I had a lot of trouble figuring out what to write about the MRI results, and just put off updating the blog. Luckily, the last month has been pretty uneventful.
After our meeting with the oncologist, we decided to consider Chlorahexidine as something Kendall is allergic to, and eliminate it from her line care all together. We're hoping that this eliminates most of the fevers that she was getting, since she seemed to get one after every time that she was in the hospital and therefore having a lot of chlorahexidine used on her line. The dr said he hasn't seen it be an issue before like this, but there's no reason not to try it out and hope it works. It does mean that we have to have the cap changed on the end of Kendall's line twice weekly, but it's not super difficult to do, so I'm learning how to do it so that we can keep the nurse visits to just once a week.
Kendall had her first maintenance treatment on Thursday, April 10th. She gets a lot of "pre-meds" now... benadryl, zantac, hydrocortisone and zofran all through her line, and then benadryl by mouth, so that adds a chunk of time onto our day, but the nurse on the 10th was awesome and we got out of there earlier than we thought (it's always still a long day). Kendall even had to have a dressing change while we were there, but things went smoothly and quickly. Being in maintenance means that her dose of carboplatin is higher than before, so we didn't know how she would react.
Kendall seemed to do fine that evening and the next day, so while Fin was out having lunch and going to Tumblebees with Nana, Kendall and I decided to go meet some friends and eat outside with them. On the way there, Kendall started crying saying that she was hungry and wanted crackers, so I stopped at Skyline to get her some (since that's sometimes all she'll eat if her stomach is upset) - just after she started eating them, she started crying again and had thrown up all over herself in the car :( Poor girl! I think it was probably a combination of being hungry, slightly nauseated from the extra chemo, and bumping around in the car. Lesson learned, and we will try to avoid car trips in the day after chemo when we can. So our lunch plans were foiled, and instead we hung around at home and cleaned out the car.
The rest of April was super uneventful. I kept hoping to have a huge increase in her numbers, which didn't happen, but they weren't terrible either. We did a lot of hanging around at home, and with the nicer weather were able to get out to the park and play outside a bit. No ER trips and no fevers were a welcome change!
At the end of April, I started learning how to do Kendall's dressing change, because I didn't like the way it was done in the ER the one time we had to go there, and I hate having to call the nurse out when we have an issue. Good thing I started to learn though, because on Saturday, 5/1, when I unzipped Kendall's pj's, I realized that she had scratched her chest so much that her dressing had come loose, and her "tubie" was exposed. Ack!
The chemical/cleaning agent (Chlorahexidine) that Kendall is allergic to is used in this thing called a "biopatch" that they use at her insertion site to help keep infections away. Up until now, it hadn't bothered her at all, but I guess when we finally eliminated it from her line care in every other way, it started causing a reaction. The poor girl had a perfect round circle of bumpy red irritation exactly where the biopatch had been. I had a nurse come out anyway, since I hadn't been officially marked off as being totally competent at the dressing changes, but she thought things looked fine and made me official.
Brett had been in Seattle the week before and missed the excitement on Saturday with her dressing change. Lucky for him, and lucky for me that I needed lots of good experience at dressing changes to become a pro, Kendall did the same thing on Saturday night and scratched her dressing down again. It must really suck to have an itchy belly/chest with a big ol' sticker stuck to it.
She didn't do the same thing again the next night, thankfully, but on Tuesday she woke up with a gross cough and congestion and I noticed her temperature creeping up. When she woke up from nap with a fever of 101.4, and her breathing sounded really fast and icky, I knew we were heading back to the ER... we just can't stay away from that place! Gram met us down there, and we settled in for the evening. Kendall's numbers were high, and we got our standard dose of antibiotics, but they had to take a lot of blood, snot and urine to check for any issues. We ended up sitting there for a couple hours after we were told we could go home, because she refused to pee in the bag so they could check for a UTI. Stubborn girl! As soon as she fell asleep, she went, and we were able to get out of there around 1:30am.
Wednesday, the fever came back around naptime and so we headed back for more antibiotics. We got the results from most of the tests the night before and found that she had RSV again (or still?) so that explained some of the issues. Her oxygen levels were fine though, so we were able to head home to our own beds before too long.
Thursday, 5/8 was Finley's Mother's Day party at school so I took him while Brett and Kendall headed down to the hospital because it was supposed to be chemo day. All her RSV issues landed her a delay though, so after a quick appointment and some more antibiotics to keep us out of the ER that night, they came back home.
No comments:
Post a Comment