Last week the phone calls started to remind me of Jesse’s visit to CHKD for her 3 month tumor scans. The first one came on Thursday from sedation. They asked questions about Jesse’s health and treated me like we’ve never done the sedation before. They also informed me that they have a new policy of not allowing parents to be with kids while they are being sedated. I told the woman on the phone that this was not acceptable. Jesse is 4 years old. She is not familiar with all the sedation nurses… I would like to be there to help if she gets upset. I’m not a parent who is going to make things worse. After doing about 52 tape changes around her CVL and being involved with other procedures, we’ve tried to learn techniques to help Jesse cope and get through things. Plus I can see that 2 year old kid in my head again screaming, reaching for me to save her as the nurse carried her through the doors to the surgery room and her biopsy… and I swore I would never ever let that happen again.
So needless to say.. I have been a little jacked up (more than just the anxiety of scans) figuring that I was going to have to get really nasty. I hate unnecessary drama.
Thursday Jesse and I made the trip to CHKD. At 9am we met with the ultrasound technician for a scan of Jesse’s kidneys for her nephrologist. Jesse doesn’t like the ultrasound, but she was very patient and the test didn’t take long. I think she doesn’t like the gel, which I can’t blame her. After the ultrasound, we traveled upstairs to the nephrologist’s office. They were very excited about Jesse’s improved kidney function. They even said her left kidney was a little bit smaller. Yeah!
While I was doing this with Jesse, my mom was taking Christine to the doctor because she was running a fever. Turns out poor kid has strep. I warned everyone of the nurses even though Jesse was not running a fever or showing any symptoms.
Our next stop was clinic for an IV line that would stay overnight and cut down on Jesse being poked. Poor thing, the plan didn’t really work this time. After getting 2 vials of blood for labs, the vein in her hand blew. We then placed the line in her other hand, and headed down to get the radioactive isotope so it could get in her system for the MIBG scan.
While we were down there I talked with several nurses about the new policy and the director. Turns out that sedation now can use propofol if they have 2 doctors assigned to sedation. When they use propofol, the chance of kids needing breathing help increases. The anesthesia department is watching the sedation department like a hawk because of the risks associated with propofol. However propofol is better to use for the kids because they go to sleep faster and wake up faster and more themselves. It’s a double edged sword. I am still not happy about it, but at least I voiced my discontent to the director of the radiology/sedation department. I just hope that future doctors in the sedation department will work with me and realize that I am there to help not hinder.
After talking with the director, Jesse and I headed back to Williamsburg. She napped on the way home (so you can guess what that meant… she stayed up last night for awhile…)
By 6:30am, we were back at CHKD to begin the sedation process. When the nurse flushed the line in Jesse’s hand, she started screaming and crying. We then got VAT involved to check the line, afraid that we’d have to poke her again. Luckily the line was good, Jesse was just super sensitive to the flushing. The VAT nurse suggested hooking up Fred and doing a slow infusion. This worked so well they tested infusing at the speed they would use. Luckily no tears or screaming.
At 8:15am Jesse was asleep and on her way to MIBG.
By 10:45am, she had been “awake” long enough to leave sedation and go to oncology, where she slept for another hour and half. This is very normal for Jesse when we get sedation.
While she slept, her oncologist came to look her over. She weighs 15.3kg (33.7lbs) and is 93cm (36.6 inches) tall. Her scans hadn’t been read yet, and we found out later they might not be fully read today. At 1pm, her doctor went down to radiology for an unofficial reading.
The consensuses at this point is she is stable. Her tumor has not shrunk, but it has not grown. It is not appearing anywhere else in her body. Being stable is fantastic news and we are extremely thankful to get it 🙂
Now to return to 3 months of “being normal,” except subjecting her to having to go back through her immunizations….