The Details (days +42-43)

So now that I have some free time and I've gotten a full night of sleep I'll update your on the details of the last couple of days.

Discharge Day--Thursday started with a jolt. Olivia's primary nurse, Lauren, came by to check on us. We all love Olivia's primary nurse but she hasn't worked much over the last couple of weeks, she was on jurry duty but she came by on our last day just to see Olivia. I woke up just as emotional on Thursday morning so I started telling her how guilty I felt that we were going home that day while other kids had to stay. She made me feel so much better, we both had a big cry over the entire situation. Everybody walks a different path and has different challenges and blessings. After our heart-to-heart I was able to focus on Olivia and her special day. Our emotional conversation was immediately followed by a phone call from the PMBT clinic where Olivia will go every day for her follow-up appointments. I thought that they were calling to remind me of the time for Olivia's appointment but instead they were calling to warn me that our insurance authorization had expired on August 31st and we would need an updated authorization before our visit. WHAT?!? **insert explicitive here**, ARE YOU KIDDING? Of course I have a minor meltdown. I am so tired of dealing with this insurance mess! I begin calling everyone I can begin to think of who can help us and no one seems to know anything or be able to help. I spent most of the day on the phone trying to work it out. Meanwhile all the typical discharge stuff was going on. Amy and Mike had arrived to begin unpacking and loading up Olivia's room (I had been too nervous to do it before, I didn't want to jinx our discharge). Then nurses are coming in and out to finalize various details, PT for after Olivia is discharged, our medical supply company that will begin making deliveries that afternoon, etc. Our room was a zoo. It was an impossibly stressful day, the most stressful day we've had since arriving in Durham in June. We finally got back to the apartment and started to settle in. Olivia and Mike took a nap and Amy and I met with our medical supply company representative. Our first night at home wasn't an especially relaxing one but it was wonderful not to be in a hosptial. Olivia ended up sleeping with Mike and I so none of us really got any sleep but it was still much better than the sleep I'd been getting in the hospital.

1st Clinic Day--Olivia's first day in clinic was absolutely wonderful! We got checked in and the receptionist gave me a little tour and then they took us back to the isolated waiting room especially for kids post-transplant. We saw Aiden and his mom, Penny, in the waiting area and it was great to catch up! Aiden is doing really well. We just had to wait a bit longer before we got into an exam room and Olivia was able to take off her mask and have a snack. Everyone was very impressed with how well Olivia is doing. She didn't need platelets or blood so we had a really quick clinic day. We scheduled the rest of our appointments from Saturday through Wednesday. We will be going to clinic everyday until Wednesday but the doctor told us that starting on Wednesday we might be able to slow down to every other day. We'll see how that goes.

Overall things at home are going well. The one exception is the evening IV meds time. Olivia does great but with 3 adults here we all just want to make sure we're dong the best we can for Olivia. Somehow this has ended in bickering and arguing on the part of the adults (mainly Mike and I, Amy is wise to stay out of it). Mike and I both learned how to do labs and administer IV medications but since we were at the hospital at different times we learned from different nurses and each have our own ideas about what we think is best. Hopefully we're one step closer to resolving this issue. We have our list of questions to bring to clinic today and hopefully our debate will be resolved.

I still have tons of pictures to post, pictures of our time with Peter and pictures of Olivia's discharge day. I'm working on it and hope to have some up by the end of the weekend.

Life in the real world - Day +42 and 43

Just time for a quick update tonight. We are slowely adjusting to life in the real world. Discharge day was by far the most hectic and stressful day we've had during the entire process. We had some major insurance glitches that have since been sorted out but it was really tense for most of discharge day. Our first day in clinic was an absolute breeze and I hope that the rest of our days in clinic can go as smoothly. I'll fill in the details later but for now we're "home" in our apartment here and getting settled in. I've taken tons of pictures and will work on posting some of those soon.

Getting ready for the goodbye - Day +41

So tomorrow is supposed to be the big day....Discharge Day. After 52 days in the hospital I am so ready to get out of here. Ready to be one step closer to having a normal life again, ready to be one step closer to having our family back together. I thought I was prepared for discharge. I know as much as I can about Olivia's medicines. I feel comfortable doing labs and dressing changes. I am ready to get out of here! But as I sit here trying to get some sleep there is just one huge part of discharge that I am absolutely not ready for at all...the guilt and the sadness.

There are 16 rooms on 5200. Of those 16 rooms 7 of them are occupied by kids that were here when Olivia was admitted. They had their transplants before Olivia did, they had their chemo before Olivia did, they've been here longer than Olivia has been here, their parents have had more sleepless nights than Mike and I have had, those kids should have gone home before Olivia, but they're not, they're still here. All of these kids are amazing in their own ways, they are all so precious and I wasn't prepared for how much I would care about each of them. This has been a pretty stressful week up here on 5200. With the flu season upon us and cases of H1N1in the area the visitation guidelines are starting to become stricter. Patients are always required to wear a mask when they leave their rooms but as of this week parents, and visitors are now required to wear masks when they are out of the patient's room and nurses and doctors must wear them constantly. I noticed a bright red emergency crash cart outside of a patient's room down the hall, it's a glaring sign that the staff is preparing for something very bad to happen in that room and it just breaks my heart. For the last 2 months the kids on 5200 have become Olivia's only friends, their parents have become my friends. In the same way that only another military wife can really understand what it's like to go through a deployment only another parent of a kid in a PMBT unit can understand what it's like to go on this journey with your child. I know that I should be happy to leave tomorrow and I'm sure that I will be but for tonight I'm just sad. Please keep all the kids here on 5200 in your prayers, especially the special 7.

A Point of Order, Day +40

First I cannot believe that this is day +40, that means Olivia has been in the hospital for 50 days (the 10 days before transplant and the 40 days post transplant). In some ways I can't believe we've been here that long, in other ways I feel like I've felt every aching moment away from Peter. Peter and my mom are leaving today to go back to Texas and it's so hard to see him go again. I know that he's well loved and cared for but he is my baby, my last baby and I'm missing his short and sweet baby phase.

Now for a few points of order (don't you just love Parlimentary Procedure, the sorority girls reading this will know exactly what I'm talking about, good Old Robert's Rules).

After my news yesterday about the gift we received from the Pennies for Nicoll Foundation I've gotten a lot of questions about the NFT trust for Olivia. First of all THANK YOU for your gift in Olivia's name, we appreciate it more than you know. Secondly I apologize for any confusion in the process, we were trying to make it easier for our friends and family members who wanted to make a financial contribution to Olivia's treatment. If a contribution was made in Olivia's name I can assure you that we will receive those funds! Perhaps my law school graduate friends would be able to explain this better but the way we understand it is as follows. The National Transplant Foundation is a 501C3 organization, and they established a statewide fund to collect and hold the funds. The non-profit status means that donations made to the donations made to the fund are tax deductible. Since we are living in North Carolina the money is going to the North Carolina National Transplant Fund in Olivia's name. We are using the funds to cover medical expenses that are not covered by insurance including out-of-network charges, perscriptions, medical supplies, etc. We are reimbursed for those items from the fund up to the total amount that was donated to the fund in Olivia's name. I hope this helps answer some of your questions. On your receipts it may say that you made a contribution to the North Carolina Transplant Foundation but I can assure you that in the end we are receiving the money and we appreciate it so much!

Now onto the second point of order, Olivia's new DNA. I think this chimerism stuff is fascinating. Olivia does now have 2 different types of DNA. Olivia has a new immune system and blood making factory. The chemotherapy and ATG killed her bone marrow (the blood making factory) and the transplant replaced those cells and we've just been waiting for them to grow so she's strong enough to leave the hospital. The donor was a male with O+ blood type so from now on if someone were to do DNA testing of Olivia's blood cells it would show that she was a male with O+ blood type. If they were to do DNA testing of another area of her body, a skin sample for example, it would show that she is a girl. The word chimerism comes from greek mythology, a chimera was an animal that was comprised of multiple species.

I hope this helps answer some of the questions. In other news we are scheduled to be discharged from the hospital on Thursday. The doctors were fine with discharging us today but the apartment wasn't quite ready for us to move in yet so we will be here in the hospital a few more days so that we'll have time to get things in order before discharge. The timing ends up working well since this weekend is Labor day and Mike has a 4 day weekend. We're hoping that he will be able to get to Durham in time to see Olivia's confetti discharge party.