Surgery

We brought Micah to Primary Children's Hospital on Wednesday so they could begin to clean out his colon for surgery the next day. The process was terrible for him, and I hope we never have to do it again. The hardest part really is him not being able to eat for six hours. Micah is the kind of baby that likes to eat every single hour, and we've had so many problems with getting him to eat and put on weight that we let him. We do what works for him, and don't mind doing it. 

It was hard seeing him smile up at me from his crib the morning we took him in, knowing that this time we brought him to the hospital he was feeling fine and he was happy. Knowing that this was going to change that, at least in the short term. So we went in and got sent to Imaging so that they could take an ultrasound of his spine and tailbone to make sure everything is there. It was. So we were sent up to his room on the third floor to be admitted.

To clean out his colon meant that he could have juice or pedialite, and as much as he wanted, and they would give him large amounts of laxatives to clean out everything in his system. By three in the afternoon he was having water colored diarrhea, and he wasn't very happy. We were unable to walk the halls with him because he's struggled with infections, so it wasn't safe for him or the other babies. We also have to wear yellow paper robes when we're in the room. Which means sleeping in the robes, which let me tell ya, is not fun. 

They took his ostomy bag off when he got there, and wrapped a diaper around it instead. The nurse said she had never worked with an ostomy patient before, and I'm not sure that this was the best course of action at all. It leaked everywhere, and when we were changing it his stoma would squirt the water poop 18 inches away from him. I think I would have preferred emptying his bag more often, but that's just me. 

At 5 pm we found out that on Thursday he would be the last of his surgeon's patients with his surgery starting at 3 pm. Keeping in mind that this was a four hour surgery, we were less than thrilled. I almost choked when I heard the time, as I'd heard that they send the youngest children into surgery first at this hospital. My husband and I just had to take a deep breath and not focus on the time. When there's nothing that you can do about it, it's best to take it as it is. 

Micah had an okay night, and at 9 am he was due to stop taking things oral altogether. There was a problem with this, however, because he no longer wanted clear fluids. He wanted his formula, dang it! As it got closer and closer to nine I began to panic, but came up with a solution that I wasn't thrilled about. I talked it over to the nurse, and we gave him the 6 ounces of apple juice through his NG tube instead of by mouth, in hopes of getting him as full as possible for as long as possible to keep him the happiest possible. 

He really didn't seem to mind not eating again until about an hour before surgery, I was really impressed with him. When that hour hit, though, it hit hard. We stayed standing with him and holding him, alternating between the two of us. It was important to us both that he feel as loved as possible before going into the surgery, and I think we accomplished that. By the time it was 3 o'clock, and time for surgery, Micah was smiling and playing with his keys. It was so good to see him happy even with this all going on.

3 O'clock came and went, but we were prepared for that. We started wondering what the hold up was when it got closer to 4 and we hadn't heard anything. Micah was starting to get unhappy again, and I really didn't want him worn out before surgery. I was told to expect surgery to be around 5:30 or 6, so I put him down to sleep a little bit before he went down. Not ten minutes after the nurse had told me what the wait time would probably be, somebody came to take him down to surgery! We were thrilled, and Micah was happy being wheeled down. He was smiling and laughing, talking to anybody who would listen.

We went down, signed all of the papers and talked to his team of nurses and surgeons. I stayed with him as long as possible, which wasn't very long, before I was booted out and he was taken by the anesthesiologist. Both my husband and I gave our son kisses and loves, assuring him of our love for him and getting him to smile one more time before he was wheeled away. It was hard watching him go, knowing that I wouldn't see him for hours when he'd be in recovery. Even harder knowing that I probably wasn't going to see him smile for a day or two.

My husband and I waited together in the waiting room for two hours before I started to get worried. They had called last time he'd had surgery to tell us that they were starting, and I hadn't received any news. I was frantic, worried the surgeons would be tired and be sloppy. I really shouldn't have been worried. Doctor Meyers has been wonderful to us, and she is very dedicated and talented at her job. I would recommend her to anybody for just about any surgery. She appears to have a very good, steady hand during surgery, and gets very 'into' it. Anyway, I called the attending nurse in surgery and they had started almost immediately after I had kissed him goodbye, and they were halfway through his surgery already, barely making the first incision. The nurse assured me that she would call again in an hour and I hung up.

We put on Star Trek to try and watch it together, hoping to distract ourselves with something enjoyable. It was no use, and I should have known that. My legs were shaking, my hands were clenching my arms. I asked people not to come sit with us, and I stand by that decision. It did make it a little easier, and even though it was impossible to forget where I was and why I was there, I was able to laugh at a few jokes on the show and cuddle with my husband. It was an incredibly private and intimate time for us, we're newly weds AND new parents. We rarely get to handle these things ourselves unless we ask people to leave us to deal with them. This is new territory for us, and as young, newly wed parents of a four month old we need a little space to breath sometimes. Not from him, but from the world itself. Things moved incredibly fast, and it helps to just be alone together during these moments to support one another and to work on loving the other person better than the day before. No offense to my parents or his parents or our friends, but during this moment I needed to know my husband's love for me and that he loved our child. To know he loved me for bringing him his child, and that even though this has been hard it's also been joyous.

The hour came and went without the nurse checking in, and I worried more and more. She called two hours after our last call, and told us only that he had lost minimal blood and his vitals were good. When asked if the surgery went well she said that Dr. Meyers would be out to talk to us about that. You can bet on the fact that I was frantic. You can be assured that after an hour an a half had passed I was about ready to claw on the operating room door. And you can also bet that when she came in and her first words were 'It didn't go good' I half jumped out of my chair, my eyes welled up, and I had to swallow bile that had come up. She had to assure me that Micah was okay before I sat all the way down again. And then, like doctors do, she proceeded to tell me why he was, in fact, not okay.

I was shaking, and my teeth were clattering, as she told me that his colon was not thriving in the way they wanted it to. They had taken out half of his colon, and half of what was left turned blue when put in the position that it needed to be. She had spent that extra hour fussing with the arteries and trying to make it work. She also spent that time wondering if she should get it over with and take out that  chunk of colon that wasn't thriving. She decided to give the colon a chance as it is, hoping that his artery was having a spasm and would relax and supply blood to the area. If not he'll get a very serious infection as the colon begins to die. She told us that it was a 50/50 chance that it would have to come out, but that she wanted to save it because, other than the artery, it was healthy colon. Losing that colon would also increase his diarrhea and constipation, and make potty training harder for him. He would struggle more throughout his life.

We thanked her, and she looked so sad that it hadn't gone the way that she had planned it to. She apologized several times before she left, giving us both hugs. We really are thankful to her, too. I want that colon to get the chance to survive, if at all possible. I want his quality of life the be the best it can possibly be, and if he loses that bit of colon then we will help him and with a little extra work he will lead as normal of a life as we can give him. There are success stories of having even less colon than he would be left with, and this makes us even more hopeful. At the same time, if there is nothing wrong with that colon and it's possible to save it, you had better believe we will do whatever possible before taking it out. We owe that to our son. We owe him an advocate to speak for him while he cannot, and we will be that for him and try to give him the best options and life we can.

Seeing him in recovery was very hard, and I don't imagine it gets a whole ton easier no matter how many surgeries your child has. That's still your baby laying there in pain, occasionally crying but not having the energy to get out all but a couple whimpers. It's hard when the nurses are saying he's in a lot of pain, and you stroking him only makes it worse. It's difficult to watch as they try to give him as much morphine as they can give without making him stop breathing. I cried silently for my baby while we were in recovery, and I cried for him when we got up to the hospital room. It's hard to not be able to comfort your child in the ways you're used to, and to know that other than talking to him quietly you can't do anything for him. 

I might be overly protective of my son, as some people have commented on, but my son is happy. My son is right on schedule developmentally. My son smiles when I come in the room. He has never been sick with things unrelated to his Hirschsprung's. Never has he had a cold or a cough, and with much work he is a healthy size and weight. I don't really give a flying *pardon the language but I'm very passionate about this* fuck as to what those people say. No he does not need to be around more people, and no he does not need to go more places. He has already had problems with Hirschsprung's related infections and he doesn't need more things going on. My son goes outside, just not around a lot of people. I don't take my son to the store or to church or to very many outings. People forget or shrug off the doctors saying to try to limit people and places for three months even for healthy babies, and Micah is only four months. I owe his health and being able to get him into and through this surgery to not exposing him to any unnecessary germs. I am his mother, and believe it or not he has done better this way. He is not unhappy or behind on learning things. I will make the choices when it comes to this because I have seen what works for him and what makes him happy. The times he has gotten infections is when we become lax and let a lot of people around him. It may be coincidence and it may not be, but nothing you will say will change it.

Sorry, that rant is over now. 

I've dedicated my life to my son ever since I found out I was pregnant, and since he's been born I have bent over backwards to protect him. Seeing him in pain and being helpless about it killed me. I hope that after this I never have to be in that position again, but I know that many things that come with a child are things that I wont be able to make disappear for him. I'll most definitely be helpless again.