slips are on their way to me, the override was issued, Naomi is eligible for a 90 day supply due to be a transplant patient, and a new shipment would be sent on Friday morning.

A new shipment never arrived. So, Tuesday, I called to check in. I was in CA on Monday and not able to deal with it. It ended up that the delay was due to the override which was put through for a 30 day shipment and not a 90 day shipment. It would have taken another day or two to sort out a 90 day override, they said. So, I approved shipment of a 30 day supply.

Fortunately, the shipment did arrive on Wednesday via overnight delivery. It was signature required, too and did not sit in the sun at all. Just in time, too, because the last of her supply runs out Thursday. It is sad that getting meds on time is less a concern than insurance overrides. I cannot believe no one called me, and did not intend to after her override on Friday meant no delivery! I receive monthly calls from Naomi’s case manager at Aetna. I will be sure to tell her all about this situation. I am sure she dreads calling me each month. She gets to hear about all our insurance complaints……

We are trill trying to get the anesthesia from Naomi’s admittance on September 23, 2013 covered. There is some contract issue because the dr who did the anesthesia was not an anesthesiologist but was a pediatrician. He is contracted with the hospital to work as an anesthesiologist in pediatric outpatient procedures, which this was even though she was inpatient. The procedure was done in her room, not in the OR. But the insurance company will not recognize him as an anesthesiologist or pay him for that procedure. I have spent days of my life trying to get him his $650 from that bill so that the $1800 bill can be processed already.