Sunday, October 26, 2008

Taking things out of Context

A little over 3 years ago I was 25 weeks and 3 days pregnant. I was in labor. We were poor. Dallas and I had just gotten laid off from the same company. We had gotten to keep our insurance till October 1st. Tyler came and we had no idea how we were going to afford it.

We had purchased a small insurance plan from the University of Utah because I was a student there. The plan was just to cover my prenatal visits. It didn't cover catastrophic deliveries like we had.

Tyler was born. He was not breathing. He needed more care than Alta View could give. He was life flighted to LDS hospital. The life flight was really expensive. Like 10 grand grand for a 3 minute flight. He was on a ventilator. He was in a level 3 NICU. One on one nursing care.

I had a c section. I had blood clots under it. I had to have one on one nursing care to get the giant wound to close. I then went on a Wound vacuum. All the while we had no insurance.

In October Tyler was life flighted AGAIN to PCMC. He was treated for Hydrocephalus. He had his first of several brain surgeries. He was still on a ventilator. He still had one on one nursing.

In November I had surgery to close the wound that was caused as a result of the emergency birth. Ty was still in the NICU. He had endured eye surgery and was finally of a ventilator. He was still in a Level 3 NICU. He was sick. We were still unemployed.

The bills kept coming in.

Ty got medicaid finally. We got 30 dollars a month because he was considered institutionalized. The medicaid was for one year. It only covered Tyler.

In December we finally get our baby home. 93 days in a level 3 nursery. 3 months of bills. Open heart surgery, brain surgery and eye surgery in those 93 days. Countless brain scans, ultrasounds, meds, TPN, ventalators, cpap and oxygen. Diapers were being used, wipes, binkies, hand sanitizer, blankets etc. All things we paid for.

In February we were back in for surgery. A skull reconstruction. A neurosurgeon, pediatric anesthesiologist, pediatric radiologist and nursing care. This included a 3 day PICU stay and a 3 day Infant unit stay. Meds, diapers etc were all charged to US!

April we were in the ER at Cottonwood hospital then transported AGAIN to PCMC. Emergency brain surgery for Tyler. This included CT scans, tests to figure out what was wrong, a stay at the hospital. Meds, diapers and we were back on oxygen.

We had a month of CT scans, ER visits, Daily doc visits because he was crying all the time. We had meds we filled, appointments to go to and our own doctor appointments to attend to because of the stress we were under.

May we had yet another brain surgery. Including more scans, xrays, docs, anesthesia, radiologists and another stay at the hospital.

From the day we were sent home we had weekly weight checks, visits and a myriad of other follow up appointments. All bill to us in some way. Things medicaid didn't pay for. Things that we couldn't pay for.

Ty loses his medicaid. We still have speciality formula to buy. He is still underweight. We make to much money for help. We still get all the above. We can't pay for it. We know that. We do the best we can.

Tyler then has to have Brain surgery again. A total skull reconstruction. Another PICU stay. Another hospital bill. Another set of bills to come to us.

We get synagis for 2 years. That is 3 grand a shot. Ty gets 2 of them a month. We have 3 specialist visits a month. We pay out of pocket for Physical therapy because early intervention said we didn't qualify. We paid co pays for 3 visits a week for several months. We have gas to pay to get to these specialist.

We got pneumonia 2 times.

We moved to a new state. We had to wait to move Tyler and I till we were cleared to move by our neurosurgeon.

This doesn't include all the other things that come with having a sick kid. We didn't make a lot of money in Utah. We chose to not pay the bills from the docs and hospitals. We hired a lawyer because of the debt we incurred. We were filing for bankruptcy. We made to much money. We were stuck paying of the bills. WE ARE STILL STUCK WITH THE BILLS.

We still do care for Tyler. We still pay out of pocket for things.

I don't have a problem with people getting donations from other people. I don't have a problem with fundraisers happening to help get things paid for. I don't mind. I have participated. My sister had fundraisers for a kidney transplant. We have had to get help from others.

I don't mind people blogging about their experience. ( um.. Hi! I have a blog) A lot of the time I can finally relate to someone. I get hate mail. I get comments that I am Negative. I get emails stating I have not done enough for my son.

I get taken out of context and when asking if someone has seen or tried for a waiver for medicaid I get people saying I don't get what it is like to have a sick kid. I get people telling me I am insensitive. I get people saying that I am mean.

I might be walking in your shoes. I do walk in my own and you don't walk in them. I read and try to understand where you are coming from. I am sorry it was taken in the wrong way. I don't think you are not doing all you can. I welcome new treatments, insurance advice and other things. I am sorry you thought I was being rude.

I won't be donating. I won't be giving them money. I will pray for them. Their lack of compassion for others and knowing that sometimes what they say are being construed as rude or uncompassionate amazes me. I hope they realize that a comment or a suggestions or even a small amount of misunderstanding is not meant as you are not doing what you can. Why won't I donate? I want to. I do want to. I won't because compassion is not always returned. Instead things are taken out of context and mean things from your readers are thrown at me when they have not seen or heard my whole story either.


Erin said...

I am not sure who this is directed at so I don't know if I am out of line to comment but I just wanted to write and say I understand. We were fortunate to have very good insurance during Maeve's life but I also happened to be the benefit manager at my company and so I KNEW that the bills for Maeve had peirced the aggregate (meaning the company I worked for paid $500,000 for her care)and had probably reached nearly $1,000,000. That was in just five months with a few minor surgeries, none of them brain surgery.
Also, having been where we have been, I have become very generous, but also very picky with where I will and will not help. You learn what hospitals and groups are really helping children and families and which ones are NOT. It is just a very expensive education we have had and if people see it as wrong of stingy, well, too bad.
Anyway, I don't know who took what out of context, but those are my thoughts. And keep writing the way you do. I hate blogs about perfect people:)

Nancy Brown said...

Thank you Erin. I have found that many people think that you are being mean on the internet when really you are wondering how it is possible when in black and white writing it says they qualify. It was NOT meant to be mean and yet I got crucified because how could I possibly understand what having a sick kid in the hospital could possibly be like.

I don't donate to the march of dimes but I am happy to ask for donations for the place we receive therapy. Its all in the context that you are doing it.

I love you. Thanks for Getting me. I miss you!