Tuesday, November 16, 2010

What a Day

Today my mom and I took Joshua down to Scottish Rite for the genetic testing related to his hearing loss. We got up at dark o'clock to make it down there in time for the appointment, which we scheduled over six months ago (they threaten you with bodily harm if you are late). So, of course, as we were getting in the car (in the rain), I spilled my coffee all over my mom's car (and my pants). Perfect.

So, several towels and one pants change later, we were on our way. Finally made it to the right location. Made it back to the actual exam room (Joshua protested the "girl's" gown he had to put on). The genetic counselor came in and went over all of the information in Joshua's file, threw out the names of several very scary-sounding diseases, disorders, and syndromes, and proceeded to tell us that it appears Joshua has none of them. She recommended that we test for genetic disorders related to hearing loss (I thought that was why we came in the first place), but then told us that the screening only tests for 6 possible gene mutations / deletions while there are over 100 genes that could possibly be linked to hearing loss. So, even though we're getting this test, we won't be able to conclusively say that the hearing loss is not genetic if it comes back clear. Say what?

Then she recommends an EKG. Tells us that she wants to make sure Joshua doesn't have a condition (can't remember what it's called or if she was even speaking English at that point) that can cause fainting or sudden death. Oh great. Like I don't have enough to worry about, now I get to worry that something is wrong with his heart because he doesn't hear so good out of one ear.

Did I mention that she was talking ninety to nothin' and throwing in every $20 word known to the medical community? I fancy myself a pretty intelligent person, and I only caught every third word.

So after all of this, we go over to the actual hospital lab to have blood drawn. We also had to do a urinalysis (the look on Joshua's face when I told him he had to pee in a little cup was priceless.) My kid had three vials of blood sucked out of his little arm and only said "ow" once. Then he proceeded to tell the nurse all about his Legos and how he's going to be a doctor when he grows up. Meanwhile, I'm in the corner with my head between my knees trying not to throw up.

Very important information you need to remember before you seriously question my parenting skills: Grandma was with us. (And thank God for Grandma).

With the blood drawn and the pee delivered, we left the hospital. Joshua woke up with a croupy cough this morning, so I made a 2:45 appointment with our pediatrician, thinking we'd be back in plenty of time. I should have known better. It was 1:15 when we left the hospital, and it takes an hour to drive back to the pediatrician's office. We stopped to have lunch and literally inhaled our food in 30 minutes so as not to be late to our appointment. We weren't late. But we had to wait over an hour to actually see the doctor. Figures.

Prescription from the pediatrician in hand, I pulled into my driveway to drop off Grandma and Joshua and to pick up the prescription insurance card before heading to the pharmacy. It was at this point that Dr. Schechter's office called to tell me that Caleb is still growing pseudamonas in his lungs (for the third month in a row) and we will need to do a year of TOBI treatments beginning December 1st. Right.

So, this has not been the best day ever. However, it has also not been the worst day ever. As is my habit these days, I have been thinking about all of the things that I am grateful for in this mess that is my life:

1. Grandma. Seriously would not make it without this woman.
2. Emory's CF Center. The place we went today is also (ironically) the CF Clinic for Scottish Rite. Suffice it to say that I am THRILLED that we don't have to take Caleb there once a month.
3. We already know what to do with the TOBI. It will just be a lot more of the same thing.
4. There is actually a treatment available to deal with the pseudamonas.
5. Darrell's awesome insurance.
6. Darrell's awesome job that often allows him to be off during the week.
7. God. His peace that passes understanding. When I ask for His help, it arrives. I can handle what I never thought I'd be able to handle. He provides for our every need.
8. Joshua and Caleb are both benefiting from the marvel that is modern medicine. And for the most part, the people we have encountered through this journey have been wonderful.

So what's next? Joshua sees the ENT for his routine hearing check on December 1st. We have the EKG on December 10th. Caleb sees the CF specialist again on December 14th.

And I will be on my knees every day praying for their health and healing. What else is a mother to do?

1 comment:

  1. Along with God and Grandma, your wonderful outlook will see you through. Bless you and your sweet family.


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