I have learned that there are two types of victories -- the one's that you win, and the times when you don't lose. Today we have a small victory, unfortunately it doesn't get us any closer to knowing what's going on, and it's not about what we won but more about not having bad news (and that's good news!). Since my last update, there has been much activity but very little progress, but let me get to the meat and potatoes. . . .
1. There were neurological tests scheduled for last Friday, but due to an oversight in taking him off of his feeds, he couldn't go under anesthesia on a full tummy. So it was rescheduled. The next available time? Today. So after another long weekend of hanging out, this morning Ethan underwent the neurological EMG and NCV tests.
2. Herein lies our victory. The results came back this afternoon negative, so there are more neurological issues that have been counted out! Thank God -- this was a big deal more so emotionally than anything else!
3. We are still on the pattern of a couple of days of weight gain, followed by a couple days of loss. He seems to really like to weigh around 14 pounds and not want to get any heavier. Even though we're heading into swimsuit season, we told him that he didn't have to worry about being fashionably thin. We'll see if that helps.
4. Ethan now as a PIC line instead of an IV, which in my opinion should have been done long ago. Major improvement over blowing IV lines every day or two. His formula has also been changed out to the more easily digestible stuff, and he is still receiving feeds through an "NJ" tube into his intestines.
5. I insisted Ethan be taken off of the drug Reglan which was prescribed to help his motility, but I also believe the drug is garbage and has been proven to have neurological side affects. The majority of doctors agreed, so I'm not sure why he was on it in the first place, but he's off it now.
Before ever dealing with complicated medical issues, I always assumed that the doctors knew about almost every condition out there, and it was just a matter of whether it was treatable or not. After having Ethan in the hospital as a 7, 8, and 9 month old, I have learned from our stay (as well as the stories of other patients that we have met) that there is much that is still unknown to the doc's. I suppose it's a testament to the complexity of the human body -- one that is not here by mere time and chance but by creative design and purpose.
As with every update, there's a story to be told about what's been done to Ethan and what they're going to do. So here's what the rest of the week has in store:
1. Tomorrow (Wednesday) morning, Ethan is getting a CAT scan of his lungs to ensure that the aspiration hasn't damaged his airways. If it has, there will be another bronchoscopy to determine the issues, and likely a fundus surgery (Nissen Fundoplication for those who are preparing for the quiz) which will tighten the esophageal chamber and (hopefully) prevent reflux and the accompanying aspiration. This prevents everything from coming up, including when you have an upset stomach, so it doesn't sound fun.
2. On Thursday or Friday (I'm guessing Friday) they are trying to coordinate a "surgery day" where they can do multiple procedures under one general anesthesia (which will be number 7 or 8 at that point). He will likely get a "GJ" tube, where they go in through his side and attach his stomach to inside his torso and put a tube into his stomach (G) and one into his intestine (J). They will also do a muscle biopsy while he's "sleeping", and a bronchoscopy if necessary.
3. Once the GJ tube is in, we are pretty much committed to feeding him via tube for an extended period of time. Ethan will likely not take any food or nourishment by mouth for 8-12 months, and we will have to re-train him how to eat when he does. We will go home with the machines and all -- so it will be a long haul.
4. Unfortunately this still doesn't answer what is going on, so we'll be doing all this just to continue treatment at home while we still try and figure it out. He needs to consistently gain weight, or we will find ourselves back in the same situation again.
5. Guess what? We're not getting out this week, if you haven't pieced that together for yourselves already. So as always, we'll make an optimistic goal for release early next week. I make that goal with great reserve, but a goal nonetheless.
I now formally deputize you all as Honorary GI Specialists!
I will conclude with an uplifting note. Ethan has an amazing spirit, and his smile and attitude have infected the entire medical staff. Today, he was fully sedated with an oxygen mask on after his procedures and Robin went to move his arm and he awoke. Coming out of deep anesthesia he looked around, smiled, and waved. When we got back to our floor, the nurses asked how long he had been back because they couldn't believe that he could just come out of anesthesia and a procedure with an immediate smile. It's a reminder to me that a good attitude can go a long way in serving as a witness of my character to others. If a 9 month old can do it, so can I! The greatest testimonies are often those when no words are ever spoken (which is particularly difficult for me!).
Thank you all for following along with us on our journey and supporting us in so many ways -- too many now to even try to adequately list out. We feel blessed beyond compare, and have made many new friends and deepened our existing relationships. I have heard from many that this update now reaches across the country and has hit prayer lists in states all over -- WOW! I feel a burden to improve the quality of my writing so that everyone stays captivated!
Until next time. . . .