Testing, testing, 1,2,3....

Caleb had his pulmonary appointment today. Since his pulmonologist left the clinic, we saw his new doc today. I met her a long time ago, when C was 6 months old and in the hospital. (I had no idea who to pick as his new doc because we've seen the same one for 4.5 years!) She was very nice and thorough, but she seems to follow the Children's Hospital of WI's "policy" of test, test, and retest.

She is VERY concerned that his lungs have not really cleared up at all from his chronic lung disease (from being so early and on the vent for so long). I have been concerned about his all along because we were always told that they'd clear up as he got older and that he'd continue to make new lung tissue until he's around 6 years old, which would make his x-rays look more clear. She's also concerned about how poor his pulmonary function tests (PFTs) are. This was kind of a shock to me because his old doc (who was the head of the dept) always told me they were "okay" and the reason that they weren't the greatest was because of his age and ability to do the test correctly.

To make a long story short, she wants him to have an overnight pulse ox study, where they will look at his oxygen saturations while sleeping (done at home), a chest CT, and a more in depth PFT studies. (The last one takes 80 minutes...we'll see how long it takes for him to lose his cool on that one.) She also brought up the possibility of another bronchoscopy or doing an open lung biopsy. She better have some pretty good reasoning before we agree to even the bronch. At this point, we are completely against doing an open lung biopsy (which would involve cutting him open, taking a piece of his lung, stitches, chest tubes, hospitalization, etc.)

I am totally for the chest CT. Most kids with his immune deficiency have one every year to look for infections that may be hiding out. The other two things, I feel are a little unnecessary. But since they are noninvasive, I agreed to them. However, once we get the results get ready for RN mommy to come out and question, question, question their next moves!

I have to share this too. Most of you know that Caleb cannot sit still for long. We had to wait over 45 minutes for the doc to see us. By then I had exhausted all of my "tricks" to keep him entertained. When she finally came into his room, we first did a lot of talking. By then Caleb was going through he nurse server. I figured there wasn't anything in there that could hurt him, and told him just to look with his eyes. The next time I looked up, he was standing on the exam table. While looking in the drawers, he found the ear pieces for the otoscope (the thing they use to look in ears), climbed up on the exam table so he could reach the otoscope, which was high up on the wall, put the cap on the otoscope and was sticking it into his ear, and trying to figure out how he could take a look. Think he's been to a few doctor appointments?? HA!