Quick update

The two doses of antibiotics we gt into EJ, (one at the ER and one late last night), made a WORLD of difference! He slept through the night and only coughed a handful of times, and not enough to even wake him!
I am so thankful we went to the ER and didn't just call the pulmonologist. In all good intentions, the NP probably would have suggested we put EJ on steroids. I have called the pulmonologist for every cold they've had, never a sick visit with pedi, but something told me we should call pedi this time because I didn't want steroids just because it sounded like he was sick (obviously) and not eating because he was congested. I knew there was something else, and I needed to address the dehydration concerns.

When I got to the ER I said I didn't want him on steroids if the Dr's would agree to that. I said "I know my children and I really feel like something else is going on here." He said, "so is there a reason you're opposed to steroids this time?" I said, "well of course I want to avoid them when possible because of side effects, but in addition, his O2 demands are not skyrocketing like they have when he's needed them in the past. He doesn't have much wheezing or junk sounds when he is breathing. He is in some sort of pain that is making him not want to eat (his nose was not clogged so that was not the explanation, and even with a stuffy nose my guy ALWAYS eats pretty well with a cold)." I said, "I'm worried about him being dehydrated, his persistent, unproductive cough, and his screaming/whining/inability to fall asleep episodes he's had for the past two nights."
I was surprised at how much I was listened to. It's good to know that many Dr's take into consideration what a parent is saying about their child, and acts on that information. Here are some examples from yesterday:
At one point when we first got there the nurse came in and said, "ok the Dr wants urine." I said, "and how do you plan on getting that?" I knew the answer but I wanted to make sure. "Full catherization." "Why does he want urine?" "To rule out infection because his belly hurts." I said, "No. I don't think his belly hurts. If anything, the pain could be severe reflux, but even that I doubt, but I'd like to talk to the Dr. before you attempt to catheterize him." The Dr. came in and said "when I pushed on his belly he cried." I said, "he was just upset you were touching him...watch..." I pressed on his belly all over it and he smiled and giggled at me. No catheter.
Then they wanted IV access for fluids. Not fun, but in the beginning I thought necessary. I had requested a bottle of pedialyte because of course I left that in the car. While waiting for everything, he finished the entire 4 ounce bottle. I then made him a bottle of formula since he wasn't coughing or mucous sounding, and he took 2 ounces and went to sleep. ugggh Edwin why were you drinking NOW and not for the nurses the past two days. Before the formula they attempted an IV. It didn't thread. She tried the other arm...same thing. That's it I said to myself. She was able to get enough blood for the cultures. But of course planned to stick him again. I had already made up my mind she wasn't doing it again, but they let us go to x-ray first. I called our nurse who was at home with Serena whose son is Sammy on my blog roll, who is a hard stick too and has to have many IVs a month. I asked how many times she allows one nurse to try and get an IV before you request a change. She said, "no more than two." Okay good I wasn't being a b*tchy mom. But by the time x-ray was done he had taken the formula, and I said, "if the IV is only for fluids, I want to ask the Dr. to hold off because he is drinking on his own and already has a wet diaper." The Dr. agreed and no IV!
What did make me mad and I didn't know she was going to do it, was when Edwin was fast asleep (finally) she came over and RIPPED the tape off his failed IV site. She said "it will stick if you don't take it off soon enough." It had already been on for over an hour. Edwin SCREEAAAAAMED in pain, turned purple because he held his breath, and was so unhappy. I GENTLY but quickly took the other one off before she could come over and attack him over there. I was so mad. Didn't she ever hear "don't wake a sleeping, sick baby just to take tape off?" We have a damn bathtub at our house and soap and there is a way to do it without interrupting his MUCH needed sleep. Needless to say I was mad, but I knew we were probably going to go home and I didn't want her dillydallying with discharge paperwork if I made her mad, so I kept my mouth shut.
I really feel as a parent you need to advocate for your children. I am thankful for the respect and empowerment I was given in the NICU, as it carved a path for me to feel empowered to advocate for S&E. I really know their history, research diagnosises, read about others who are going through the same, and make sure I let the Drs know that, although I am not a Dr and there is plenty I DON'T know, I do know my children and I will be heard. We have been very blessed with amazing Drs, who listen to what I have to say, and I'm a pretty well known mom over at UMass and they really trust me. I think if circumstances were different, a child with 24 hour O2 needs, former 23 weeker, BPD, CLD, with pneumonia would have spent the night in the PICU. But thanks to our pulmonologist who I heard had nice things to say about me, and the ER Drs, one of whom knew me from the NICU and the other who sat and listened and got to know me, they let us come home. It made the world of difference for Edwin because he was able to sleep through the night!
So when I get down about the sicknesses that plague my respiratory compromised babies, and get down about not being able to carry them to term, I give myself some credit for knowing a lot about my children and really advocating for them. In a sometimes uncontrollable life, it feels good to know I do have the ability to do something.