Sunday, March 30, 2014
Saturday, December 14, 2013
Early Intervention is a state funded program designed to identify children with developmental delays between the ages of birth-3 years. The goal being putting interventions in place before preschool. Muriel had been assessed by them around 7 months and presented a >30% delay in gross motor skills. She received physical therapy for 3 months and at her reevaluatuon she had made great gains and did not qualify. That was last February.
The EI team consisting of a speech pathologist, physical therapist, developmental therapist, and her case manager visited the house on Thursday. They spent 2 hours evaluating her and determined she again has around a 30% delay in gross motor and a 45% (yikes) delay in expressive language. In the area of receptive language she was not presenting delay, nor did she show a cognitive delay! We plan on weekly speech and bimonthly PT as soon as the paperwork goes through.
Tuesday, December 3, 2013
Just got off the phone with Aetna. YES, it is 1:59am, YES I have been speaking with them forEVER. In addition to the conversation about the Tracleer medication earlier today, which lasted approximately an hour.
Currently, there is some sort of major disconnect. I am *so* frustrated as to why the Sildenafil medication was filled last month without issue and cannot be done this month. Aetna blames Walgreens for charging too much (over $1,000) and Walgreens says Aetna won't take their override codes...BTW, pretty sure it was in fact the same cost last time it was filled. Bottom line: IT WORKED LAST MONTH---FIGURE IT OUT!!! I told the Aetna rep that we'd be checking into the ICU for nitric oxide in the morning if they wouldn't approve her sildenafil NOW since the Walgreens only compounds at night (and that is how her Rx is written). Finally it was approved for a 15 day supply and I'll be going through all this again in 15 days. Craziness.
I really needed an outlet for that rant and I'm sorry for being so negative.
Thursday, November 7, 2013
We visited Dr. VanBergen, Dr. Shetty, and OT/PT today. Her pacemaker is going very well and we have to do at home transmission of data through a land line (who has one of those?!?), but don't have to see Dr. Shetty for 6 months!!! It feels good to be low priority!
Dr.VanBergen said she looked great. Her INR was 2.8, a bit high so we have adjusted her Coumadin dose yet again from 1/2 a pill every third day to every other day. Her liver enzymes were on track so bozintan, her next vasodialating drug has been applied for. That will probably take a month to get to go through....we also got rid of one diuretic, diaril. But the BIG NEWS is that we are trying NO OXYGEN, except at night!!!! So excited. She looks like a different child and seems so glad to not be on a 60' leash! I checked her oxygen saturation when we got home and she was 84-86%!!!
Last, we saw physical therapists that recommended she be reevaluayed by Early Intervention for possible services.
All in all, a great day!!!
Friday, October 25, 2013
We went for our first finger stick INR test yesterday, 10/24/13. Her ideal range is between 1.8-2.2, or 2.0-2.5, depending on if you ask the surgeons or the cardiologist :). Thursday it was 4.3. Slightly alarming for me. Again, I emailed Angela who contacted Dr. VanBergen to formulate a plan: broccoli for dinner, no Coumadin Thursday or Friday night, half a dose Sat., etc, recheck INR Monday.