That Part I Hate the Most

Clinic visits are always long. There are too many other kids sitting with their worn out and worried parents. The staff is buzzing around the hive - overworked - misplacing charts, etc. First we have to get registered. This is a big open space - kind of like a trail head. After they collect the copay, I sign form and they print his paper work. Then the buzz us back to our doctor's corridor. It's kind of like an overcrowded alleyway. There must be about 10 chairs lined up, but usually it's standing room only.

Because we know that Jacob's port is going to be accessed we walk down to a little room on the right and ask for the numbing cream to be applied. It needs to sit for about 30 minutes so the area is actually numb. They squirt the cream on and then put a clear bandage covering thing on. We wait. Jacob usually plays the Nintendo DS. I haven't read more than 2 pages in my book. I can't concentrate. I read the same paragraph over and over.

I think I've figured out the paper trail. Once we've registered then they drop Jacob's file through the door to the nurses station. When it's his turn, they come down to the crowded hall and call us back. We go back with the nurse to take his vitals (weight, height, blood pressure, temperature). They ask if he has pain. We review any meds he is taking. Then we go back and wait in the crowded hall.

Eventually our papers are carried by the nurse down the hall to the little room on the right. We wait until our name is called again and then go to the other little room that is for patients. This is where they pull out their sterile kit. First they room the sticker over the numbing cream. The nurse wears gloves & a gown. They are supposed to clean the area with a special sterile wand thing with a cleaning sponge on the end. Then they poke a 3/4 inch needle that looks like a thumb tack into his chest, through the port accessing his central vein. They draw the blood needed for labs, flush the line, & tape up his port with this big clear sticker thing.

Then we wait to meet with the doctor. This could be over an hour as we wait for the counts to come back from the blood draws. Our name is eventually called and then we go back by the nurses station where his vitals were taken and into a patient room - There may be six of them. This is when we speak face to face with Dr. Matthias. She answers any questions, reviews the blood counts, discusses any further meds. Then she exams Jacob - checking the port, checking his scars, looking in his mouth, feeling his abdomen, etc. Then she writes the orders for the chemo.

So we wait again in the crowded hall while the chemo is prepared. After another long while, we are called back into the little procedure room for the chemo injection and also removal of the port needle.

This last week we had a chemo treatment AND a follow up visit with Dr. Chamberlin, our urologist. It was also a Wednesday after a holiday, so they had 54 scheduled patients instead of the usual 30. Because the nurse was trying to help us get to our other appointment, she called us back to meet with the doctor sooner - instead of waiting in the hall for the blood draw. Apparently the procedure nurses kept calling Jacob's name over and over so they could access his port.

Meanwhile we were waiting for Dr. Matthias when we were supposed to be upstairs for Dr. Chamberlin. I called up to let them know we'd be late. I don't know why I was in such a rush. By the time we got up there, we had to wait through the lunch break. But that appointment went well. Jacob officially has his clearance to ride a bike, play basketball, & to swim. (He still has to follow the oncologist's rules though). While we were gone, the chemo orders were supposed to be getting all ready, so we could return, draw blood, get chemo, and get the needle out all at once. (Instead of draw blood, see doctor, then get chemo, etc).

So, I'm finally getting to the point of this whole long post. It's bad enough that it's a day full of waiting. It's boring. It's kind of grim and gloomy. It's bad enough that he is there to get chemo. But the needle and receiving the drug into his veins is not too climatic. The part I hate the most about the whole ordeal is the STUPID TAPE.

Jacob must have very sensitive skin because he has had an irritation rash all around his port since his first hospital stay. Then it fades. Then after staying in the hospital for 4 days with the sticker badge over his port, it's all irritated again. I don't know whey you last stuck a big piece of tape to your chest and then tried to get it off, but it's horrible. While the sticky stuff is on, it tugges on Jacob's skin and really bothers him. So he starts hunching his left shoulder to protect it. It was my job to take the adhesive off that was covering the cream. Jacob was in full sobs. I felt horrible trying to take it off gently with adhesive remover. The nurse gave some suggestions for future visits - like not using the tape and just putting press and seal wrap over it. That could be a temporary fix when we are in clinic. I don't know what the answer is in the hospital - obviously we don't want to bump or pull the needle out.

So. Stupid Tape. Stop sticking to my boy when it's time to come off. So Stupid!!!