I knew he was breathing loudly and with a little more effort than normal, but he didn't seem in distress. I was looking for answers as to why he was so loud and didn't like the answer I got. Paralyzed vocal cords??? How and what caused it? They just kept telling me if it doesn't clear up, if he can't breath, if he was to get sick it would be devastating. Ok first off, let's not use that word when talking about my son and his possible outcome.
Dr. Polavarapu was one doctor you could love to hate, he was brutally honest. While I respect honesty let's not jump to worst case scenario with such a hard blow to my mental and emotional capabilities. He did rounds and asked if the doctors had said anything, knowing they did, I said no. I wanted to play dumb and see if I would get a different story from Dr. P. He looked at me strangely and then moved on to another room. Within ten minutes he was back in the room and had closed the door behind him. Here was when my mental status changed for the next week. He really was pushing the trach on us hard telling us it would be the best thing for Eli. I wasn't convinced, I wanted more testing, prove to me that my son needs one. When you tell me that this thing is going to be semi permanent and you won't re-evaluate his cords for a few YEARS, you want me to take this lightly and agree right away. I'm more stubborn than you can imagine and this doctor wasn't going to trick me into it.
I am going to be honest and say this caused a major disagreement between Rafe and I. He wanted us to do whatever was the best for Eli and to just get it over with it if it needed to be done. I don't think he was understanding that the trach was a major life adjustment even more so than just Eli's cardiac issues. Besides that it would cause delays for Eli. I was scared that I would never hear him talk and he wouldn't ever be able to eat like a normal person. (When I met with the ENT he said both of those things would be possible just with a little more training than normal.) I wanted a second opinion and told many doctors and residents I was not agreeing to anything without further testing. If I wanted another ENT doctor to look at him I was more than welcome to transfer to another hospital (uh, excuse me?). Fine then I will demand his original doctor to do more testing. Dr. Marra wanted to do a broncoscopy and was amazed to find out his cords were not paralyzed just irritated, possibly from the NG tube and acid reflux. He wanted the NG tube out asap and a stomach (G) tube put in.
Four days later Eli went in for his second surgery in his short little life. He had his G tube placed and had a Nissin procedure done. The nissin is where they take a part of the stomach and wrap it around the bottom of the esophagus to prevent acid from going back up. The surgery went well and he was on the road to recovery. When he was wheeled back to his room from surgery there were about 10 people in his room getting him all situated. Two nurses were arguing with the anesthesiologist and were making me very nervous. The nurse was saying Eli was not responding to the light in his eyes and kept repeating that, even though the anesthesiologist said that was to be expected due to the drugs they had used to sedate him. Hearing your son is not responsive is scary! I immediately got sick to my stomach and had to walk out of the room. A few minutes passed and they said everything was fine and he should be awake in about an hour. Deep breath and release, thank God! We were warned by the ENT that if the noise continued a tracheotomy was still possible in the future. I am happy to say the noise stopped, who knows why but it stopped!
The next week was pretty uneventful. I'm not really sure why it took us another week to get released but it did. We have been home now for almost a month and things have been going wonderfully. Eli is slowly gaining weight. He is reaching his milestones though so that's important. He started smiling about a week and a half ago and is starting with the baby noises. Yesterday he completely came off of oxygen and his numbers are looking great. I am happy to say that Rafe realized my stubbornness paid off for once in my life. We avoided the trach because I demanded more testing and I stood my ground. I've learned I need to really stand up for Eli and be his voice. Doctors sometimes take advantage of people who don't stand up for their loved ones. I have even had a doctor or two admit that. Not advantage as in they are gonna do every test in the book to run up medical bills, but they just jump to the problem solver without finding the source of the problem. Trust me I love doctors and respect their work but sometimes it pays off to give them a run for their money.
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