Finally Sunday, Day +136

I'm so relieved that today was finally Sunday, hopefully we're one day closer to going home. Peter slept in until 7am today. I know he would sleep longer but he starts to wake up which wakes me up and then he sees me moving and starts screaming. Among other things I'm really looking forward to everyone having their own room again when we go home. I got everyone bundled up and we headed to the hospital to pick up Olivia's medicine. It was so boring here today. It looked beautiful outside today, the sun was shinning but it was cold. It would have been really nice to go out for a walk but I didn't want to expose Olivia to the cold so we were stuck inside. We built an enormous fort and had fun playing inside of it. Then I pulled all the cushions off the couch and let the kids jump off the couch onto the floor. It was good exercise for Olivia and Peter enjoyed scrambling around. Peter and I did have a little moment earlier. He had an absolute meltdown when I wouldn't let him take the flashlight away from Olivia. My darling little boy has a bit of a temper and he's accustomed to getting his own way. Olivia had the flashlight and he took it from her. I gave it back to her and told Peter it wasn't his turn yet. He took one long look at me then he started huffing and puffing like a woman in labor. It was all I could do not to bust out laughing. When he realized he was not going to get his way he let out the loudest wail! I think this was the first time I haven't let Peter have his own way.

Mike finished another jump today, it was a foreign jump with the Canadian Armed Forces. I wish I could have been there to see him. We had been planning to go see him, the doctors had even given us the okay for Olivia to go since we'd be outside and there wouldn't be too many people around but with Olivia's complications this last week it wasn't an option. I'm glad he had fun and glad that it's over.

Basically we spent all day destroying the apartment, it's not dirty but it is a disaster. I have a lot of straightening to do before I can get to bed. I'm ready for the new week to begin. I can tell that Olivia is feeling better but I think she's just ready to be done with all of this as well. She keeps asking to go "bye bye".

I wish I'd taken a picture of our awesome fort from the outside but I did get a couple pictures of us playing inside the fort. Olivia was totally saying "cheese" and smiling but since it was dark inside the fort I had to have the flash on the camera on and she closed her eyes every time I tried to take a picture.
Peter's meltdown because it wasn't his turn.
He's all smiles when he gets his way!

Keeping Busy

Last night I spent some time trying to find activities we could do over the weekend since we won't be able to see Mike. He was scheduled to jump today but it was postponed because of the weather. I'm glad that he didn't have to jump out of a plane in the rain, I'm sure it's scary enough when the weather is beautiful. He still couldn't come in to Durham because the jump was rescheduled for tomorrow. I was looking for some fun, creative things to do this weekend and I decided we could make some Christmas gifts. We had a baking day today. Olivia had fun helping me and Peter had fun making a mess. As I was cleaning up from our baking activities I thought about how successful our day had been. I started to look forward to my Sunday evening shows and packing the diaper bag for our trip to clinic the following day, and then I realized that it wasn't Sunday and I was so depressed! We still have a whole day to get through tomorrow before we can start the next week. I'll have to think of something we can do tomorrow to keep us all occupied.

Tears, Tantrums, and Triumph

Today we had to be at the clinic at 7:45 am so that they could access Olivia's port and draw her labs before heading back downstairs for Olivia's CT scan. The first set of tears began early in the day. I was in such a hurry to get up and out of the apartment that I forgot to put the numbing medication on Olivia's port site. This "magic cream" temporarily numbs the area so it doesn't hurt when the insert the needle to access Olivia's port. The medication takes about 30 minutes to take effect so I usually put it on as I'm getting Olivia dressed but today I forgot. We didn't have time to put more on since we had to check in for her CT scan by 8am. They did use some "cold spray" to try and numb the area but I could tell it didn't work as well as the numbing cream and of course it was very cold on her skin which led to the first tears of the day. This was immediately followed by our first triumph of the day, Olivia's port worked! The nurse quickly drew the blood for her labs and we headed down to get Olivia's CT scan. Olivia is on contact isolation because of her new norovirus so she cannot wait in a common waiting area with other people so we waited in the isolated waiting area (which in reality was a hallway with a folding chair). Fortunately a room was available in the recovery area so we were able to head over there and get comfortable. Olivia's CT today was scheduled in a sedation slot in case she did need to be sedated. I was fully expecting her to have to be sedated because she was having a CT scan of her head, sinuses, chest, abdomen, and pelvis. Shortly after settling in to our room in the recovery area both Olivia and Peter decided to have full blown tantrums which led to more tears on my part. Olivia couldn't have anything to eat or drink prior to the procedure in case they did need to sedate her. I woke both kids up early this morning so that we could get to our appointment on time so Peter hadn't had any breakfast and he was hungry so he had a meltdown. I had breakfast for him but Olivia couldn't eat so she had a meltdown. Both kids were crying and it felt like we had been waiting forever! Olivia had been begging for water for hours but then she refused to drink her contrast juice for the CT scan so I had to force it down her throat. It was after 10 am and our "scheduled" CT scan was at 8:15 am. Then everything in the recovery area seemed to come to a complete stop because they are going to have some sort of construction project in the next couple of months to reconfigure their space and they needed to all stop and talk to the architect about their space and storage needs. Olivia and Peter were crying, I was frustrated, and tired, and lonely, and tired of doing all of this on my own so then I started crying a bit. After my tantrum I pulled myself together and got everyone calmed down. We met with the "hospitalist" (I'd never heard of that term before, I googled it, apparently it's a general physician who works only with hospitalized patients, whatever, I guess this guy was very proud of the fact that he's a hospitalist). He went over Olivia's surgical and sedation history and we discussed what our sedation options were and developed a plan. They were going to use a ketamine (if you're thinking it sounds familiar that's because it is also known as "special K"----YUCK! I can't believe I'm about to willingly allow people to give that to my child) that could be administered through Olivia's port and they would use very small increments of the medication so that they wouldn't over-sedate her and the hospitalist agreed to wait and see if Olivia really needed sedation before administering anything. At 10:30 am they were finally ready for us to head to the CT room and this felt like a triumph in and of itself. We'd been waiting forever but the positive side of waiting for so long was that I got to spend lots of time prepping Olivia for the CT scan. We kept talking about how she would have to lay really still so they could take her picture and it would be loud. When we finally were able to go to the CT room Olivia was ecstatic! She was so excited to have her picture taken, she kept saying cheese and raising her arms up above her head. I strapped Peter into the Baby Bjorn and we followed Olivia and the nurse off to the CT scan. Peter and I were allowed to go in and help get Olivia settled but then I had to go outside with Peter. I could hear Olivia laughing and talking about toys and animals and saying cheese, picture time. The nurse was awesome, they sang songs, told stories, and Olivia didn't have to be sedated at all! Triumph!

We headed up to the clinic again and got into a room very quickly. Peter and Olivia were finally able to have their snacks and I was able to get one of the nurses to keep an eye on the kids so that I could run to the bathroom. I gave Olivia all of her oral meds (she couldn't have them earlier because she has to have them with food or they make her nauseous and she couldn't have food prior to her CT scan). The nurse practitioner came in and handed me Olivia's labs for the day, her white blood count is down to 11! Another Triumph! I'm so relieved that her WBC is down, I just hope it stays that way. We picked up Olivia's oral IVIG and they deaccessed her port and we got back to the apartment by 1pm.

After we got home I was able to give Olivia her morning breathing treatment and get lunch together. Olivia's school teacher came to the apartment at 2:30 for school and I put Peter down for a much needed nap.

I'm exhausted, it is physically and emotionally draining to take care of both Peter and Olivia by myself. I hate that Peter has to spend so much time strapped into the stroller while I cart Olivia around from appointment to appointment. I spend my entire day dividing my time between the two of them and at the end of the day I feel like I've neglected both of them. Mike is not able to come to Durham this weekend and I don't know how we're going to get through the weekend. We are definitely going to bed early, hopefully we'll all feel better tomorrow. I feel like my life has been on hold since June and I'm ready to get back to "normal." I'm ready to sleep in my own bed and have my own clothes, cook with my own pots and pans, the list could go on and on. I miss my friends, I miss seeing other people, I miss being allowed to go to public places. All in all I'm just having a depressing day so I guess it's my turn to have a temper tantrum.

The absolute highlight of my day was this evening after dinner and before bathtime when we were all playing with puzzles on the floor. Olivia was actually doing her puzzle for the first time in a few weeks, she is finally starting to feel better. Peter crawled over to Olivia and gave her a big hug and then she gave Peter a big hug and told him Thank you. It was such a cute moment, of course it led to tears of joy on my part. UGH! You can tell I'm just exhausted because I'm so emotional about everything.

Shout out to my sister

My sister, Karen, makes the most amazing birthday cakes. My two nephews are some lucky boys, there's nothing more special than having a a custom cake made just for you. It was my sister's idea to decorate Peter's birthday cake with goldfish. Recently she made this fantastic creation for my nephew Braden's 4th birthday.

My nephew Hunter's 3rd birthday was earlier this week and she made this masterpiece!


How cute is that! I love that she filled the truck bed with strawberries! I'm so impressed with her creativity!