A few hours after posting Tuesday night, I was getting ready for bed when Mollie came downstairs burning up with a temperature of 104°! After taking her temp several times with different thermometers, we decided we better page the on call oncologist and head to the hospital. Unfortunately, it was after midnight and the pediatric ER was closed so we had to go to the adult side.
The ER attending was Dr. Lyons, the same doctor who treated me just before Mollie was diagnosed. He was great- very gentle with Mollie and good at communicating what the plan was. So the plan was to draw labs to measure Mollie's blood counts and do a blood culture; if her counts were good (not neutropenic), she would get IV antibiotics and go home. If not, she would be admitted. That was the good part of the night.
The bad part is that in the adult ER, nobody knows how to access ports! It was a long time before anyone came in to draw blood (I imagine them all standing around in the hallway saying, "I'm not gonna do it. I don't know how to do it."). They kept asking questions about what kind of needle, etc. So, I was worried, but the nurse that finally came in to do it was very kind to Mollie and seemed confident. But, she had no idea what she was doing and she stuck Mollie 3 times before I asked her to stop and get someone else. Finally another nurse came in and successfully accessed Mollie's port- but she was not the most gentle and understanding person and kept telling Mollie that it didn't hurt because she had the lidocaine cream on. Um, yeah, it didn't hurt the nurse. On one of the message boards I read, a parent suggested that every time a nurse tells a child that it's not going to hurt and it does, the child should get to stick the nurse with a needle!!
Anyway, once she was accessed, they drew blood and it was just time sitting around waiting for the results. Mollie slept and I sat in a hard plastic chair. Finally, around 5 am, the counts came back. The neutrophils were on the high side, an indicator of infection, and they gave her the IV antibiotics and we were on our merry way just before 7 am.
I slept for about 3 hours before we had to turn around and go in to clinic for follow up. The blood cultures were negative, but they wanted to access her again to repeat the labs. When nurse Pam accessed Mollie's port in the clinic, she said, "I know they hurt you over there in the ER, so I'm going to be extra gentle." Mollie didn't even bat an eyelash when the needle went in. I so wish we could just drop by Pam's house on our way to the ER!! They were still concerned about infection because the differential showed elevated banded neutrophils, so she got more IV antibiotics and then we were ready to go home. Matt had left earlier to take Lucy home for a nap and unfortunately, my keys, wallet, and cell phone were in the diaper bag. This is what happens when you get no sleep and spend the entire night in a hard plastic lawn chair! We finally got in touch with him and he turned around to bring me my keys and we had a lovely drive-thru dinner at McDonald's before going home. That gave me about 30 minutes to change my clothes before I headed out to teach my Weds. night class!
So, we didn't make it to the zoo (unless you count the ER), but we will go during spring break instead. Next Tues., Mollie is scheduled for a spinal tap/chemo. Beth, Mollie's NP, said her counts may drop after this infection; they will go ahead with the spinal and IV chemo even if her counts are low, but they will hold or reduce the oral chemo if her counts are below 750. So... we'll see what happens. Thanks for all the well wishes and for helping us keep the present box full of goodies for Mollie to pick out after she undergoes any kind of medical treatment/procedure.
What a day!!!! You know, when everything seems so under control for a while, it's easy for those of us not dealing with it everyday to think it isn't so terrible. But when these little events happen, it just reminds you that it's still a 5 year old with leukemia, which really just sucks. I'm glad you and Matt were able to juggle both girls and the zoo ER folks! Hopefully you can get some sleep and Mollie and easily get back on track. Will keep you in our prayers!! Oh, and props to Pam for being so nice and gentle. Good thing the nurse with all the pricks isn't in child oncology!
ReplyDeleteIt makes you really appreciate Kate and Pam. Same thing happened to Gage at our local hospital, I wanted to hurt someone. I hope Mollie stays fever free and that her counts are good and the tap goes well. Try to get some rest during these rainy days.
ReplyDeletewww.caringbridge.org/visit/gagekicklighter
Wow- it definitely sounds like the ER was a zoo-like experience. I agree wholeheartedly with the message board that advocates allowing children to prick their nurses when the nurses claim their needle work doesn't hurt- it should go in the Patient's Bill of Rights! Hope Mollie is able to stay clear of the fever and that you all enjoy your trip to the real zoo during Spring Break!
ReplyDeletearrrggggg! you should learn how to put it in, so you can take over.
ReplyDeleteNicola,
ReplyDeleteI asked about that a long time ago... the clinic frowns on this (liability issues, etc). However, I got permission from the oncs to demand that they put an IV in her arm (they are good at doing that) if they don't have anyone experienced with port access. Might be worth asking about the training again, though.