Tubes

     I might as well finish this story since I posted the first half, even though I don’t like this part of the story. Sorry it’s long, but it is what it is.
    Simon did indeed have the tube surgery done on Monday. The last time he could nurse before he went under was at 5am, so I woke up at 4:45 to have time to nurse him and bathe him (he had to be bathed before his surgery to prevent infection), then I was on the road at 6am to make sure to get him to the hospital by 7. We waited in various degrees of waiting rooms, were prepped by multiple nurses and told more about what they would do and the implications on him being so young, and changed him into his hospital gown. We were left to wait plenty, so I took the opportunity to take some pics of him with my phone. I think he has just the cutest, silliest little smile and I love it:

 

     I honestly wasn’t ready for what came next. SOOOO many people downplayed getting tubes, implying it’s hardly even surgery; an in and out deal that the baby won’t even notice. Of course, most of those people were speaking from their experience with their own children, and their kids were older than Simon when they got it. I don’t know just how much of a difference that makes, but I assume it’s a big one. I know that it’s a minor surgery, I totally get that… but the doctors were definitely letting me know that his is an extreme case and that he is way way way younger than they would ever normally consider getting the procedure done. Not to mention, once you’re there in the pediatric surgery unit at the hospital and children are getting surgery all around you and the staff is quiet, pensive, and on eggshells when speaking with you and telling you how small your baby is for any type of surgery and how they hope it will go well— it definitely upped the “oh my, this might be a big deal” feeling inside of me.  
     He was only actually under for 10 or 12 minutes or so. At 9:20, the doctor came back smiling and told me that he thought everything went well, then shook my hand and told me to follow up with him in a few weeks. Then just as he left, the anesthesiologist came trotting up to me looking worried. He said, “Are you Simon’s mother? Come quickly, he isn’t reacting well”.
    Thus began the worst 2 hours of my life. I went back to the surgery corridor which was long and had bed after bed separated by curtains every few feet. Usually you’re only supposed to go there and pick up your baby then move on, but that was not the case for us. Most kids just take a few minutes of fussing as they fully come out of anesthesia, then they are taken by their parents to recovery. I got to Simon’s bed to find him SCREAMING and writhing in pain. I seriously didn’t know he was capable of even making noises like that. It was truly blood curdling and my heart instantly started to break into little pieces for him. He was kicking and squirming in discomfort so much that all of his monitor readings were coming out really poorly and many of the tubes and instruments couldn’t even stay on him. I’m sorry if this sounds over dramatic, but I really can’t say it any other way. It was just horrible. Nothing I could do helped him at all. He wouldn’t nurse, and he would barely stop screaming to breath. He is usually just the most chill, laid back, non-crying baby you’d ever meet so I knew that if he was acting that way, it was because he was really hurting.
     Simon was deemed too unstable to move to the recovery room like normal patients, so we had to stay in the surgery corridor. My nurse’s name was Helga and she was from Norway and had an accent that would have made me giggle in any other circumstances. She was super nice and very concerned for Simon. When she could see that he was in unusual pain, she called the doctor and named 3 meds that she thought could help him. The doctor told her that the meds she suggested were way too much for such a little baby to take and would only be used as a very last resort, if they were an option to be considered at all. I just kept rocking Simon and patting him, rubbing him, singing to him, and doing anything else I could to try to help him know that he was going to be okay (and those things weren’t too easy to do when he was attached to different monitoring machines that were all beeping alarms at me).
      A half hour passed and he still hadn’t even stopped screaming for more than a gasp to get more air. He was wriggling, grabbing at his head, and just making as much noise and display of “ouch!” as he possibly could. Helga called the doctor and he said to give Simon some Tylenol with Codeine and that should do it. It didn’t seem to help at all though. He was still just SOOOOO sad. Behind his ears and the whole back of his head was dark purpley gray, and his feet and legs were turning colors. He kept looking at me with big sad eyes begging me to help him and there was nothing more I could do! It was horrible!!!
     Another half hour passed and the tylenol codeine hadn’t helped him at all, so Helga called back again and the doctor was concerned and said to go ahead and give him another of the meds that he originally said Simon was too young for; Toradol (which I shouldn’t have looked up later because now I feel bad). To make things worse, they had to give it to him in a shot. As if he needed a big fat poke in the leg!!! But yeah, we thought it would help ease the pain so we did it.
     It didn’t seem to work at all though. He just went on crying and screaming and writhing back and forth. Not nursing, not cuddling. Just kicking, grabbing his head, and looking up at me for a relief I couldn’t give him. Tears were boiling out of his eyes, dripping down my arms, and landing on my shoes. It was absolutely gut-wrenching. Being a mother is SOOOO hard! I nearly broke down with him multiple times but I pulled it together and recouped before I actually broke into crying myself. Simon didn’t need me crying, he needed me to comfort him and tell him it was all going to be okay; so that is what I tried to do. After one hour and forty minutes of this, the doctor cleared Helga to give him Fentanyl, which is a narcotic sedative. No one wanted to have to resort to this one, but it was all there was left to do to help the little guy out. This came with another big fat poke in the leg that made him even more upset (if that was possible), but within minutes he had calmed down and got a very dopey/stoned expression on his face. He went nearly totally limp in my arms, and I was finally able to hold him and nurse him. All together it was an hour and 50 minutes from when I got to the surgery corridor to when Simon (drugged) was considered stable.
     We then went to the recovery room where we had to stay for an hour or so more to make sure he was okay. I was a bit of a zombie at this point. Everything was so worrisome and emotionally draining. I had regretted getting the procedure so much, but at the same time I can’t stand the thought of him losing his hearing because his eardrums keep perforating had we not had the tubes put in. I was just really torn up over the whole thing; I just wanted to crawl into a hole. Unfortunately, these tubes will probably only last 4-5 months so we’ll have to do it again soon. I refuse to even think about that at this point, but he will be a bit older then so perhaps it won’t be so bad.
     We were finally released and we drove home. Simon was under the effects of the drugs from the hospital until 6pmish and he just slept and slept and slept some more. I tried to wake him up to feed him as often as I could that night and the next day, but he was pretty intent on sleeping.
     Wednesday he was more or less his normal self, so that was quite the relief. His ears have bled some and have had the nastiest drainage ever over the past few days. The doctor says it is normal for some drainage, but not what he’s getting so we need to extend the use of antibiotic eardrops and keep an eye on him because it might be an infection of the tubes. He’s also grabbing at or covering his right ear CONSTANTLY and will not leave it alone, so I’m worried there’s something wrong there. He also will not stop sucking his fist, which makes me think he’s always in need of soothing. I don’t know, we’ll just have to follow up with the doctor next week to make sure that everything is as it should be. Honestly, this poor kid has been through enough!!!
    Thanks SOOO much to the people who have helped us out this week with either meals, watching Addie, or with your prayers and kind thoughts. This has all been unexpectedly rough on all of us, so I’m really just looking forward to the day when I can say it was all worth it and Simon is just fine and dandy. Until then, we really want to thank everyone for the support and love they have shown us.