**Updated to add - I was able to reach Dr. B right after posting this. Hospice will come out to draw labs then I'll start I.V. antibiotics when that is done.**
Noah's supra-pubic change went OK today. Our wonderful urologist Dr. T spent some time with us in pre-op discussing the problems we are having with the site. We are dealing with a fairly large (think the diameter of your pinky) tube that is surgically placed below Noah's belly button and going through his abdomen into his bladder. We are having a lot of granulation tissue which is a fancy way of saying that red, bleeding, sore tissue keeps growing around one side of the tube. This is painful and problematic. The entire area is also pretty stubbornly infected. This has been going on for almost a month.
Our pediatrician has cauterized the tissue with silver nitrate but this only works for about 24 hours. Since he had Noah asleep under general anesthesia, Dr. T used electric cautery to more aggressively burn away the affected area. He feels (as does Dr. B) that the granulation tissue isn't growing from his abdomen but is actually bladder tissue that keeps growing up and bulging out of the hole for the tube. This isn't like a prolapse - the tissue is burned away but because it refuses to heal, it grows back.
There is a chance that this more aggressive treatment will work and the area will scar over and heal, but since silver nitrate barely slowed it down, it's not likely. If this does NOT work, we will need to do some sort of significant surgery either to take down this stoma and do a completely new supra-pubic site or we will need to revisit some very difficult options that Jeff, myself, and Dr. T have always dismissed as too risky. Dr. T expressed concern that this is "Noah's body telling us he's had enough and that he wouldn't even tolerate a different tube in a different place." Obviously those are not words we want to hear, and I'm choosing not to dwell on them because A) today's procedure might work and B) I don't want to have to think about these other, much riskier options that might or might not even be ethical to consider in the big scheme of things.
As you can probably imagine, Noah is very, very uncomfortable. He needed several doses of extra pain meds in the recovery room. He's sleeping now but is curled up in a ball with his fist clenched around the button for his pain pump. I HATE seeing him this way, but honestly if this works it will be worth it compared to any other options.
The icing on the cake is that Noah has another bladder infection. The nurse was concerned about his urine this morning and Dr. T did a UA and culture in the O.R. When we spoke after surgery, he told me that Noah definitely had a bladder infection - that the urine was so obviously bad that he didn't even need to see the U.A. results and that I was to take him home and start him on antibiotics. The problem is that we've been unable to reach Dr. B (he's out of the office today) and we aren't comfortable starting antibiotics without knowing if he wants other labs drawn first. We only keep one kit for making one dose of antibiotics in the house - the idea is to have it on hand so that he can get his first dose FAST, then have Dr. B call our infusion pharmacy to order the remaining doses. It doesn't do us much good to give one dose if we can't get the other ones ordered, so we are holding off for now. The ideal time to start this is at 10:30 or 11:00 tonight anyway, so hospice is working on trying to track down Dr. B before we have to make a hard and fast decision later tonight.
We really want to get a jump on this not only because we want to avoid having Noah get seriously sick, but because he's got his sleep study Thursday. We've had to cancel multiple sleep studies because he's sick every time he's scheduled for one. This shouldn't be an issue b/c it's not affecting his breathing, but obviously we don't want to haul him to Greenville for a stressful study when he's feeling yucky. We're praying and hoping to get meds started tonight which would give us 2 full days of treatment by Thursday night.
It's amazing to see God's hand at work here. We've had to jump through some hoops regarding a good plan for the sleep study. Even though he's sleeping in the hospital, it's considered an outpatient environment just like if he was downstairs in the lobby. There are no nurses or doctors - just a sleep tech. That's not necessarily a problem as I do all of his night meds anyway, but if he got sick/spiked a temp he'd be taken down the the E.R. and admitted. We spoke with the sleep medicine doctor and our pulmonology nurse and ended up with a great letter from our pulmonologist saying that if Noah got sick during the study, he should be evaluated as quickly as possible in the E.R. then sent HOME for treatment. (We'd have the option of getting the first dose of antibiotics in the E.R. or just doing labs/going home).
This letter is a huge blessing because without it, it might be harder to have Noah evaluated by the E.R. then discharged instead of being admitted - it's just not how things are done b/c most parents can't just go home and make up a dose of I.V. antibiotics and run them. Having said that, we considered the letter to be a "just in case but we are sure we won't need it" kind of thing. If Noah hadn't had the surgery today (it was almost scheduled for next week) we wouldn't have done a U.A. and culture (we usually wait until he spikes a temp) and it's very, very likely that he'd be spiking that temp right about Thursday or Thursday night. If it happened during the day we'd have had to cancel the study and if it happened at night we'd have had to end the sleep study early and spend hours in the E.R. then I'd need to drive home in the middle of the night. I really wasn't thrilled at how packed our week was this week but trusted that the timing was all in God's hands - and it's amazing to see how key this exact set of timing proved to be!
I've posted a lot about our fundraising for a new (used) wheelchair bus for our family. I'm thrilled to say that this will be Ride To Give's Cause of the Week the last week of this month. We still need almost exactly $15K and RTG feels that it would be FAR easier to raise $10K. My friend Kara is doing an online auction next week hoping that we can bridge the gap between the $15K and $10K. (RTG will feature us regardless, but in their experience there is a huge difference between how long it takes to raise $15K vs. $10K.)
This is a Facebook auction and you'd need a Facebook account to BID, but there are plenty of ways to help without a FB account and without spending a dime. I'm cutting and pasting Kara's post here:
We're having a great time getting ready for
the Wheels for the Estes Family online auction! I'm starting to get
really excited! The auction goes live on October 14 and we need your
help!!!!
Here is your auction helper checklist:
- Join the Event Page at https://www.facebook.com/events/1386783631556882/?ref=22
- Contact me with details of what you are donating (info on page)
gift cards, handmade items, books, ebooks...let your imagination
run wild!
- Share with your family, friends, fellow homeschoolers, fellow
bloggers, church members, etc...pretty much everyone you've
ever met! ;)
- Join the auction and bid to win!
Thanks for the great support that you all show to the Estes Family - day in and day out! What amazing friends!
If you aren't on FB and would like to donate something to the auction, just email Kara at
