Hirschsprungs disease is very complicated. There are days when I almost forget that my son is any different than anyone else, despite the bag changes and meds given. We have had a "good streak" or so what I call it, for nearly 7 months. Mateo has had no serious HD related complications, and has yet to be a patient in the hospital since his surgery in October 2010. Things have been good. Great, in fact. His growth has been amazing, along with his weight gain. He has been weaned off his G-tube feeds and has been doing great. It was a challenge at first to get a decent night's sleep, but he now sleeps through the night with out waking up feeling hungry. (but boy does he want breakfast!) So, really, things couldn't have been better up until about 2 weeks ago. Then ugly HD rears it's head...
Mateo started complaining that his "pee pee" hurts. So I take him to his pediatrician and have him checked out. The doctor looks at him, takes his temp (normal) and decides we should get a urine sample to check for a UTI. Well, Mateo isn't potty trained ( no where near it) and will not pee on comand. So when the nurse handed me a cup and asked for a sample, I couldn't help but laugh and ask if she's serious. From there we had 2 options. They could put in a catheter, which is VERY uncomfortable, but accurate, or they can "bag" him, which does not cause any pain, but isn't as accurate. I voted for the bag for Mateo's sake, he's poked and prodded quite enough in my opinion... Well, he wouldn't do his duty, so I took him home, and returned the sample later that day, which came up negative for a UTI.
We go about our business, and occassionally Mateo would make a comment about his pee pee hurting, but I didn't think much of it. I figured it was mental-- not wanting to potty train. Well 3 days ago on May 2nd, I was getting Mateo ready for bed, and when I changed his diaper, much to my surprise there was some brownish smearing in the backside. I was concerned, but being 8 at night, there wasn't much for me to do until morning. In the morning, I get him and change his diaper again, and there is more smearing, with a small (pinky finger tip size) piece of what looked to me like a bowel movement. Yes, I thought the same thing... HOW IS THAT POSSIBLE? So I do what I always do, jump on Facebook and ask the other Hirschsprungs families for advice. I of course also call Dr. Wadie (surgeon).
Dr. Wadie says this is totally normal. That while in surgery, he had left the left side of Mateo's colon, and that it does make secretions that will be expelled and that they look and smell like bowel movements, but definately aren't. Ok, I understand this, but why is he complaining that his pee pee hurts? Dr. Wadie suggests that it is a UTI, and refers us back to the pediatrician. We go, and since we've already tested him once with negative results, he recommends doing the catheter. I consent, because I just want my baby to get figured out and to feel better. Well they do the catheter, and from Mateo's reaction, it was VERY painful. And it was all useless. Mateo had a "dry bladder" and they ended up bagging him again and sending him home. I take the sample in this morning and wait ALL day for the results.
I'm sitting at work when I get a call from my aunt who takes care of Mateo while I work. She says that Mateo is complaining more and more of pain, put now pointing to his bum. He is also not being active and wants to be held and to sleep. I call Dr. Wadie back and tell him that the secretions are still happening, and they smell horrid. He tells me to wait for the results of the urine test, and that if the results of that are negative, that it could (VERY RARELY) be Enterocolitis (EC). EC is an infection of the colon and if not treated is fatal. So the thought of this scares me, so I hope for the best.
The results come back and are negative for a UTI. So Dr. Young and Dr. Wadie converse and decide to put Mateo on an antibiotic called Flagyl to treat EC in case that is what he is suffering from.
I'm worried about the EC but at the same time, happy to get some sort of answer and to help my little boy.
Then comes another issue. INSURANCE. Because I only work part time so that I can take care of my son, I don't make a ton of money. My son has OHP insurance (from the government). Well, I feel that because of the insurance he has, he gets treated like a second class citizen. The doctors faxed in his script, and because of his insurance, the pharmacy can't guarantee me that we will even have the Flagyl before the weekend. So my son is supposed to sit here, hurting and having an INFECTION, and deal with it until the pharmacy can make sure they will get there money from OHP. I get so frustrated sometimes, I could scream, kick, cry.... ARGH. He's just a little boy!
The one and ONLY thing that helps me to keep my sanity through all this is the little 2 year old boy who looks at me and sees his HERO, his mommy. I love him more than life itself. And it's hard not to fall apart sometimes... But I know that I have to be strong for him. He is a sweet little person and doesn't deserve any of this. I hope and pray that some day someone out there will find a way to prevent HD and to cure it.
When that happens, it will be nothing but Good Streaks from then on!