No biopsy, again

Well, the biopsy was cancelled once again. This time for a cold. But, it wasn't cancelled outright. I had posted how at first the cardiologist said that Ben should be ok to have it if he was just having nasal discharge and a cough. Well, on Wednesday I got the pre-op call from Lurie. The receptionist went over everything and asked "is he ill right now with a cold or fever?" I said "yes, he has a cold. But, I had talked to cardiology on Monday and they said he should be fine to go ahead." She asked if it was a wet or dry cough. When I told her it was a wet cough, she replied "well, they are most likely not going to do it with a cough and nasal discharge, but they will want you to come in and be looked at." I told her "well, no thank you. If it is most likely not going to happen, I am not driving 2 hours to be told no, it's not happening. We will just cancel." So, she let me know that a nurse would be calling me back. She then called me 5 minutes later to tell me she had paged the nurse to call me, but that they had a note in the computer that they had talked to me on Monday and knew he had a cold, and they wanted him checked out even if they did not go ahead with the biopsy. I told her "I understand what you are saying, but I really can not afford to drive 2 hours, pay for Ronald McDonald house, pay for parking and come in all while KNOWING you are going to say no it can't be done. I want to cancel if you are pretty sure it won't be done." I think she was a bit irritated with me at that point.

After a bit of confusion on their part with the nurse calling Joe back instead of me and trying to schedule the biopsy for Halloween (also Klara's birthday!) and then trying for the next day, I finally got hold of the scheduler. We have the biopsy now set for Nov 21st. I am not even holding my breath that he is going to make it that long without getting another cold though. He is in the toddler classroom. He has 2 sisters that go to school. We go shopping. He is exposed to germs everywhere. And, his teachers are amazing! One of the teachers that helps out in his class told me, "I was supposed to help out in Ben's class last week, but I asked Miss L to help instead because I had a cold and didn't want to get Ben sick." So, everyone really tries to keep him healthy. He just is around a lot of kids, and being immunosuppressed, he is bound to get every single germ. It was funny, when I talked to the scheduler, she was the same one I had talked to the last 2 times we rescheduled. She told me, "I thought you were going to put him in a bubble!"

So, now we are doing our best to keep him as healthy as possible, as well as get him over this cold as soon as possible. And, it makes me a little sad. Yesterday, I was able to take Klara and Abby to the Halloween Happenings at the Park District. Klara has a bit of a cough too, but she is able to cough in to her arm and avoid germs a lot better than Ben. Ben could not go. There was too much risk of him getting or giving germs. More risk of him getting more germs though. Same thing with tomorrow, we were invited to a friends first birthday party and we can not go because Ben is STILL sick and Klara is still coughing. It's just things like that that make me sad. He takes so long to get over things and he has to avoid so much and miss so much because we need him to either get or stay healthy. He also missed a friends second birthday due to illness a few weeks ago. There were so many little kids playing games yesterday. I kept thinking, "man, I wish Ben was better so he could be here and enjoy this. He would love this!" It just made me a little sad not to have all of the kids there.

Add to that, we will probably need to take Ben and Klara in to the dr either tomorrow or Monday (yes, our dr is open on Sundays. How awesome is that!?) and it gets a bit frustrating sometimes. Still, we are glad for how well he is doing, overall. Even with being sick, he doesn't have a fever this time. So, no need to be admitted, yet. And he is pretty happy, even with waking up coughing multiple times a night. Although now he is getting kind of cranky and pulling on his ears. He is really tired, but keeps pulling his ears. So, we will most likely take him in tomorrow instead of waiting until Monday.

So, now we wait. We wait until tomorrow to see what the dr says. We wait to see if he is better in time for his biopsy. We wait and see if he catches anything else. We wait for Nov 21st and see if we can have the biopsy then. Crossing fingers once again.

With his silly sister, Klara