Day +180, cross-dressing

Today we had beyond a long day at clinic. We got up and out the door on time. We arrived at clinic and I realized that I'd forgotten to bring a urine sample. We headed to a bathroom, hoping that Olivia would be able to provide to provide the sample. Unfortunately Olivia didn't need to pee but she did poop in the potty. I was especially relieved to see that she had pooped as she hadn't had a bowel movement since Saturday and I was starting to become concerned. Olivia was due for her monthly dose of IVIG so we headed over to the day hospital. Olivia got settled in and we found out that she'd lost some weight since last week. Shortly after we arrived the PBMT scheduler came in to let us know that she had called ahead and they might be able to get her in early for her Echocardiogram. WHAT? What echocardiogram? It turns out that they had scheduled Olivia's 6 month studies for today. I was livid! I had started talking about the PBMT scheduler in November about scheduling Olivia's 6 month studies. My Mom arrives on Sunday to take care of Peter so that I could focus on taking care of Olivia during the extra tests that I thought had been scheduled for next week. Apparently we had a major miscommunication and all of her tests were scheduled for today. Things went down hill quickly when I learned that Olivia was also due for her monthly anti-pneumonia breathing treatment. Things started heading downhill quickly! Peter was tired and ready for a nap but I wanted to keep him awake for a few more hours so that he would hopefully sleep during some of her other tests.


Why won't she just let me sleep? I guess I'll play peek-a-boo with the curtain.

Fortunately the PBMT scheduler was able to reschedule Olivia's echocardiogram and pulminary function tests for next week but she couldn't change the CT scan. I was able to keep Peter awake for a couple more hours and then he feel asleep just as they were starting the pre-meds for Olivia's anti-pneumonia medicine. The doctor and nurse practitioner came in for their visit. We're walking a really thin line here (pun intended) with Olivia's weight, she was down again to 14.6 KG. Olivia is eating well but as she's becoming more active she's also starting to burn more calories. She looks thin and doesn't have an ounce of body fat so if she's using more calories than she consumes then her body starts to use her muscle to fuel her body. Aside from her weight Olivia is doing very well. She's talking more and gaining strength. The consensus was that we aren't quite ready for an appetite stimulant but we are going to try a medicine to help her body absorb and digest the food. After the doctor left we finished up her breathing treatments and then we headed downstairs for the CT scan. Unfortunately Peter woke up as we got there for the CT scan. There's always a wait for the CT scan and today wasn't an exception. The CT attendant (I'm not sure what her real title is but she's the one who keeps people in the waiting area in line, she makes sure people drink their contrast solution and then gives them snacks afterwards) was really great about helping entertain Peter and Olivia. She told me that they wouldn't allow Peter in the room with us. I know that Peter has gone in before (and sat behind the double glass with the technicians) but I wasn't in the mood to argue today. A nurse came over and She did offer to watch Peter while I went in with Olivia. After the long day I'd already had I took her up on her offer. I got snacks, toys, and sippy cups ready for Peter and I headed into the CT scan room with Olivia. Olivia is becoming a pro at the CT scans. We stopped by the pharmacy to see if her medications we ready, they were not. We headed back up to so that they could deaccess Olivia's port and then we headed back down to the pharmacy. I was dying for a bathroom break and at that point I realized that I hadn't changed Peter's diaper all day. I had checked him right after we got to clinic and he was still dry then he was playing and then I put him down for his stroller nap and I hadn't picked him up yet. He was soaking wet, along with his pants and the stroller seat. I pulled out my spare outfit baggies. Apparently I had not restocked in a while, all I had for Peter was a onesie. I checked Olivia's spare outfit bag and found a pair of pink pants, those will have to do. The cross-dressing begins. I couldn't help but laugh every time I looked at him.


I can't believe she's making me wear these pink pants.





We stopped by the pharmacy to pick up our meds and then loaded up the car. We pulled out of the parking lot and headed home. We got home at 5:30, we had left the house this morning at 8:30. It was a long day.

Thank you God for giving me patience and a sense of humor. Thank you for the wonderful nurses and staff at Duke. Thank you God for the CT scan attendant who watched Peter and for the CT scan technicians who happily joined me in "Old MacDonald" and "B-I-N-G-O" during Olivia's CT scan. Thank you God for the peaceful naps that the kids both took on the ride home and the fabulous tunes on the radio to keep me company on the drive. Thank you for my wonderful husband who had dinner started and a cocktail waiting for me when we got home. Thank you God for sending my Mom to help next week!