Category Archives: Jesse Updates

Today Jesse and I made the early trip to CHKD for her CT Scan.  We left here at 5am (yeah! no really I mean that… traffic through both tunnels is sooooo much better.) We arrived at CHKD by 6:15 am for her 6:30 am appointment. She slept through all of admitting, and woke up when […]

Giving Jesse her shot is pretty traumatic on a daily basis. But changing her dressing around her CVL is a 30 – 60 minute scream fest. We normally start out by “painting ” her dressing tape with detach all. Yesterday I only had the crappy worthless pads from the home healthcare company. If they ever […]

Poor Jesse… even with the anti nausea medicines she still gets sick. We went today to pick Chris up from school. Right now Jesse only wants to eat McDonald’s French Fries. I stopped and got her some to eat on the way. I noticed while we at the school that she was starting to behave […]

Yeah we’re home! The doctors and nurses were wonderful and got us out by a little after 8:00am. I do love traveling back on the weekends (might be a different tune in the summer). Jesse and I were back here by 9:30. She gave my one gagging scare on the way home. Here she’s been […]

Today was Jesse’s last dose of cisplatin. After the 3 doses at regular strength and the 1 dose at 25%, her appetite is gone. And this afternoon as I picked her up to sit in my lap, I got a little surprise…. Thank goodness they have a washer and dryer here. Her energy is reduced […]

Jesse’s hemoglobin was 7.3 yesterday. They decided that they would wait until today to transfuse her. I figured that I would have this kid either needing to move into a trash can and changing her name to Oscar or hyped up like she’d been hanging with her Uncle Jim drinking coffee. I got neither. In […]

Fred let us down last night 🙁 Jesse’s etoposide was infused with no trouble. Then after an hour her cisplatin dose was still mostly in the bag. The doctor, pharmacist, and nurse decided to stop the infusion. Too much would cause serious damage. They also started investigating last night where the problem was. They figured […]

Jesse and I arrived at CHKD for round 5 this morning. I tried going through the Downtown tunnel because we were running really early. Never again. Interesting tunnel, but took longer and traffic wow! In clinic they had her hooked to Fred the IV Pole by 10am. This is a great thing because we can […]

I like going in to CHKD that early. We were there by 6am 🙂 Jesse is getting used to sedation. She played with the toys and walked around talking to the nurses until it was time for her to go to sleep. I put Scooby Doo on the ipod for her to watch. She fought […]

Tomorrow Jesse and I will leave here to travel to CHKD for her audiology test. Because of her age they will put her to sleep… I don’t know how it works being asleep. Registration by 6:45am. Test is at 8 am and will last 45 to 90 minutes.  After she is able to eat and […]