Monday, February 20, 2012

Plugging Along

It has been a couple of weeks since our visit to MGH. Owen continues to provide us with eventful weeks- it honestly feels like each week brings some kind of new adventure or challenge with him! Two weeks ago, the hospice doctor paid a visit to our house to talk about switching Owen back to the pallative care side of their program. Owen was put on hospice in January when he had his first " fire drill", which turned out to be a cold. Pete and I agreed that it would be appropriate to switch him back and paperwork was going to be filled out on the following Monday. While it is not set in stone, the understanding with hospice is life expectancy is six months or less. Owen is by no means thriving, but he doesn't appear to be rapidly declining either. Or at least he didn't until the next day.

Thursday and Friday, Owen went on what I am now calling The Hungar Strike of 2012. He decided that the meger 14 oz he was eating a day was too much and dropped his intake down to 5 oz or less. And slept most of the day and night. His doctors assumed this was Owen's body shutting down and starting the dying process. When a person shifts into the dying process, it is more comfortable to be dehydrated and people naturally do this on their own. I personally didn't believe it. I grieved losing Owen back in January and vowed I would not let him trick me again. Yes, way back in my brain there was a portion that was scared, but realistically I knew that he would just as likely wake up and start eating again as he would die. Guess what he did on Sunday? Yup, decided to eat again. What a turkey!

He still eats way too little and even less then before the Hungar Strike, but he eats enough to stay hydrated. He is a slender little guy, but remains very cute! His medications have been switched around a bit and we are seeing Owen have longer periods of calmness. It is wonderful to see him smile and giggle and be content on his own. He doesn't sleep, but apparently he doesn't need to. Owen remains on hospice for the time being, but I would assume they are going to take him off in the next few weeks if he continues to eat. He really likes his hospice nurse and it wouldn't surprise me if the Hungar Strike was his way of ensuring that she continue her visits to our house twice a week.

Sunday, February 5, 2012

Our MGH Visit

This past Wednesday, Owen got to participate in one of his favorite activities, going to the doctor's office. Pete and I brought him to Mass General Hospital to meet with Dr. Eichler, a leukodystrophy specialist. I would say that we were very happy with the appointment, but given the circumstances, happy just doesn't seem like the right word.

We spent a little over two hours with the doctor and his nurse practitioner. They reviewed everything about Owen from birth through present day. Dr. Eichler was helpful in providing a bit of reassurance in how we are caring for Owen. He confirmed that he doesn't expect Owen to gain milestones and he also does not feel there is any treatment available to help reverse the damage this disease has caused Owen's brain and body. Nothing good to hear, but at least it helps us to know we are doing the best we can for our little boy by keeping him comfortable.

In typical Owen fashion, we got some news we were not expecting; Dr. Eichler isn't convinced Owen has a classical form of leukodystrophy. His money is on some form of a mitochondrial disease. This theory has been kicked around by his current team of doctors in the past, as well as some other diseases. Owen just doesn't fit into any one category well. He has abnormalities that point in many different directions, but these abnormalities are also contradictory in the way they present.

Tomorrow, we are meeting with Dr. T, the neurologist and Karen, the palliative care doctor. We have already spoken with Dr. K, the genetic/metabolic doctor, and discussed some additional testing we can do. At this point, anything which can be tested off of his DNA from his skin biopsy gets the green light, everything else requires deeper discussions.

In the big picture, nothing has changed. Whether it is a leukodystrophy or a mitochondrial disease, there is no treatment. Owen has been a pretty happy boy lately, we have really been getting to know his personality- which is a very sweet, cuddly little guy. We will continue to look for answers for Owen, but we are grateful for every day we have with him.

Today, Owen plans to suit up in his Patriots jammies and enjoy the game in his Daddy's arms. It will be a great day for making some wonderful memories. Go Pats!