We have survived a month at home. Some of the days in that month have been very good days. Some of the days in that month have been not quite as good. The past week has been filled with quite a few of the not so good variety, but we will vent about those shortly.
It is hard to imagine what our lives were like 4 months ago. March 1st really wasn't that long ago, was it? We spent the day with friends and all of the kids at Wild Air and we played almost as much as the kids. Even Deb, at the end of her 8th month of pregnancy, got into the action. Everything was so care free, at least that was what we remember. We were about to close on our house and were busy picking out new carpet, paint colors, new appliances. These seemed like such tremendous, important decisions at the time. We spent time everyday talking to Ryan about being a big brother. These were exciting days, full of dreams and plans for the not so distant future.
When we skip ahead a month and remember what our lives were like 3 months ago, you have to do a double take because you can't believe that this is the same family from just four short weeks ago. It feels like out family is falling apart. Ryan is practically living at his grandparentâ€™s house. We can't sleep, eat, or work. In fact we can barely function. Sam has been in the NICU for three weeks. We are living in a half finished house because nothing in our lives went according to plan in the last month. Our days are spent telling each other that everything is going to be ok. Pretty soon they will figure out what is wrong with Sam and no matter what it is we will deal with it and move on with our lives. Just one more test. They should have an answer in just a few more days.
A few more days turn into weeks and we find ourselves now looking back at what our life was like two months ago. Things should have been better by now, but instead they are worse. No matter how hard they try, they have not been able to get to the bottom of what is wrong with Sam. Sam has moved to a bigger hospital, further away from home. Now our family seems even more broken, Ryan lives at the Ronald McDonald house a few days a week, spends a few days with Grandma and Gramps, and a few days a week at home with Dad. We are no close to an answer about Sam, we watch him with sadness every day. Although we don't vocalize it, we have given up hope and are certain that he is not going to survive long enough for them to ever figure out what is wrong with him. We cannot bring ourselves to unpack anything for his room at home. We both begin to worry about the other mental health. The doctors tell us that they should have a better idea of what is going on and may be close to a diagnosis in a few days. I think that we have heard this one somewhere before.
One month ago we found ourselves in a very scary place. Sam had been diagnosed almost two weeks prior and we were going home. After 3 1/2 years it is hard to remember what is was like to have a baby in the house. We quickly begin to read "What to expect the first year", but quickly realize that it will not be much help to us. We will need to learn as we go, and we have a lot to learn. We don't care though, we are just happy to be going home. We can manage this, it won't be that bad. We get to be a family again.
Like I said earlier, "Some of the days in that month have been very good days. Some of the days in that month have been not quite as good." The past week has been very, very trying.
As we said in our last post, Sam's direct bilirubin took quite a jump in the past week. We knew before the lab results were back that this would be the case, his color has been gradually getting worse. The lack of sleep has begun to catch up with us, we are edgy and cranky at each other, but we get over it quickly. It has helped to have other people to take our frustrations out on in the last several days.
If you have ever had to depend on any government agency for anything, we feel very sorry for you. You wouldn't think that it would be so difficult for someone in Sam's situation to get Medicaid to help with his medical care. Your thinking would be incorrect. When we applied for Medicaid on Sam's behalf we were told that they would let us know as soon as they needed any documentation. They did. We received a letter on June 18th telling us that we had until June 20th to provide documentation of our citizenship and identity, and until June 27th to provide verification of our monthly income. We hand deliver citizenship and identity verification on the 19th. We hand deliver income verification on the 26th. We receive in the mail, on the 26th, a letter dated the 24th saying that our application for Medicare has been denied because of our failure to provide the requested documents. To make a long story short our application was denied because the case worker lost the paperwork on her desk and didn't have time to process any of it when she received it because she is so busy. I am going to try this one at work and see how long I last. This situation has since been resolved only because Deb went down to the local office and pitched a huge angry fit - it is amazing how fast they can locate a missing piece of paper when there is an angry mother and crying baby in your lobby.
Social Security payments are another whole story - at least they haven't lost anything yet, they just move at a pace slower than a turtle - to date (approaching Sam's 4 month birthday) he has received a total of $30 in benefits from the federal government.
In preparation for our journey to Boston, we have had to have medical records from three hospitals and the pediatricianâ€™s office sent to Dr. Puder. This is another one of those things that you wouldn't think would be that difficult, but several phone calls later you would understand that nothing is easy. Three out of four sets of medical records went out on the first request. I would be up all night if I told you about the fourth. Everyone has an excuse for not doing their job. Everyone tells you "I will take care of that right away". Then you find out a few days later that it didn't happen.
We have figured out that the only way to get anything done is to yell and scream. It also helps when you throw in "Your stupidity is causing a delay in getting a life saving treatment for my son" a few times. But it really is a therapeutic way to vent your frustrations out on someone who you don't have to sleep next to every night.
As soon as we get through all of our red tape we will be able to set a date to get out to Boston. If we have any updates later this week, we will be sure to post again and let everyone know.