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!

A really long Day +132

We left the apartment today at 8:45 am to head into clinic and we didn't get home until 3:45 pm. After our long day in clinic we got a few answers and we have a few more questions. Today seemed like a very surreal day. There were several moments today when I looked around the cramped 6 x 6 exam room and thought "how did this become my life." The kids were both so well behaved today. I'm sure that Olivia is beyond tired of going to the clinic and Peter is the most well behaved one year old in the world. As we were reaching the 6 hour mark of being in our small exam room there were several nurses in the room and we were discussing one of Olivia's medications. Peter was crawling all over me, literally he was crawling all over me. He was so desperate to be able to crawl around but there's no way I'm going to let him crawl on the dirty hospital floor. I finally just pulled a chair over to the sink and rolled up his sleeves and let him play in the water so that I could concentrate on what we were talking about. Everyone at the clinic today was so fantastic. The nurses helped entertain the kids and even offered to watch them when I ran to the restroom by myself (such a treat)!

So now for the medical stuff.

Olivia's poop, snot, and blood have all been tested so many times for so many different things! Out of all the tests we FINALLY have a positive result, Olivia has norovirus. It's a stomach virus that causes nausea and vomiting, loss of appetite, and dihereah. Norovirus may sound familiar, it's been in the news a bit, in March 2009 there was a norovirus outbreak on a Holland America cruise ship. Typically it lasts between 12 and 24 hours but it can last for several weeks in someone with a compromised immune system. They think that Olivia may have had norovirus a couple of weeks ago when she stopped eating and it's great that at this point Olivia is starting to feel better. There was some debate over wheather or not to treat it because she's obviously feeling good. Typical treatment is oral immune globulin for several weeks. Olivia already gets IV immune globulin (IVIG) once a month so we're familiar with immune globulin. They did decide to give Olivia one week's worth of oral immune globulin. Olivia seems to like the way it tastes but unfortunately we cannot get the immune globulin from the pharmacy, we will have to go pick it up every day from the hospital.

While it is nice to know about the norovirus it is not the source of Olivia's high white blood count. Today Olivia's white blood count was up again, it was 31. Post-transplant a high white blood count is indicitive of a bacterial infection but again all of the cutures are coming back negative. We had a short but intense discussion today with Dr. Paul (Olivia's primary physician here at Duke). It is his theory that Olivia has some sort of bacterial infection in her intestines or her sinuses but that the antibiotics are keeping it under control but it is still irritating enough to her system that her immune system is doing it's job and fighting the infection. We have a CT scan scheduled for Friday morning so hopefully that will provide some more information. In the mean time they changed Olivia's antibiotics again to make sure that she is continuing to receive a broad spectrum of antibiotic coverage.

As a side note I finally remembered to ask about the results of the chimerism test to determine the percentage of donor cells. I'm happy to report that Olivia is now 100% donor cells and her body is producing the enzyme that she was previously unable to produce. We're still waiting to see how much of the enzyme her body is producing and there are more tests to determine this at the 6 month and 9 month marks.

Part of the reason we had an extended visit at the clinic today is because we were unable to get blood return from Olivia's port. They administered a dose of TPA but were still unable to get any blood so they sent us to radiology for a "dye study". I know there's a long medical name for this test, something to do with fluoroscopy but basically they put some contrast dye into Olivia's port and then used x-rays to look at how the dye was entering Olivia's bloodstream. They wanted to make sure that there is not a clot forming or scar tissue. Fortunately we were told that it's just a fibrus sheath so we'll just have to wait for it to disolve and continue to adminster TPA and heparin to help break down the sheath. They did administer another dose of TPA and decided to leave it in for 4 hours to help break down the sheath. We were able to leave the clinic around 3:30pm but had to come back at 7pm so that they could check to see if the port was working again yet. It was poring rain and our nurse practicioner was nice enough to meet me at the car and help me get both the kids up to the day hospital so that he could check for the blood and then helped me get the kids back into the car. Unfortunately Olivia's port still didn't want to give us any blood.

The really unfortunate news is that Olivia will have to be stable for at least 2 weeks before we're able to leave Durham so that means that we're not going to be going "home" to Fayettville for at least another couple of weeks. I'm trying to be positive and think of things that we can do in the Durham area. I think that I might buy some Christmas decorations for the apartment, I'm hoping that will help cheer us up a bit.

Oh and on top of all of the fun we had at the clinic all day once we got home Olivia managed to find my phone in our enormous diaper bag and she forwarded a text message that I had sent to my mom to EVERYONE in my phone. So if you got some cryptic text message saying something about how I called you but you didn't answer and we were home from the clinic please disreguard it. Whoops! It was really nice to hear from so many friends and family members though! Sorry everyone!

Day +131, Clinic or Social Hour

Today the plan was to go to clinic and have Olivia's labs drawn, then get her CT scan (from her head to her pelvis), and then head back up to clinic to see what her white blood count was.

Instead we went to clinic, ran into several friends who were in the hospital when Olivia was in the hospital. Saw several of our favorite nurses both from clinic and from 5200 as well as some of the members of the family support staff. Everyone is pretty much in the same boat in terms of not being allowed out of their houses/apartments to socialize so it's nice to talk with other adults, even though we're in an isolated hospital waiting room for PBMT patients instead of a coffee shop.

They did draw Olivia's labs but we didn't go down to have the CT because we are still waiting on the pre-authorization from our insurance company. The CT will be rescheduled for later in the week. They did want us to wait to see what Olivia's white blood count was so we went back to the isolated waiting room to socialize some more.

The nurse practitioner came in to let us know that Olivia's white blood count is down. It's only 26.7 today which is still well outside the normal limits but much better than yesterday's 40.7. Wednesday is our long clinic appointment day so we'll see what tomorrow brings.