The weekend and early part of the week were great. To be home with both of the kids and relax is the recharge we so graciously appreciate. Madeleine was readmitted Wednesday afternoon to begin cycle two of 5 total. We expect to be inpatient again for the full cycle, planned for 28 days yet projected to be within the 21-28 day recovery as she did last time, also considering there is less tumor to battle now.
Wednesday night's infusions went off without a hitch and she was still a very happy, expressive and hungry baby all day Thursday. The bummer is that hour 0, or when the chemo has to begin each day, is 12:00 midnight :( so needless to say the first 5 days of treatment are the longest because we don't get any sleep. Thursday night was a roller coaster; we began as usual at midnight with the day 1 drugs, however day 0 drugs had already started kicking in, beginning the dry heave coughs. Going back to cycle 1, it seemed to hit her a little faster than last time. Naturally, that is because some nurses have been doing this longer, and some nurses just know what works better and best for some kids: last time, our nurse made a recommendation of prophylactic measures to keep ahead of the nausea/vomiting whereas this cycle, our nurse did not and the doctors had not initially written for all of those measures.
At 2am Madeleine was up heaving and hungry. I had asked that they look back at the orders from last time and give her something to help her rest, as I recalled we were successful with that last time. Sometime between 2 and 4am the resident figured out what to give her and a fill-in nurse was trying to gingerly talk Madeleine into swallowing 7cc's of medication! This is basically a decent-sized syringe full of awful tasting stuff. Turns out this particular drug is very common and THEY RAN OUT of the IV drug and were having to give her the same anti-nausea medicine by mouth. Now I may not have a medial degree, but it didn't make a whole lot of sense to us to give a 4-month old baby a mouthful of yucky medicine when she's nauseous that she could potentially throw up. Why not explore another option of a similar drug that could be given through the IV? Of course she coughed up a portion of that medicine but that was after the fact we were made aware of the circumstance. And an hour later she was due for the other medicine to compliment the anti-nausea med - another issue with the timing. At 5:30am I was still up talking to our night charge nurse (who we LOVE) and trying to figure out with pharmacy what they weren't going to "run out of" on a holiday weekend....
The thing about chemo is that certain recipes work for a reason, and deviation from what works can be a heart-wrenching experience for the child as well as the parents trying to comfort that sick child. This is the frustration we have as her advocate; of course there will be things out of our control and we have to roll with those punches. Despite last night's challenges, I had a comforting discussion with the attending physician today. I feel comfortable knowing that they are aware of our expectations and how we most definitely feel a part of her care team and are not reluctant to speak up in order to have particular attention paid to one aspect or another. With this new medication she's receiving, she's now finally getting some of the rest she needs and she ate a little earlier today. Hopefully this med will work a little better to alleviate some or all of the wretching and heaving she had last time, and maybe even help her keep her appetite a little more. We're taking it one day at a time.
Thank you for the update..... Ihave been thinking about you and Miss Madaeleine. She is blessed to have such smart and attentive parents keeping the nurses in line. They do the best they can, sometimes their best isn't quite good enough.
ReplyDeleteWe are all praying that her side effects are minimal and she remains strong through all her rounds on chemo. Love you!!!