Pulmonary and Nutrition

Today we had a marathon appointment with Pulmonary and Nutrition. It was over 3 hours. And one hour of that was torture for me. I only kept my patience because I love Molly (Pulmonary) and Anne (Nutrition), so for them, I stuck it out.

After we got settled into a room and they took all the vitals and measurements for Harlie, I guess an intern or resident or some type of medical student came in and introduced himself. Obviously, I wasn't listening as I do not know what his "title" was. All I knew was that he was going to ask me a gazillion questions and it would take forever.

This has happened before at some other specialty appointments. One time, when we went to see her GI doc an intern (or whatever) came in and introduced himself and said, "Hi, do you mind if I ask you some questions?" Certainly he wasn't really asking, he just had not learned how to phrase it yet. But, I jumped on the opportunity and said, "Yes, I do mind. I would just prefer to wait for the doctor, thank you very much." Well, to be honest, I don't remember exactly what I said, just that it was no, he couldn't ask me and he quickly left the room. The doc then came in and we went on as if nothing ever happened. I probably saved us an hour at least!

I really don't like being so rude, but I just couldn't help it. And I know that they have to learn and that MCV is a teaching facility, but geez. I can't always be the case study of the day. There is WAY too much history for me to go over - especially at a place that knows us. I would completely understand if it was a first visit, but the 10th?

But, as I said, I stuck it out and answered this guy's questions because I love Molly and Anne so much. I really didn't want to be rude in their clinic. But, let me tell you - I should get some kind of award for not losing my patience with this guy. I about lost it when he asked if she's on oxygen. I said as needed. He asked, "through a nasal cannula?" Um, HELLO! She's trached knucklehead. Now, I wouldn't expect anyone (like my loyal Harlie fans) to understand - but a med student?! Now c'mon!!! A med student should know that if a person is trached, that's how they breathe - thus - air goes in and out through the trach - not the nose. Duh. I do have to say that I must have sounded somewhat annoyed (hey, who wouldn't?) when I said, no, through her trach. Because he seemed to be kicking himself for asking that one aloud.

I guess I should give him a break. He's learning. I mean, who hasn't been there, right? But I get nothing out of him learning. I mean, he gets school credit, hours, pay or something for him putting on his coat and coming in the room asking me a bazillion questions (all of which are answered in her chart of course - achieved through many hours of my personal dedication and time spent in their clinic). But what do I get? Time wasted. That's what. And perhaps some blog material. But still...

After he FINALLY left, Anne came in and asked me what I did to the poor guy. She said he came out looking dazed and completely overwhelmed. Ahhhh, I couldn't help but laugh. Hey, he's the one who asked the questions - I just did my good duty of the YEAR and answered them. I should get some sort of teaching credit. A Patience Award at least. She did say that was the longest history exam she's seen. And I believe it.

Anyway, I was really hoping for Harlie's weight to be 23 pounds. But, that was just not to be. She weighed in at 22 pounds even. She weighed 20.8 pounds in early April. That's not even 2 pounds in more than 4 months! But, she grew over 2 inches, so that's great. Basically, she's the weight of an average 14-month old, and the height of an average 18-month old (and she is 23 months now). Which really isn't that bad considering her history. She's on the growth chart for BOTH height and weight at least, and that's something.

After Anne did her number crunching, it seems that we are not feeding her enough. So, we are upping her intake by a lot. 200 mls to be exact. Which is about 6 ounces over 24 hours. That's a lot for her little belly. So, it will take us a while to up her volume at each feeding. And we are going to start giving her 3 "meals" and 2 "snacks", and then try to increase those feedings, while decreasing her night feeding. I would LOVE to get her off her night feed - or at least greatly reduce it. Our goal is to try to get her schedule to be more like that of a typical toddler. Once we've got her schedule adjusted, then we will start to go to a blenderized diet. Something I've been wanting to do for a while. But, we just couldn't make these changes while her jaw was wired shut.

As far as her pulmonary status, she's good. Except for this cold. Molly increased her breathing treatments to every 4 hours during the day (she gave me a break at night) and told me to give her 48 hours. If no improvement, then I need to fill a prescription for Prednisone. So, we'll see how she does. Of course, the second our feet left the building (literally) Harlie started coughing up a little blood. Which can be typical for a trached child. Although it is a little weird in that she had not been coughing at all. So, I called later just to make sure it didn't make a difference to our current course of action, and Molly said it's probably just irritation and to not worry about it unless it gets worse. Which it hasn't so far.

Murphy went with us to the appointment and for being in a small room for 3 hours, I think he did pretty well, all things considered. When we got in the car to go home he said, "Mommy I had a great time at Harlie's doctor's." I'm glad he was entertained.

Take care,
Christy