Cholesteatoma

Mira's going to likely have many interesting medical updates as the life of this blog progresses. This week involves two significant ones. Because this is the new "normal" of our life, I do not often consciously comprehend the gravity of what has been done to our daughter through doing nothing, but this week has brought it to my attention again with a new freshness.

Backtracking a little bit, when Mira had her two-week followup appointment after her g-tube surgery, the doctor commented that the tube was starting to get a bit tight, and we'd probably move up a size when she had her first change. [G-tubes are changed every 3-4 months. They've found that if you go longer than 6 months, the chances of failure go up, so the recommendation is to change it out soon enough that you just never have issues. The first change is done by a doctor, who will make sure everything has healed up properly, and after that appointment, the family can choose to do the change themselves, or to have a doctor do it.] After another two weeks, we were noticing that the tube was seeming really tight. We knew by this time, too, that she was gaining a fair amount of weight - from 25 pounds to nearly 30 pounds in six weeks! That's a 20% increase. I don't even gain weight that quickly when I'm pregnant!

We are in no way experts at g-tubes, but knew that when we had only two positions, 3-o'clock or 9-o'clock, tucked into the folds of her tummy (yes, she has a tummy!!) that we were likely NOT going to make it until June 5th when she was scheduled for her first change.

Yes. We were scheduled to go in on June 5th!!! I called the doctor's office and explained the situation to the nurse.

Yes, I know that you expect children to gain some weight when a g-tube is put in, but I'm guessing you haven't dealt with very many 25 pound 11-year-old children getting a g-tube AND good formula for the first time! We really don't know what "too tight" is, but we don't think she's going to make it until June without a longer stem on her g-tube.*

They agreed to have us come in this past Monday to take a look at it and assess if it needed to be changed.

Um. Yes.

The nurse had checked the size of her tube before calling the doctor in so she could have an identical one ready, because apparently, that's typical(?) Mira had a 14 french-1.5cm (french is the size of the tube, the cm is the length of the stem). The doctor took one look and asked the nurse to bring a 14 fr-2cm.

We're glad we didn't wait two more months. Even though her weight gain is slowing down a bit (which I think is also healthy - keep going, yes, but at a slower pace!) the tube appears to be much more comfortable for her when we have to clean it and move it.

Then there's the second one. This was one of those weeks when I get to pack up twice to head down to Gillette. The valet parking attendants have started asking about the kids when I don't have the right variety of them along with me! (We have to use valet parking at the main hospital entrance because Big Blue doesn't fit in the ramp, and Mira's chair doesn't fit in Little Blue (the Jetta). Thankfully, Gillette has arrangements such that we pay the same amount for parking regardless of where we park or who parks the vehicle.)

Thursday's appointment was with an ear/nose/throat doctor. Mira's complex care doctor (see the end of this post) wanted to have her checked out before her dental surgery so just in case they wanted to put ear tubes in, they could do it with an extra 15 minutes under anesthesia tacked onto the dental surgery.

Turns out it's going to be more than a 15 minute affair.

The ENT doctor took one quick look in one of Mira's ears, and said we were going to move to the microscope room. After some variety of ear wax removal procedures, he confirmed what he had suspected upon his first glance into that first ear.

Tsvetomira has a chloesteatoma in both of her ears.

What is that, you may wonder? Well, from this site, we read:

• Cholesteatoma is an uncommon condition where a cyst-like growth develops in the ear. It can be a birth defect (congenital problem) but usually occurs as a complication of chronic (long-standing) ear infection.

 Oof. We were told that our little girl has a history of recurring ear infections, and, most likely, particularly during the first seven years of her life, they were not properly treated. As a result of nothing being done, she now has a condition that at a minimum can destroy her hearing, and at worst, as her ENT suspects, can cause much more serious damage as it grows toward her brain.

What Mira needs is not a 15 minute surgery to insert tubes, but hours of sedation for an ABR (Auditory Brainstem Response test) and a CT scan, and eventually, the surgical removal of the cholesteatoma. Tubes may be part of that, but are obviously just a tiny bit of the whole picture.

We do not know yet when this surgery will be scheduled. The date of her dental surgery is not an option for either of the ENT doctors that we are connected to, so it will end up being a separate visit, but I'm guessing it's something that will be done sooner rather than later.

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Scenarios like these are a fresh reminder to me that often the excuse we may hear from our children, "I didn't do anything!" is a tremendous part of the problem. Doing nothing can be just as criminal as doing something.

I can not count the times I have cried over what has been taken away from our adopted children because nothing was done to/for them. As far as I know, none of them have been victims of active abuse, but they have all suffered greatly, and great loss, much of which is irrecoverable, because of passive abuse. So much has been robbed from these children of mine because there were people who did nothing. At this point I do not feel it is my place, nor is it beneficial, to look back and decide if this was done out of selfishness, spite, necessity (no money for proper formula, for example), or simply just ignorance. That is in the past, and I can't change the past, but in looking at the now and forward, it does become an important question. 

Where am *I* doing nothing when I ought to be doing something? Where are *you* doing nothing when you ought to be doing something? 

Then He will answer them, ‘Truly I say to you, to the extent that you did not do it to one of the least of these, you did not do it to Me.’

Matthew 25:45 

Doing nothing is actually still choosing something. When I first saw Bogomila's picture and her brief bio and mentioned it to Matt before bed, he rolled over and went to sleep. When he saw her photo the next morning, however, something clicked and he recognized that here he was, looking a real, live person in the face, with the power to do something, or to turn away and do nothing. At that moment, either option was a choice. Choosing to do nothing was, in actuality, doing something. Choosing to do nothing was saying to this child, "I'm sorry. It would be too hard/expensive/whatever to make you my daughter, so I will just let you turn 16 and become too old to be adopted and spend the rest of your life in an Eastern European mental institution because your legs don't work properly." And Matt knew that doing nothing was not what was right, so we did something instead. Just a simple email inquiring about what country she was in - at that point, we knew nothing (beyond that she was likely not African or East Asian from her photo.) One simple step, but it was something other than nothing. Learning that she was indeed in Bulgaria, the country we were already preparing to begin an adoption in with Tsvetomira meant we were at another junction. This was not an easy "no." Little step by little step of doing something instead of nothing, and here we are, a little over a year later, with our eldest daughter home with us.

That's just one example. And I can confidently say Matt made the right choice, but I think it's important to all of us to keep looking forward, looking at our now, and watching for where we may be doing nothing in a situation where our inaction, even if the outcome is not as criminal as some of the possibilities, is still a choice that we will be held accountable for.

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 *What is a g-tube? It's simply a little access point that goes through the belly into the stomach. The stomach is tacked onto the abdominal wall in four places, and as it heals it grows onto the wall, so it's right up close, and the tube works like an earring with a "button" that the feeding tube hooks onto on the outside, and an inflatable balloon on the inside that, like an earring back, keeps the thing from falling out.

(from http://pedsurg.ucsf.edu/media/85846/main_img.gif)

Replacing the tube is simply a matter of deflating the balloon, pulling it out, putting the new one in, and inflating that balloon. Easy-peasy. (Says the woman who's watched it done once, so now thinks she knows everything she needs to know. We'll see how the first change we do on our own goes! But I think it won't be too bad.)