Day +69 and doing well

Today was Olivia's long day at clinic. Every Wednesday Olivia is admitted to the day hospital for her weekly IVIG infusion. The IVIG is like an immune system boost. It takes a couple of hours for the medicine to infuse into her system and they have to check her vitals (blood pressure and temp) throughout the infusion process. Olivia gets to sit in a little private room with a sliding glass door. Since we're in a private room she gets to take off her mask. The child life art teacher is always around to provide fun crafty activities. On Wednesdays Olivia gets to see her teacher for a quick visit. She also gets to see her nurse practitioner a couple of times and her primary physician, Dr. Paul.

Our visit today went well. Olivia's numbers are looking great! Her white blood count is 14.2 and she hasn't needed red blood in several weeks. Her platelet count is up to 100 which is great news since the platelets are the last to grow. It can take anywhere from 60 to 200 days post transplant for platelets to return to the 100 mark so the doctor was pleased.

Today was also Olivia's first visit to clinic with a port. I think that it will take a little getting used to but I think we're all going to prefer having a port rather than the tubies. I am not able to access the port, it has to be done by a medical professional. They put some cream on the area to numb the skin then they insert a needle into the port. The needle is attached to a small tube that looks and functions the same way her previous tubie did. The numbing cream definitely helped, Olivia didn't feel the needle going in at all but she did feel it when they were removing the bandage that was placed on the area following yesterday's surgery. It was nice not to have to worry about a dressing change or cap changes today at clinic. Since I'm not able to draw Olivia's blood by myself in the mornings and drop it off at the lab we will now have to go to clinic earlier in the day so that they can draw her labs. After 7 days Olivia will be able to take a bath and we won't have to worry at all about getting the area wet. With her tubies it was quite a process to get her ready for a bath. I'm so glad that we don't have to deal with that anymore! I can't wait to give Olivia a nice bubble bath next week!

The central line ship has docked, Olivia has a PORT.

Today's surgery went well, Olivia is resting comfortably and we're happy to be back home. It was a long day though. Tonight I didn't even try to put her in bed in her room by herself. After everything she's been through I just couldn't do it. She's happily sleeping in my bed.

Initially Olivia's surgery today was to have her triple lumen Hickman catheter replaced with a single lumen catheter. I know that there was some discussion back and forth with the nurse practitioner and Olivia's primary doctor about going to a single lumen catheter versus a port. A port is very similar to her previous tubie but it's under the skin. Ultimately we knew that Olivia would be going home with a port and it will be in place for at least 9-12 months post transplant. Olivia's primary doctor thought that we weren't quite ready yet for a port.

When we got to pre-op this morning at 6am we found out that Olivia's surgery had been bumped back a bit due to another emergency. Olivia was happy and content this morning and we finally got started around 8:30 this morning. The anesthesiologist came in and went over her plan. She had reviewed all of the notes in Olivia's file including her previous "difficult airway" notes from the hospital at Ft. Lewis and she'd also seen the notes by the anesthesiologists here at Duke. I felt comfortable that the anesthesiologist and her team were prepared and ready to go.

The surgeon came in to go over the procedure and then the problems began. He was actually the same surgeon who inserted Olivia's tubie 3 and a half months ago. As he started explaining his plan I became more and more uncomfortable. When the procedure had originally been explained to me I understood that they would "re-wire" her tubie by sliding a wire in place then pulling out the current tubie and replacing it with a single catheter. The surgeon explained that he would first try to insert a new tubie on the other side of her chest and if that was successful then he would remove the old tubie. His backup plan would be to "re-wire" the original tubie. I asked about how that would affect things when they go to transition from a single lumen to a port in another 6-8 weeks. The surgeon had some realistic questions, if that was our ultimate goal why not move to a port right now. All very valid questions and I understood his perspective as a surgeon. I paged our nurse practitioner who called me back, we discussed things. The two attending physicians (Olivia's primary doctor and the surgeon) spoke with each other. Ultimately the decision was made to give Olivia a port. The best case scenario moving forward is that Olivia will continue to do well and the absence of a tubie won't affect her treatment. The worst case scenario would be that she does end up needing a tubie and they would have to go in and do another surgery to place another tubie. From my perspective I think that the port will be better for us. I don't have to do anything to maintain her port like I did with her tubies. She will be able to take a regular bath with her port, she'll be able to move around easier and there's no worry that a port could get pulled out. She can receive antibiotics, blood, platelets, and even IV nutrition (if that becomes necessary) through her port. The bad news is that they access a port with a needle and after all Olivia has been through she's not fond of needles. Hopefully it's something that she'll get used to, she didn't enjoy having her blood pressure taken at first either but now she's a champ!

Ultimately I'm glad that everything worked out. I wish that Olivia's doctor and the surgeon had spoken prior to today. Once we got home I realized that I didn't have anything to give Olivia for pain. When we were in the recovery area I had asked the nurse about pain management and she said we would discuss that when we went over the discharge instructions but then we never got to it. Olivia did have some fast acting pain medication as she was waking up and then they gave her a dose of Tylenol. Olivia was happily eating a Popsicle as we left and I think that she was doing so well that we all forgot about future pain. When we got home Olivia took a nap but then woke up in some pain. I didn't have anything for her pain here other than Tylenol and that was just not cutting it. I called the PMBT clinic and fortunately they were able to call in a prescription for Tylenol with Codeine. It made a huge difference! Olivia was up playing with her puzzles and books after dinner. I took some before an after pictures and I'll try and post them tomorrow.

Thank you for all the prayers and good wishes. I'm glad today is over!

If you're just dying to know more about tubies and ports here's a link to a brief article from web md that seems to explain things: http://www.webmd.com/a-to-z-guides/central-venous-catheters-topic-overview

Just the Two of Us

Amy left this weekend and Mike is back at work so it's just Olivia and I here in Durham. It feels weird for it to be just the two of us, it's been a long time! Of course Olivia and I were in the hospital by ourselves but since we were in a hospital full of people it didn't really feel like we were by ourselves. Now it really is just the two of us and we are having fun. It took a little longer to get everything ready and get us out the door this morning. We had a really long day in clinic today. Olivia's appointment was at 9:30 this morning and then they wanted to do a chest x-ray just to make sure that everything is ok. Everyone is very impressed with how well Olivia is doing but after a 2 week course of antibiotics she still has a runny nose and a bit of a cough. I was concerned, especially going into tomorrow's surgery. The chest x-ray looks great so they were able to confirm that it's an upper respiratory issue and it won't hold up tomorrow's procedure. They did start her on a different antibiotic that has helped to clear up her runny nose in the past.

Once we finished up with everything in the blood and bone marrow clinic we were just in time to head down to our pre-op appointment for Tuesday's surgery. The anesthesiologist nurse practitioner that we met with today was great. Again I am so glad that we're here at Duke, I have complete confidence that the doctors and nurses here have more experience in dealing with kids with Sanfilippo syndrome than anywhere else. Olivia's surgery is scheduled for 7:30 am Tuesday morning. The procedure should just take an hour or so. The are replacing her triple lumen Hickman catheter with a single lumen Hickman catheter. I'm told it's a simple procedure. Keep us in your prayers and check back tomorrow for an update!

Weekend Recap

We had such a great weekend, I'm so sad it's over. On Thursday night I drove to Ft. Bragg, leaving Olivia with Amy for the night. Amy and Olivia had a great time. Mike and I were able to go out to dinner with two other couples and we had a great time. We went out to dinner with 2 of our friends from Ft. Carson (colorado) that Mike met during his second deployment and their dates. We had a great time reminiscing and I got to meet two new friends so at least I'll know someone when we move to Ft. Bragg. They also happen to be nurses in the area so it's nice to get some insight about local hospitals/doctors/medical stuff.

Friday morning Mike and I drove back to Durham in time to take Olivia to her appointment at the clinic. Olivia is continuing to do really well. Friday evening I took Amy out in Durham for a little sister bonding time before she left. We walked around downtown Durham and window shopped a bit. We had been planning on going to a mexican restaurant and having margaritas but instead we decided to check out a Brazilian Steakhouse. It was so yummy and we had a great time! I think I even have a new favorite cocktail....the caipirinha. It's a cross between a margarita and a mojito and it was wonderful! If you're ever in Durham and looking for a unique dinning experience then check out Chamas Churrascaria.

Saturday I took Amy to the airport. I can't believe that she's been here for over a month! I feel like the time has flown by. I've really enjoyed having Amy here. Olivia and I will miss her!

Sunday was a pretty laid back day. We did take a trip to Duke Forest and went for a walk with Olivia. It's a beautiful area and I think Olivia really enjoyed the fresh air, even though she still has to wear her mask. Mike left on Sunday afternoon to head back to Ft. Bragg. Already looking forward to next weekend!

Addition and Subtraction, Day +66

Olivia is doing really well on the oral versions of the medications that she was receiving through IV. She's still eating well and she's making her own blood cells so she hasn't' received a blood or platelet transfusion in weeks. This means that it's time for us to go from a triple lumen to a single lumen catheter. Olivia will still have her "tubbie" for another month or so but on Tuesday they are going to do a very brief procedure in which they remove her current "tubbie" and insert a new "tubbie". This new "tubbie" will only have one access point as opposed to her current "tubbie" which has 3. There was a lot of discussion about putting in a port instead of going to a single "tubbie". A port would be a catheter under a layer of skin. It doesn't need as much maintenance as a "tubbie" and she'd be able to swim and bathe. Unfortunately I cannot access the port, we would need to go into the clinic so that a nurse or doctor could access the port. Since we just made the transition from IV to oral meds they are still very closely monitoring how much of the medication is in Olivia's system. So after some discussion the doctors think it's best that Olivia still have a "tubbie" for another couple of weeks. The process of going from a triple to a single is very simple and only takes a few minutes. Olivia won't have to be under general anesthesia, just put to sleep for a little bit. This is a subtraction we're really excited about!

Last week I met with Olivia's teachers here and we made some additions to her IEP. I am so glad that we were able to get her IEP completed before we moved here! It has made things much easier and if Olivia didn't already have on in place I know that we wouldn't be receiving the attention that we are. Duke Hospital has a relationship with Durham Public Schools and Durham actually operates a full service school "The Durham Hospital School" in Duke Hospital. I think that they do a pretty good job of working with kids who move here and are in the hospital for a while. Olivia's situation is difficult since she's so young and she hasn't been in school previously. It just seems to take them a while to get things rolling. We met to amend her IEP. We talked briefly about Olivia's strengths and weaknesses. She's gained quite a few skills since her previous IEP was written. Overall her fine motor skills have increased and her gross motor skills have decreased. While she was inpatient we worked a lot of things that we could do while she was in bed. We worked on colors, shapes, stacking, cutting so she does a great job at that stuff. Her vocabulary has increased and she's using sentences to express herself. That part of the conversation went well. Then they began the next phase of our meeting. They started with asking me what my lifetime educational goals were for Olivia. As soon as the words were out of their mouth my eyes had started to tear up. I took a deep breath and tried to look around the room. I accidentally made eye contact with the preschool teacher who has been working with Olivia. She saw me tearing up and then she started to tear up and then I lost it. The tears started to fall, the words started falling out of my mouth. I started rambling things about how pre-transplant we had learned that Olivia had a life expectancy of 10-15 years, that she's doing well now but we don't know how much the transplant has changed things. Then I started rambling on about how I want to challenge and support her. As I'm talking I'm getting so angry at myself for crying. Once again there's a situation where I'm supposed to be an advocate for Olivia and I am such a mess that I can't pull it together to make a coherent sentence. Why is it that all I can seem to do in these situations is cry. Of course I had lifelong educational goals for Olivia. Prior to her diagnosis they included things like college and graduate school, now I'm at a loss. I am scared to set goals that are unrealistic, setting us up for failure. I'm scared to set goals that are too easily attainable, thus not challenging her and helping her reach her full potential. Finally the occupational therapist said something about how the answer could be as simple as "encouraging her to continue to develop new skills". Whew! Another deep breath and we're able to continue but now without casualties. I am sure that now these people think I'm an emotional basket-case. Later on in the meeting they see my notebook (a really cute notebook that I made at snapfish that has family pictures all over the cover). One of the teachers innocently remarks that she likes it, oh I see a picture of a little boy, is that your son. And the tears begin again. I'd barely composed myself from the lifelong educational goals mess. Yes, I respond, that's my son, his name is Peter, he's living with my mom in Texas. I hope that this will be the end, I'm so ready to get out of this room. He's adorable the woman responds, how old is he. He's 6 months I respond on auto-pilot, wait no he's not, he's nine months old I correct myself. Oh, she says, you've missed so much. I cannot believe she's saying this. I'm crying again by this point, and so irritated with her insensitivity. Yes, I'm more than aware that I've missed 1/3 of my son's life. I feel like the minutes we've spent apart are forever ingrained on heart. Finally they begin closing the meeting with asking questions about Olivia's family and home life. Of course I am so emotional by this point I am sure that they're only asking about this stuff because they are sure that I'm an emotionally unstable and clearly I need some sort of assistance. Your husband is in the Army they read from something, is he here now. What? oh yes I respond, he's here now. Was he here for this? What are they talking about? Yes he was here when she was diagnosed. He was here for most of the important meeting with the doctors, he wasn't in town when her original IEP was written, he's been back and forth throughout the transplant process. They give me some strange looks. I've learned to talk about Mike's comings and goings with such detachment. I don't think I'm emotional about it at all. My husband comes and goes often, it's just a part of our lives. When will I ever get this emotional detachment about Olivia's diagnosis? When will it become a part of our family story, not a crisis we're dealing with? Thank goodness the meeting ends and I am able to escape. I'm glad the additions to the IEP are finalized. Olivia will work with a preschool teacher for 30-45 minutes 3 times a week. Initially her teacher will see us in clinic then she'll come to the apartment when Olivia doesn't have to go to clinic 3 times a week.


Finally, now to end on a much needed happy note! Here's a video of Olivia, our snack bandit that I got this morning as she was trying to sneak chips for breakfast. It's been a while since I've posted pictures of Olivia (I'm working on that this weekend) but just to warn you. Olivia's been on steroids for a while now so she has some very chubby cheeks. Some of her medications cause hair growth so she has some excessive eyebrows and a mustache. Just a warning. I love her giggle, she's become really funny lately and is so fun to be around. Enjoy.

Day +63, Big Day

Today was a big day in clinic. Lots of changes to Olivia's medications but we're moving in a positive direction. We are now officially off of all IV meds! At this point Olivia is taking 7 oral meds. For those of you keeping track she's on Acycolvir (an anti-viral med), Amlodipine (for high blood pressure), Cellcept (an immunesuppressant which prevents rejection), Enalapril (for high blood pressure), VFend (an anti-fungal med), Prednisolone (to prevent rejection), and Tacrolimus (to prevent rejection). She's also taking an anti-heartburn tablet and a multivitamin. Now that she's made the transition to oral steroids we're hoping that we'll be able to start decreasing some of her high blood pressure medications (she was starting to have high blood pressure as a result of the high dosages of steriods that she was receiving). Some big changes were made today and I'm hoping that Olivia's little body can handle all of it.

The doctors seem impressed with Olivia's progress. She's producing blood and platelets all on her own. Her electrolites and blood chemistry are looking good meaning that her body is efficiently and effectivly processing the food that she's eating. Her sodium and magnesium levels are really good and her digestive system seems to be working really well. In fact her digestive system seems to be working even better than it was before. ****Gross alert**** Kids with Sanfilippo syndrome often have frequent and loose bowl movements. Prior to transplant it was not uncommon for Olivia to have 3-4 poopie diapers a day. Now even with all the antiobiotics she's on Olivia is only having one poopie diaper a day or sometimes just one every other day. And they're nice firm stools, no loose bowl movements around here. It's a little thing but as the primary diaper changer I am thrilled. ***end of Gross alert***

All in all it's a big day. Tomorrow I'm meeting with Olivia's teacher here to make sure that her educational needs are being met. I'm hoping that they will be able to make arrangements to have a teacher come work with Olivia here at our apartment. We'll see how that goes though.

Watch out folks, we've got an active toddler on our hands (day +62)

The change in Olivia over the past week is remarkable. She's more active, she's got more energy, she's more talkative. She's been so much fun to be around!

Over the weekend Amy was gracious enough to offer to watch Olivia so that Mike and I could go out on a date. Olivia was happily tucked into her bed and Amy had just finished unhooking Olivia from her night time IV medicine. Amy stepped into the bathroom to wash her hands. She walked back into the bedroom to find Olivia on the floor with her pillow. Amy didn't hear a thud but seeing Olivia on the floor sent her into a panic. Olivia thought Amy's reaction was hilarious and couldn't stop laughing. Clearly Olivia wasn't injured, she did have a small bruise on the back of her head but Amy was very confused. We assumed that Olivia fell out of the bed but landed on the pillow. We've now come to the conclusion that she climbed out of bed but couldn't get back in bed. Earlier this week I settled Olivia on the couch while she was getting her morning dose of her IV medicine. She was all tucked into her little "nest" on the couch with her blanket, her snack, her juice, and her favorite cartoon on tv. I walked into the bedroom to make the bed. As I was changing the sheets I was shocked to see Olivia calmly walk into the room, carrying her little IV pump with a "hi momma". I don't think any of us realized that Olivia was able to get up and move around by herself quite so much.

When we were first released from the hospital Olivia was needing a 2 to 3 hour nap every day and now she's down to just an hour and a half our so. It was nice to have the extra time to get stuff done but I'm glad that Olivia's recovering.

I love that Olivia is talking so much more. She's hilarious and laughing so much more. Every day she's saying more and more words, things that I had no idea she knew about or understood--Mickey Mouse, Winnie the Poo, guitars, ravioli. She's also loves to play her own version of "marco polo" instead using the word "momma". It's hilarious. Unfortunately she's also started to be quite the little copycat and loves to repeat things she hears us say.

It's so nice to have a toddler around!

Seriously!

I admitt it, I love blogging. I never expected that I would enjoy it, this blog started as a way to share pictures and stories with our friends and family since we live so far away from them. I have become more comfortable sharing details of our life through the blog. When I look back at the things I've shared about Olivia's diagnosis, our insurance battle, and her transplant I am suprised at how much I've shared here on the blog. I have also become a devoted reader of several other blogs. You can see the list of "other blogs I read" on my blog. Many of them are written by close friends of mine. I love that I'm able to keep in touch with them through their blogs. A few of my favorite blogs are written by friends of friends. One my favorite friend-of-friends blogs is My Charming Kids. I was introduced to her blog through my good friend Elena, (Elena is the famous seamstress who created Olivia's one-of-a-kind hospital gowns). I was shocked when I read My Charming Kids tonight and saw this post and a link to an article which discusses some of the recent criticism she's received as a result of her blog. I was shocked! This woman has a blog, she writes about her life---her family, her kids. She has advertisements on her blog and it's my understanding that she may make some money from the ads based on the number of readers that visit her blog. It doesn't seem like a complicated situation. I am completely baffaled as to why she's receiving criticism for this practice. So many questions come to mind.....why would people feel the need to criticize?, why would people deliberately try to hurt or embarass this woman?, why would people not just tune this out if it wasn't their cup-of-tea? Seriously! Get a grip people! I know that not nearly as many people read my blog but this situation just hits a little too close to home. Could anyone read things I've written about Olivia and think that I was trying to exploit her? Seriously?!?

Duke Family

One of the things I was most surprised about during our stay on 5200 was how much I came to care about the other kids that were on the unit. Duke University's PBMT program is very unique in that it is a closed unit (meaning people can't just walk in, all visitors must be screened by a nurse) and many of the patients are receiving transplants for very different reasons. Some patients are there because they have some type of cancer but I would say that the majority of the patients have rare conditions, from blood disorders to metabolic disorders (Olivia would fit into the metabolic disorder category). I did become close with some of the other parents on the unit but I also began to care very much for the other kids on the unit. For several months these were Olivia's only friends. Some were older, some were younger. Some were there before we were admitted and some came after we were admitted, some were discharged before we were and some are still on 5200. Each of these kids touched my heart. These blogs have all been on my list of "other blogs I read" for several weeks now but I've decided to separate them into a special section. For the several weeks we spent on the unit these kids and their parents we our family. I think that in some way the unspoken bond that I have with these kids and their families is similar to the way Mike feels about some of the people he's deployed with. This experience has been so remarkable, so unlike anything I'd ever anticipated, only other families who have lived through it are able to really understand what it's like. They are, and always will be, our Duke Family. Please keep them in your prayers as well. There is one little girl in particular who could really benefit from your prayers and good thoughts.....Rachel. She is a remarkable little girl who has touched our lives and we are blessed to have met her and her wonderful family. If you have time, please check out her story and keep her and her family in your prayers.

Weekend Recharge, Days +57 through 59

Friday's clinic appointment was a breeze! We were in and out in less than an hour. Olivia is doing great! Her cough is gone, her attitude is great. Her weight is down a tiny bit but they are not worried. I still bring my log of everything Olivia eats and drinks to every appointment. Olivia is eating more healthy foods and she's more active so it's okay that she's loosing a tiny bit of weight.

Since we are pretty much on house arrest here it's always so exciting when Mike arrives on Friday evening. This weekend he and I were able to have a special date night all to ourselves, dinner and a movie (Rockfish Grill and Inglorious Bastards). On Sunday I took Amy for her first visit to P.F. Chang's and out for pedicures.

We did have to make a special trip to the clinic first thing on Saturday morning. Olivia's nurse practitioner called Friday evening to tell her that her FK506 levels are still a little high and he wanted us to go in first thing on Saturday morning so that they could double check the level. FK506 is a steriod that Olivia receives through her "tubbie" twice a day to prevent rejection and suppress her immune system. I draw blood from her "tubbie" several times a week before administering the drug so that they can check the level of FK506 in her system to make sure she's getting the right amount of the medication. Since Olivia was discharged from the hospital the level of FK506 in her system has slowly increased so they have been slowly decreasing the amount of medication that she's given. At this point Olivia is pretty much receiving an infant's dose and at 37 pounds she's far larger than an infant. They wanted us to come into the clinic so that they could simultaneously check the level in through her "tubbie" and get blood from a peripheral site (through a stick in her arm) to check for contamination. The FK506 is a very sticky substance so it's only allowed to be administered through a certain part of Olivia's "tubbie". That area will always show a high concentration of the medicine and when I draw labs to check for the level of FK506 I always draw from a different part of her "tubbie". They suspected that since of medication in her blood was still high that her central line may have been contaminated with FK506. Sure enough the levels from her "tubbies" and her arm were drastically different. This sounds scary but isn't actually that bad. It just means that moving forward when they need to check the amount of FK506 in her system then they need to draw blood from her arm. Not an ideal situation but it could be much worse! I'm glad that we caught this quickly and that we're able to work around it.

Adjusting to life outside the hospital, Day +56

As of this afternoon we've been out of the hospital for two whole weeks! I'm always amazed at how quickly you can adapt to new situations with the right attitude. I know that I don't often talk about myself on this blog but I definitely think that's one of my strengths, adapting to new situations. I know it's served me well as a military wife, you move to a new duty station and adapt, your husband leaves for a deployment and you adapt. In general I believe that the most successful people I know are those who are able to easily adapt to new situations and challenges.

So far there are a couple of things about being out of the hospital that I just absolutely love......

-my new video baby monitor. I was really worried about not sleeping in the same room as Olivia but with the video monitor I can keep an eye on her and sleep in a separate room, it's the best of both worlds.

-the TV guide channel. Seriously I hated never knowing what was on TV while we were in the hospital. It's not that I had a ton of time to watch TV but I hated never knowing what my options were.

-I love Bravo! Thank goodness they pay their shows constantly, I've been able to catch up on Top Chef and all the Real Housewives drama.

-The gym. I'm really proud of myself for sticking to my routine and making sure I get some time to myself each morning.

-The grocery store! Of course I can't really go to the store unless someone else is watching Olivia but I love that we have so many options now for meals instead of just having whatever meal was delivered to Olivia's room. I've also discovered that a local grocery store here (Harris Teeter) has an online ordering service so you can order your groceries online and then pick them up from the store and you don't even have to get out of the car, perfect since I certainly couldn't take Olivia to a grocery store.


In other news Olivia is doing very well. She did have a bit of a cold but her cough is almost completely gone now and she's feeling much better. We even spoke with the doctors about transitioning from going to clinic 3 times a week to just twice a week and might make that transition next week. We're still working on getting her speech therapy, occupational therapy, and physical therapy set up but I think we are getting a little bit closer to getting that sorted out. I have a little lab draw carpool going with another mom who lives in the same apartment complex. Her daughter was actually in the room right next to Olivia when we were on 5200. It saves one of us a trip to drop off the labs in the morning. Olivia is getting a little stronger. She's walking around the apartment more and doing more things for herself. She's making good progress and I'm starting to think that us being settled at Ft. Bragg in time for Thanksgiving might not be super unrealistic.

Manic Monday, Day +53

I'm so proud of all we've been able to accomplish today but I'm exhausted! It's a good thing Amy is here, I wouldn't have been able to accomplish half of this if she weren't here. For all of those just dying to know what our Manic Monday consisted of read on, if not just skip to the bottom paragraph for the Olivia update or check back with us tomorrow :)

Woke up, did Olivia's blood draws, started her IV meds, drove to drop off her lab samples at the lab, squeezed in a quick work-out, showered, made breakfast, gave Olivia her oral meds, finally ordered cookie boquet for the nurses up on 5200 (we've been talking about doing something nice for them for weeks), packed for clinic, catch up on all the blogs of friends/family that I read religiously, leave for clinic (already running 15 minutes late), get to clinic, have Olivia color thank you cards for her primary team of nurses, finish up at clinic, run down to the pharmacy to get perscriptions filled, Amy and Olivia go for a walk around the hospital while I run up to 5200 to visit a friend and drop off 3 of our 5 thank you cards for Olivia's primary nursing team, drive home, make lunch, get Olivia down for her nap, go back to the pharmacy to pick up the perscriptions, drop off the final 2 thank you cards for our primary nursing team, check the mail, make a quick trip to the grocery store, clean up around the apartment, return some phone calls, pay some bills, cook dinner, go for a short walk outside with Olivia around the apartment complex, give Olivia her bath, administer night time IV and oral meds, get Olivia to bed, veg out in front of the TV and write this fabulously interesting blog entry. I'm exhausted and can't wait to go to bed but I have to wait until Olivia's IV medicine is done (this process takes 2 hours) before I can turn in.

Olivia news: All results from the "snot test" (respiratory viral battery) are negative. Olivia's counts are looking great, she's making platelets, and red and white blood cells on her own. She still has a cough and given her prior history (before transplant) of sinus issues they are starting her on an antibiotic to see if it helps things at all. Kids that have sinus issues prior to transplant often have sinus issues post transplant until their new immune systems are up and running. Her weight is down a bit (about a pound) but not enough to be super concerned about, we'll just be encouraging her to eat and drink more these next couple of days.

Weekend Recap

We all really enjoyed our first weekend without any visits to the hospital since Olivia was discharged. I didn't have to do any early morning blood draws which meant no early morning trips to the lab. We all got to sleep in! The days seemed so long, amazing what you can accomplish when you're not spending several hours in the hospital in the middle of the day. Olivia told her first joke this morning as we were all in the kitchen preparing breakfast. Olivia had announced that she wanted eggs this morning (a first since the days of nausea and vomiting following chemotherapy) so of course we had eggs. Amy asked Olivia is she was excited about having eggs and Olivia promptly replied with "noooooo" with the biggest grin on her face then she immediately followed that with "silly girl" and started clapping. It was too cute! We had a really relaxing weekend, we grilled steaks, we had a guitar hero tournament (I lost, Amy and Mike tied), we watched the USC vs Georga football game. Olivia still has her cough but it's slowely getting better. She was able to walk around for a bit (covered in SPF 55 and UV protective clothing--her skin is super sensitive to the sun as a result of the chemo). Now I'm enjoying Big Brother while having wine, cheese, and crackers for dinner. It was an awesome weekend!

Day +50 Cough Cough

Our appointment today at the clinic was for 11 am but Olivia spent most of yesterday afternoon coughing and didn't sleep well at all last night so we headed into the clinic first thing this morning. It sounds like she's trying to clear her throat, it's not a very deep cough at all so at first I wasn't really concerned but it's so persistent and it seems to be getting worse. She seems fine one minute and then the next minute she's having a coughing fit and just can't seem to be able to stop coughing. Her cough is now accompanied by a runny nose, only while she's coughing but still it's there. The nurses and doctors took my concerns very seriously, I have no doubt that Olivia's health and well being is their utmost concern and we're in good hands. Since Olivia had some cold symptoms we went straight to a private isolation room instead of the general secluded area for PBMT patients. They did a "snot test" (also known as a respiratory viral battery) and we should get some preliminary results tomorrow afternoon with final results next week. This test will look for common infections, flu, etc. They also spent quite some time listening to Olivia breathe. At first I was a little worried because when we got there Olivia was all smiles, not a cough or runny nose in sight but soon enough she started coughing again so they were able to get a good listen. They said it sounds like she's inhaling just fine but the cough is happening on the exhale and she's also exhaling slowely. They couldn't tell if that was because Olivia is tired of coughing so she's trying to slow down the air she's pushing out so that she doesn't cough or if it was her lungs not being able to push the air back out as quickly as it was coming in. This could be the result of something going in in her lungs or it could be asthma related, or it could just be a cold but because of Olivia's airway issues it might be seeming like asthma. They decided to order an breathing treatment in case it was asthma and do a chest x-ray so that they could get a good look. Olivia walked down to the x-ray area with me and was so well behaved! She sat so still and she didn't cough once all the way down there or on our way back. I've noticed that the cough seems to be less persistent when she's up and moving around. We got back upstairs to the clinic and her breathing treatment was ready. They had to put a mask on for 10-15 minutes for her to receive the breathing treatment. I was nervous about how that would go, it can't be comfortable to have a plastic mask taped to your face blowing oxygen down your throat but Olivia handled it like a champ. The breathing treatment didn't make a difference at all so we've ruled out asthma. The chest x-ray came back and looks good so that didn't provide any answers. At this point it's most likely that it's some sort of infection, most likely a very mild one since Olivia doesn't have any fever and her appetite and attitude are still good. The doctors here are on high alert for flu symptoms so they did start Olivia on tamiflu just in case it is the flu but at this point that is unlikely. Since we've gotten home she did cough a bit this evening but she was able to take a long nap and seems to have gone down for the night so maybe we are all over-reacting and it's just a case of the sniffles....I hope that's all it is!

Day +49, Ups and Downs

Olivia is doing well, meaning she's taking her oral meds and eating and drinking. I think she really enjoyed not having to go to the hospital today. We all slept in but Olivia slept until 10:30! It was really nice just to have a day to relax. We didn't do anything exciting at all, just hung around the apartment.

Today was a day full of ups and downs for me. I learned last night that one of the kids that was on 5200 when Olivia was admitted passed away. My heart is so full of sadness and compassion for him and his family. Please add them to your prayer list. I also cannot believe that it's already been an entire week since Olivia was discharged from the hospital. It feels like this week has flown by. We still haven't gotten physical therapy and speech therapy worked out. I know how important it is for Olivia to receive these services but I am not about to risk taking her into a therapist's office to receive them, especially since cold and flu season is just beginning. We are working on finding home based therapists who could come to the apartment but this process requires a lot of coordination with the insurance company so it's time consuming. I was also interviewed this afternoon by the staff writer for Gamma Phi Beta's quarterly magazine The Crescent. She's working on an article about the benefits and importance of umbilical cord blood banking. I was all to happy to share some of our experience with her but it was emotional to reflect on everything that has happened in the last couple of months. I'm feeling so blessed that Olivia is doing as well as she is doing. As Mike and I start looking for potential places to live near Ft. Bragg I am really starting to look forward to having our whole family together again. I really miss Peter, I am missing so much of this short, sweet, baby phase.

Day +48 Good News

Olivia is continuing to do really well. The doctors and nurses are very impressed with how well she's doing. She does have a bit of a cough but it's not something they're really worried about at this point. We still aren't allowed to go anywhere other than the clinic and the apartment but after spending several weeks in the hospital I feel like we have tons of options! Today we learned that we only have to go to clinic on Monday, Wednesday, and Friday. This means that I only have to draw Olivia's labs and drop them off on those days. I can't imagine what we'll do with all this free time! I'm hoping we can get her physical therapy started ASAP. I did speak with the doctor about Olivia's trouble bending down and picking things up. Apparently one of the other side effects (particularly with kids with SanFilippo syndrome) of continuous high dossage steriods is that the muscles in their trunk area become weak. According to the doctors the fact that Olivia is up and moving around enough for me to notice this sort of thing is really good news. We also discussed that gross motor skills are some of the quickest skills to return so it's good that she is still maintaining and improving her cognitive and fine motor skills.

Our New Schedule, Day +47

We are continuing to adjust well to the real world. We still have so far to go before we get anywhere close to our normal lives but being out of the hospital is definitely a start. I've noticed that that are a couple of big changes in Olivia since we've left the hospital....here's the list:

-Talking more, using more sentences, talking to more people
-Fine motor skills have definitely improved. She's lacing beads on a string, she can label her shapes and her colors consistently and correctly.
-Gross motor skills have definitely declined. I was expecting this after several weeks of her being in the hospital but it's still hard to watch. She will drop something on the floor and then bend over at the waist to pick it up and then is not able to easily stand up again. She also can't go up and down stairs by herself anymore and forget crawling up or down from the couch or her bed. Physical Therapy is in the works but I'm sure it will be a little while before we see some real improvement.
-More social with strangers (a good thing in our case since Olivia was painfully shy). She will now give high fives and wave
-More interested in pretend play, will pretend to have her frog jump around or sit on a book
-More interested in television. She still doesn't love the TV but there were a few PBS shows that she really seemed to enjoy while in the hospital, Elmo and Sid the Science Kid are her favorites.
-She's much more verbal about expressing her feelings or preferences and is getting better about telling us what hurts, what she wants and doesn't want


Now that we've been out of the hospital for several days we've established a little routine so I can share what our days here are like. It's breathtakingly exciting, I'm sure you all sitting on the edge of your seats :)

7:15 am--My alarm goes off, the coffee starts brewing
7:30 am--I do Olivia's labs and start her morning IV meds. I can't believe how I comfortable I feel doing all of this! I draw blood from Olivia and then I administer her steroid by IV and then her FK 506 via IV using a pump since it goes over 2 hours. Both of these medications suppress Olivia's immune system in hopes of preventing Graft vs. Host Disease.
7:45 am--I leave Olivia and Amy to go back to sleep while I drive to drop off her labs.
8:10 am--I am back from dropping off the labs and I go to the gym in the apartment complex.
9:00 am--Back from the gym, I shower, pick up around the house a bit, wake up Olivia and Amy, get breakfast together, administer Olivia's oral meds (she takes 7 plus a multivitamin and an anti-heartburn tablet).
10:30 am--Leave for clinic
11:00 am--Appointment at clinic, at least 2 hours, today it was more like 4.
3:30 pm--Home for late lunch and a couple of oral meds for Olivia and then she goes down for a nap while I do very exciting things like pay bills, fold laundry, and blog.
5:30 pm--Wake Olivia up from her nap, play and get dinner together
7:00 pm--Bath time for Olivia
7:30 pm--Time for the night time IV meds and then some more playing
8:30 pm--Night Time oral meds and bed
9:00 pm--Clean and attempt to get things organized for the next day all while obsessively watching Bravo and the TV guide preview channel both of which I missed dearly while in the hospital as we didn't have either
11:00 pm--Sleep! After an hour or so of thinking I will fall asleep with the TV on I finally just turn it off.

Date Night

Thanks to Aunt Amy (see earlier post) Mike and I were able to have our first official date night since June 26th. After much discussion we finally decided on the Melting Pot, which has been one of our favorite date spots ever since we went to the Melting Pot in South Carolina while I was in grad school. Mike had just finished Ranger school and was literally starving. When I told him it was a fondue spot he did not have high expectations but he left stuffed.

We went to the Melting Pot here in Durham and this time we really were able to limit ourselves to just cheese and dessert (we always say we're going to do this but we always end up caving in and getting a full 4 course meal). They asked if we were celebrating anything special. How do you answer that....yes actually, we're celebrating our first date night in more than 2 months because our three year old daughter has been in the hospital receiving chemo and a blood transplant and we only see each other on weekends. Instead we opted for a much more generic "just celebrating spending some time together since Mike is at Fr. Bragg and I am here in Durham". The waiter asked Mike which branch and Mike responded with Army, there was some other brief back and forth and then we continued with our meal. As we finished up our yummy chocolate fondue the waiter came back and said that the manager is a big supporter of the armed services and that our meal and our bottle of wine was on the house. We were so pleasantly surprised. Our gratitude was obvious in our faces. Of course I cried a little as I cry a little all the time now. What a blessing!

Forget the fondue forks and just eat melted chocolate with a spoon.

The Amazing Aunt Amy

Our first couple of days out in the real world have been surprisingly smooth. Mike and I are so thankful that these first few days outpatient have gone so well and we know that this is all due in large part to the Amazing Aunt Amy! My sister Amy has taken the semester off of school to be here with her Goddaughter. She has cleaned, sanitized, unloaded, chauffeured, entertained, cooked, babysat, washed, dried, shopped, unpacked, and organized. We all love having Aunt Amy around and we don't know what we'd do without her. Thank you Amy! We love you!


Discharge Day

Chilling with Aunt Amy

Coloring

Button Making Day

Family Time Pictures

Here are some of the pictures from last weekend when Peter and my Mom were here visiting. I still can't get over how much Peter has changed. He's so adorable and we all miss him so much! We really all are "better together" and hopefully we will get to be together again soon. Enjoy the slide show.

Make a Smilebox slideshow

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.