Ugh, I'll never understand why insurance companies have to make life so hard. I'm sure there are many others out there who wonder the same exact thing too.
Today we had the 'pleasure' of finding out that one of the DME companies that was referred to us by UPMC was not a supplier of the things that we need. Instead was a pharmacy for respiratory and IV therapy. Not very reassuring to us at all to be given such wrong information by our new forced upon insurance.
If you aren't up to date with that, while we were in Cincinnati we were thankfully covered for the most part with our state's Medicaid. In Pennsylvania if you have a child born with medical problems albeit physical or mental your child is approved for PA Medicaid. Without it its near impossible to receive services for things like therapy, or medical supplies for example.
When we came back home two months later after Maggie's surgery that she had,, he had multiple procedures done at one time in an almost 11 hour surgery. She had her colon resected because we found when we went to Cincinnati that she had a double colon. She had her right kidney removed because by this time it had lost all of its function. As a matter of fact when her urologist came to speak with us they found the ureter was attached to her vagina, so it didn't have a chance from the get go. She had bladderneck reconstruction because again when they got in there they found that her bladderneck was weak and that's why she wasn't able to keep any urine in. They also needed to do a ureter reimplant on her left side, the good side, because she still had reflux on her left side. And they didn't want her to start refluxing back up after doing all this surgery to her.
She also had two other procedures done to help with her quality of life too. One was a Malone, they had to create a neo appendix ( we learned again during her surgery that she didn't have one ,, she was born without an appendix) and they attatched this to her belly button so we could give her antegrade enemas through her belly button instead of the 'old fashioned" way through her rectum. And the other was a Mitrofanoff. We were originally doing self catherizing but were finding it wasn't going to work well for Maggie as she got older, not to mention with the bladderneck reconstruction she would need it anyways.
So as you can see, that's a LOT of surgery for a 6 yr old. Actually Maggie wasn't quite 6 yet at the time it was done. We spent a total of 23 days in the hospital the first time because she developed a bowel leak, a small one, but one none the less. And after her second surgery , her decannulation, we spent a week in the hospital due to the fact she started up with her very first UTI. I will say I give Cincinnati all the credit when she did get sick because they looked over everything , up and down, and inside out to make sure that nothing else was going on.
After we were able to get through that we were able to come home. Once we did we quickly found out that PA was getting rid of their Access program, the very program that was able to get us to Cincinnati, and had to quickly chose an HMO, that wasn't going to be covered through Cincinnati. As it stands I don't know who's to blame, Republicans or Democrats for this medical change. What I do know is that this is going to be a tough battle.
We are hoping through the generosity of strangers that you can find it in your heart to help us with the costs of Maggie's day to day living. She requires equipment that we now have to pay out of pocket for because the HMO doesn't cover it. We still have to travel to Cincinnati and thankfully through the grace of God , after our round and round with the HMO today our nurse from Cincinnati out of the blue called. They are going to try everything humanly possible to get us back there. So we have that on our side for now. We need to continue to pray that things will go the right direction with this.
With that said, we still have to travel to Cincinnati again, as Maggie's bladder is NOT responding the way we want it to since the surgery. Sadly, when we traveled back in August , Maggie's bladder shrunk and isn't holding as much as it did before surgery. We've been trying to see with medication dosage changes to see if it would relax itself more and stretch out so that the valve in her Mitrofanoff (pronounced my-troff-fan-off) would quit closing up on us so we can catherize her through her stoma. As it stands right now we aren't seeing any improvement and until we come up with a new plan she will have to continue to keep her supra pubic tube until we see what the next step is. So we are due to go back to Cincinnati October 31st, (yes, Halloween) , and will now be staying from the 1st-5th. Today we were told that they want to do a cystoscopy and change out her supra pubic tube.
The costs of medical supplies, traveling and whatever else comes our way can be very draining especially financially.
If you look at the right side there is a ticker of sort on our page. Take a moment to click on it and donate as much as you can. If its $5 , $15 , $50 or $500 would be greatful. Every little bit helps, especially in these tough times. Know that every penny goes to Maggie's care.
No comments:
Post a Comment