Just got the house to myself. Typically, having Kevin take all three boys out to a practice would give me a huge smile on my face. The house to myself....so quiet. Instead of laundry, dinner & all the other things that are staring at me, I thought I'd start this blog dedicated to filling everyone in on Josh (& other miscellaneous things). Who would have thought that taking to my keyboard would be the easiest way for me to fill people in & help me cope a little...
I first need to bring everyone up to speed on how we got to October 2, 2012 with our first baby having a diagnosis of ulcerative colitis (or UC as many call it). Last fall Josh was having some issues where we spent some time at our pediatrician's office & ultimately one trip to the GI (gastrointestinal) department at Cincinnati Children's Hospital. All of the doctors thought he has a small fissure, or tear, in the wall of his rectum. They sent us away with the thought that this wasn't a big deal & it would heal itself. That was November of 2011. In late January he began to have more issues which took us back to our pediatrician who, through lab work, found a common bacterial virus which we treated with your ordinary antibiotic. After Spring Break, the symptoms got worse. We ended up back at Children's with Dr. Palermo. They did more lab work that discovered he was positive for C-diff. They put him on this crazy antibiotic (side effects could include black hair growing on your tongue) which seemed to help initially. It was then, in June, when Josh had to have his 1st colonoscopy & upper endoscopy. The upper endoscopy came back normal, which indicates he most likely doesn't have Crohn's Disease. The colonoscopy indicated a lot of swelling in his colon (large intestine) which gave him the diagnosis of Ulcerative Colitis.
Then came the medications. He began taking steroids which were followed by 2 UC medicines that didn't work. The third medicine seemed to work some & we were able to taper off of steroids back in late August. In early September we went back in for a check with Dr. Palermo. He ran more lab work which indicated that there was a lot of inflammation still in Josh's colon. He recommended we do another colonscopy and another colleague of his concurred. After having 2 sets of opinions and being well aware of how Josh is doing on a daily basis, we decided to proceed with the 2nd colonoscopy. This was done this past Monday, October 1st.
The official results of the biopsies aren't in yet. What we did find out is that Josh's disease is a lot more extensive than we were hoping for. It spans the entire length of his colon. The inflammation is in the moderately severe to severe range. To put it simply, all of the medicines he had been taking didn't work. Total & complete bummer.
So, here we are now with a new plan. Both doctors have stated our next step is to put him on another medicine called Remicaid. It is a serious, serious drug. It is administered through an IV over a 4 hour period of time. He has to have one treatment this week (or as soon as Anthem gives us the thumbs up), another treatment in 2 weeks and a 3rd in 6 weeks. If it works he will continue these treatments every 8 weeks indefinitely, or until it no longer works for him. If it doesn't work, they will double the dose & follow the same timeline. If that doesn't work, they will decrease the amount of time between doses. And, heaven forbid, that doesn't work...we will hope there is another medicine to try before we have to turn to surgery to remove his colon.
That's where we are in a nutshell. You can google Remicade & surgery for removing a colon...but I wouldn't recommend it. It will make you sad & it will break your heart. Trust me on this one. What I would recommend is praying for Josh. If you saw him right now, you'd never even know he's sick. Seriously...he's at soccer practice as I type. He's got such an amazing spirit & he's unbelievably strong, in ways I could never have predicted. He's got the best group of friends & a support system bar none. He truly is an amazing young man & a gift to me & Kevin.
Once I know more & he undergoes these rounds of medicine, I'll post again. I'll try to keep all of you updated as much as I can. I can't tell you how much your love, friendship & support for me & my family has touched our hearts. Keep it coming...our little man is going to need it over the next couple months.
xo
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