Thursday, July 31, 2008

An unplanned event

It is 3:00 AM. I have not been to bed yet, so please excuse any typos.

Sam had a fever tonight. A fever can be a sign of an infection in Sam's central line so we had to take him into the ER tonight at 10:30. Good news, no infection.

Unfortunatley Sam's Hemoglobin is dangerously low. Sam left Appleton about 30 minutes ago in an ambulance headed for Children's in Milwaukee - I am headed out the door to join him there now.

I will post another update later today, we are hoping that everything works out and we can still make the trip to Boston on Saturday, but this may delay our trip.

Monday, July 28, 2008

On our way to Boston

It has been awhile since we updated the site with any new information, so we have a lot to update.

Sam's weight is still hovering right over 9 pounds. His liver enzymes and bilirubin continue to be elevated. Sam's has had several crabby days lately and it seems like he is very uncomfortable some days. We also had a little bought with an ear infection, but that has since cleared up. Sam still has quite a bit of fluid in his ears, and we are already working with the ear, nose, and throat specialist to schedule him to have tubes put in his ears when we get back from Boston. Sam's brother had horrible trouble with ear infections, and our choices for antibiotics are somewhat limited after our first try at an oral antibiotic did not go so well, which is prompting us to go the route of tubes a little sooner than normal.

Sam will be checking into Children̢۪s Hospital Boston on 08/04/08. Deb, Jason, and Sam will be leaving for Boston on Saturday. Although this is good news, we have had quite a bit of disappointing news to go right along with it. We have not been able to convince our insurance or Medicaid to cover his treatments in Boston. This leaves the total cost of both his Inpatient and Outpatient treatments solely on us. The estimated cost for his first trip to Boston is approximately $20,000. Since Medicaid will not be covering any part of the treatment, we also lost our medical assistance travel reimbursement which was another setback. We were fortunate; however, to receive a grant from Winnebago County to help with expenses which will cover our airfare and allow us to stay in a hotel until more permanent lodging arrangements can be made. We can receive a 40% discount on Sam's hospital charges if we pay for the services up front, but even $12,000 is a stretch for us right now. No matter what the cost, we still are positive that this treatment will be a huge benefit for Sam and we will continue to do what we can for him.

Several things have been going on or are in the works to help cover the expenses for Boston and we will never be able to express our gratitude enough to the people who have donated time, money, and other items to help cover the expenses for Sam's care.

Fundraisers were planned at Jason's place of employment. Last Friday and ice cream social was held to raise funds. This Wednesday they will be holding a pancake breakfast as well. These activities have all been planned by a group of associates who took it upon themselves to help us out. So far they have had very good success due to the overwhelming support of the employees of School Specialty. Several members of Jason's family are planning a benefit for September 20th and we will post more information on our website as we get closer to that date. We have also gained some assistance from a local marketing firm who are helping us in getting the word out about Sam in our community in hopes for more local support.

Thursday, July 17, 2008

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.

Monday, July 14, 2008

One step closer

Things are starting to come together and we are one step closer to getting Sam out to Boston. Medicaid has agreed to cover any medical bills that our primary insurance does not cover while we are in Boston. We are just awaiting final word from our primary insurance on whether or not they are going to accept or deny our appeal to their denial of coverage for the outpatient portion of Sam's treatment.

Other things are planned, but not finalized - we know which airline we will be flying and which flight we will be on, just not what day yet. We know where Deb will stay when she gets there and have started to create lists of things to pack.

Sam's weight was up slightly this week - 8 pounds 7 ounces. Unfortunately his bilirubin levels are up again this week as well and his direct bilirubin was at 3.8 today. We have gotten so used to him being yellow that we forget sometimes - until someone points out that our baby is yellow.

We hope to have a date set to check in at Boston in the next few days and have told them that we can be there as soon as they are ready.

Saturday, July 12, 2008

Good News / Bad News

Since our last update we have received several pieces of news regarding Sam's trip to Boston. Unfortunately we are still waiting for final approval from Boston to schedule a definite admission date.

Our primary insurance has denied our precertification for Sam's inpatient stay in Boston. There was some confusion regarding Sam's secondary insurance (Medicaid) and because of this the hospital did not send a precertification request to them. Medicaid will not pay for this visit if the precertification is not done, so we will need to wait and see what the response is on that before going. Our other option would be to skip the insurance for the inpatient portion, and cover this portion ourselves. We can make that happen if needed, but would prefer it if insurance picked up the tab for it. This means that everything is on hold until we can get these arrangements worked out.

We did get good news from the county this week; they have located some funds from family services to help cover the cost of our travel and lodging for our trip. Between this and the portion that Medical Assistance will be covering virtually the entire trip will be covered.

We are anxious to get things moving. We know that every day that we have to wait is just causing more damage to Sam's liver. We are still hoping to be in Boston by the end of July and will hopefully know more in the upcoming week.

Thursday, July 10, 2008

Four months old!

Sam turned four months old on Monday! There were a lot of days that we never thought we were going to make it to four months.

Not much has changed with Sam. His weight is still hovering between 8 pounds 5 ounces and 8 pounds 9 ounces, depending on which scale we are at that day. His direct bilirubin that we reported as 5.2 was an erroneous lab result. His very next set of labs came back with a 3.2 and we rose to 3.5 this week. Sam's liver enzymes continue to rise as well and we are very anxious to get to Boston and get Sam started on Omegaven.

We had a tentative date to check into Children's Hospital Boston on July 15th, but it looks like that is going to be delayed a little and they are still waiting for final approval from the finance and billing department - which was delayed due to having issues getting Sam's medical records off to Boston. Getting things arranged has taken up a lot of our time and we still have some arrangements to finalize, but we need to get that final date set first.

Sam had had a little bit of a cold - or allergies - over the last week and has now developed an ear infection. He is pretty crabby and sleepy, but he loves to get his antibiotic and acts like it is the best thing he has ever tasted. For him that isn't saying much - but he thinks it is a treat. Ryan had constant ear infections until we had tubes put in his ears, so we just hope that Sam doesn't head down the same path.

Otherwise things at home are still OK. We have our routine down and we manage to get through each day. We seldom find ourselves bored and it just seems like there are not enough hours in the day to do everything we want to do. It seems like no matter how much we sleep, we are still tired. The months of stress have finally started to catch up with us. Everything we go through every day is worth it. There is nothing like the feeling we get every morning when Sam is the happiest and full of smiles. We have learned to appreciate the little things and cherish every moment with both of our children.

Sam and Ryan at their most peaceful