In the military you can be sure of a few things. First, you will get to meet a lot of amazing people. Second, you will get to travel to amazing places. Third, either you or the amazing people you meet will be moving somewhere new before too long.
Such is the case with Zack’s current surgeon. Zack has been an extremely fortunate guy. Despite the craziness of his disease, he has had incredibly talented and compassionate people caring for him. His original surgeon left us two years ago and it was hard. Little did we know that his new surgeon would be just as amazing or that it would be this surgeon who finally ordered THE test that found Zack’s diagnosis.
When you are the parent of a child with a difficult and complicated disease, having doctors who research your child, think about him after hours, and are always trying to come up with new and innovative ways to help him, the last thing you want to do is say good-bye. Happily, his surgeon let us know leaving the military does not mean he is done helping Zack. We can always reach out to him and have him consult with Zack’s team at anytime. I cannot even begin to tell you how comforting that is (to me).
As I have said many times before, the rest of Zack’s team here is just as wonderful. If only they could all stay here forever…..darn military. Luckily for us, Zack also has an incredible surgeon in Boston. She has been caring for Zack for the past 5 yeas and has performed half of his surgeries. This allows us to have one provider who will be able to follow him all the way through childhood. While that gives us peace of mind in the craziness that is Zack’s life, it does not make saying good-bye to his other doctors any easier.
Enough about that. Zack had his final appointment with his surgeon to discuss our plan going forward. Zack’s pediatrician joined us for the appointment as well. How cool is that? I told you Zack is a lucky boy. Having them both there makes life easier. It can get complicated having several doctors and keeping straight what each one said so that we can update the others. Having a team meeting like that really simplifies things and maximizes everyone’s time.
Together we were all able to all brainstorm his high output. An unconventional idea was discussed. I think I will wait to see how the idea plays out before telling the world about it. We talked about how great it is that Zack’s kidneys function well, because his intestines are falling down on the job. We discussed his obstructive episodes and made a plan for the next painful one. When that happens, we are going to head to the hospital for a CT scan to see if we can catch it in action.
Zack’s surgeon shared a new surgical procedure with us that might be an option for him in the future. I could explain it to you, but it would probably just cause your eyes to glass over. I will spare you, for now…. We talked about his enteric nervous system being out of whack at the cellular level and how best to manage that. One of the most important things we talked about is that before ACTG2 related disorders were identified, obstructive episodes were treated surgically resulting in loss of bowel. Loss of bowel leads to short gut, which leads to TPN dependency. TPN dependency can be life limiting.
To best help Zack avoid TPN, we need to make sure that nobody resects anymore bowel unless it is dead bowel. This should not be hard, because Jim and I are adamantly opposed to any more surgery unless it is life-threatening. Happily (?), all of Zack’s surgeries to date have been necessary and not exploratory. The best thing his surgeon said is that he is optimistic that a management strategy can be identified now that we have a reason for his intestinal dysfunction.
One of the ways we are planning to do that is by visiting Boston once again. Our plan is to meet with Zack’s surgeon and the short bowel team to see what new strategies they have for controlling Zack’s output. Although Zack does not have short bowel (in fact he has most of his small intestine still intact), his gut acts as though he does. If we can get his output under control, his sodium levels should normalize. This is huge because we currently spend an incredible amount of time each day trying to manage these levels. As his surgeon said….no child should have their own Morton’s Salt container.
I bet you have never seen a child so excited about a salt container before. He has been known to open it up and drink salt from it. I wish I was kidding. When that happens, we know it is time to rescue dose the boy and get his electrolytes back in check. Now that we give him CeraLyte daily, drinking from the salt container happens less frequently.
Whew. I am officially out of words for today. It is hard to believe, I know. Thank you for checking in on Zack!
Hug your babies!