AAACK because of the Murphy's Law misadventure that was the appointment. Sigh. This was a trying morning!
We were fortunate to have a dear dear dear friend from church offer to watch our other kiddos while all of this medical mayhem is going on, and today we took her up on it. She arrived early, with her two kids in tow, so I was able to head out with Geri right on time (rather early, actually) without a shred of worry. That was really nice. So I loaded Geri in the car and headed off to Denver for the appointment. I gave myself about 2 hours of travel time, just in case of traffic. On the way up, I stopped off at a Starbucks for some grub and coffee. All things were going great.
Until I totally got confused. See, this surgeon is part of a rather large practice, and they have 7 locations. Yes, 7, all in Denver. And the docs move between different locations! So this week we have three appointments with one doctor... at three different locations. Today was the Englewood location, tomorrow is at Children's Hospital, and Thursday's post-op is at the Wheat Ridge office. Oh, but everyone calls the Englewood office "the Centennial office" when they talk to you. Even though it's referred to as Englewood in their literature. Confused yet? Because I sure was! I made the drive up to the Wheat Ridge office, rolling in 15 minutes ahead of our appointment time and feeling like a success.
Then they told me that I was in the wrong office. The right office was about 20 minutes south. You know, south? That direction I came from? sigh So I threw Geri back in the car while the Wheat Ridge office called the office-formerly-known-as-Centennial, and raced back in the direction from whence I came. I got there at 1030, thinking that I wasn't massively late so it should be ok. Then I opened the door to get Geri out of the car to find that she had vomited all over herself. Did I mentioned she got carsick that one time in Bulgaria? I must have been driving like a Bulgarian today, because she blew chunks huge. I picked up the larger, more solid bits and wiped her off a little with diaper wipes and raced into the office.
Once in the office I had to fill out the new patient paperwork, which is really easy when you're toting a non-verbal toddler covered in puke. I finally got all the paperwork together and picked her up and that was when her diaper leaked. All over the right side of my shirt. Luckily, I had a change of pants for her. No such luck for me. Oh well, I managed to get her changed and cleaned up, even got her jacket largely cleaned of vomit, and then went back to the waiting room where a well-meaning mom sitting across from me did a really bad job of not staring at my daughter. Or maybe it was me. I don't know, which would you stare at - the manically rocking girl who was way too big to be a lap-bound child or the wild-eyed mother with the purple hair and the hundred yard stare?
We were finally called back, where the nurse attempted a few minor tests before giving up and leaving the room. Then we waited. A lot. Our 10:15 appointment became an 11:45. For the record, I don't blame the doctor's office for this. I was late, I know that means I had to be squeezed in somewhere else and made it impossible for them to honor my appointment time. Geri decided to carpe that waiting time and partially fall asleep in my lap, which was at once encouraging and a bit annoying because of course she decides to finally submit to a nap when there's no way I can oblige. Kids.
The actual appointment was very informative. Her doctor told me that he wasn't going to worry about getting a bunch of examination stuff done in the office today because he would be examining her eyes under anesthesia tomorrow. Fine by me. He explained that the surgery he intends to perform involves opening the eye to get at the natural drains that should be in place but with a membrane blocking them. The biggest difficulty is going to be the fact that he eyes are so swollen. The swelling changes the anatomy of the eye, moving the drains out of position and flattening them to slits and making them very hard to find. If he can find the drains he can remove the blockage, but if he can't then he has to install synthetic drains. They work fine, but the problem with them is that they only last about 4 years... meaning she'd have to have an operation every few years to replace them.
He told me that he believes her right eye still has sight but her left eye does not. He wants to operate fully on her right eye. On the left eye, he wants to use a laser to blast and partially kill the portion of her eye that produces fluid. He said that, since he doesn't think there's vision to be saved in that eye, he isn't sure he wants to operate on the eye right off. For the record, his goals for each of her eyes are very different. In her right eye, he wants to reduce her pressure to the normal range, getting it below 21. In her left eye he wants to get it below 30. Why 30? Here's an interesting tidbit about glaucoma that you won't find on WebMD... if the pressure of the eye stays over 30 for too long (not sure of the actual time frame) the eye will actually die and shrivel up and rot in the socket. So if he doesn't get it below 30 on the left side, she'd lose the eye entirely.
I disagree with him, though, on one fine point... I don't think that left eye is a total dud. I guess she could be so used to relying on her right eye that the compensation is hard to detect, but I tried to test her today. I held my hand way off to the left side and wiggled my fingers. She saw it, turning her head to get a good look with her right eye. She definitely relies on the right eye, but I think the left one works at some level. He will be able to tell tomorrow when he examines her under anesthesia, because he'll be able to look at her optic nerve and see how much damage it has sustained. He did say that if any of that nerve still looks healthy, he'll probably do the surgery on the left side as well as the right. I think I would like him to do it anyway, because I think that just slowing the production of fluid isn't going to be enough. But he went through med school, so I feel like I should listen to him. This is one of the hardest parts of parenting - knowing when to argue with the doctor on your child's behalf. Do I trust my gut or his training? Do I want to be that pain-in-the-butt mom who presumes to know more than the professionals? Do I want to be the mom filled with regret later if his more cautious approach doesn't work and I am left wondering if we would have seen results had we gone all the way?
At any rate, we are on for tomorrow and I think we have all the info we need at this point. We'll get more details tomorrow, before the surgery. He did make a point of telling me that she will be on drops to maintain her eye pressure for life. And that she will probably need repeat surgeries in the future and very frequent eye exams. He said that, with this condition, your ophthalmologist's office becomes a second home.
Well, if you can find it.
In other news, she astounded me today by cruising a very long distance on the furniture. And not a straight shot, either. She started at the bookshelf on the far side of our bed, then went across my hubby's nightstand, up the side of the bed, across the end, transferred to her bed, down the side of her bed to the door, out the door into the kitchen and turned a left to make her way along the counters to the bathroom door, which transferred her to the toilet and from there to her objective - the sink! I watched the whole thing with the biggest grin on my face and called Nick to tell him as if she had just proven string theory or something. And tonight she took another bath without any problems. That's two nights in a row! And this time we put her in the tub with it partially filled and the only time she cried was when we took her out! Go figure. She used to scream when we put her in it, now she's going to throw her fit when we take her out. Kids.
I'm going to wrap this very long entry up by asking everyone to please pray like crazy. Pray that we get there on time and without all hades breaking loose on the way. Pray for her safety under the anesthesia. Pray that the doctor will find the natural drains in her eyes and be able to open them. Pray that her optic nerves will still be at least partially intact in both eyes. Pray that her doctor will make the best decisions in her surgery, and that we will make the best decisions in advocating for her. Pray that her corneas heal and have no permanent clouding. Pray for God's will to be done in our daughter's life. Pray for a healing miracle. Pray that this ordeal doesn't set her back too much in her bonding and adjusting. Pray that I'm able to handle the two weeks of recovery with two very needy girls, one in a lot of pain and the other too young to understand it all. Pray for TJ to be patient during all of this.
Jesus opened the eyes of the blind before. Pray He will do it again for our daughter.