Chronic

Chronic... it's the word that reverberates in my head. I can hear it over and over - - much like it's skipping on my old white record player with the penny taped on the needle arm. No matter how hard I try to stop it, it won't stop repeating. When I close my eyes, I can see the word in print. I've read it in countless articles, written it down time and again in notes and have even used it here on the blog a time or two. It is a word - - the word - - that is used to describe so many of Gracie's medical conditions... Chronic Gastritis, Chronically Ill, Chronic Migraines, Chronic Middle Ear Pathology (ear infections), Chronic Pain and last Wednesday, a new one - - Chronic Lung Disease.

I was not, in any way, prepared for the later. I still am coming to grips with Chronic Pain - - that one makes me cry on a regular basis... having only recently come to terms with the fact that Gracie's pain is, indeed, chronic. While I've known that in the back of my mind, it's an entirely different thing to actually use that word and truly comprehend the meaning. Despite the effort I will make until I breathe my last breath, her pain will likely never go away. She copes remarkably well with all that she endures - - I am quite certain that if I were in her shoes, I would not.

There are several well-written and informative articles about pain in CHARGE Syndrome. Some of them can be found in two previous issues of CHARGE Accounts - - Spring 2007 and Summer 2007. Considering we've discussed this topic at length with professionals over the years and the fact that I read those articles when they were published two years ago (more than once), one would think that I'd have already come to grips with the idea as it applies to Gracie. But, when it comes to pain and your child, there's not a lot of room for acceptance.

Then, on the ninth, during Gracie's (ridiculously long) pulmonary clinic appointment, the word was presented again. Perhaps I was easily rattled because we had pulled into the parking garage at the hospital at 2:15 and the nurse practitioner didn't come into the room until well after 5:00. Perhaps it was because when the doctor finally came in (a colleague of our regular doctor), I was freezing from sitting in the over-air conditioned room (Gracie liked it, though), had been trying to keep Gracie occupied and happy for hours (she actually coped with the wait better than I did) and had to use the restroom for over an hour. Perhaps it was because I just thought we were there to have a check-up, get some paperwork signed for school and discuss a few "housekeeping" items. I am not sure it was any of these things or a combination of all of them... but I didn't handle the information well. It was a good thing that the nurse practitioner was in the room the while the doctor was and that she wrote down everything for me... because I missed half of the conversation - - a fact I discovered upon reviewing the notes with the nurse.

While Gracie is not formally diagnosed with Chronic Lung Disease, the doctor feels we have to treat her as having it. (Whatever that means... if it's serious enough to treat her for it, then it might as well be a formal diagnosis). She has primary aspiration - - which means that she aspirates her own saliva - - (as opposed to secondary aspiration which is refluxing, then aspirating). This is not news, of course. In spite of being trached, she continues to micro-aspirate her saliva into her lungs. For over two years, we have treated her with an inhaled antibiotic (a month on, a month off) to ward off the many trach "bugs" that are so common (and that seem to be very attracted to Gracie). Over the past several months, though, I have noticed that on the off months, she is getting more and more symptomatic of the bugs long before the medication is scheduled to restart. I shared this with the team last Wednesday. The consensus is that Gracie isn't developing a resistance to the med, rather she is not getting her lower lobes cleared out enough and is, therefore, harboring that bacteria all the time. The antibiotic, the (extremely proactive) doctor feels, is only masking the symptoms and the continuous micro-aspiration is doing permanent damage to her lungs.

As a result, she's prescribing a new medication regimen and CPT (Chest Physiotherapy - which is vigorous percussion of the chest wall). On months that she's on the antibiotic (which she believes will be through the spring months) she will have a total of six breathing treatments a day. The regimen is: Xopenex (to open her lungs) via nebulizer, followed by CPT (about 20-25 minutes), thorough suctioning to clear out all mucous brought up with the CPT, followed by Pulmicort via the nebulizer and then, finally, the antibiotic med via the nebulizer. Twice a day.

This is a lot... and I am not complaining because I will do whatever needs to be done... though I am really concerned with the amount of time this will take (Gracie's already getting a total of an hour of treatments a day). On the months that she's on the antibiotic, with the new plan, it will now take well over an hour. Twice a day. This on top of school, feedings, therapy, FUN... etc. Luckily, she loves her nebulizer and the CPT. But so far, she's not overjoyed about that hour and fifteen minute stretch at a time. We've tried it... and I absolutely have to give her a break. This is not the optimal way to deliver these meds or the therapy... there is a method to the doctor's madness. But, we also have to live in the real world. For the first few days I was emotional and angry about the whole thing. I had left that office feeling like I was going to be harming my daughter if I wasn't able to fully comply, yet also harming her if I force the full-length treatments twice a day. What I've come to realize, though, is that there are going to be days that I can't get all of it in... that I have to skip a med or a little of the CPT. We have to live in the real world... and we have to live.

And that brings me to the better part of this post... the "Other Chronics" in our lives! For instance, Chronically Amazed and Chronically Surprised!

On Saturday, my very intuitive daughter somehow knew that Mommy was in need of a pick-me-up and during the day's first very lengthy set of breathing treatments and CPT, she started pushing herself into a sit... all by herself... over and OVER!!! She pushed up on all fours, walked her hands up to her knees and pushed back into a sit. She then corrected her positioning, sat there very pleased with her achievement, got herself down and did it all again... at least thirty times! And she has done it many times every single day since!


Then, that night, she cruised from one thing to another for the first time...


And then, as a sweet reward while Preston napped on Sunday, Mommy gave her a well deserved, very luxurious pedicure... complete with a warm-lotion leg and foot massage!


The photo quality isn't great... these were all taken with my cell phone and the lighting was terrible. But they are actual moments captured - - the moments that made me refocus from last Wednesday's appointment and concentrate on all of the Good Chronic in our lives.