Frustrating Day

So, we went to the pediatrician today. She weighs 13.7 pounds. So, at least we’re starting to make some progress. I know it is hard to tell in her photos, but she is TINY. She needs some fat in a bad way.

She has her first ear infection. I am very surprised that we’ve made it this far without one to tell you the truth. She has a very small ear canal, so I really thought they would be more of a problem before now. We are going to go on ahead and when she has her tracheostomy re-done after the next heart surgery we are going to have them put a tube in her ear just to be on the safe side. (They have to remove the trach and put a bandage over the stoma for infection control during heart surgery – then they re-do the tracheostomy.) Since she only has hearing in one ear, we need to do everything we can to keep it good and healthy.

I am really starting to like this pediatrician. After talking about the recent developments, he clearly understands how hard this is for me as a mom. Most doctors just look at surgeries without any emotion. He was very sympathetic and clearly understood how discouraging this news has been for us. No word on her surgery date. Not that I was expecting one by now anyway. I am really hoping that we will find out soon. Watching her work so hard to breathe is starting to take its toll on me.

Oh, one good thing, I must have misunderstood her doctor when he told me that they don’t have any history of a person with one lung and her heart surgeries. I’ve been told that there are kids out there that have just one lung and have had the Fontan (the last surgery). Maybe he was talking about her particular lung mass. At any rate, it gives me some hope.

So, I had a very frustrating experience today. I was getting ready to take her for another helmet fitting (we forgot to drill holes in it and it was still a little too close to her left eye). I started loading the car and organizing myself to get out the door well in advance of when I had to leave. Got in the car, Harlie had to be suctioned, I get out of the car, run around and suction her. Get back in the car and realize that someone is backing in my driveway (it was Harlie’s equipment and supply company). I get out of the car and the man tells me he has an oxygen concentrator he needs to switch out (I had NO idea they were coming). I kindly explain that he cannot do that right now, I have my daughter in the car and we are on our way to an appointment and I have to leave or we’re going to be late. There was NO way I was leaving her in the car unattended and absolutely NO way I was going to take her out! And I didn't have the time to spare. So, he says, “hold on, I have to call someone.” WHAT?

So, he brings me his cell phone and puts me on the phone. I tell that guy (with less kindness) that I must leave now, I’ve got my daughter in the car, etc. Now, I am having to constantly open and close the doors and she is getting hot and sweating all over – which makes her cough and gag and vomit. So, that guy says, “okay, well, hold on, let me get my boss.” Are you kidding me???? I am STEAMING mad by this time. The last guy gets on the phone and says, “what’s the problem ma’am?” Oh boy. I explain it to him with NO kindness and tell him that I don’t have time for this, I have to go and tell your guy to get out of my driveway! Finally, he says okay can we come back tomorrow? I say yes – but it has to be before 11:30. So, he says, “okay we’ll be there at 11:30”. Duh. I said BEFORE mister – “we have to leave the house at 11:30 – and we aren’t doing this again!”

Clearly, this guy does not have a medically fragile child. Harlie can be fine, and you change temperatures, and it can take her 30 minutes to recover. And who is the one that is working like crazy to help her – and is in agony over watching her retch and cough and gag and try to catch her breath? ME! It is during times like these I wish I had some way to make people understand. This guy didn’t want to be inconvenienced by having to drive all the way back out to my house tomorrow. And I know he didn’t know it, but he was essentially making my child suffer. He probably just thinks I am some kind of crazy woman. And yes, just in case you were wondering, I was late for our appointment.

Ahhh, another day, another adventure. I can only wonder what tomorrow will bring.

Take care,
Christy