This blog is officially one year old about now, and it's been an amazing year. This post really seems to come full circle from the beginning.
After a very long and exhausting day at the hospital, Jason and I were surprised to find out that the specialist was meeting with the chief of GI to discuss Jaxon's results immediately. They had a meeting with us last night already.
Jaxon has been officially diagnosed with Neuropathic Pseudo Obstruction.
This is why he vomits. This is why he screeches in pain. This may also be why he is delayed developmentally.
He has a 70% chance to remain the exact same way he is right now for the rest of his life, while most likely being intravenously fed. He has a 30% chance to get worse, resulting in a need for a colostomy bag and a transplant. And he has the miracle chance, by the grace of God to just get better.
Reasons for this disease for Jax:
- Neurological Brain stem disorder - we are waiting for the appointment to be scheduled
- Vagus Nerve - we will have an EKG the day of the MRI to look at this
- Immature Nerve Development due to low blood flow while inutero (mono condition and TTTS)
While these upcoming tests may give us an answer of why he has this disease, they won't give us a cure. We plan to meet the with the motility specialist next week to go over questions with him and our plan of action. He wanted to give a little bit of time to accept this diagnosis. He wants to start talking about the intravenous route, which would in theory give Jax some relief from the vomiting since his food wouldn't be processed through his intestines.
Jason and I have decided to wait 6 months before making that decision, and have another motility study performed at that time. In the mean time, we want to increase his Zofran and start an antibiotic (the specialist mentioned this) that would help clear out any bacteria in the intestines (which everyone naturally has), maybe proving to give some relief. We would like to try the non-invasive route first.
Every time I asked a question, I hated the answer. I asked if this disease was fatal, and he paused....I started to lose it. Apparently the mortality rate for this disease was 40% 20 years ago, but they have no statistics to date. The doctor said science has advanced with transplants, so it's much better. I told him he was supposed to say, "no".
We've been told it's time to start thinking of his comfort.
It seems that Jax somehow suddenly knows this diagnosis was just given. He had an awful night, which may have been from the anesthesia. We had to change out his bed 3 times, and had to give a bath in the wee-hours due to vomiting and diarrhea. He's pretty inconsolable today.
We are obviously heart broken and looking for any possible way to be positive. I will have to work on that.