We started today off with heading to DuPont for an ortho appointment. Dillon has been having stronger, longer seizures and crying out in pain. I have noticed he is holding his legs in weird positions sometimes too. So, naturally, I am thinking he is having pain from the hardware still in his legs from surgery 13 months ago. On the way down Dillon's pulse ox went as low as 79%. Thinking there was no way this was accurate the nurse turned off the machine and turned it back on. Suddenly he was at 100%. Weird! Ok... so the pulse ox isn't working quite right, continuing to DuPont!
Once there the doctor looked at him but didn't see any sign of pain (of course!) even though he was in a lot of pain for PT yesterday and cried out several times. So we went over for an X-ray.
His nurse took him back for the x-ray and after several minutes a nurse came out to get me and said to go on back. I was a little confused becuase I thought we were going to ortho when the x-ray was done. She then stated that Dillon was having seizures and that his nurse asked for me. I picked up the pace getting all 3 kid back with me.
On the walk back she then informed me they called a code on him. "WHAT? Why did you do that?" I asked. I get into the room and start saying "We know the pulse ox isn't working right!" over and over again as I put him on my lap to see what was going on. His oxygen was in the high 80's which is a little low but not CODE BLUE low! So I started to figure out what happened. Apparently he was at 95 so the nurse took him off for the X-ray but then saw his tongue was dark. (She had never seen this before, I have seen this even when his oxygen is high 90's) so that concerned her and she put the pulse ox back on and it read 77. Even though she knew it had been acting up there was the chance it was right, so she sat him up and he started coughing up lots of secretions. She was asking the x-ray tech to give her the suction machine, etc. They asked her if she needed help. Thinking they meant more oxygen and/or getting me she said "Uhhh sure" Next thing you know the loud speaker is say
"CODE BLUE ORTHOPEDICS RADIOLOGY"
A moment later there are 20 people trying to cram into this tiny little x-ray room! The main doctor came in sat down beside me (I was still holding Dillon) and start talking to me. He was asking what was going on, what his baseline is, he even introduced himself to Dillon! He sat beside me the whole time, calm and relaxed. They listen to me as I explained what the issue was with the pulse ox. Nurses were listening to him and checking his capularily refills but no one was going crazy. Finally the doctor started yelling out the hallway to everyone else to calm down, it is ok, we aren't going to be doing CPR, everything's ok, etc. I asked them to compare my pulse ox to theirs and sure enough mine was reading 3-5% lower the entire time - which makes a huge difference. So even if Dillon did drop (which I think he did until he coughed up a plug) he probably was not as low as it seemed.
The doctor then started to explain that normally the patient is sent to the ER and I said "Oh, please, don't" and he quickly finished with that he looks fine, I seem comfortable with him, so he would let me make that call. He said "Well I have never released a patient from a code blue to the waiting room, but go ahead." :o) He also asked me if I have medical training, I said No I'm a Mom. I told him I could be a nurse if only colleges give credit for life experience! He said they should hire me on the ICU. :o) One of the other doctor said I looked familiar, she used to work at CHOP in the ICU/Pulm floor so she probably met us there.
After some laughs and being thankful everything was good, we went back to ortho. The ortho doc said his hips look ok so it may be intermittent pain, but to just press on. If he cries out in the stander, keep him in, if he cries out during range of motion, give him some time then continue. I'm sure this is because the doctor knows these kids will learn they have a way to get out of what they don't like and will do it every time from then on. Dillon would totally be able to provoke seizures if it meant he got out of standing, or learn that yelling gets him out. So we have to keep going to help him get the necessary benefits from the stander.
WHAT A DAY! They LITERALLY called a CODE BLUE! wow! I'm just thankful he is ok. We got a new pulse ox machine already today and are planning to buy a finger spot check pulse ox so we will have something to compare to if this ever happens again. All in all it was a "good experience" the doctors listened to me, they stayed calm, they didn't over react. It went as good as it could have possibly gone, but I am glad to be home editing pictures on picnik instead of sitting in an ICU room tonight!