It's been awhile since we've had a health update which is a good thing. Unfortunately we have not completely avoided doctor's appointments. Julia's nightly cecostomy flushes have continued to go well. She gets upset sometimes about having to sit in the bathroom so long every night, but overall is accepting it as just a part of her life. She has the procedures down and can do most of it herself now. They are still taking anywhere from an hour to two hours. This has been hard some nights because she is just so tired and wants to go to bed. I hate hearing her cry and beg to "please let her go to sleep". It makes me angry all over again that her cancer treatments left her this way.
Last week we had one long night of her flush failing to work. After several hours everyone's nerves were shot and at 10:45pm we just threw in the towel and let her go to bed. At this point in addition to the medication, her colon had been pumped full of 3 times the amount of saline. I was expecting a mess by morning. It never happened. The next day, nothing all day. I was nervous when we started the procedure again. If it didn't work, we'd be off to the ER. Fortunately it did. We considered it a fluke and let it go. Then Thursday evening, it happened again. Not a good sign. Fortunately she had an appointment the next morning with Dr. Hodges (urology). I decided to let him be the one to take action. I hated to go in with a bad report because everything has been going so well.
We- okay, actually "I"- made the decision a few weeks ago to let Julia try wearing underwear during the day. She has been under Dr. Hodges orders to stay in diapers for the past few years. Her thickened and over-reactive bladder last fall led him to believe it was likely she was going to need extensive therapy to re-potty train. As her "momcologist" :) I decided that when she expressed her desire to "please be allowed to wear panties"(at the age of 5), I was going to let her give it a go and just see what happened. She had tremendous success and has only had 2 accidents in 2 months. I knew my executive decision needed data to back it up if I wanted it to be accepted. Nurse Susan to the rescue! We began using a "hat" in the potty to measure her urine output. It's crazy how much she enjoyed the challenge of filling that thing as full as she could. We continued to follow the "must pee at least every 4 hours rule" and tracked her output for a week. Turns out even though she has a bladder the size of a watermelon, she is consistently emptying it. I was hopeful Dr. Hodges would be pleased. So off we went with our data in hand and problems tucked away in our pocket.
He was very excited about her success. Yay!! He also said we can try and take her off of the daily prophylactic bactrim antibiotic. She has been taking it for over two years now- during treatment to prevent pcp pneumonia and for the past year to prevent UTI's. Now that she is controlling her bladder and her colon is being flushed, we are praying the chronic UTI's do not return. The only way to find out is to stop it, wait, and see.
Then we moved on to the cecostomy flush failures. He decided to call Dr. Fortunato (GI) and get an action plan. Unfortunately after two attempts he wasn't getting any response. He looked at me and said, "You want an x-ray, don't you?" He read my mind. For two reasons. 1) She is at risk of bowel obstruction at any point in life because of all the abdominal radiation she has received. 2) I want to know if her colon is impacted. Fortunately they have radiology in their office, so a quick trip down the hall and we had the answers. No obstruction, but a full colon. We left with instructions to get through to Dr. Fortunato. They decided we needed to double her medication and double the volume of her saline flushes for the next 4 days and call them on Monday for a plan. This is not what we want to hear. It is our hope to get her off the colon-stimulating drug or at least start to wean it back. Doubling it is like a kick in the gut..... literally. So we wait.
Julia was so funny when we left the appointment. "Mom, that trip was easy-peasy. They didn't ask me to do anything hard. Too easy." Apparently as crazy as her medical life has been this year, she is up for the challenge. I don't think she deemed this one worth the travel time and copay :) I just pray this becomes more the norm. I'll take non-invasive any day.
And as for me, the past few months have been up and down. I spent the late spring feeling really poorly and multiple doctors were at a loss as to what the specific problem could be. It was discovered in July that I had adrenal insufficiency. Seems the adrenal glands are not a fan of constant stress levels. Mine decided some time after Julia's last surgery to hang it up. I was put on supplemental adrenal, a regimen of vitamins, and an increase in my salt and water intake. I had been doing some of these for the dysautonomia, but it wasn't enough. I am now consuming 4 packets of salt a day, in addition to salt on all my food and drinking around 100 ounces of water. I am happy to report that my blood pressure at last check was finally up to 100/60. So much better than 60/40, but still low. I am beginning to finally feel better, but I know it will be a long road as my body heals.
I also had an MRI for the increasingly worsening back pain from the past few years. It was discovered I have a tear in one of my disks and degeneration in another disk. That explains a lot. At least there's a reason I can't tie my own shoes. I am trying 6 weeks of medication and physical therapy to see how things go. It seems cancer takes a toll on everyone. Sadly, it is a family disease and the ripple effects stretch far and wide. On a good note we are all in counseling right now, too and everyone is making great progress. We are so blessed to have such an amazing team of counselors, doctors, nurses, and caregivers.
