It has been a hectic day.
Grandma A tells me that Rebekah woke up at 12:30 or so this morning and threw up. She called it a flood. It required two nurses to help get things cleaned up and get Rebekah a sponge bath. Once everything was cleaned up and Rebekah was ready for bed, again, Grandma told her that now that her tummy felt better, she could finish her sleep. Rebekah made a face and then layed down and went right back to sleep. That makes two days in a row that she has thrown up around midnight (give or take an hour). Tonight, I cut her food rate down at 10:30 hoping to avoid the midnight vomit session.
I made it back to the room about 8:30 this morning. Both Rebekah and Grandma were awake. Rebekah needed a new diaper (and some new bedding). She does a good job of soaking through her diaper - she gets so much fluid and nutrition that she can easily soak through a diaper in an hour and a half. It is hard to keep up with them. At night, she will often "hold it" and then flood. I hope that is a good sign for having a successful time of potty training her, at some point in the not too distant future.
At 9 am Penny, the speech therapist, came and played with Rebekah for nearly an hour. Rebekah was doing a very good job of using her words and saying please. She was getting her point accross most of the time. It was great to see her doing such a good job with her words and her manners. By the time Penny left, Rebekah had soiled another diaper and soaked through all the layers of blanets in the wagon where she was sitting. So, another diaper change was needed.
A little after 10, Josh and his parents stopped in. Josh brought Rebekah a Dora book and showed her his Trailblazers basketball (even letting her play with it). Rebekah showed him her G-Tube, so he could see one in real life. He is probably going to get one soon. While they were here, Rebekah's new friend Stephanie and her mom came by to say goodbye (she got to go home today - yeah Stephanie). A little later, Stephanie's mom brought Rebekah a Patrick balloon (from SpongeBob SquarePants). It had been given to her and Rebekah had enjoyed playing with it so much that Stephanie wanted Rebekah to have it.
Then at about 10:30, Grandma A took Rebekah for a ride in the wagon and Mom talked with Melissa of Child Life. About 11, Grandma and Rebekah came back with Sarah in the wagon, too and Debbie in tow. Shortly after, Daddy showed up and then Grandma C came. As we (Mommy, Daddy, Sarah and Grandma A) were getting ready to leave to take Sarah for her haircut, friend Fran stopped by to deliver some home made food for us. Fran's food is always delicious and greatly appreciated. She had everything already labeled for us, so that it could go into the "family" fridge - she even took it down and put it there for us. And she brought some cookies, fresh fruit and snacks. What a blessing!
And somewhere during the 10-11 hour, nurse Betsy came in to get Rebekah's antibiotic going (she gets it once a month and it was due).
We headed out to Sarah's haircut and Debbie (and Grandma C) took Rebekah for more wagon rides and Debbie played with Rebekah.
Once we got back, Sarah was hungry and so Rebekah shared her lunch with Sarah. Rebekah didn't eat any of it, but Sarah ate bite after bite and ate darn near half of the meal. While Sarah was eating, Doc came in to examine Rebekah and check in with us. It was a crowded room (once again) with Grandma A, Daddy, Mommy, Debbie, Rebekah, Sarah and Doc. Oh yeah, and at the same time nurse Betsy came in and was getting her chemo started.
After Sarah ate, it was obvious that both Rebekah and Sarah were pretty tired. Sarah and Debbie headed home, Daddy headed back to the trailer to work, and Mommy and Grandma A put Rebekah down for a nap. Then Mommy had some lunch (thanks Fran) and Grandma A had some lunch.
After an hour or so of nap, Rebekah woke up screaming and obviously hurting. I shut her food off immediately, hoping that I could keep her calm enough to not throw up. I also asked the nurse for some Tylenol. It seemed to work. She eventually calmed down and did not throw up. We took care of another diaper change and then got into the wagon for another ride.
Shortly after heading out, we ran into Amy (the Physical Therapist) and a PT student who were coming to look for Rebekah. So we got Rebekah her shoes and out of the Wagon and her pole disconnected from the wagon so she could play with Amy and the student. They did puzzles and played with a ball and then went into the play room for a while. Rebekah always seems to have fun with PT and today was no exception. Then we headed back to the room for another diaper change and Mommy checked in with nurse Betsy.
About 4:30 or so, Daddy drove over and picked Mommy up and we headed out to dinner with our friends Greg and Christine. It was great to get out and even better to get to see them and their little one and visit. Grandma A stayed with Rebekah, so that we could have the chance to get out.
After we got back, Daddy came up and we took Rebekah for a walk down to the Star Lounge so that Grandma A could get her food out of the fridge and then head for home. Rebekah wanted to hang out for a while, so we sat at one of the tables and stacked checkers. Rebekah wanted down and as I started to help her get down, it was clear that she needed another diaper change and the chair needed a disinfectant wipe down. Daddy took care of the chair, while Mommy headed back to the room with Rebekah for her diaper change.
Rebekah got her nightly meds and we called for IV therapy to come and change Rebekah's dressing. It needs changed at least weekly and it had been a week. Daddy headed back to the trailer and Rebekah and Mommy went out for more wagon rides. She was enjoying waving at different patients and liked it when they waved back. She picked out a couple of videos that she wanted to watch and we headed back to the room and put one of them in.
She was being a little crabby and I thought a little morphine might help with that (as well as be a good thing to have on board before her dressing change, which are always traumatic), so we got that for her. Just after she took it, IV therapy showed up. Rebekah immediately started saying "no". She knew what IV therapy was there for and she did not want it. She did pretty well with the change (other than sneezing after the old dressing was removed and the area was cleaned and drying and the IV therapy nurse had her sterile gloves on, which I can't blame her for). We had to get another cleaning wand to clean the area again, which meant hitting the call button to get another nurse (our nurse was helping keep Rebekah safe) to get one and bring it to us. But we got it done and she got a curious george bandaid (as a reward) that she wanted to put on her pants.
After her dressing change, she got a fresh diaper and settled down to sleep. She has been asleep since and is doing well so far. Hopefully, she will have a good night and no vomit sessions. Nurse Heather brought in a big chemo bag for anything that gets contaminated with bodily fluids. We hope that just by having the bag in the room, we won't need it. Not to mention all the other things we've done to try to avoid the issues like slowing down the rate of the food, keeping it diluted, keeping the zofran (anti nausea medication) up and targeting 5 cans of pediasure instead of 6 (we should have 5-6 cans each day).
This evening, one of the IV pumps has been beeping quite a bit, with a variety of errors (some of which I have never seen before). I'm hoping that it will not continue over night. I'm going to head to bed now and hope to get a good night's sleep. At least a good hospital night's sleep.
I've probably missed some of the events for the day, but I hope I've given you a picture of the day.
Tomorrow, we hope to meet with Doc about what the future looks like - what we can expect for scans and clinic visits and to some extent specialist visits. We haven't really had an opportunity to look beyond "chemo" and really want an idea of what to expect.