Wednesday, October 3, 2012

The Battle Rages On

Poor must feel so neglected! Life has been crazy, to say the very least, since I last posted. And Noah's c. diff is still not gone. The whole world is probably sick of hearing the things I've been posting about Noah's battle over the last three months, but that's ok. I'm mostly writing about all of this for my own benefit, because I think certain experiences are important to remember.

So, to pick up where we left off last time, Noah was on a new medication and accepting the recommended quota of the formula the doctor gave us. We were seeing great results from the medicine, and Noah's appetite started to normalize. He completed the 10-day course of antibiotics, and we started giving him lots of high-quality probiotics to encourage healthy bacteria to grow again. We held our breath as we waited for a week to pass before doing another lab test to see the results. But on the fifth day after we stopped the medication, Noah started having major diarrhea again. Obviously, that nasty bacteria had not been killed. We knew before that there was a good possibility this could happen, so we quickly got a test sent off to the lab to confirm the presence of c. diff and got Noah started on a new round of the antibiotic. This time, we thought, this time for sure we will beat this.

Noah's appetite, in the meantime, took a turn for the worse. I'm not entirely sure if this happened because he felt sick, or if he just fell into a habit, or what--but Noah started to refuse almost all solid food in favor of this formula-smoothie-shake thing--the same shake that had originally saved us from possibly putting Noah on a feeding tube. Does anyone else see a remarkable amount of irony here? In the middle of August, I was depressed and worried about getting Noah to drink enough. By the beginning of September, the situation had turned completely around into a new, scary monster that I could never have predicted--getting Noah to eat. Not just eat more vegetables, or eat enough calorie-dense foods. Just eat. And he wouldn't do it. The formula won out every time, no matter what we put in front of him.

This worried and scared me out of my mind. Just a few short weeks ago, my baby's appetite had been ravenous and eager. Noah's interest in food quickly shrank and shrank, until he was eating, on average, about 5-10 bites of food (translating into roughly 25-50 calories) per meal. Sometimes, it wasn't even that much. I called our dietician for advice, and she reassured me that, through the formula-shakes, he was getting enough calories to sustain his weight and energy. She said that trying to force him to change would not be a healthy choice right now, since he was still sick with c. diff. I felt a little more optimistic that things would start working themselves out after that phone call.

However, things did not start to work out. Noah finished his 2nd round of antibiotics, and we waited a few days before doing another stool test. The fifth day passed, and the sixth, and the seventh--we saw no symptoms of a relapse, and Tyler and I felt so hopeful that this was over. When the results of Noah's test came in, the doctor called to say that, despite the lack of symptoms, the bacteria had not been killed. Noah would need to have another round of antibiotics. This time, though, he said that he wanted to try a different one, an antibiotic originally designed to treat--of all things--traveler's diarrhea. Tyler and I were not convinced that this medicine was going to help our son. In fact, when Tyler picked up the medicine, he asked the doctor, in a very straightforward way, if this medicine would work. The doctor essentially said that he had no idea, and that he was just having us try it because he didn't know what else to do.

We knew, at that point, that it was time to find another doctor. I called Primary Children's Hospital to get us an appointment with one of their gastroenterologists, only to find that they were very booked out and that the best I could do was set an appointment for November and put Noah's name on a wait list, in case there was a cancellation. That was two weeks ago. We're still waiting. But our pediatrician is using her influence to help us get in to Primary's sooner, and I have high hopes that we will be able to get in on Thursday or Friday.

Noah became ill with c. difficile nearly three and a half months ago. It was diagnosed two months ago. We've been through 4 different medications. Noah has not eaten a normal-sized meal for a full month. We've been to the emergency room, we've been threatened with feeding tubes, we've had to buy ridiculously expensive formula to whiz into his smoothies, and we're still waiting for the help we need to end this, once and for all. Most of the time, I try to pretend that all of this is "normal": I make the smoothies, I call the doctor, I take him in for lab tests, I shove medicine that probably won't work down his throat 4 times a day as he squirms and cries, I put miniscule amounts of food on his plate and, more often than not, wash 50% of it down the drain. And then, some nights, I stop long enough to think about it, and a very loud voice in my head yells that this is NOT normal, my little boy is NOT healthy, this is NOT ok--and I can't help but break down. And the only way I can pull myself back together is to put the facade back up and tell myself that this, for now, must be normal. It has to be.

My only solace, through all of the crazy, unforseeable twists and turns our lives have taken over the last three months, is that Noah, bless his heart, isn't old enough to be distressed by any of this. He has as much energy, as many smiles, as much laughter, as much intelligence and playfulness as ever. This helps my ability to be happy and optimistic tremendously.

The next time I post, I very much hope that it will be to share the good news of Noah's full recovery. The Lord has blessed us in many ways, especially in the wondefully supportive family and friends He's given us, and I have faith that our "normal" will be back to what it should be very soon.

1 comment:

  1. What a beautiful picture of Noah! I am so sorry that your little family has been forced to deal with this. Like Dory said in Finding Nemo, "Just keep swimming" and things will eventually work out. Love you!