Saturday, May 30, 2009


I wake on this morning feeling very thankful! It was an incredibly difficult week that began with our son Alex's surgery. The surgery went wonderfully and we were just anxious to have the same surgery behind his brother Nicholas so both could begin moving on. The surgery for Nicholas was delayed due to concerns that he might have an infection. First it was thought that he had an intestinal infection, a very scary thought but luckily this has been ruled out. Then just when we thought he would be cleared for surgery from this scare, we came in to find out that he was being moved to an isolation room. It turns out that he has something called "ORSA".

I feel bad for the staff who have had to tell me ANY new diagnoses or even change lately; these days they could tell me that their hair color looks ummm.....just a little bit different and I'm afraid I'd freak out. Any news these days seems just enough to put me over the edge and they have to explain very fast to reassure me that this is not as serious as it sounds. It was explained to us that this just means he has a bacteria found on his skin (found on many of us actually) that is resistant to certain antibiotics. He is not being negatively impacted by this, he is not sick from it. This basically means if it were to get into his blood stream, they would have to use different types of antibiotics to treat him. They mostly are just being very cautious, and the isolation room is really to protect his room-mates from getting the same thing. Ok, I could breathe again. It saddened me that I could not visit him and his brother in the same place anymore but that is something I could deal with.

Remember that roller coaster ride I was telling you about? Still on it. Just a short time after this, they stated that Nicholas's surgery had to be delayed again because his arm was reddened where an IV was and they worried that perhaps this was infected. So at a minimum, we had another 48 hour wait to see if he indeed had an infection or not. Keep in mind we've been told at least three times in as many weeks that Nicholas might have an infection, that turns out each time has not. I do understand that they need to be very careful and that they can't take a little baby in for surgery if he has an infection, but a red area on his arm? I wanted to shove my arm at them and show them where I just had a blood drawn, and it was still red where the tape touched my skin for a matter of a few minutes several hours earlier. If my little one has my skin sensitivity, we are in big trouble with these folks. I managed to bite back my frustration and respectfully ask whether this redness on him could in fact just be a skin sensitivity, and they agreed it could, but we'd just have to wait and see. I know we all want the same thing and I know I can't take my frustration out on his care providers, thats what husbands are for, right? (sorry honey).

We then found out on Thursday that Nicholas in fact does not have any infections and has been cleared for surgery. YEAH!!!!! The catch? Now they don't have a place to actually do the surgery. There is no room in the isolation room for all the equipment and staff needed. The operating room is full and the NICU room can't be used for Nicholas like it was for his brother because of all the other babies in that room due to his ORSA. So now we may have to wait until next week just to find a place to actually do the surgery. It didn't help to find out from one of his nurses that other hospitals don't even separate babies with ORSA because it is so common. This is simply maddening and I spoke to one of the doctors about it. She agreed to speak with the medical director to see what could be done.

Well, that was just a taste of how a few moments in our week have gone, just enough hopefully for you to appreciate how beautiful the week finally ended: Thursday night the medical director decided to make our NICU room the "ORSA" room and brought the babies diagnosed with ORSA, including our Nicholas back into the larger room, enabling them to have a place again for his surgery. They also decided to let his brother Alex stay in the room with him, they will take precautions with him but to be realistic, if Nicholas comes home with ORSA, his brother will be sure to get it anyway.

Friday morning, we got a call at 7am that they assembled all the people they needed for the surgery and it was going to happen, oops in about thirty minutes, could we get there? There might have been a few expletives going off in my head, a couple might have even slipped out but I think only after I hung up the phone but the important part was our baby got the surgery he desperately needed and we are sooooooo thankful that the staff thought so creatively and so many moves to make it possible.

Thanks to the phenomenal nurses, doctors, and ofcourse all the prayers being said in their names, both boys are recovering now. We are so hopeful that they will be feeling better and now have a chance to grow and keep getting stronger.

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