Today has been a good day.
I'm tired and a little emotional as the stress of today is starting to have its effect, but today was a really good day. Nathan is doing well as long as we stay on top of giving him pain meds every couple of hours. The poor little fella seems to be in a considerable amount of pain as the effects of his morphine starts to wear off, sending his heart rate soaring and giving him the shakes. Its tough to watch as I wipe his head with a cool, wet washcloth, but his nurses have been amazing at being quick to give him relief. Other than the expected pain he is experiencing, everything has gone very well today. Let me start from the beginning...
This anesthesiologist researched mito and any info on anesthesia in patients with this disease that he could find, and he even tried to call our team in Houston for their input, but they were not able to be reached. His desire to do everything in his power to keep Nate safe and comfortable was heartwarming. We've always had wonderful eagerness and receptiveness from our anesthesia team, but this doctor was even above and beyond what we have previously experienced. He even came by tonight to check on the little guy and tell him "thank you" for being such a good patient. Working with this doctor today was an incredible blessing.
We had a great talk with our surgeon before they took Nathan back to the OR. He said that he recently spoke to the doctor who is essentially the grandfather of these gastric stimulators and was our surgeon's mentor. This ground-breaking doctor in Mississippi implants gastric stimulators in adults, whereas our surgeon is the initial doctor who started implanting them in peds. He said that in speaking about Nathan's case to this leading researcher and doctor in gastric electrical stimulation, this doctor said that he has actually implanted stimulators in a couple of adult mito patients and they have responded very well. That eased all of our minds that Nate was not the first "mito patient" to have this procedure done, though he is seemingly the first child with mito to undergo this treatment. I can not explain how encouraging it is to hear that this treatment has been and continues to be quite successful in a couple of adults with this same disease. Hopefully, Nathan will experience the same results for a very long time.
He's in quite a bit of pain, but our team and nurses have been on top of it all evening. Our surgeon just came by again a little bit ago and ordered more pain meds to keep him comfortable for longer and some IV antibiotics as a precautionary against infection. The little guy has a little bit of a temp tonight, but that could be from the stress of surgery. We'll be here for a few days, it seems. We are taking his recovery slow, as we have seen in the past that pushing him too quickly causes more problems. Hopefully the little man will start to perk up in a couple of days.
Thank you all so much for your prayers. I am constantly amazed at how
God blesses Nathan with the amount of strength and courage that most of
us can not fathom. Its a humbling experience to see God's grace seeping
through the heart of your child. Our sweet warrior is an amazing
blessing in our lives.