A Long Day

It has been a busy day. It started at 3 am when Rebekah woke up and wanted a diaper change and then refused to have her pj bottoms put back on, her nutrition shut off, owie medicine and lotion. Once all that was taken care of, she went back to sleep, but Mommy had a difficult time falling back to sleep. Luckily, she didn’t soak through, so I didn’t have to change sheets, too. At 5 am, the alarms were going off, the coffee pot was making noise and it was time to start thinking about getting up.

We were on the road by 7 am and headed into the hospital. Traffic wasn’t too bad and we made it before 8 (which was our target time). Debbie met us and picked Sarah up. Sarah will spend the night with her family and she’ll keep her until we are done with the PET scan tomorrow.

Remarkably, the day went pretty well with most things happening either early or on time.

First on our agenda was the Panorex. We were able to get in quickly for the Panorex (unlike Monday where it wasn’t until late that we were even able to try it and then Rebekah wouldn’t cooperate). Today, Rebekah stood up for it and did a great job of holding very still. The first try was good, so we didn’t have to do it a second time. Yeah!

Then we headed up for the ECHO and EKG. The chemo drugs can cause heart problems, so she needs to be monitored regularly. They were a little ahead of schedule, so we got done quickly here too. She did a great job of holding still and tolerating all the “leads” and gel without complaining much.

Since we had more than an hour before our next appointment (MRI), we headed over to clinic to see if they could do the blood draw early and then when we came back for our appointment we wouldn’t have to wait for the results from the lab. They were able to do that. It meant one more thing was done on our list.

We were still early for the MRI, but thought we would check in there and see if they were by any chance running ahead of schedule. We talked with the nurse there and made sure that everything was on the plate for the ear wax removal and audiology exam and asked her to add a dressing change to the list of things to be done. They were aware of the ear wax removal and audiology exam and they were all on the same page about that. Nurse Gerry was taking care of everything for us, so that was great! We got our paperwork done and then had some time still before the procedure.

We wandered up to the Pediatric ward and said “hi” to several of the nurses. Rebekah gave hugs to Nurse Stephanie, Nurse Kate, Nurse Shari and Nurse Darcey. At different times during the day, we saw Lisa (Occupational Therapist), Amy (Physical Therapist) and Melissa (Child Life Specialist). We visited with Grandma C for a little while, too and ran into Bronwyn.

Gerry called us, to tell us they were about ready for us, so we headed back to MRI. Once Rebekah was sedated, we headed up to get a bite to eat and wait. The MRI would take an hour or so. While we sat there, we saw Brenda (one of Grandma C’s friends who works at the hospital, too), Sue (the nurse who helped us out Monday) and Gage’s Mom and chatted for a bit with each of them.

Gerry called us to let us know they were about done with the MRI, so we headed back down to wait. Once there, she let us know that the Audiologist was there and that he would be removing the wax and doing the audiology exam and that the IV Therapist was there to do the dressing change. We were glad to hear that everyone was actually in place to get it all done.

The IV Therapist stopped by on his way out and said things were looking pretty good. She has one spot under her arm that was looking a little sore and raw, so he moved the dressing over a little this time.

The audiologist stopped on his way out, too. He was able to get the wax out and said that her hearing was ok. That was great news! There seemed to be a little fluid buildup in her middle ear, but that could be related to “cold” symptoms. He didn’t see anything that screamed “radiation issue”, so we were happy to hear that.

Rebekah woke up crabby from her anesthesia, but we still had her clinic appointment to do. So crabby girl and all, we headed to clinic. Her counts were doing just fine. The Chest Xray looked good, the Bone Scan looked good, the Cat Scan showed a little something that could be a problem or could be from laying on her back during the exam. They want to compare it to the Pet Scan that we have done tomorrow. Next Tuesday morning, the Tumor board will meet and go over Rebekah’s scans. Later on Tuesday, we have our follow up appointment with Clinic, so we should have good details then, hopefully.

We stopped at the bank and at Costco on our way home and just put Rebekah to bed. She wanted to go to bed early, and since we need to get up early tomorrow I figured that was ok. Now it’s time to finish working on dinner and get to bed ourselves. It will be an early morning. We have to be on the road somewhere around 5 am. Ugh!