To All:
Thank you all for your continued support and prayers throughout all of the trials with our little Ethan, which continue to drag on. As I type, two of my other sons, Jacob and Nicholas, as well as myself, now all have pink eye, so we are staying home for the day so we don't contaminate anyone else. With each update, I think my hair gets a bit more gray, and I might start pulling it out soon! It's been a long haul, and unfortunately it doesn't look like it's getting any shorter. Last week we hoped for answers, possible surgery, and maybe even release this week -- but I think that was more optimism than reality. Here we are on Wednesday, and it doesn't look like we're getting out any time soon. We are on roommate number 12 and counting.
Ethan's conditions have remained a constant source of frustration and a bit of a mystery to the fleet of specialists we have working with him (Pediatrician, GI Specialist, Pulmonologist, Geneticist, Neurologist, and Physical Therapist). Here's the rundown:
1. Ethan has been on an NJ tube for a week-and-a-half which puts his feedings directly into his intestine to hopefully avoid the aspiration issues. Last Friday, he had a bronchoscopy (again) to see if the results would be better in his airways than when he was getting food into his stomach. We didn't get the results of that test until today, and they were not good. His lipid count was actually higher than it was when stomach feeding, so he's still aspirating substantially. If he had no lipids in his airways, they would have likely put a "J" tube surgically into his side for prolonged feeding. With these results, they are not even sure what they are going to do next and are conferring as I type.
2. The results of the bronchoscopy also showed that he had a bacterial infection in his airways, which he is on antibiotics for, which has given him diarrhea. They believe that the infection is minor, and that if he was otherwise healthy, would likely not have treated it.
3. Ethan is on his sixth IV, and it is getting increasingly difficult to put in a line. Two nights ago, they called in the "IV Team" and it still took them six tries (pokes) to get it in. He is very bruised up. His fifth line ruptured and filled his arm and hand up with fluid. With that said, this afternoon he is getting a Picc line (or central line) which will provide an IV line that goes close to the heart in a larger vein and is much less likely to come out and can be used longer-term, and can provide TPN feeding in the future if needed (which I will explain in a later update if we get there).
4. Ethan's muscle tone and lack of strong reflexes are now also of primary concern, and a Neurologist has been called in to deal with that. He will be getting three tests from the Neurologist: 1) Nerve Conduction Velocity (NCV) Test which measures nerve conduction and muscle action; 2) an Electromyography (EMG) which tests the electric activity of the muscles; and 3) a Creatine Phosphokinase (CPK) blood test which is a stress test which I don't fully understand the purpose of. For the first two, he will be sedated and as I understand it they are both invasive procedures.
But wait, there's more. . . . .
5. The Geneticist is running a DNA workup to test for issues related to peripheral neuropathy.
6. They are changing his formula through his feeding tube to something that digest more easily -- I forget the name of it. . . . He is on two medicines through his tube as well, one to manage the reflux and the other to help his stomach digest faster.
We are confident that we have some of the most competent and intelligent doctors working on him, but the confidence in their ability and smarts doesn't translate into comfort and peace-of-mind for our boy. I have gone from concerned to worried, and now I'm getting just plain scared. It's that weak in the knees and numb in the fingers and toes kind-of scared, and it's not a great place to be. Good sleep remains elusive for Robin and myself -- and Robin still hasn't missed one night in the hospital. Robin has received many visits in the hospital this week, and that has really helped her pass the time and feel supported -- so thank you for that!
There is literally so much going on right now with him that I think this captures the main things, but I'm not fully sure. Your continued prayers and support remain a source of encouragement, and the help we have received has been priceless. This past week, I've had to make some last minute calls several times to several people for help, and they have eagerly delivered. I hope that I can serve you all in the future the way we have been served.
I remember as a child my parents telling me whenever I had issues that they would take my pain for me if they could, and that I couldn't understand how much they loved me. As a child those words always seemed trite, yet as a father myself, they are deep beyond measure. I would literally do anything to trade places with Ethan, but know that I can't, so I just continue to hope, pray, and worry. The immediate prayer is for a successful anesthesia and Picc line this afternoon, and of course the long-term prayer is that the doctors, nurses, and medical staff would be blessed to use the full measure of all their skills, gifts, talents, and abilities to bring Ethan to health. And we know that God can work above-and-beyond all ordinary means to interject and work a miracle of healing in Ethan, and that He hears our prayers.
Calling out to Him now and trying to remain faithful,
Matt
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