We’ve hit another milestone in the FraPol household - John had his feeding tube removed! Back in June, when he roused from the coma and the doctor was able to safely remove his breathing tube, John wanted to eat and drink right away. An ICU nurse did a preliminary test to make sure that was OK. Unfortunately, his swallow had weakened so much that it was not safe for him to eat and drink normally. (Those muscles weren’t in use so they atrophied during the 2 weeks he was intubated.) There was a high risk he would aspirate and worsen his pneumonia or develop another one. A speech therapist did further testing and confirmed that in order to get sustenance as he did therapy and healed, John needed a feeding tube. The healing was going to require enough time that a nasal feeding tube wasn’t appropriate and he instead needed a G (gastric) tube. It’s inserted through the abdomen directly into the stomach. I was told it would need to be in at least 6 weeks. At first, I was devastated, having only ever heard of feeding tubes in end-of-life scenarios. But the speech therapist and doctors assured me that John would do therapy and could absolutely get better and regain normal function. Then a palliative care doctor came to chat with me one afternoon. He was trying to be helpful but completely terrified me. He gave me this pamphlet:
With hindsight, I understand that he just wanted me to think critically and carefully about making the best decisions for John. I told him that John and I were "very one-day-at-a-time kind of people" and while we understood the potential outcomes, we remained hopeful. I also told him that the doctors had assured me he could fully recover. No matter what I said, he responded with, "yes, but…" He reminded me John's cancer could come back and that he might never come off the feeding tube. He also implied it could be selfish to keep a family member alive if they didn’t want their life extended. With the benefit of time, I understand that his job was to encourage families to have explicit conversations about wishes in less-than-ideal circumstances but his delivery and demeanor felt brutal. After he left, I was so scared and confused that I frantically went to each of John's doctors and his speech therapist to make sure I hadn't misunderstood what they told me. Then I sat in the lobby of the hospital and positively bawled into my Mom's arms.
Everything was magnified by the fact that John was still pretty confused. (Apparently that can be common after a coma. Plus sedation and being on a ventilator aren't exactly every day occurrences, so your brain gets really mixed up.) He kept asking me to get his clothes and shoes out of the trunk of his car so he could go home. At one point, he said there was someone named Collin under his bed fidgeting with his legs. I later found out he was having all kinds of strange hallucinations during this time. In one of them, my Mom was dressed like a voodoo queen! 😄
Also, keep in mind that John could barely speak. A breathing tube is inserted between a patient's vocal chords, which are sometimes bumped during in- and extubation and temporarily impaired. At best, his voice was a very faint, hoarse whisper and most of the time, he reverted to using sign language. (His parents are deaf so he grew up using ASL.) Even our most productive conversations were confusing and disjointed.
When I talked to John about the feeding tube, he said he didn't understand why it was necessary. We explained it to him over and over and he'd say, "Why can't I just eat??" like it was the obvious solution to a very-simple problem. In my heart, I felt that if he were at himself, he would absolutely want the feeding tube so he could get nourishment while he got better. I cannot say enough how grateful I am for the family and close friends who helped me walk through that time.
After the tube was inserted, he was able to start getting a nutrient-rich formula through it. (By that time, he'd lost about 40 pounds!) This helped him feel better and have increasing energy. As he did speech therapy, he was slowly able to start eating certain foods – just purées at first. We have one of those bullet blenders and let me tell you, I blended the shit out of a lot of different foods. 😉 Week after week, John worked his way back to safely eating normally. He still has trouble with a few foods but says he feels he's regained about 90% of his eating function. When I look at him now, it's hard to imagine how very sick he was not long ago. I know I keep saying that but it's because his progress continues to astound me. ❤️