I am not sure where to begin tonight...
The holiday season has been a mix of emotions and challenges for us. Sam continues to do very well, he is learning new things all of the time and is generally happy most of the time. When we look back on photos from just a few months ago it is still hard to imagine that this is the same child. It is hard to remember how yellow he was and how grumpy he was most of the time. We (finally) have been able to get him started on medication for what we have thought was reflux for quite some time. This has had a dramatic improvement in the amount of vomiting fits that we have to go through in a day.
Sam's favorite person, by far, is his brother. A sure way to bring a smile to his face is to sit him down in front of Ryan and let them play. Sam couldn't ask for a better big brother. Ryan is amazing with Sam.
Jason will be returning to Boston with Sam on January 7th for a checkup. Hopefully this horrid winter weather will take a break for that week.
As we approach Christmas, we are so happy to be home with both of our children. There is always the chance that something could go wrong at any time, and we are happy to have made it through this week with no trips to the hospital for any unexpected Sam issues. This is not being pessimistic; it is just a reality in our lives that we don't plan many days in advance for anything.
For those of you who are reading this journal entry just a day before Christmas who were expecting a happy and uplifting journal post this is where you may want to stop reading and come back after the holiday. There has been a lot going on lately, some Sam related and some not, and we have been putting off posting and we try to let things settle down and work themselves out. You have been warned that the rest of this entry is not happy and uplifting.
Up until just a few weeks ago it seemed like we always had "something" going on. When Sam was first sick we had the house to work on. When Sam was diagnosed we had plans to make so we could bring him home. When he came home we were so happy to finally have him here that nothing else mattered. When he started suffering from TPN associated liver disease we fought to get him to Boston to start Omegaven. Then we went through all of the planning to go to Boston. Then we were in Boston. When we came home from Boston we had his benefit to get ready for. All of these distractions were serving a purpose that we never realized.
Over the last few weeks a new reality has begun to set in. This is our life. All day, Everyday. It never stops. 365 days a year. We are angry, sad, depressed, and tired.
We are tired of waking up every day to Sam lying in a puddle of his own stool from his shoulders to his toes. No matter what methods we have tried to contain it, there is just too much of it. This means a long tiresome process to get him and everything else clean and ensure that no bacteria is getting at his line. We are tired of the amount of laundry Sam creates.
We are tired of the constant battles and red tape that it takes to get anything done for Sam. We are tired of having most of our adult conversations with nurses, doctors, pharmacists, insurance companies, and medical billing offices. Our insurance company has now determined that it is not medically necessary for Sam to have home nursing care. This is absolutely ridiculous considering the fact that we know other children with this disease receive upwards of 40 hours a week in dedicated nursing compared to the hour or two that we were receiving before this decision. This means that we will need to haul Sam, and everything that goes with Sam, to the clinic and hospital more frequently. Just what he needs is more visits to a germ filled hospital. We have tried in vein to get a hold of our nurse case manger for 4 days without a return call. We are almost too tired to even fight this battle. We are tired of someone who has no idea what Sam needs deciding what he needs.
We are tired of the sleepless nights. If we are not worrying about Sam, we are worried about finances, or the next thing to go wrong with the house, or the next asinine thing our insurance company will come up with, or about each otherâ€™s mental health.
We are tired of trying to act like there is nothing wrong and that everything is OK around Ryan. The last thing we need is for him to feel like we are tired of him and I fear he does feel that sometimes.
We are just tired. We need a break. We cannot remember the last time we went somewhere, together, without at least one of the kids. We are not comfortable leaving Sam with anyone and there are not many people out there who would be comfortable with us leaving Sam with them. He requires a lot of attention and a mistake with him can be disastrous.
We are happy that Sam is here with us, at home. In June we very much doubted that Sam would be here for Christmas, and we thought that if he made it until Christmas it would most likely be his last. We grieved, we accepted, we were prepared. Things have changed so much in the last few months that we forget some days how fragile he really is. We still have Microvillus Inclusion Disease to deal with everyday. At any moment something could go horribly wrong and we are no longer prepared to lose him. It is hard to prepare for such a festive time of year and have that thought in your head that this could be the last Christmas for Sam. We stay positive, and really don't for see any major problems in the near future, but that doubt will never go away, ever. I honestly do not think I will fully enjoy another holiday for the rest of my life.
We feel horrible for having these thoughts, we are very fortunate to have a healthy, happy Sam here with us for this holiday. There are many families who are not as lucky as us.
For those of you who have been following Emerson's story, our hearts are breaking for her family this week. We are scared for them and cannot imagine the pain they are going through. This could have been Sam if we had tried for a transplant, he could be in a hospital right now suffering through complications like Emerson. If you have a moment to leave a message for Emerson, please do so at her website: http://cotaforemersonw.com/
In spite of everything, we will still have a very happy Christmas. It will be an emotional one, but we are happy to be home, where we can feel a little magic on Christmas morning when Ryan fills our house with excitement.