As we left you in our last entry, Ryan was having his MRI done. The MRI took somewhere around 3 hours to complete and results were read and reported to us quickly. There are no abnormalities in his brain or spinal cord. This is good news for him, does not help Dr. Mantovani make any more suggestions on whether or not this is related to Charlotte's problems, nor does it count that possibility out. Basically, it does not change anything about what we have already been told about Ryan's condition.
When Ryan came up to the PICU following the MRI, we had a long discussion with Dr. Mantovani about what is to come. We will be sending genetic blood tests out tomorrow. We asked some hard questions, questions that we didn't want to ask but need to face. We are wondering where this is all taking us and how fast. One of Dr. Mantovani's primary goals was to get Ryan off the ventilator that was required for the MRI to be done. Then we discussed what needs to happen for us to take Ryan home. We are not left with many options. In order for him to go home, he is not to require "ventilation" as he is currently requiring from the "pressure" behind the oxygen. *Currently he is requiring ventilation and still having labored breathing. The other issue that will limit whether or not he can come home is nutrition. He cannot come home with a NG tube because he is unable to protect his airway (no gag reflex). He would have to have surgery to have a feeding tube placed, and may not make it out of the hospital following the procedure and may not come off of the ventilator either. Our final option is to take Ryan home and recieve hospice supportive care for him, granted he can survive the trip. None of our options have a positive outcome.
The reason Dr. Mantovani is confident that Ryan cannot get better is because the disorder lies in the "maintenance genes" of the cells. They are continuing to deteriorate.
The only good news we do have tonight is that Ryan has been able to be extubated (the ventilator tube is out). He has struggled tonight to be comfortable, having difficulty swallowing his secretions, possibly due to a sore throat from the tube that was there, or from the process that has weakened his body so much. We are currently unsure if the tube will need to be replaced. They are monitoring his blood gasses carefully to determine if his body needs more help to breath.
Right now, we do not want Ryan to experience procedures or tests that cannot improve his quality of life. We want to remember Ryan the way he is, the sweet eyes that look up at us, knowing we are his mommy and daddy. He is perfect.