"How are we doing? Our Goal is Outstanding Service. At Apria Healthcare, we're focused on ensuring that every patient experiences the highest level of service possible... We want to be your first choice...Was your order accurate and on time?"

From a pamphlet inside the PARTIAL order we received with Ellie's order today. Let's break those questions down...

How are we doing? Not well at all... Yes we knew we would not get decent customer service, the orders would be wrong, and her scripts would be sent back and forth making us and her doctors frustrated. Knowing this in advance why did we go back to Apria? Well because we had no choice. No body else (in our insurance network) was willing to take our daughter and her complex medical needs on. If I had the choice I would NEVER have left Pharmaquip. They were doing a wonderful job, but they are out of network. With upcoming changes I cannot afford to have the 25% out of pocket copay.

What is it about Apria that I upset and frustrated over? For nearly a month now we have been fighting with Apria to get her prescription order corrected and the needed supplies sent out to us. I have spoken with Apria 4 times now to get her address corrected in their system because we have moved. How hard is it to plug in the new address and get the address to stick?

When we were changing back to Apria, I emailed our DME list with the reference numbers for EACH item, the amount of each item we have been receiving to the GI doctor so the prescription could be sent in. Last month the GI office sent in the script for the GI needs and her local peds doctor sent in the respiratory script. Apria sent everything (even the respiratory) back to the GI clinic claiming the scripts were all incomplete and needed more information.

Well the scripts were sent back with more complete information. Again the scripts were sent back to the doctors claiming they needed to be separated out and individually signed. Again the clinic (annoyed) but followed through. By this point I got our Tricare case manager involved and had her communicating with our GI clinic as all involved were becoming very frustrated.

Needless to say the past couple days have been even more frustrating as Apria has been demanding more ridiculous things. As of today they are telling me there will be an additional 5 day waiting period (at least) as they wait for the insurance approval for her formula. (UGH!!!) they have preapproval already!!!

Oh and this time they said the formula and pedialute scripts were not good enough because the cans and liters were not broken down into specific kcal and ounce amounts per day. Because there was not an exact kcal and ounce amount per day they could not honor the scripts??? What she is SEVEN YEARS OLD???? Come on what child who is 7 needs to know the exact kcal, fluid ounce amount, and pump run time per day?

Today alone I have spoken with the GI Clinic, the case manager, and Apria several times. At one point I thought I was going to lose it, and had to work very hard to keep my self together.

The delivery from Apria we got today did not help matters any.

She got:
25- 500cc feeding pump bags (needs 60)
30 Ferral Venting bags (Yay this is right)
5 g-tube extensions!!
5 j-tube extensions!!
10 tagadern (?? normally get 30-90)
20 3x3 duoderm (normally get larger sizes)
6- 60cc syringes
10cc syringes (no 5cc or 20cc normally a variety)

What we are missing:
35- 500cc feeding pump bags
2 feeding pumps one for formula and one for pedialyte
formula and pedialyte (so glad the GI office has some set aside for her. I just have to call tomorrow and drive in to get it.)
gauze
gloves (home and school)
masks (home and school)
nebulizer kits, masks, filters (for home and school)
feeding tube kit (GI wants us to receive the extra kit at home and bring in when needed)

I guess now she is only supposed to eat 25 days out of the month or we are supposed to be reusing the bags and hoping they keep working. Also HOPE that Pharmaquip will let us keep using the pumps for a while (and not bill us).

Hmm does this sound like the highest level of service, on time, accurate, and leading to first choice for a DME? For me Apria was literally our LAST choice as a DME provider. We only came back to them because we had NO ONE else we could go to. I hate the fact that I have to realize my daughter is a very medically complex child. We work very hard to treat her like we do the other kids and like we would a normal and "healthy" child. I fully understand there are accommodations we have had to make for her, but I see her as close to normal as any of our other kids.

Genetic Testing Has Begun

Today we added Genetics to our team of doctors for our little princess. I like the team we met today. Not only do they seem good, but they seemed to want to help figure out what is going on with her. What stumped them the most today is the fact that not only does she have the laryngeal cleft/GI motility issues (along with the high palate) but also she has symptoms of interstitial lung disease.

The most perplexing issue for them without my having brought her records (something I totally forgot to do this time) is what in the world caused her rapid respiratory decline in the NICU. What is it that caused her lungs to keep having pneumothoracic eruptions? Why did she require four chest tubes within less than 24 hours of birth and almost require ECMO? She started out with good APGAR scores then suddenly declined. This is not normal for a 33 weeker, especially one that was 5lbs even.

We talked about some of the syndromes that she had either been tested for or we had discussed but she did not hit enough symptoms to do genetic workups for. She was tested for CF several times, those came back negative. PCD Primary Ciliary Dyskinesia, (a pulmonary disorder) came back negative. At one point when Ellie was an infant we discussed VCFS as a possibility. Once again she did not hit the two biggest issues, one specific heart condition, and cognitive delays were not enough.

The genetic doctors were not happy she was never evaluated for the seizures she had as an infant and toddler. They also were not thrilled about the fact that genetic wise she was not worked up because due to the cluster of diagnosis list, she was not supposed to live very long any way. To this point Ellie has surpassed every life expectancy we have been given for her. Because of this we have learned to live each day as a blessing and tried to treat her as we would any of our other children. We have worked to give all our kids as normal a life as possible because each one is a true blessing for us. This team is thrilled that she is doing as well as she is in school and we have a dance teacher that not only will let her be in her classes, but also is accepting of her special/medical needs and tolerates her absences as needed. I was also told to tell her dance teacher thank you for them for letting her dance with her. Apparently, this is rarely found in dance teachers and even more rare in good dance teachers.

Today proved to be a perfect day for this appointment too because she was having a very sleepy day. One of those days where we just could not wake her up no matter what we did. She sat while sleeping on the chair scale this morning. I picked her up and carried her to the exam room where she continued to sleep. Ellie slept while I went through with the resident genetic doctor about everything. He did a basic exam, then left.

The main doctor came in, we spoke more, and then she examined her again. Ellie slept through almost all the exam. What surprised me was she slept through her reflexes being taken, the sharp tools rubbed on the bottom of her feet and up her legs. Finally, as they were sitting her up for the final part she was waking up. Groggy and sleepy eyed, Ellie sat and finished the exam.

The genetic testing today started with blood and urine work. While much of this will not come back for up to three months, it hopefully will give us a start where to look.

They are starting with a specific genetic disorder in mind that causes severe GI dysfunction and laryngeal clefts. There are other issues to rule out as well. Tests for mito and metabolic disorders were also started. We will see what road these tests lead us down.