So every month we have an appointment with the pulmonologist for a check up, which includes a blood draw and two shots of a medication that makes it harder for Dominic to catch RSV, a virus that manifests as a cold for you and I but is very serious for small or fragile infants. Everything checked out good. She said she was happy with how he was doing, his milk intake was increased, which I am struggling to keep up with, hence the middle of the night pumping's again. Every feeding it seems like we have *just enough* to feed him with just a tiny bit left over. Lots of pressure! :o-
With each doctors visit, I become more and more on the defensive. I don't think I could have understood this before D was born with our 3 healthy kids, but now I totally get it. When we got to the waiting room it was very crowded, so I asked if we could stand in the open conference room (you know the one right next to us with the door open and light off), to which the receptionist said bluntly "no." Okay... So then I said "he's not really supposed to be around alot of people, is there a place we can go?" I was thinking maybe they had an open exam room, or maybe a "your baby has a trach and vent, please come sit here so he doesn't get sick by the other bagillion kids in here- room," but no such luck. The receptionist simply said "no" and the other one turned around and said I could put a blanket over his head. Thanks. That's very helpful. So, I just stood there for a second in shock and sighed a drawn out "okayyyy." Wow, customer service, eh? Now you have to remember that I know the patients with cystic fibrosis that come to the clinic are almost always colonized with some sort of difficult-to-treat bacteria. Once they are admitted to the hospital, almost all of them go on "contact isolation" status. I am fully aware that there may very well be some of those said patients in the waiting room, whom, because they are not admitted, are not on contact isolation status, but they are still affected by the same bacteria. Hence my level of freaking-out-ness.
OK, I totally get the fact that the clinic is small. I get there is not open exam rooms. I get it. I also understand that the open conference room that we are not allowed to stand in may be about to be occupied. We are not the only ones with a medically fragile child, but come on, don't be such a... well, be nice about it anyway! So at this point I was pretty hot, as was my nurse who was in total disbelief at what just happened. Then the offending receptionist said in her best sarcastic overly nice voice for D to go down to the lab and get blood drawn. So of course I requested the most experienced person in the lab so we didn't have to have a repeat of last time when the poor phlebotomist was fishing around in Dom's arm for*ever and his big SWAT daddy just about lost it on him. I could see it in the lab tech's eyes... "oh, you're one of those moms." Yep. So, she decided a heel stick would suffice this time- ha!
So, we finally get called back into the clinic and Dom is measured wrong, again, and he grew like 6 inches (not really). So the nurse re-did the measurement the MA took and from then on it was good. It's just the process of getting from the front waiting room into see the nurse that is so... how should I put it... sucky. As you can imagine I was just all bent out of shape by that time so when Dr. Dambro came in I told her all about my frustrations with this sucrase deficiency diagnosis and my eliminating so much from my diet when I don't think it is helping. blah, blah, blah. She was just sitting there with wide opened eyes, I'm sure thinking "this mom has lost it!" but in true Dr. Dambro fashion she was cool as a cucumber and suggested I make an appointment with the dietitian and said I could go see an allergist if I really wanted to. Yep, I do, thanks!
I don't want to always be so negative about doctors visits, so forgive me if you're thinking I need to stop the pitty party... I'm just trying to "keep it real" with y'all. I so want to be one of those happy, sunny, bouncy moms who is always smiling and takes everything in stride, like my sweet sister in law, but I'm just not. I'm grumpy, defensive, and snarled. I'm sick and tired of doctors offices. Just tired. God has given me many, many graces with this all, but even though he is showering them down on me, only a few are sticking... the rest are just bouncing right off ;).
In Jesus and Mary,