We aren't doing it

When we had our last rehab appointment we needed to go to the spastic clinic. We had never actually been to it since we did 90 percent of our stuff at Shriner's hospital, but we got the appointment and I took Tyler ( and Grayson because I was still pregnant, haha) and started a plan to get Ty a little less spastic ( or tight) in his legs and other parts.

Originally the plan presented was to cast him and brace him. We did that and it didn't do anything. In fact it made no difference and just made him upset. The people doing the testing weren't surprised because they don't think it is in his hamstrings but in his ankles. Since they didn't think it was his hamstrings a cord release surgery was not an option.

We moved on to Phenol injections which we have been giving. We got them moved up and sooner so that we could look at a baclofen pump and a trial. So we decided to go forward with the trial and we had to wait till after we had Grayson so that we had the time and the ability to do it.

We got the information on the baclofen trial and Dallas and I felt HORRIBLE about it. We don't know what the deal was but Dallas answered the questions for the check in. We still didn't feel ok about it.

So I called. I called to get some more information and to see if they were able to calm any of my concerns. They weren't. In fact, I was even more upset over it. I was also so mad at myself because one of the reasons to not do it is medical cost.

When I had Tyler I really thought that no matter what the cost we would give him the BEST care and that it wouldn't matter what it cost. But it does matter. If something goes wrong we lose our disability for Tyler. Losing our disability takes away his Medicaid. Losing medicaid means we pay out of pocket for the pump refills. The refills we get right now are on the 4 buck list at walmart so getting a refill is "no big deal." But a pump refill. THOUSANDS of dollars every few weeks. Not to mention that we have to pay for the hospital and the sedation that will be used.

When I mentioned cost, they said without medicaid they usually don't even try it because families shouldn't be bankrupt with medical costs. It would cause more burden that it is worth.

I felt horrible and better at the same time. It looks as though we will try a few things first and we will evaluate the situation in November. Maybe in a few months it will look more appealing than right now.

Prematurity Awareness: COST!!!!!

By the time we were transferred to Primary Children's hospital we had received our first bill. It was the bill of Ty's life flight.

Keep in mind Ty was born on one end of the valley and life flighted into Downtown Salt Lake. In a car that takes roughly 30 minutes when there is no traffic. I was not able to be life flighted so they took him instead.

The life flight that took him took roughly ten minutes ( if that) and when we got the bill for the helicopter we were charged roughly 9 thousand dollars. Keep in mind that this was not for any of the care but for specifically JUST THE HELICOPTER.

On October 31st 2005 we received Tyler's bill for LDS hospital for not even one month. This bill goes from 9/21/05 - 10/19/05 (so not even a month). The statement is for: $163,045.91.

This was just for his care. We didn't ever factor in what my bills were. I had complications from my c section. I was getting nursing care, wound care, breast pumps, medicine and later a wound vacuum and surgery. It didn't include my post natal care from my OB or from anything else.

Bills didn't include gas, food and stress or anything else that came with traumatic things.

Overall, we are sure that Ty was able to rack up a million dollar bill. With all his surgeries to date and all his reconstructions done that bill has by far been surpassed.

I am so glad we have a million dollar baby! I am glad to keep him!