We arrived at CHOC at 3:40 p.m. (Thank you crazy, rainy freeway! So much for my idea of leaving later...) Isaac cried once the car turned off, and I smelled an all too familiar smell - poop. I grabbed him from the back and layed him down on the passenger seat to change him. Not an easy task, let me tell you. (Don't tell Daddy that we got poopies on the leather, please). We finished up, and got out of the car. Threw away the diaper (a mistake.. will explain later..) and went inside the OPI (Outpatient Infusion) clinic, 2nd floor. There is usually a lady sitting right in front of the hallway, behind a table that has masks, hand sanitizer, and other goodies - but she wasn't there. She doesn't allow anyone to pass without knowing the who, when, why and what - and cleaning your hands via sanitizer. (Maybe she didn't want to come out in the rain?)... So, I had to dig deep into Isaac's diaper bag and pull out a clean mask. Got the mask on the squirmy worm, and off down the hall we went.
Walked up to the desk. We don't even have to sign in. They say, "Hi, Isaac!" and wisk us away into the isolation "closet". We got a bigger, upgraded "closet" today, yeah!
Nurse takes vitals. His BP reading was 148/74. Great. She measured it again, and it was 116/66. Still a tad high for a 9-month-old.
She takes his height... by laying him on the half reclined chair, and marking from head to toe. 29 1/4 inches (+/-) Close enough! We then exit our "closet" and walk down to the scale. Surprisingly, masked Isaac does not scream on the way there. Weight: 9.6 kg. He is down a few ounces from last Wednesday. He whines a bit on the way back. (Darn mask!)
Wait for bit, then the nurse comes in and asks if the doctor has been in yet. "Nope!"
Wait a bit longer, and doctor comes in. This time we saw a lady, I am guessing a NP, by the name of Mary.
She asks if they have contacted me for the kidney ultrasound, and I reply, "No, they have not." Oops. Apparently, they were supposed to contact me last week to schedule an appointment. It is a STAT ultrasound, so she was a little irritated that I did not receive a call. She lets me know that I WILL be receiving a call today to schedule. She is concerned about his blood pressure, and I mention that I *think* he still may be having headaches because he is still holding his head, but now he has been banging it (his head) against random objects. She asks the nurse to come back in to check it - 88/60 - better!
To be 100 percent honest, I am freaked about this ultrasound. The last time he had a kidney ultrasound, I was told he had cancer. I am scared that the blood flow to his remaining kidney is not adequate, resulting in his high blood pressure. It is so hard to think positive, but I know I need to, for my sake, but mostly for Isaac. Isaac has also been having diarrhea. She asks when the last time he had a bowel movement. I told her a while ago, in the car. She asks for the diaper. Doh! "I threw it away!" I guess I should have kept it, but who'd have known. That thing was stinky and I wanted to get rid of it A.S.A.P. Carrying it around in his diaper bag was not on my mind at that point. So, they send me off with a cup to take a sample from home and deliver it to our local laboratory, STAT. One of the very common side effects of chemo is constipation. They even send you home with stool softeners. For some unknown reason, Isaac's stools are the total opposite. They are doing 3 tests: stool culture, stool cdiff, and stool rota virus.
She sends the nurse in to access his port and draw labs, but advises her to hold off on the Vincristine (V). She then leaves and says she will be back.
Nurse comes in with her box of tricks. (This is what chemo "looks" like. The syringe at the top with the white label, and the 'toxic' green label is Vincristine - The liquid is clear. The 2 white syringes are saline, and the yellow syringe is Heparin).
By this point, it has been a little over 2 hours since we applied EMLA. The cream was seeping through the top of the Tegaderm-Film that we place over it, and was nearly 100% absorbed. I was starting to get a little worried. I have a huge fear of Isaac feeling the needle that enters his chest. I mentioned this to her, and she assured me that it lasts a good 4 hours after applied. Ok. She accesses his port, and thankfully, not a flinch. She draws blood for his routine labwork, places a nice little comfy film over his port (needle, and line hanging freely) and leaves. We wait for a good 25 minutes, and finally Mary peeks back in to let me know that we definitely need to get the ultrasound done, and check his poopies - but we are good to go.
Nurse is back, and finishes what she started and pumps him full of V. He actually did very well this time, with minimal squirming! Removes the line, and places a Spiderman bandaid over his port.
Next appointment is on Tuesday to draw labs. If his counts come back too low, then they will call me and let me know it's a "no-go". Otherwise, we will be back in the OPI on Wednesday for V AND the dreaded A.
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