Milo cracked me up when he came home from school yesterday and the big tank that has always been in his room was gone. He stopped in the doorway, he knew something was different, but he didn't say a word. I asked him what was missing and he said, "my oxygen tank, where did you put it?" as he went room to room looking for it. I told him the doctor said it could go back to the oxygen store. He said "oh, great-grandpa can have it now" and I agreed that maybe he could (even though he already has his own). Then he said " I know they put it in the Oxygen Jeep and took it away." OK, so it was a van but yes they took it away and now there is some extra floor space in his bedroom.
Figured it was time for a medical update so here it goes:
This week started with a trip to the Pulmonology Clinic for his routine check-up. It had been a year since she had seen him (yup, I was gently scolded for waiting so long) and she was very pleased with his progress. His oxygen sats were in the upper 90's rather than the mid 90's where they had been before. The noise (indicating his floppy airways) she could always hear when listening to his breathing with a stethoscope was gone unless he was upset so that is very encouraging to hear. We made good progress with his prescription meds too. She lowered his oral steroid dose and decreased the strength and frequency of his in hailed steroid. With all the germs at school (hello stomach virus) I'm good with keeping some steroids around for the winter. She wants to see him in 6 months and hopefully we'll have a plan to get off the steroids then. Oh yeah, she finally agreed that the oxygen could leave the house :0) When we go to pulmonology appointments I know we will be waiting awhile to be seen but I've come to expect it and really I'm OK with it because she is very thorough, takes her time and makes sure all our questions are answered. She does her notes in the computer while she is in the room and we get a print out with a little recap at the end of the appointment. As an example of why I like her so much, here are a couple of things from our print-out. "Milo looks good today. He sure has done well." and "Flu shot of course :)" yes she typed the smiley, and "Keep up the good work!"
Today was a trip the the Cardiology Clinic. It has been a year since we had seen his cardiologist too. I was supposed to make an appointment 6 months ago, oops. In my defense, if anything seemed even a little bit off I would have made an appointment much sooner. These appointments generally last about 90 minutes but actual doctor time is about 5 minutes. He had a echo done (ultrasound of the heart) and cooperated pretty well for that. Putting on the 3 cardiac leads caused a bit of a meltdown but nothing Kung Fu Panda couldn't cure. After that was done the Dr. came in and said that everything they could see looked good and the pressures in his heart were good. The stint that was placed last year was doing it's job well but they couldn't see far enough on the other side to evaluate the narrowness. She said that the heart pressures would be elevated if it was causing a problem so she wasn't too anxious to do further testing, I'm inclined to agree. She is going to talk to the interventional cardiologist (the one who did the heart cath) so see what he suggests then she will call and we can discuss. The plan for right now is to see her in one year, hallelujah!
I think that's enough appointments for now!
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