After lunch, we met with Dr. Michelson in pulmonary. He was also very nice. We talked about the different care routes you can take. I mentioned them in the last post but to detail it out a bit more: Palliative that focuses on comfort, noninvasive that prolongs life through cough assist, nebulizer etc., and then invasive which is usually a tracheotomy. He agreed that Logan is a true type 1, and the x ray showed his small chest. He said Logan breathes from his diaphragm since his chest isn’t strong. Dr. Michelson believes 6-12 months given by Dr. Connolly is generous. If Logan does not develop a respiratory illness, he has 4-6 months due to how weak he is right now.
We already knew we were not doing a trach due to our philosophy on life and also complications (paralysis of facial muscles, loss of all movement, possible vegetable state). We were unsure how noninvasive we wanted to go. Dr. Michelson set us up with Dr. Rosenbaugh who is head of Pediatric Advanced Care Team. They specialize more in palliative/support care. We met with her Thursday morning before we checked out. This was by far the hardest appointment.
We decided we would like a g-tube for when his swallowing muscles start to weaken. I need to call our doctor Monday to look into what needs to be done to have that setup. We will use the cough assist and suction as necessary rather than several times every day (Logan gets extremely upset when we use the cough assist). We do not need oxygen at this point, but will use it during the night if it makes him more comfortable. We are checking to see if there is a support team before we call in hospice.
And for the hardest part, we talked about how Logan will pass if he doesn’t develop an illness. Essentially his CO2 levels will continue to build because his body is too weak to get rid of it properly. The rise of CO2 will make him sleepy and eventually he will go to sleep and not wake up.
We do feel the trip was worth it. We gained knowledge and confidence to move forward with our original plan of keeping Logan happy and enjoying him as long as he is with us.
No matter what route we take, it will not kill Logan…SMA eventually will. We hope for a cure, but know that he will most likely be paralyzed from the neck down for the rest of his life. Some type 1 children can talk with perfect diction; some can only say a few words or not say anything at all. We do not want to put him through aggressive tests and surgeries to extend his life and not know if he was happy. Or go through all the extremes then him get sick and it all be in vain.
We are not giving up on him and we are not doing “nothing”. We are not lazy, uncaring, or made this decision on any one doctor/persons advice. We will still have him monitored. We are having nurses start coming in on a weekly basis to do checkups. If he is in severe respiratory distress, we will administer medicine so he is not in any pain. We do plan on the g-tube surgery while he is strong because we feel an ng-tube (goes through the nose) would be too uncomfortable. He still has a lot of movement and we do not want him to accidentally yank it out of place.
We are making sure he enjoys his life with us until he is called away. Whenever that might be… It could be next week; it could be in 2 years.
We have spent the past 6 weeks evaluating all our options. We have come to the conclusion there is no right or wrong way. It is all dependent upon the family and their thoughts and/or ethics. No parent should ever have to face these choices…