Two steps back

Things have not gone as planned and have taken another frustrating turn. Most of this frustration is simply getting different facts on different days and just when you think everything is going to work out another wrench gets thrown into the works.

The appeal to have Sam's inpatient stay in Boston be covered by insurance was denied again. We were not very concerned about this because we had also been told that Medicaid would pick up any charges that our primary insurance did not cover. Unfortunately they failed to mention that this was only if our insurance covered the stay. Since our insurance will not cover the stay, Medicaid will not cover any charges either. This also means that the funding that we were anticipating for the travel, lodging, and meals also went away.

The inpatient stay in Boston is by itself fairly costly. Then we also need to consider that insurance also has not agreed to pay for Sam's outpatient care in Boston or subsequent follow up visits. This is still being worked on and we are hoping to at least get that portion covered, but it does not look promising.

Due to all of this, we have had to delay the trip to Boston. It is heartbreaking to watch Sam continue to slowly go downhill and know that we were so close to being able to do something for him that would have taken most of his current issues away. We are just hoping now that we can quickly come up with a plan to finance his trip to Boston and get him the help he needs.

We have been provided a wealth of information regarding organizations that may be able to help. Unfortunately we have not had any luck yet and it seems like almost every program or grant has some type of limitation or conditions to it that we, or this treatment, do not meet. We are continuing to work at this and hopefully we will find a match soon. I am also very fortunate to have a very caring group of people at my employer who have planned a fundraising benefit to help with Sam's care. We also recently received a gift from my mother's co-workers to contribute to this fund and we thank them for their generous and unexpected gift.

It is just a matter of time before everything comes together and we can get this done, there is no question in our minds that we will work this out somehow and we will get Sam to Boston soon. It will just take a little longer than we hoped.