I know I am not the only mother who has a child with bladder exstrophy. I know I’m not the only mother (or parent) who has felt so frustrated and confused. I have one HUGE problem that needs to be overcome. My problem is that I only want the best for my child and I cannot afford it.

In case you haven’t gathered it yet, pharmacy we aren’t the richest people in the world. My husband works an 8-4:30 job, sovaldi making  a few dollars above minimum wage.  He pulls in side jobs whenever he can and absolutely loves his side computer gigs, but he also does as many other projects as possible to build his resume. I stay home to take care of my son, because I don’t trust people  to take proper care of him and I’d be paying my entire paycheck for the week in child care services. He likes having me home anyway and I love being here. It’s pretty amazing how we survive.

Our car is very reliable, considering it survived a flood way back when (we didn’t own it then) and is a 1988 model. My father is the one who does most of the fixes and she’s a good enough car that she doesn’t tell us there is an issue until we’re closer to Mom and Dad’s, much to my father’s frustration :P.

If you think we are the type of people who just take from the government and are “entitled”, you have it all wrong. We don’t receive food stamps, housing assistance, or WIC. We could easily receive that, because we make well below what they consider too much to receive it. My husband and I are of the mind that the taxes that are taken to fund such things are STEALING so we limit what we take as much as we can.

There is only one thing that we get: health coverage for my child. It is the only thing we can’t afford to skip out on and he needs things that we otherwise would not be able to provide.

I say all that to say that when you are in the position that we are, between the best and second best, you take 2nd best until you can afford better.

Within the past month I have spent so much time on the phone with Hopkins, NH medicaid, and everyone else in between that I’m beyond frustrated.

I had called and scheduled a cystoscopy for Neylan for June 2nd, 2012, at 11:45. We purchased the train tickets, which were $410, for me, the husband, and Ney to take both trips down and back up. We were excited, but we still didn’t know how much it was going to cost. In fact, they didn’t let me know until about 2 weeks before the trip! And I also found out that we would have to pay it in FULL before they even thought about doing the procedure.

 

Where were we going to get $3,000 before the procedure? We don’t even have that much in credit cards!

After all was said and done, they said they wanted to try working something out with our “Out-of-state” insurance, but that I needed to get the direct line to our case worker. So I called the case-worker, who just happened to be on vacation that week. Someone else took the call and said she had NO IDEA what I was talking about and that my case worker wouldn’t handle that.

Plus, Hopkins told me that IF they could come to an agreement with the “Out-of-state” insurance, it would only go to cover the room (strictly hospital fees), not the doctors’ pay. That would mean for the the most recent procedure, that it would cost us about 1,500 out of pocket, that still had to be paid before they’d touch him. In the end of all that mess, the procedure was cancelled and I was left wondering what the heck I was going to do from there.

Then I called the first helpful person in this entire story. Amy took down the information concerning my son’s case (very thoroughly, I must add) and said she’d pass it to the person or people who were in charge of looking into this special type of thing. I finally got a call back today.

*SIGH*

We have 3 choices. 1) Mass General, 2) Tufts, or 3) Boston Children’s. I JUMPED at Children’s… but here’s the kicker. For Children’s they’ll only pay for OUTPATIENT procedures and doctor visits (not that that’s an issue right now, as my child is only going to need outpatient procedures in the near future), and any in-patient procedures need prior authorization and need to only be preformed at that hospital and not DHMC. If my child need’s an in-patient procedure for his BE, I will fight tooth an nail for it.

I pray that the other mothers and fathers don’t judge me for taking a path of least resistance. How can I, in good conscience, deprive my family of money we need now, when the same services can be provided at not only a closer hospital, but one that is in the top 10 for this type of thing.

I wouldn’t have to pay for a hotel when we go down because we could either do a same day visit or go to my parents’ and visit with them the night before. We wouldn’t have to pay almost $500 for train tickets or have my husband lose days of work. I wouldn’t feel so stressed out or get to the point where I am asking God WHY He had to allow my child to go through this.

Only about an hour away. 🙂 (No, they don't live in Freetown. And you thought I'd tell you where they live :P)

 

When Dr. Merguerian was up at DHMC, I never felt the way that I feel now. If he was still there, I am certain that I wouldn’t feel this way.  When Dr. Merguerian was Neylan’s surgeon, my feelings were different. I had the normal BE parental feelings of “Oh my goodness! ANOTHER surgery?”, “It’s really something when you come back to visit a hospital and feel at home.” , and “I am so thankful for David’s House and the people that work here and donate.” (David’s House is like the Ronald McDonald House.) But with Dr. Merguerian gone and feeling so overwhelmed, all of my feelings and thoughts have changed to something so much more stressful. My thoughts and feelings are more like, “How are we going to pay for this?”, “How can I convince our current doctor’s office to do this procedure, when they don’t think it is necessary?”, and “Will we be able to find a good doctor that will understand our son’s case?”.

Dr. Merguerian, Picture from seattlechildrens.org

 

If you are a parent who is blessed enough to have gotten through a failed repair and gotten your child to the best in the nation, I am happy for you. If you are a parent who had your child at Hopkins because you knew that he (or she) had bladder exstrophy, I am jealous because I had no idea. If you are a parent who has the money for insurance, and the ability to get your child down to Hopkins, I beg you, PLEASE do not look down upon the parents who are doing their best, but can’t afford it.

We were so blessed because when Neylan was born, we had a great surgeon near by. The doctors did the best for my son. His initial repair did not fail. They covered his case closely and saw us for it often… at our not-so-well-known hospital and our surgeon was so amazing that he is currently on staff at Seattle Children’s Hospital.

Now it is up to us to make the next move and do what is best for our family. Please don’t judge me for making the decision that I am going to make. Yes, I am taking a less resistant path. It is the best decision for my family. Please be thankful along with me. Please support our decision. Thank you for helping us get a second opinion from Dr. Gearhart. It has helped us make this decision. It has helped us know exactly where we need to go from here, what procedures we need to ask for, and how to better care for the most important little man in my life. Without the trip to Maryland, we would not have started Neylan on Miralax, we would not know for sure that a BNR at 2 1/2 is a bad move, and we would not have had the full assurance of what a good surgeon we were blessed with before. Please just hug us, love us, and continue to pray with us that we will someday be able to take our son to Dr. Gearhart for his other important surgery.

Thank you for supporting us.

Megan A.K.A. “B.E. Mom”