Friday, June 25, 2010

Going home after 2 months!

It's amazing that we have been gone from our home since April 17th, AND tomorrow marks the 2 month "anniversary" of Cayden's liver transplant. I was talking to Dan about the surgery on Wednesday as we did our 4 mile walk. It still blows me away that the surgery even happened. Everything seems like such a surreal, distant memory in my mind. The only reminders I still have from the surgery are this incredibly huge scar and sore muscles under my rib cage and in my side where the drain used to be.

We are so grateful to Dan's sister Kristi, and our brother-in-law Paul for having the 3 of us in their home for so long. Eight people under one roof is a lot, and another "little" guy will reside here pretty darn soon. We are very much hoping baby Nathan makes the scene before the end of the weekend, as we have our tickets booked and are getting packed to come home on Monday the 28th!
The doctors have been extremely pleased with Cayden's recovery. We were shocked Monday when the transplant cordinator and doctors said we were released to go home! We didn't expect that news for another week or so. Medications have been adjusted, and ironically, Cayden has no more pain from the surgery (yes, it's the pits being old). Also on Monday, we ran into Dr. Khan at the clinic, who happens to be one of the GI doctors we saw back in February on our emergency trip to Stanford. We hadn't seen him since our first trip even though we've been here so long. He had been keeping tabs on Cayden and was happy to hear about his recovery. When I mentioned that he was feeling good and I still had some pain, he said "Well, it will go away - after a long time. The kids bounce back quickly. Surgery is always much harder on the donor." Great! That's encouraging. :) I guess that's the price you pay for loving your kid and being willing to do anything to make sure that he is well and healthy!

So for now, Cayden continues to take a zillion pills each day. I've finally gotten really good at filling the pill box, recognizing each kind of medication and remembering what each one is for. Some of the pills he will take forever, and some he needs just for the next year to two years. The key for him will be to begin taking over responsibility for remembering to take his meds, as the time frame for the anti-rejection medication is so strict.

Last Sunday we celebrated Father's Day with not only a special breakfast and dinner ( back ribs - hickory smoked with homemade rub), but Kristi was the hero of the day when she whipped out a huge bag of water guns for everyone (including the adults) to have a waterfight in the back yard. Poor Grandpa Jim couldn't get away, so he was at the mercy of the grandkids! In addition, Cayden's birthday is coming up on the 29th - the day after we get home, so we'll have one last family celebration together here to celebrate his 17th birthday.

And so as this chapter of our lives comes to a close and we head back to Washington, we constantly remind ourselves of how blessed we are to have had so many friends, family, and people we don't even know praying for us throughout the transplant and recovery. The power of prayer is amazing, and we know that our God is a merciful and loving God. Our recovery and positive news is bittersweet, however. Just two days ago, I found out that my step-dad's daughter Kary, who is just 49 years old and lives in Arizona, is losing her year-long battle with an aggressive form of leukemia. Shortly after our surgeries, she received a long-awaited bone marrow transplant from her sister Kati, who was a perfect tissue match. Things were going well and her white cell count had increased through the month. But on Tuesday, she found out that the leukemia is back and there is nothing further that they can do. We are the fortunate ones who lived through a successful liver transplant. Kary has maintained a positive, strong attitude for an entire year, despite the fact that she has spent most of that year in hospitals. If you feel so inclined, please help our family pray for a miracle for Kary. The doctors have given her weeks to months at this point.
There is still so much that we have to do in our lives. We have a purpose that is yet unfullfilled. I am unsure of that purpose right now, but I continue to pray for clarity and for God to reveal his divine purpose, so that my life will glorify Him. To all of our friends in Washington - thank you. Thank you for your prayers, for your love, for your encouraging words, and for your support of our family. We couldn't have asked for a better support system. We will see you all very soon!

Tuesday, June 8, 2010

Dreaming of home...

There's no place like home...there's no place like home. I am VERY jealous. Cayden got a little taste of home over the weekend. While the circumstances of his visit were sad (attending the memorial for his grandmother), and the weather was not particularly fabulous, he got to sleep in his OWN bed.

As of yesterday, we are 6 weeks and one day post transplant. The further away we get from April 26th, the harder it seems to even think that we were both actually in the hospital. These days, I am bound and determined to feel better, although I am entirely ready to beg for mercy at my Thursday follow-up appointment to see if they'll budge on that 6 month waiting time for my "other" surgery. If it weren't for those issues, I would be feeling pretty fabulous about now.

Regardless of that thorn in my "middle", I have made great improvements since my last post. A couple of weeks ago, I could barely make it from the parking lot to a few stores in the mall without being totally exhausted. That was week 4. Last week (week 5), I was tired of not being able to do anything, so I forced myself to push harder even though I was still tired. I began the week walking a mile, then two, and by Wednesday, I was up to walking 5 miles without resting! On Friday, Dan and I walked the infamous "Dish" next to the Stanford University campus - a 3.5 mile oval route which takes you around two sattelite dishes, perched on top of the hill, overlooking the campus. It reminded me a little of the Chambers Creek golf course walking trail in University Place...on steriods. If you decide to go counter clockwise, it seems like you never stop going up. On the way back down, it seems like a steep, quick drop in elevation. You've practically have to put on the brakes to keep yourself from propelling forward, but what a view from the top. The good news is that I made it all the way around, without stopping to rest. :)

Cayden's eating a lot more now and had gained 2 pounds since his Thursday appointment. Last week the doctors put him back on a medication called Vancomycin, a strong antibiotic he was taking prior to surgery that kept his Ulcerative Colitis under control. It's crazy, but the cost for that medication if we didn't have insurance would be over $7,000 per month! Thank God for insurance. Yesterday, his blood draw revealed that his new liver is working fabulously and his level of anti-rejection medication is perfect. His magnesium level has also finally improved on its own, so the docs have decided to cut him back to just 1 blood draw and clinic visit per week. We even talked about the "H" word - HOME! They usually start by monitoring once per week, then once every two weeks. After that, they could let us go home, BUT the catch is that he and one of the 4 parents will have to fly back once a month for a few months for a blood draw and clinic visit with the liver team here in California. Eventually that will change to every 3 months, then 2 times a year. I am in the midst of checking with our insurance company to see if they will cover our travel costs to get to/from Stanford for these visits. Cross your fingers that we'll be home before the month's out!

It can be difficult to have so much idle time on our hands these days. One can only partake in so many walks, and I've given up on watching TV in trade for a more intellectually stimulating activity - reading books. Yes, after finishing all of the books I had purchased or brought with me, I have secured myself a Menlo Park Public Library library card! It's actually been fun. Since checking out 4 books on Friday, I have already read 2 and am half way through the third. If you've never read "In a Sunburned Country" by Bill Bryson or "Blink" by Malcolm Gladwell, they're definitely worth a read. The Bryson book is a hilarious account of his experiences researching and exploring all things Australia. Throughout the book, he perseverates on the fact that compared to the rest of the world, Australia is home to the largest number of critters that can kill a person. I'm not so sure I want to go there now! The book by Gladwell is a facsinating look at how it takes just seconds for our unconscious intuition to kick in - an easy read with lots of research that makes you say "Hmmmmm". The book I am currently reading is for people who are fanatical about punctuation and grammar (anal me again). In Eats, Shoots & Leaves, Lynne Truss - an English writer and journalist, explores the comical side of how lax societies (both English and American) have become regarding the use of punctuation - especially the apostrophe. It reminds me of the time I was driving through University Place on the way to Curtis High School and saw a city sign stating "Delivery's Only". I was mortified. The worst part of it was that the sign remained that way for several months. One day I noticed that someone had finally done something about it - it read "Delivery Only". How is it that a "public" sign like this can actually be posted in public with such a gross error? If you've ever found yourself "editing" just about anything you read, this book is for you!

As you can see, I like interesting non-fiction. I tend to gravitate towards books that help me "become a better me", but with the last few, I've been working on expanding my literary horizons. If you've got a great recommendation, let me know, and I'll put it on my summer reading list. I'll need it - we're canceling our cable when we get home!

Well, that's all from sunny Menlo Park, California. I'm trying really hard to push some sun up to Washington for everyone. I hope you appreciate my efforts!

Thursday, May 27, 2010

A Month and a Day Post Transplant

Yesterday marked one month since Cayden and I were in the operating room! On one hand, it seems like there's no way that it could have been that long ago, on the other hand, it seems like it was ions ago and is merely a distant memory.

At this point in my own recovery, I have mixed feelings. I have been a bit frustrated by the yo-yo of the up and down days. Some days I've felt pretty darn good, but other days my incision aches (to the point that the friction of my shirt irritates me). I have a hard time sleeping through the night, I get tired being on my feet too long (including not being able to walk too far), and normal meals periodically upset my stomach (a perfectly good Jamba Juice went from cup to stomach to toilet the other day...yuck). I've been told to expect to have both good and bad days for the next month or so. On top of it all, just when I started to feel better with the surgery stuff, my "female issues" reared their ugly heads, to the point where I was ready to make a mad dash to the ER about a week ago at 11 at night. My next clinic appointment is June 10th. I plan to beg for mercy on the 6 month waiting period for that surgery. I seriously don't know if I will last that long. Call me impatient, but I am really ready to feel good permanently!

Now that I have not been relegated to so much napping and lying down, I have started to feel both antcy and homesick. Keeping busy seems pretty easy, but I don't necessarily feel as productive as I am used to being. I'm still working on a couple of books that I've been reading, keeping up with paying bills that keep showing up back home, checking on insurance payments, attending clinic appointments for Cayden (and constantly re-doing the pill box each time the docs change or adjust his medications...which seems like everytime!), watching nephews play baseball, and helping out as much as my energy levels allow here at Kristi and Paul's house. I miss my house, my friends, my kitties, and my own bed! Rob and Angie left for the long drive home on Tuesday, and I have to say that I am very jealous that they get to be home, sleeping in their own beds! At this point, we don't know when we'll be allowed to leave California. All I know is that the doctors want to see that Cayden is doing well on his medications and his liver numbers need to be stable before we get the green light to head home. Boy are we going to have to do something about getting excess baggage back home!

Until today, Cayden was really starting to bounce back in his recovery. He's up to 131 pounds, which is a huge improvement considering he was hardly eating a week ago. Last Friday the Intervention Radiologist determined that his bile ducts had finally healed over and his tubing from his JP drain was removed from his sternum. On Monday, the two bile collection bags were disconnected from the tubes, the tubes were capped off, and the last of his surgery staples were removed. He will need to keep the tubing in for 2-3 months, so they will likely be removed by Cayden's GI doctor back home. Those tubes are much smaller than the surgical tubing from the JP drain, and have fortunately not caused Cayden the discomfort he had from the JP tubing. The doctors were pleased with his blood tests today. All of his "numbers" look excellent, they said. They stopped his potassium supplement since his potassium levels are normal and adjusted his anti-rejection medication (called Prograf) down by 1 milligram per dose. Because of the anti-rejection medication, he has a low magnesium level and must take 6 magnesium tablets per day. He's taking several other medications including Penicillin and Valcyte, since he no longer has his spleen. Both protect his body from other illnesses. On Tuesday, he started another anti-rejection medication called Cellcept. The doctors suspect that's why he wasn't feeling well today. Apparently it can cause gastrointestinal upset in some patients, so they've taken him off for now to see if he feels better over the weekend. He has just two weeks left of school (Palo Alto finishes June 10th, so he's got to buckle down and finish strong to get his credits to move on as a Junior next year.

On a fun note, I did manage to get a little pampering with a pedicure last week (courtesy of Angie and Rob for my 42nd birthday present-thanks guys!). Angie and I were supposed to have a girls' day with lunch at this yummy salad place called Pluto's followed by getting our toes done, but the guys "invited" themselves along. They decided to wander around while we were busy at Simply Be, the nail salon. All I have to say is REAL men DO get pedicures, don't they? R.S...thought you'd get by under the radar didn't you?

By the way, it's been raining off and on for the last 5 days or so. We were told this has been the coldest May on record down here. Doesn't that just figure??

Until next time...

Monday, May 17, 2010

Woman Loses 7 Pounds in 24 Hours...News at 11!

Yep, you read it right! I literally lost 7 pounds of water weight in a period of 24 hours. I bet you want to know how I did it, don't you?? Well, first you need to gain 13 pounds of IV fluids...ok, I am kidding about that, but I am not kidding about the 7 pounds making its way out of my body in a matter of one day. That's just crazy to me. Here's what I discovered. It was those stupid pain pills! Yes, the pain pills. Those same pills that kept me from feeling every ache in my incision, muscle pain in my back, and the newly "waking up" nerves that kept screaming at me, were wreaking havoc in other ways, namely holding on to every bit of IV fluid that was pumped into me during my 6 days in the hospital!

On Thursday during my clinic visit, my favorite resident surgeon, Amy, said I needed to start alternating Tylenol and the pain meds starting with my next dose. Ok, no problem, I said. Little did I know that I was going to be feeling like "H-E-double hockey sticks" that evening...really, I'm not kidding. The first time taking the Tylenol, I could tell that it wasn't relieving the pain like I was used to, but I am a teacher, and I am a BIG TIME rule follower. I am going to do what the doc says, no matter what. As the evening wore on, I decided, ok, I'm just going to go for it. Cold Turkey. Tylenol only. No more pain meds for me. That night, I thought I was going crazy. I couldn't sleep, my skin was "creepy crawly" on my know, the way you feel when you have a fever or the flu? I kept asking Dan to feel my forehead. I'm pretty sure I was driving him insane. I tried to sleep but only tossed and turned. No matter what I did, I couldn't get comfortable. I laid on my side, on my back, on my other side...not a chance. Finally, I sat up with 6 pillows propped around me and fell asleep - for an hour and a half. When I woke up, I was so agitated and the acid reflux was back with a vengance (yellow tongue and all), that I told Dan he had to leave and sleep in the other room. Poor Dan, he didn't do anything. By the time morning came, I was so tired from lack of sleep. Dan told his sister about my evening, and she just bust out laughing. My sister-in-law, a clinical psychologist at Stanford University, declared between fits of laughter, "She's going through withdrawls!" Oh great, another one of the mysteries of my recovery. As I said before, and I'll say it again, why dont they tell you these things????

So you're still probably wondering about the miracle weight loss, aren't you? Patience my friends, I'm working up to it. :) Friday Dan and I went to visit our nephew Ian at school for his Celebration of Learning (That's us above with Paul, Kristi, and Ian in his classroom). He's a 2nd grader and goes to a private school here in town. Of course, I wanted to see what he's been working on, but I think secretly all teachers want to see what's happening in someone else's classroom. Wow, jealously was the first feeling that came to mind. They had so much technology in the classroom it made my head spin. There were desktop computers, laptops, a smart board, projector, flip cameras and a laptop for the teacher. Not only that, but Ian's classroom was in the newer addition to the school...high ceilings, modern cool! It was fun to visit, however it made me wish we had better funding for our public school system back home. For me, this was a pretty big outing. My ankles and legs were so swollen with fluid, I was starting to get worried, even though Dr. Amy said keep taking the Lasix until the following Thursday. Even though I am a "rule follower", I can be an impatient one at that, so I called the clinic to ask what else I could do. At this point, you're probably thinking they gave me some miracle cure, that's why I lost all that water weight. Nope, not a chance. Dr. Amy said I needed to be "patient". Insert BIG *sigh* here.

Enter...Friday night...the night I wrote my last post. Now mind you, I have been weighing myself regularly, several times through out the day, hoping and praying that by some miracle, I'd start to see something work. I had kept my legs propped up the entire rest of the afternoon. It was so frustrating to have no control over what was happening to me. The good news is that I was better able to fall asleep Friday night. I didn't kick Dan out or get annoyed with him for no apparent reason, but here's what DID happen. I woke up literally every 1 1/2 to 2 hours, sweating profusely and needing to go to the bathroom. All...night...long! When morning finally came, I told Dan what had happened. On my last trip in the bathroom, I weighed myself. I was exactly 7 pounds less than I had been on Friday evening. No kidding. The swelling was gone on my right foot and ankle, but there was still some swelling on the left one. I couldn't believe it. Since Friday night, I've managed to "let go" of 3 additional pounds of the fluid trapped in my body. My ankles and feet are back to normal, but I'm still holding on to some in my midsection. I can live with that for now. Oh yes, I almost forgot. That acid reflux, yucky taste, yellow sign of it Friday night, and I haven't had it since. Nice. I can officially say that I don't like pain medication. If it was on a Facebook post, I'd add *dislike* to it! And another thing. Shelly, if you're reading this, I decided to suck it up and take your advice on the Lovenox shots. I found the softest spot on my belly and gave myself a shot the next day. You were right, I've done it now for 3 days and haven't had a single bruise or reaction to the shot. I only have 7 more shots to go. Thanks for suggesting I give it a try. You're my legs' new best friend! :)

Enough about me. You're probably wondering how Cayden is doing through all of this. He's spending his time with his mom and Rob, because they'll have to go back home pretty soon and he won't get to see them again until after school is out. Everybody came over on Saturday night to share in my yummy birthday dinner. It was wonderful to have everyone together and enjoy such a fabulous meal (baby back ribs, shrimp, salmon...triple layer chocolate cake!). It really was one of the best birthdays I can remember.

Today was a blood draw and a liver clinic visit for Cayden. He has his draws and appointments on Mondays and Thursdays until they clear us to head back to Washington. According to the doctors, his liver is doing great, and he even had all but a few of the rest of the staples removed from his incision. But he's emotionallly having a tough time. He feels lousy and tired a lot, which I think frustrates him. I know he really wants to feel better much faster than it's happening. The docs assured him that this is normal. He can't seem to bring himself to eat much and has lost weight, which does concern the doctors. It's important for his healing (as it has been for me) to be able to eat enough so the body can do what it needs to do to grow the liver and get the body back to a more normal state. I talked to him about this today...about how important it was for me to push myself to eat a little more than I felt comfortable eating. I also shared my experience with being off the pain medication now. He's having the same acid reflux problems I had, which made me less apt to eat. I know he's very uncomfortable with his drain tube clamped off at his chest and two small tubes protruding from his belly that drain the bile into bags. Later this week he is supposed to have another Intervention Radiology procedure where they'll again inject dye to make sure that the bile leak has closed itself off. If it has, then they'll at least be able to clamp off the drains and remove the bags. The doctors today said they didn't detect any excess fluid in his belly when they examined him.

So for now, all is mostly well in liver transplant world. I just hope and pray that Cayden is ready soon to work hard at helping himself heal. It'll be the best thing for him.

Friday, May 14, 2010

The Last Day of Being 41...

Well, this is it, May 14, 2010. It's officially my last day of being 41 years old. I always thought I'd feel strange about moving into my "40's", but you know, I can say with confidence that the last few years of my life have really been the best of all. No, I am not at my ideal weight and I don't look fabulous in a bikini (especially now...did you know my belly button is currently crooked because of my surgery??!), I don't have a sizeable nest egg for retirement, and I still drive an 11 year old mini-van I've fondly named the "Pimp-mo-van", but I have learned a lot about myself in recent years.

First, I've discovered how strong I can be when faced with adverse life circumstances (and trust me, it's been more than just this transplant that we've had to deal with in the last few years). I've come to believe that I really am a good teacher, despite the negative self talk inside my head telling me that I'm just a really good "faker" (Is it just me, or does every teacher feel that way at some point in their career?). Despite all we've been through the last few years as a family, I've come to accept that I've done the very best that I can as a parent to teach the boys right from wrong, to work hard in school, to take them to church faithfully, and to support and love them unconditionally. I have also learned to accept that as the kids got older, I did not ultimately make their life choices for them...they did...and they must accept responsibility for those choices, not me. In addition, with many thanks to my mom, I have learned that I am capable of "tough love" and setting boundaries that I can stick to. I also have discovered most recently that I am capable of doing things that scare me to the core. Prior to donating my liver to Cayden, I have never been more afraid in my life. Fear of the unknown, fear of dying, fear of unbearable pain. I faced that fear, did something amazing for a stepson whom I love so much, and came out on the other side filled with a wonderful sense of purpose and peace.

Yeah, this almost 42 year old body is bouncing back slowly to say the least. Every day I have to give myself a Lovanox shot. It's a blood thinner. There's nothing worse than giving yourself a shot. I would say about every third day I have a yucky reaction to the shot, the last being a softball size bruise on my leg. Yes, they told me in the hospital that I can give the injection to myself in the thanks, I'll stick with alternating legs. I'm supposed to get up, walk, move around, but of course, everytime I do, all the fluid makes a beeline for my ankles and feet. it's hideous. I'm told by the doctors to be "patient" it will exit my body soon. Tell that to my feet and ankles! And then there's my acid reflux. Yes, I was diagnosed with acid reflux quite a few years ago, but with meds, it was never a problem. I can't seem to take a nap or go to sleep at night (even with my head raised) without waking up to a nasty taste in my mouth, a burning stomach, and a ridiculously yellow tongue. Oh please, how long will all of this take to rectify itself? My brother-in-law Paul put things into a little better perspective for me this evening. He said, you were operating with 40% of your liver, and it's still growing back. Your liver is trying to do the work that 100% of your liver was doing before. Ahhh, is that it? Well, if that's the case, I can't wait for 4 weeks from now when I finally have 100% of my liver back!! :)

So tonight I say, farewell 41st year of my life. You were an interesting year, one which I will never forget. I wonder what amazing things the 42nd year has in store for me???

Wednesday, May 12, 2010

Help, I'm Leaking!

Why is it that I feel like my recovery is supposed to be a mystery to me? Everytime I start to freak out about something being wrong with me, I get a response from the surgeons..."Oh yes, that's to be expected." Expected? Well, why didn't someone TELL me to expect that? Sheesh!

A perfect example of this occurred yesterday afternoon. Of course, it was 5 p.m., just past the normal business hours of the liver clinic, when I could have called with a normal inquiry. Instead, it was now considered after hours and I had to yet again call the number to have the surgical resident on call paged. Fortunately it was Amy, one of my sweet resident surgeons, who I've talked to 3 of the 4 times when I've called after hours. I explained to her that I was laying in bed resting, when all of a sudden I felt a whoosh. I looked down and my entire side was soaked. It was all I could do to keep myself from freaking out. I distinctly remember asking the nurse on Monday if I needed to have any stitches for the tube-sized hole that remained where the surgical tubing used to be. Nope, it would heal on its own, and I was even encouraged to shower the area to keep it nice and clean. No one mentioned the fact that I may spontaneously begin to leak! Holy cow! At least Dan kept his cool. My poor skin was ready to revolt when he removed the tape. I didn't really want to look at the hole in my side, but to my surprise it wasn't so bad. BUT it was sure weird watching fluid flow from a place in my body that it shouldn't be flowing. In place of the gauze we carefully taped a large square of absorbent material that reminded me of a sanitary pad. That oughta do it Dan figured. After giving Amy the "Reader's Digest" version of the leaking event, she told me, "Oh yes, that's very common. We expect that to happen." AHHHHHHHH! Why don't people tell me these things??

Thinking that I was in good shape, it wasn't more than about an hour later when we were sitting at the dinner table. Dan had run back to the hospital to bring Cayden some of the food we'd had for dinner and to sit with him while his mom and Rob were getting orgainzed for the evening. I had that weird feeling again...oh no. Only this time about twice as much fluid came out, and my pajamas, shirt, and medical pad were completely soaked. My sister-in-law, Kristi sprung into action. She grabbed on of the cloth baby diapers she had and folded it over to place on top of a new absorbent pad. Instead of torturing, I mean taping me again, we used some of this medical "sock" to hold everything in place around my side. Except for some minor leaking during the night, I think the situation is now under control. What next?

One piece of GREAT news today. Cayden was finally discharged from the hospital. Hopefully this will mean he is out for good. They've switched a few of his meds, and he still has a bile collection bag protruding from his mid-section that must be emptied periodically, but he is now "free"! He looks healthy but is pretty tired. The first thing he wanted to do when he got here was take a REAL shower. It was his first time taking a full shower since his surgery. I know that had to feel good. He's spending some time with his mom and Rob today and this evening, and he and Rob are even going to the theater to watch Iron Man 2. Hopefully he'll be able to get comfortable in those seats. I remember it wasn't long on Sunday before I was ready to leave brunch. When you've had a major surgery like this, you don't stay comfortable in one position for very long!

Tomorrow is my 2nd post-op clinic visit. I'm still retaining about 10 pounds of water. I've tried to keep my feet up a lot, since the swelling creeps down to my ankles and feet pretty quickly. I suspect they'll up my Lasix to help move more of the fluid out of my tissues. Cayden has his clinic visit and blood draw on Friday. As I mentioned before, he'll have twice weekly monitoring of his liver functioning to see whether his medications need to be adjusted.

So for now, things in liver transplant land are good. Dan printed the picture of the first time I got to see Cayden post surgery. It's not the best quality of photo, but the message from the photo is something I will cherish forever.

Monday, May 10, 2010

Ding Dong...the Drain is Gone!

Hooray!!!! As I drifted in and out of consciousness around 10 this morning, after yet another sleepless night (I'm all caught up on my back episodes of NCIS and NCIS-LA by the way), I heard the familiar "ding" of a text arriving on my phone. It was Dan, who was still at the hospital after spending the night with Cayden. He was letting me know that Amy, the surgical resident, called him this morning in Cayden's hospital room to tell him that all my tests came back more bile leak! She said I could come on in today and have the drain and surgical tubing removed from my side. Thank goodness!

By the time I was ready for Dan to pick me up, I realized I was pretty starving, even though I was up eating 3 times in the middle of the night. One of Kristi's friends had provided chicken enchiladas for dinner last night, so I decided I'd eat the last enchilada. I figured that would be sufficient, until I noticed that one of the plastic bottles of chocolate"Boost" Dan had bought the previous night to increase my calorie and protein intake was leaking. As I accidentally knocked another bottle out of the fridge (I know, graceful, huh?), I noticed that now both bottles were leaking and it would be impossible to save them based on where they were cracked. I guess I'd be eating an enchilada and downing 16 ounces of chocolate Boost. In hindsight, I wish I had just stuck with the drink, because the enchilada, though relatively unspicy, still didn't sit well with me. My stomach is still just not ready for many of the things that normally didn't used to bother me.

Interestingly, the minute we arrived at the hospital, it started to downpour. It figures I would be wearing my fuzzy slippers and soft socks this time instead of my flip flops. My feet were still so swelled up that I didn't want to expose them to the whole world.

I'm still only happy to ride in the wheelchair over to the liver clinic. We park at the children's hospital side, so it's quite the trek over to the liver clinic, which happens to be on the complete opposite end of Stanford. Since we didn't have an appointment, we ended up waiting about 20 minutes before the nurse was able to talk to Amy, the surgical resident, and verify what needed to be done. When she brought me back, I expressed my concern about pain and what to expect when pulling out the tubing. She assured me that it would be momentary and would feel more "strange" than painful. After snipping the couple of stitches that held the tubing in place she instructed me to take a deep breath and then let it out, so I did. Ugh...a very yucky feeling inside. I'm thinking to myself, "Sweet, I'm done. That was easy." Ha...little did I know. She told me to take another deep breath...Dear God, I was ready to start crying...she kept telling me to breathe in and out. All in all, I know it was quick, but to me it seemed like forever. She taped over the hole with gauze. I wondered about the hole. Would we need a stitch to close it up...nope, she told us, it'll seal itself. Wow. My other concern about the excess million pounds of water weight that kept working its way up and down my hips, legs, ankles and feet was addressed as well today. I started taking a medication called Lasix, which is supposed to help pull out the excess water from the tissues. It hasn't kicked in yet, but I'll keep you posted!

On the way back to the Lucile Packard Hospital side, we stopped by Cayden's room for a visit. I was so happy to see him, especially since I had to forgo a visit yesterday. He looked great today! No major pain, and as we visited, he ate a couple pieces of his chicken quesadilla and french fry lunch. Dan says he had a really good breakfast, too. Yay for eating! Lynn, one of Cayden's doctors, popped in while we were there and remarked that Cayden's liver was doing beautifully. They're ready to get him home, and I think he's starting to get bored at the hospital. It'll be nice for him to get back to some school work, as the Palo Alto district actually finishes much sooner than our district does. Their last day is June 10th!

I've felt pretty good the rest of the day. The doctors have encouraged me to consciously stand up as straight as I can right now so my incision doesn't heal so that I look like a hunchback! I'm hoping for a nice day tomorrow and less swelling in my feet. I may throw on my sneakers and walk up the street if I can manage! Thanks to everyone for their continued prayers and positive messages. I so miss everyone from home!

Sunday, May 9, 2010

The Ups and Downs of Recovery

I always find it interesting how when patterns and routines are established, I tend to expect things to continue on the same course. It doesn't matter whether it's in my classroom or at home, I always have "expectations". With my recovery it's been no different. I expect that after feeling just a bit better each day, that things will continue in that same pattern. Why is it that I always "set myself up"? I should have known better. I'll never learn.

Friday was a great day. Still swelled up like a balloon in my legs, I was feeling just a bit better than Thursday and my longtime buddy Lippy (whom I have literally known since we were babies on Torthay Place in Richland, Washington) and Alex (one of the guys I went to junior high and high school with) stopped by for a visit. Now, Lippy isn't his real name. It's John, but I am confident that there isn't anyone out there who actually calls him John, with the exception of telemarketers and people checking his ID, well and maybe his mom. To me, he's always been "Lippy" and Lippy he'll be forever. It was pretty fun to have visitors other than my family and tell them all about the surgery and my experience in the hospital. I even showed them my incision...heck, they're guys, I figured they could handle it. Lippy was totally surprised that I wasn't still in the hospital and they were impressed that an incision that large could be secured with the hospital's version of super glue.

After my visit, I was feeling pretty good or so I thought , for about 5 minutes, and then I realized I was incredibly tired. I think I zonked out the minute my head hit the pillow. Now you have to understand that it's currently very difficult for me to position myself so I can sleep comfortably for any length of time. I think my longest stretch of sleep at any one given time has been 3 hours. Usually, I fall within the 1 1/2 to 2 hour range before I wake up desperate for a new position. It's not easy sleeping with a piece of surgical tubing sticking out of your right hip, nor is it all that comfortable lying flat on my back with my insides pressing against my incision. I have about 7 different pillows and a couch cushion, not to mention a few blankets and a quilt to shove in the different places around my body for support. Most often when I wake up, my insides are screaming out in burning pain, and now that some of the feeling is coming back on the top of my skin, my incision is burning and has been starting to itch like crazy. Thank God for pain medicine, BUT it's usually about 30 minutes before my next dose when all heck starts to break loose and it's another 20-30 minutes after actually taking it before some relief sets in. Yesterday, I made the mistake of thinking I could get away with just 1 pill during a 4 hour period. Holy cow, it was all I could do to make it until 10 p.m. for the next dose. Not cool.

Cayden's definitely had his ups and downs, too. He's still in the hospital. For the most part his pain is under control and he is eating normal meals. He has a few times during the day where his pain becomes unbearable, so they've resorted to the IV pain medication, which further delays his discharge. Unfortunately, when he comes out, dealing with pain with be inevitable, but the docs want to make sure that for the most part he is able to get comfortable when he needs to.

Last night also started my downward spiral as far as I was concerned. As the day wore on, I started getting a really bad headache. About midnight, under my right collar bone, radiating down my arm into my back and down to my incision was the sharpest pain I've experienced since being home. I couldn't seem to get deep enough breaths. Not only that, my ankles and calves seemed to keep growing in size and getting tighter. Needless to say, I was not a happy camper. Dan was spending the night at the hospital with Cayden, so my brother-in-law, Paul, encouraged me to have the surgical resident on call paged. After assessing the situation and describing my pain as "referring" pain, she suggested I go ahead and take my pain medication early. That seemed to work...until about 3 a.m. when there I sat, wide awake, again. Did you know there is very little on TV at 3 in the morning? I settled for On Demand and watched one of my missed episodes of NCIS and also watched the movie It's Complicated. Now that was a funny movie.

Finally ready to sleep at 6:30 or so, I managed to sleep until 9:30, when it was time to get up and get prepared for my first trek outside the house (besides the hospital). We were headed to Mother's Day brunch at a local restaurant. I equate my getting ready for brunch this morning as being done in 3 stages: take a shower - rest, put on some make up for the first time in 2 weeks - rest, dry my hair - rest again. You so take for granted having energy when you're healthy!

Brunch was wonderful, but I felt a little sad, because Cayden was still in the hospital and wasn't with us. Because I am still having a hard time eating much and have been pretty much been "forced" by the docs to eat more, I paced myself at the buffet. Fortunately, they had all of my favorite "proteins" - shrimp, crab, cheese, chicken picatta, so I could load up and try and help move this 8 pounds of fluid out of my body! While at the restaurant Dan gave me a Mother's Day card from Cayden that I quickly opened. Inside it said "I love you very much. Thank you for my second life. - Cayden". This was the best Mother's Day...ever.

I really wanted to go over to the hospital to visit Cayden this afternoon, but once I arrived home from brunch, it was all over for me. My feet, ankles and calves were so tight I was beginning to really worry. Not only that, my headache was back and I was having the pain in my neck, chest and arm, and it was getting hard to breathe again. Dan's sister, Kristi, pulled out the heating pads to help alleviate the soreness in my neck. I looked at the clock...darn it...30 minutes until the next dose of pain medication. It figured.

A little later, Kristi had Dan try an alternating hot and cold foot and ankle bath to try and help bring down the swelling and tightness from the edema I was experiencing. Man that water was hot. It was all I could do to keep it in for the first 5 minutes before I got to plunge my sausage feet into the cold water. I didn't feel any different right away, but several hours later, I've noticed that at least one of my feet isn't quite so gigantic anymore. You can bet I'll be on the phone with the liver clinic people tomorrow morning. I'm getting tired of looking and feeling like a balooga whale right now. I keep joking that this must be what it's like to be pregnant...only I gave birth to a liver not a baby!

Friday, May 7, 2010

Life Recovering at "Home"

It's funny to think about being "home" from the hospital. While I'm not at Stanford anymore, that's true, I'm not home either. I am actually still in Menlo Park with my sister-in-law, Kristi, and brother-in-law, Paul, Dan's dad, Jim, and Paul and Kristi's boys Ian and Adam and will be at least until the beginning of July. It's quite a house full and despite that Paul and Kristi are expecting their 3rd boy in July, they have made us feel so welcome and loved. I just wouldn't have it any other way. We are so fortunate and blessed that they live so close to the hospital. I keep reflecting back upon the chain of events and how everything has been pieced together in such a "perfect" way.

On Monday the 3rd, Cayden was discharged from the hospital. I was so surprised they were ready to let him go so soon, especially since we were originally told he'd be in for about 2 weeks. Cayden really wanted to be home, and the doctors agreed it was the best place for him. Knowing how hard it was for me to get settled coming home the day before, Dan ran out to get an inflatable camp bed so Cayden wouldn't have to navigate the cousins' bottom bunk bed, which was so low to the ground.

I spent about 30 minutes looking over all of the new medications and the schedule for each one. Some he only takes for a few weeks, some will be adjusted, and yet some will be started in a couple of weeks. Nothing he was now taking was like what he took prior to the transplant. The most difficult was going to be the Prograf - Cayden's anti rejection medication. He was supposed to have no food or drink from 7 pm to 8 pm, take the Prograf at 8, then nothing to eat or drink until after 9 p.m., when he also took the rest of his medications. In addition, we had to do the exact same thing 12 hours later.

The first night was terrible. Cayden woke up at 1:45 a.m. and was having a ton of pain in his chest and abdomen area, all around the incision. Ironically, I woke up at nearly the same time, experiencing the same thing. In his exhaustion, Dan had forgotten to set his alarm to give Cayden the pain meds at 1:00 a.m., and it was already taking its toll. Cayden was insistant and ready to head back to the ER, but we were instructed to call the surgical resident on call in case of emergencies. After getting him back on track with the pain meds and getting a breakthrough pain dose in, he was feeling relief, so everyone headed back to sleep.

Most of the next day he spent feeling nauseated, in great pain and able to eat very little. Dan tried hard to get him to eat something so he could keep his pain medication down. He had a lot of difficulty walking around and standing up straight. He was downright miserable. The next night, more pain, only this time a burning sensation inside and out. I had pain that mirrored Cayden's. Again, a phone call to the surgical resident on call assured us there wasn't an urgent need to get to the hospital, plus the following morning was the first of Caydens twice weekly blood tests to monitor all of his levels.

Wednesday the 5th, Cayden had his blood draw early in the morning. At 11, we were scheduled to meet his Social Worker, Denise, in the lobby of the hospital to view the liver and spleen that were removed from him on surgery day. Little did we know that just in doing this, it would be too emotionally overwhelming for him. When we got to the pathology lab, they uncovered Cayden's spleen and liver. They were cut crosswise already. It was the strangest thing to realize that those were the organs that had been inside his body. The spleen was huge, but so was the liver. Cayden immediately asked to be wheeled away into the hallway. It was just too much. We took some photos, but out of respect for Cayden and his feelings, I've chosen not to post them right now.

On the way back, Dan received a phone call from Cayden's transplant coordinator, Carmela, who said a couple of Cayden's blood levels were elevated and they were ordering an immediate ultrasound to check for fluid in his abdomen. Before they had released Cayden from the hospital, they had clamped off Cayden's abdominal drains, which I couldn't understand, since they kept mine in to make sure my small bile leak had fully repaired itself.

After waiting forever in the ultrasound waiting room, Cayden was finally taken back with his stepdad, Rob. Poor Dan had stepped out to use the restroom and a code red was called at the hospital, locking all of the doors, so he couldn't get back in for awhile. And there sat poor me in the wheelchair...tired and sore, ready to go back home. Dan finally made it back to the waiting room and discovered that the ultrasound showed fluid inside. They now wanted Cayden to go back to the Intevention Radiologist for a procedure where they were going to inject dye into Cayden to see if the leak was coming from one of the two (unusual to have two bile ducts in the right lobe of a liver by the way) bile ducts now inside Cayden. He found out that Cayden was going to be re-admitted and that it was going to be awhile, so much to my relief, he ran me home and headed back to the hospital to be there for the procedure.

After several hours, they determined there was indeed a bile leak and the fluid needed to be drained. As Cayden was returning from his procedure, we got word that Angie's mom (Cayden's grandma), had just passed away back in Washington. Fortunately, Angie had already returned to Washington on Sunday after hearing her mom had taken a turn for the worse. I can't even imagine having to leave your recently transplanted son at a hospital in California to go home to be with your dying mother in Washington. My heart aches for her. Talk about a difficult two weeks.

With a new drain in Cayden's sternum, the surgical resident ended up draining an awful lot of fluid out. It didn't take long before Cayden's extreme pain subsided and he was left with the "normal" surgery pain that we've both experiencing since the 26th.

Thursday the 6th, was my first post-op appointment with the surgeons. One of my biggest concerns was that I was experiencing a HUGE amount of fluid retention in my abdomen, hips, rear and legs. You can't even imagine how bad it was, well, I guess if you've been pregnant before and can't see your knee caps or ankle bones, you might know what I'm talking about. I was a little concerned about the possiblity of blood clots, so before my appointment they sent me for a complete ultrasound of my abdomen, both legs, and then my liver area. With my abdomen all clear of fluid (the JP drain doing its job well), my legs clot free, the ultrasound tech moved on to my liver. She wondered how long ago I had the surgery...only 9 days. "Which part of your liver did you give?" she said, "Your left lobe?" I told her no, it was my right lobe, because Cayden was fully grown. She couldn't believe it. My liver had already filled in under my rib cage and my hepatic veins were also filling in the area. She didn't think it was possible for it to have grown so much in such a short time. How cool! The surgeon was right...6 weeks to full size. A true miracle. :)

With the ultrasound having taken about 75 minutes, it was back to the clinic for my appointment. I weighed in still 8 pounds heavier than I did on the morning of the surgery. No wonder why my legs were absolutely gigantic! After chatting with the surgeons about my recovery and checking out the incision, they asked about my diet. Was I back to eating normally? I said, "Are you kidding me? I ate 1 piece of turkey bacon, and an egg this morning and could hardly stand it. Nothing fits in my belly!" Dr. Bonham, one of my surgeons, told me that I needed to be eating TWICE as much as I would normally, in other words 3500+ calories a day and greatly increase my protein intake to regenerate my liver tissue, heal and rid my body of this excess water retention. Holy frijoles...there's no way on this planet I can fit that much food into my belly. I feel like I am going to explode after just a few bites! He suggested milkshakes, Carnation Instant Breakfast, and Ensure. Ok to the first thanks on the last one. Afterwards, we were sent to the lab for a blood draw and to have them take some of the fluid from my JP drain to make sure my bile duct had sealed itself over. Once we got to the lab, however we found out that they do not take the fluid samples there, just the blood draw. Anyway, long story short after 1 1/2 hours we swung by to see Cayden to discover he now had a urinary infection they were having to treat with antibiotics and he was sleeping. We finally left the hospital still without the fluid sample taken, and me tired, overdue for my pain meds, hungry and grumpy as heck. At least I got that chocolate shake on the way home!

Wednesday, May 5, 2010

Post-Op Blur

After 9 days, I've gotten up the energy and gathered my fuzzy thoughts to blog about the post op experience. I'll try to do my best to recall the significant points from the week. As a side note, I started this post the evening of May 5th, only to poop out and start again tonight, the 6th and then again the 7th, so bear with me as it may be a long one!

April 26th Following Surgery-I vaguely remember waking up in the ICU saying something like "I did it!" I can't recall exactly who was there, but I remember asking Dan if Cayden was ok and if everyone was doing ok and him letting me know that Cayden was still in the operating room but was doing really well so far. I don't remember much after that but am pretty sure my parents and my brother-in-law and sister-in-law came in to see me, too. That was some anesthesia!

April 27th - My first recollection was of Dan trying to visit me and being told that the visiting hours in the ICU didn't begin until 10:00. I felt and heard the "boots" inflating and deflating on my legs (you know the ones that they use to keep you from getting blood clots post-surgery). The clock was fuzzy, but it must have been about 9:30 a.m. or so. He said he'd come back after 10. At some point that day I remember being told they were going to move me from an ICU bed to a regular bed and move me upstairs to floor 3. I felt a slippery board under the sheet and behind my back. Miraculously, they quickly moved me from one bed to the other. Again...everything was blurry and fuzzy.

It's hard to know for sure what happened when. I remember hurting REALLY bad and being told that if I needed relief, I could push the button for pain medication. Yes, I am pretty sure being a liver donor is probably the most painful surgery on the planet. The surgeons weren't kidding me. I was also very thirsty, but the nurses wouldn't let me drink any water. Talk about torture. The best they could do was swab the inside of my mouth with a small wet sponge and wet my lips. I remember feeling very nauseated for much of the time. The minute I pushed the pain medication button, there went my stomach. Fortunately, I never threw up. I really wanted to text some friends and update my Facebook profile, but it was literally impossible for me to see the letters on my Blackberry. Everything...letters, numbers, characters, were blurred together. Later that afternoon, My dad and Patti came by to say good bye because their flight left early the next morning. I felt horrible, but all I could think about was how Cayden was doing. I actually looked at my scar. It was a HUGE J shape running from my sternum and making a right just above my belly button over to my side. No stitches or staples, just dermabond surgical glue. Amazing stuff really...super glue for the body! I also discovered I had surgical tubing hanging out of the side of me and a drain port to collect the excess fluid so the nurses and surgeons could check for a bile leak. For someone who was squeamish about donating blood, this really took the cake.

April 28th - Two days after surgery and...The Visit! The nurses and doctors all told me what a great recovery I was making so far. Hmmm, could have fooled me. I hurt SO bad! I still couldn't focus on my phone and they wouldn't let me drink yet...only ice chips. Yuck. When you're desperate for water, the ice chips just don't cut it. I managed a lap around the nurses stations on the E3 Wing with my IV tower in tow. That day, Dan asked if I wanted to see Cayden, and I thought I was up for it. He wanted him to be surprised, so we didn't forewarn him that I was coming. Holy cow, what a trip. On a route that I had easily walked so many times, every bump in the wheelchair caused me to whince in pain. The elevator ride down nearly made me throw up. By the time we made it over to the Lucile Packard side, I was tired, sore, and feeling very sick to my stomach, but I was bound and determined to see Cayden. I remember having to wait forever because they had brought an ultrasound to Cayden's room, and he was having a tough time not getting sick. When I finally saw him, it was the smile on his face when he turned and saw me that made every ounce of pain, nausea, and exhaustion worthwhile. (See The Reunion post for photo). I could only last a little while, but I was glad I'd made it! What a blessing.

April 29th - Finally, clear liquids in the evening. I managed to drink a little apple juice, a couple of bites of jello and some very yucky chicken broth before I felt nauseated. More laps around the nurses' stations. Another trek over to see Cayden. More visits from family members. I was the "model" patient. Another problem I was dealing with was the fact that I couldn't sleep at night, partly because I wasn't able to get comfortable. But, there was another reason. I was very aware of "Gertrude" who happened to be my very needy, Austrian roommate. Everytime my IV bells started going off, she'd call the nurse's station. Either that or she'd call them at 3:00 a.m., because she needed to have her "commode" emptied. Ugh! I was about to go nuts in there.

April 30th - Real food! Today, much to my relief, Gertrude checked out after having some serious difficulty getting coherent from the Ambien the nurses gave her that morning. I ended up having the room all to myself. Ahhh, peace and quiet and the best night's sleep in the hospital all week. No commode emptying at all hours of the night...nice. Not only was the day great because of that, but my mom helped me get cleaned up and washed my hair during the afternoon. It was the highlight of my day. When you look like a match lit within 5 feet might catch your hair on fire, you know it's time for a wash. I was feeling really tired again today. I'd be awake for a bit, and then doze off for a couple of warning, just out like a light. I had to say good bye to my mom and Don today since they were leaving to go home on Saturday.

Now here's a story for you. If you've ever had surgery, the doctors and nurses care an awful lot about your intestinal gas and bowel movements, of which I'd had neither since surgery day. When you've been under general anesthesia for so long, it takes quite some time for your intestines to "wake up". Apparently mine were taking an eternity to wake up, and I was getting fed up. A lovely enema capsule earlier in the day finally got things moving (ever so slightly as Dan would say), so they gave me some real food, only when it arrived, it was chicken and rice with curry sauce! Not exactly what someone who hasn't eaten real food for an entire week should probably eat as a first meal. Nonetheless, I gave it my best shot. I was able to eat just a few bites before feeling sick.

May 1st - Fresh Air! First thing this morning, the surgical team stopped by my room and said I was doing so well that they thought I was ready to discharge today. I just couldn't see that happening. I still had a lot of pain and just didn't feel confident about leaving. The great thing about Stanford is that they advocate for what the patient wants. So another day it will be. Today one of my favorite guys on the Liver Team, PA "Tito" swung by my room a little later and asked if I'd be willing to visit with another woman named Lorie who had donated her right lobe to a friend just two days after I donated mine to Cayden. She was feeling a lot of pain and having a tough time, so I agreed to go visit her in the afternoon. I spent a lot of time sleeping that morning in preparation for my visit with Lorie. With all of my parents now safely returned home, Angie swung by for a visit in the early afternoon. I mentioned the visit with Lorie, so Angie asked if she could come, too. When we headed across the hall, Lorie was obviously in the same state of affairs that I had been a couple of days ago, in incredible and out of awareness with all of the pain meds she was taking. We learned that she had donated her right lobe to a friend of hers who had Hepatitis C. Both her mom and dad were there to support her through the donation process. I assured her that she would be feeling significantly better in a couple of days and that I was in her place just on Wednesday. She held my hand and smiled. It felt nice to be a help to someone else today. Afterward, I made the trek down the hall, down one flight of stairs and onto the elevator for the next floor down so Angie and I could sit in the courtyard I could see outside from my window. It was a beautiful day, so we sat for awhile. It wasn't long before I knew I was ready for a nap again. No stairs this time...elevator all the way. Despite the pain, it was a nice day.

May 2nd - Sunday and Discharge Day! Hooray, after just 6 days since surgery, I was getting to go "home" today. I spent much of the morning preparing to leave...sleep, go to the bathroom, sleep again, go to the bathroom, sleep again...get the picture. I was very tired! They let me have lunch before leaving, which surprisingly was a 4 cheese penne that tasted good. The only problem was that I had no appetite, so I ate about 5 noodles and I was finished. At around 1 I let the nurse know I was ready to leave. She showed me how to take care of emptying the fluid from my JP drain and took out the last of my IVs. Dan grabbed a wheelchair from downstairs so we could wheel over to the children's side of the hospital and see Cayden before I left. It was a quick visit, but I could tell that he was feeling better, too. He was chomping at the bit to get out, and the docs said he'd likely be just a day behind me. Amazing!

Getting into the car and home was quite the ordeal. I felt EVERY bump in the road on the way back to the house. When we arrived home, all I wanted to do was get comfortable, but that seemed impossible. The hospital might be a noisy place, but the beds rock. They adjust so many ways that all it takes is a small push of the button to be able to make a little ache go away. Not so at home. Armed with about 7 pillows, I attempted to get myself propped up in a way that felt ok. About 10:45 p.m. Dan came back from his second trip to the hospital, so he helped me get my first real shower. That was an experience. Tired, shaking, and Dan standing outside the shower holding my drain, it was all I could do to get cleaned up. After showering, Dan had to reposition gauze around the surgical tubing that emerged from my side held on with a couple of stitches. Everything is 50 times harder after surgery, guaranteed!

It was a tough night that night. I hardly slept and had to position myself so that my body was upright. Not only that, there was a problem with my oldest stepson, which created a night of chaos, stress, and anxiety. Fortunately, he was sent back to Seattle the next morning, so we could get back to focusing on our surgical recoveries rather than continuing to deal with old problems.

Next out of the hospital!

Monday, April 26, 2010

Transplant Day

Well, it's 5 am, and can I just tell you, if you ever plan on donating your liver to someone, Ambien is not gonna cut it. I'm not exactly sure how much sleep I got last night, but I know it wasn't much. My stomach has been gurgling and screaming at me all night. I've been awake for at least the last 45 minutes tossing and turning. The first thing I see when I click on Facebook on my Blackberry is a prayer and blessing post on my long-time high school friend Wendy's profile. Thank you Wendy, and thank you Cristal for the late night post in response to my blog post last night. I'm so thankful to have known you both for so long.

Just as I finished typing that last sentence, the phone rang. It was Melanie from church. I saw the name on my phone and just started crying. She prayed for me and Cayden over the phone. I told her I'd talk to her when I was coherent again.

So here we go. Off to Stanford Hospital for this miracle of all miracles. I get to give a part of me to a "son" whom I love so much. Do you think this means he's not really my stepson after all?

Thanks be to God! I'll talk to you all when I'm coherent again. :)

Sunday, April 25, 2010

'Twas The Night Before Transplant

I can hardly believe it. In just a few short hours from the moment I am typing this, I will be waking up here at Paul and Kristi's house (that is if I even manage to fall asleep), taking a shower with my buddy Chrolorhexidine (a pre-surgery antibacterial wash given to me by the hospital), and driving to the hospital to check in for surgery, only to later wake up to something that there really is no way to fully prepare one's self for, barring perhaps fervent prayer. I find it amazing that time has passed by so quickly.

Fortunately, I slept for a reasonable amount of time last night, although there was a point in time when I lay awake, eyes wide open, not able to shut off my mind no matter how hard I tried. I must have drifted back to sleep, but when I woke up, there was that tight feeling in my stomach again. Still lying in bed, I felt the need to say what had gone unsaid up until this point. I told Dan, "Even though I know I am going to be ok, just in case something happens, I want you to take 'me' somewhere with tropical waters." And I left it at that. Things were pretty quiet for a few minutes.

Getting ready this morning and each morning for the past week or so, I've found myself continuing to check out my belly, trying to imagine what it's going to look like after surgery. It's so interesting that I've spent the last 20 years of my life thinking somewhat vainly "Yay, no baby stretch marks, no c-section scar. I can still get away with wearing a two-piece swim suit." I so love Dan. He keeps telling me to quit it and assures me that he will LOVE my scar, and who knows, I just may wear that two-piece anyway to purposely show off my scar. Ok, well maybe after I lose that extra few pounds the hepatologist accused me of having!

The Facebook messages and posts, responses to my blog, emails, text messages, and phone calls started early this morning. The first message I received was from my dear friend Rebecca who happened to be driving by a huge billboard declaring "Living Donors Give Life". She took that as a sign that she'd better call. ;) The outpouring of support has overwhelmed me from the get-go today.

With Cayden hanging out with Angie, Rob, and Taylor today at the Stanford vs. Cal baseball game, Dan and I headed to Menlo Park Presbyterian Church today to help out with their Compassion Weekend. Our church's Compassion Weekend was this weekend also, which we didn't miss last year. What better way to spend the Sunday before surgery than helping assembly Haiti Caregiver Kits for World favorite charity. As I walked through the assembly line adding items like gloves, soap and washcloths to the bright orange drawstring bag, the tears started to flow. Once the kits were all assembled, everyone was directed outside to lay hands on the pallets containing boxes and boxes of kits to be shipped off to Haiti. As they prayed over the boxes, I started to sob uncontrollably. How blessed and fortunate are we to live in a nation where it is possible for doctors to give life to Cayden by giving him part of my liver? It was really hard to pull myself together. My sister Melissa called a little while later. After hearing the story of me being such a "puddle", she said I'd better drink more water so I wouldn't dehydrate today.

We met my dad and Patti at Cafe Barone for lunch after church. By then I was feeling like I was a little bit more "together". Cafe Barone is a hopping place on Sunday afternoons. They have a huge terrace to enjoy the nice weather. It was tricky to snag a table, but we managed to get one in the sun. I ended up eating an awesome turkey club on a baguette. They used pancetta instead of regular bacon and the cheese was smoky cheddar. Yumola! At one point during our conversations over lunch, Paul my brother-in-law, leaned over and told me that my 8 year old nephew Ian had asked the following: "When Aunt Amanda gives half of her liver to Cayden, will he talk like Aunt Amanda?" Paul asked him if he wanted to ask me about it, but he said "No!" We definitely got a good laugh from that one. :) Also during lunch, Paul and Kristi had given me a gift card for the bookstore next door, so we headed over there after eating so I could pick up a couple of books. One of the books I chose was one I've wanted to read for awhile now...The Purpose Driven Life by Rick Warren. I bought it and then had a funny afterthought: "Maybe I already am living a purpose driven life." I guess I'll find out once I've read the book. Stay tuned on that thought.

Gosh, it was really hot here today. Dan and I hung out at the house for most of the afternoon. I spent much of my time sitting on the front porch talking to my sister, enjoying the sun, and just remembering to breathe. When I finally decided to go in to cool off a bit, for no good reason other than I felt like it, I attacked the leftover key lime pie from last night. It was only 4 o'clock, but I didn't really care whether or not I spoiled my dinner. Like Paul said to me, I should do whatever I want today. I like that philosophy.

Our last big "event" today was dinner at Cedros Ristorante with my mom and Don. Yep, Italian for my final meal before the hospital. I LOVE Italian food. I was feeling pretty good until I'd finished about half of my spaghetti carbonara, which is one of my favorites...well except for the peas. I picked all of those out. Anyway, I started to feel sick to my stomach. I ended up in the bathroom three times before we left the restaurant. During dinner, more messages of prayers and well wishes popped up on my Blackberry. My oldest stepson Bryan called to say he loved me, wish us good luck, and say that he'd see me next Saturday. Oh boy, there came the tears again. Yes, I did drink plenty of water today, Melissa!

Finally, it was back home to try and settle in for the evening. We were greeted by Ian, who was now missing one front tooth and the other dangled by a thread of skin. Mouth all bloody and grinning, he was so excited. Being the expert second grade teacher and awesome tooth puller that I am, I suggested he twist it to get it out of his mouth. With two twists and a few spits into the sink, the tooth was out and all that remained was a big gap where both teeth had been. Two teeth in one night!

And so here I sit, working on deep breathing and trying to relax...all packed for the hospital. My prayer shawl and burden bear from church are in my backpack to take with me in the morning. All that's left is to take my antibacterial shower. There's a song on Spirit 105.3 that I just love by the band Mercy Me. The words of the song are taken from Psalm 121:1..."I lift my eyes unto the hills...where does my help come help comes from the Lord...the Maker of Heaven and Earth". Tonight and tomorrow Lord, I seek peace, protection, and healing for myself and Cayden. As I told Dan, Paul and Kristi tonight, I know in my heart that everything will be ok. I just want to wake up.

Saturday, April 24, 2010

It's All About the Spaghetti and Key Lime Pie

Yep, it was spaghetti night. Call me weird, but I had this "need" to have everyone here tonight at Dan's sister's house. More about that a little later in the post.

No more appointments, just the waiting game now. Much to my surprise, after a teary Friday night, I was able to sleep in a little this morning. Pretty much from the moment I woke up today, I felt sick to my stomach and didn't feel much like eating breakfast. I don't know how Dan is managing to keep both me and Cayden from falling apart at the seams (ok, maybe mostly me at this point). Although we didn't have a specific "agenda" for our day, we did need to get to the store for the spaghetti supplies and some yummy dessert. Also, today was the day all 4 of my parents, Cayden's mom Angie, stepdad Rob, and brother Taylor were to arrive.

Before we headed to the store, we took in a few innings of our nephew Adam's t-ball game. Oh's been awhile. Can't say that I miss those days. If you've ever watched 5 year olds play t-ball, you know how painful it is to witness. Balls being thrown 90 degrees off from the direction they're aiming. Everyone plays in the infield. The third baseman running all the way over to second base to get a grounder. Little kids running the bases without stopping, even when the catcher's clearly holding the ball. Players climbing the fence and doing everything but actually sitting on the bench in the dugout. Multiple inquiries of "When do we get snack?" Yes, t-ball is definitely entertaining. Thank God it was a sunny day. :)

Shopping would have been uneventful as usual if it weren't for a phone call from our friend Melanie to wish us well and let me know that they were thinking about us and would be continuing to pray for us. Melanie and David are our music leaders at church and we love them dearly. She and David are especially empathetic to our situation because David has not only had a transplant (kidney, not liver), but he has experienced organ rejection and is currently on regular dialysis awaiting a new kidney. I love to talk to Melanie, because she always has this way of making me feel like everything is going to be ok. At church she's come up to me, put her hand on my belly and has prayed for my liver. She always makes me laugh. I sure miss our music group.

While I was peeling plenty of garlic for our garlic bread for dinner, I received a phone call from my dad that he and Patti had arrived safely. Not long after that, Mom called, so I left Dan to make his fabulous spaghetti sauce for dinner while I drove to meet my mom to give her and Don the key for Gail's house. (Gail is the woman from Dan's sister's church who rents out her downstairs for a nominal fee for people who have family at Stanford Hospital.) I beat them to the house, and as I sat waiting in the car I was trying to recall how long it had been since I had last seen my mom and Don. I am embarrassed to say that I think it's been since my sister had her baby, Carson, 2 years ago! Shame on me. Considering they live only 4 hours away, I'd best not let that happen again. They were pretty tired from their long day of traveling. Their flight had left the Tri-Cities at 6 a.m. Ironically, they ended up on the same flight as my dad and Patti out of Seattle into San Jose. Angie, Rob, and Taylor arrived from their ridiculously long drive a little later and took Cayden for a couple of hours while we finished getting everything ready for our dinner with 15 people.

Dinner together was really wonderful. Dan's spaghetti was out of this world, as usual, and I got to eat my favorite...key lime pie. But the best parts of the evening had nothing to do with the food. Before we ate, Dan prayed and thanked God for all of us all being together to celebrate this event. It was an emotional moment for everyone, that I am sure of. There was much conversation and laughter across the table. So much so that it was hard to take it all in and remember to be fully present in the moment. Later on, at one point, Angie pointed out the irony of what was in front of us. Here she and I sat talking together, while at the same time my mom and Patti (my dad's wife) sat talking together across from us...the current wives chatting with the ex-wives. Who'd have thought? As I stood in the kitchen, Cayden came over to me and just layed his head on my shoulder. God, how I love that boy!

As everyone left, I felt sort of sad. I had planned this night for weeks, knowing that I wanted to have everyone together for a meal and now it was over. One more night after tonight, and then I'll be waking up early to head for the hospital. Both my mom and my dad are worried for me, but I keep telling them I'll be ok. When I get really afraid, I need to remember to tell myself that very same thing.

Friday, April 23, 2010

A Day to Chill (mostly)

Officially done with all of our pre-op appointments, we had just Cayden's morning session of school and his blood draw at the lab to deal with today. Even though Cayden has only been at the hospital school for 5 days, as we met Cayden at 11:30 when they dismissed, all of the staff were wishing Cayden well for his surgery. I love the teachers and staff at the hospital school. Being a teacher is hard enough, I can certainly speak from first hand experience, but what a tough job that must be.

Down to floor one and over to the Stanford Lab. After waiting about 30 minutes for Cayden's name to be called at the lab, I began to wonder if they had given all the phlebotomists either lunch break at the same time or an early start to their weekend. There were only two other people waiting when we arrived, so a 30 minute wait at a big hospital like Stanford seemed downright silly.

With Cayden's 7 vials of blood drawn, we were outta there. The sun was shining and we were ready to get away from the hospital for awhile. First stop...In-N-Out! Yes! As I bragged about it on Facebook today, I had a few nasty grams and jealous posts from friends. Actually, to be perfectly honest, Kim wasn't nasty, she just posted "Not fair!" Sorry Kim, my cheeseburger, fries and chocolate shake were delicious. Too bad Dan tried to avoid another In-N-Out patron when carrying the tray with pop and ended up soaking the back of Cayden with Dr. Pepper. He's now acting as " Super Chinese Laundry Guy" and is trying to get the pop stains out of the sweatshirt. Did I mention the sweatshirt was a white one?

As we were getting ready to leave In-N-Out, pre-op for Cayden called. We found out that he will be checking in on Monday morning at 7:00 a.m. for an 8:30 surgery start time. Of course, they always have to ask the same questions about the meds he's taking. You'd think they'd know what he takes by now. Instead of her asking about each one she had on file, I whipped out my Blackberry and rattled off my list of 10 different meds to her.

After burgers, it was off to the mall to get Cayden a pair of Crocs to wear in the hospital. Do you have any idea how hard it is to actually find a pair of Crocs? Apparently none of the stores sell them unless you want a pair of Wal-Crocs. We had to go all the way to the Valley Fair Mall to find the Crocs kiosk to get him a pair. Dan was in desperate need of a pair of sunglasses, as those of you back in Washington apparently let go of your tight grasp of our sun, so we ended up with a new pair of glasses so he'd quit complaining about it.

With all of our "necessities shopping" and eating out of the way, we headed to Santa Cruz to wander around on the boardwalk and the wharf to get our minds off the surgery. It's funny how you remember things as a child. My grandma and grandpa Houston used to take my sister and me to the boardwalk when we were little. I recall it being such a BIG and really cool amusement park. Funny, it didn't look so big to me anymore, and the Giant Dipper roller coaster just didn't seem like it could possibly be as scary as I remembered it to be. Another thing I didn't remember from when I was a kid was all of the "interesting" people, and I mean interesting. All the same, it was fun to wander along the boardwalk and enjoy the warm day.

As Cayden often does these days, he pooped out on us while we were walking, so we decided to do the rest of our sightseeing from the car. Within a few minutes in the car, Cayden was out for the count and the phone rang again. This time, it was the Stanford pre-op calling to inform me that my check-in was at 6:15 Monday morning with a surgery start time also at 8:30. I started feeling pretty upset, trying to figure out how this would all work logistically. Cayden will be spending the night with Angie and Rob that night, so I started panicking about how I would get to see him that morning before I go in for anesthesia. Dan told me not to worry that we would get it figured out and there was no way that I wasn't going to get to see him that morning.

Since Cayden was asleep, and we were in no hurry to get back to Menlo Park, we decided to drive up Highway 1 along the coast and cut back over at Half Moon Bay. It was such a nice day and that stretch of road is quite amazing with all of the vertical cliffs. At one point we passed a beach obviously popular with kiteboarders. I swear there must have been 50+ kiteboarders out there at the same time. I have no idea how they manage to get around without crashing into each other and creating a giant tangled mess. I guess that's why I am not a kiteboarder!

Unfortunately, driving doesn't exactly do the job of keeping one's mind off of things. I spent much of the afternoon trapped in my thoughts today, feeling nervous and thinking that I can't believe there are only 3 more "wake ups" until the transplant. I continue to receive such wonderful messages from many friends out there reading my posts. Although I have not had a chance to reply to every one of them, I can assure you, these messages have meant so much to me. I know that when I am not strong, He sends many to lift me up and get me through. I have no doubt that the next few days (and nights) are going to be very difficult, however I plan to post even until the morning we leave for the hospital.

Tonight I am praying for peace and for everything to fall into place prior to surgery for Monday morning.

Thursday, April 22, 2010

One Tough Day

I find it interesting that all of the other times I've sat down at my computer to write a blog entry, everything just sort of "came out" naturally and without much effort. Today just doesn't seem to be the case. I'm not sure if it's because these were the last of my appointments prior to surgery or that I am feeling pretty emotional and realizing the reality of the fact that today I met with the man who will, on Monday, literally hold my life in his hands.

Because Cayden has had his own appointments, has been attending school this week, and the majority of my appointments have been "evaluative" in nature, Dan has not been with me for my previous appointments. Thank goodness he was there with me this morning, because I'd say today's was the toughest yet. All the way to the hospital, my stomach was in double knots.

When they took us back to do my vitals, my blood pressure was 131/83, much higher than where I normally hover around. We waited for a bit before the surgical fellow came in and asked if we had any questions about the surgery. I wondered about how soon I might be able to exercise, how long would my stay in the ICU be, will the family all be able to wait in the same place, and a bunch of other questions including the all important...when can I have a glass of wine? Funny for being a "fellow", she couldn't answer very many of my questions with certainty. After waiting for what seemed like forever, at about 11:30, we finally met Dr. Esquivel, "the liver guy". He is in charge of the entire liver transplant program here at Stanford and will be my surgeon. Dr. Esquivel is soft spoken with kind brown eyes. He has a thick Spanish accent, and judging by his lanyard around his neck, I'd venture to guess that either his country of origin is Costa Rica or that's where he's been hanging out for the last few weeks (We had been informed that he was out of the country prior to the surgery).

Dr. Esquivel started by asking me if I had any questions about the surgery. I again asked some of the same questions I had asked the fellow but got some real answers this time. I did ask about the "two-fer" surgery. Due to the nature of this surgery and the risks, he didn't feel it would be a good idea to do the hysterectomy that I was hoping for. After listening to his rationale, I trusted that he had my safety and best interest at heart. That will just have to wait until later in the year. I was disappointed to find out that my parents will have to wait in the the Stanford Hospital waiting area in order to get updates on my surgery, while everyone else (including Dan!) would have to wait in the Lucile Packard waiting area to get updates on Cayden. It was all I could do to keep myself from crying when I heard this. I know I've said all along that I want Dan to be there for Cayden, but hearing that hit me in a way that I wasn't prepared for. The conversation moved to all of the possible complications that could occur as a result of the surgery...internal bleeding, bile duct leakage, liver failure, death, infection, deep vein thrombosis. I think I am getting used to hearing all of these things. I felt much better hearing from him that Stanford has had excellent success with their right lobe transplants from the donor standpoint.

After we were satisfied that all of our questions had been answered, Dr. Esquivel got real serious. What came out of his mouth next really hit the two of unexpectedly. He said, "This thing you are doing is very altruistic. I know there is already a special place reserved for you in heaven." A HUGE lump developed in my throat, and I was pretty certain both Dan and I were going to lose it right then and there. I wasn't quite sure what to say at that moment, but I immediately thought how blessed I was to have such a man of faith as my surgeon. I finally told him that we have heard many great things about him and that I trusted that we were going to be in excellent hands. He said, "I will do the very best that I can." And I believe that he will.

I was late getting to my pre-anesthesia appointment and Dan was late getting Cayden over to the psychologist. It didn't really matter, though, as they were able to get me right in to take care of all the necessary paperwork and tests to prepare for surgery. Today was the day I needed my Advance Directive for Healthcare. I signed a form and will bring the paperwork with me on surgery day. The nurse practitioner asked me questions about allergies, past reactions to anesthesia, and went through what to expect on the day of surgery. I was relieved to find out that both my mom and dad can wait with me before they put me under. I still don't have a surgery time, yet. Someone from pre-op will call tomorrow night to give me my check-in and surgery time.

More blood was drawn from an excellent needle poking lab guy (I didn't even feel the needle this time) who happened to be in the National Guard and had previously been to North Fort Lewis for some of his National Guard training. He even knew where my school was! What a small world. My last test of the day was to provide a urine sample. Good thing I had been drinking a lot of water and had my decaf latte today. Considering how often I seem to have to "go", that's one test I'm good at! :)

Tomorrow's a day without appointments. Cayden has school in the morning and then needs to have some blood drawn in preparation for the surgery. We're going to try and find something fun to do in the afternoon to keep ourselves occupied and our minds off the surgery. Two more days until my parents arrive. I can't wait to see them!

Wednesday, April 21, 2010

"I'm not mental . . ."

Anyone who knows our family well knows that Dan loves to make the most ridiculous voices. Sometimes he keeps going until he's satisfied that I am laughing so hard there are tears streaming down my face and my stomach aches. Imagine him right now with a doofy look on his face shouting out the phrase "I'm not mental!" Yep, today was my appointment with the psychologist, and I am happy to report that nope, I'm not mental. As a matter of fact, he's cleared me from a mental/emotional standpoint for the liver donation. Well, that's a relief. Six appointments down, two more to go!

Ok, I want to know which of you from Washington sent the crummy weather down here? Seriously, the wind has been blowing, it's been raining like heck, and it's downright cold. Just when I thought I must have been crazy on Sunday (when it was 80 degrees) for bringing my new fleece jacket and shell from Eddie Bauer, I was thanking my lucky stars that I had both of them to keep me from freezing to death the last couple of days. At least we heard that tomorrow should be sunny again and in the mid 70's. Give us back our nice weather, would ya!

While Cayden was at school this afternoon, we took a little detour through 3 South, the wing where he stayed for the two weeks while we were here in February. We got a chance to visit with Wajma and Jenn, Cayden's two favorite nurses on the wing. These two really are great! They put up with the four of us parents and Cayden for an entire two weeks...and we can be a real pain. Anyone who can handle all of us deserves a medal! We received big hugs and it felt a little like "coming home". They were so excited to hear that Cayden will get his liver transplant on Monday, and that I am a match for him. Fortunately for Cayden (and us!), he will be staying in 3 South again, so I am pretty sure those two will duke it out for who gets to be his nurse while he's there for 2 weeks! Wajma promised me she'd come visit me over on the Stanford side of the hospital when I am recovering. :) We are so blessed to be surrounded by such a caring hospital staff!

My mom and Don and my dad and Patti all arrive on Saturday. I'm so glad ALL of my parents will be here to support me during the surgery. Between them and all of our family here in Menlo Park, we'll have quite a rooting section waiting for us during the surgery!

Tomorrow's the all important pre-op appointment with my surgeon and the pre-anesthesia visit. I'll be finding out all the specifics of the surgery and probably more than I really want to know. One thing I do already know and forgot to mention yesterday, I will be in the ICU for the first night. Jessie, the Donor Advocate, said I will most likely wake up from anesthesia still intubated and with soft restraints on my arms so I don't freak out and rip the tube out of my throat...gross! I'm glad she at least prepared me with that bit of information. I can totally see myself "freaking out" if I didn't know this ahead of time. Dan will be with me at the appointments tomorrow since Cayden will be at school during that time. He's the one that remembers all of the medical details after I've zoned out from information overload.

Today was day # 3 without coffee. I finally broke down and had a decaf latte just so I could feel like I was drinking a "real" coffee. Getting through the day without coffee is a day without my giddy up and go. I hope by tomorrow I'll have gotten over the caffeine can only hope!

Tomorrow's Thursday - I can't believe how fast this week has been chugging along. I guess Monday will be here before I know it. Thank you and hugs to all who have posted comments and have sent private messages of encouragement. It means so much to me knowing how many are constantly thinking about us and lifting us up in prayer. If I haven't already mentioned it, Dan will be posting surgery updates on Monday the 26th on his blog .

Until tomorrow . . .

Tuesday, April 20, 2010

Appointments...Round 2!

Today was definitely a much more positive day. I was prepared for the worst, but really ended up feeling pretty validated and a little less nervous by 4:00.

Cayden got to "skip" morning session at school. Our day started at 10:00 with an appointment with Rebecca, Cayden's psychologist. She specifically works with transplant kids dealing with their feelings pre and post transplant and has literally seen hundreds of kids who have undergone transplants. We all met with her together for awhile, then it was time for Cayden to meet with her by himself and me to hustle on over to Lucile Packard Children's Hospital for my 11:00 with the Pulmonary Function Lab.

I was still trying to figure out why it was necessary for me to be seen by the specialist in the Pulmonary Lab. Yesterday as we were headed back to the parking lot, Sarah our Transplant Coordinator while Carmela is away at Disneyland this week (nice!), came running across shouting my name. She said the Hepatologist from yesterday, with the "awful" bedside manner, saw an obstruction on my chest x-ray from February and wanted it checked out further. Weird...wouldn't I notice if I had an obstruction in my own lungs? Mary Jo in the lab was really sweet. The lab experience was interesting. She had me do a variety of breathing tests to check whether or not there really was a blockage after all. I sat in this glass booth and had to wrap my lips around a contraption that reminded my of my scuba regulator. One of the tests emptied my lungs of air and filled them with oxygen. Another test had me take regular breaths, then breathe in deeply and expel as much air as I possibly could for as long as I could. There was a funny little flying toaster with flying toasts that I was supposted to "catch". Another time I had to breathe out until I made the balloon on the screen "pop". Mary Jo said the kids love the games...heck, I kinda liked them too. They made me work a little harder! Still another test had me keep trying to inhale and then later exhale with resistance. Most of the tests I passed with flying colors, but on the one where I had to inhale deeply and then exhale, I had to do the test 3 times instead of two. She asked if I had been ill a lot when I was, but I did mention that my mom had smoked until I was 16. That could be a contributor she said. Apparently, I have mild pulmonary obstruction. It isn't serious and won't impact my ability to be Cayden's donor, but still, it's weird to find out that I have something I didn't even know about.

After the lab and Cayden's appointments it was back home for a quick lunch and then off to school for Cayden and over to the Blood Donation building for me. Today was the day I got to donate a pint of my own blood for my surgery just in case I needed it. I was floored when I saw the sheet of charges. You know how they love for people to donate blood at the blood bank, well when you donate your OWN blood, they charge you an arm and a leg...$325 worth to be specific! Well, ok, not me...I'm not paying for my own blood, but it's part of the "Liver Transplant" package deal. ;) And if that isn't enough, if I don't need my blood during surgery, they can't even use it for anyone else. It is specifically prepared for me. They did mention that they could use my blood for research. Did I already mention that I don't really like giving blood? The tech there, Mary Ann, had an English accent. She was very accomodating when I told her that I don't really like to see my own blood or the needle in my arm, and consequently covered it up so I didn't get a "crick" in my neck having to look the other way the entire time. Unfortunately, when my bag was all filled, she hadn't noticed that one of the vials they use to run all the tests wasn't filled with blood. She profusely apologized for having to "stick" my other arm to get the last vial of blood from me. At least it wasn't as big and didn't hurt as bad as the first needle. After a little snack of a glass of lemonade and a chocolate cookie (yum!), I was on my merry way over to the transplant clinic for my meeting with the Independent Adult Liver Donor Advocate.

On my way over, I was mentally preparing myself for more of the "informed consent" blah blah blah that had bummed me out yesterday. I was pleasantly surprised. Jessie, who had previously worked with the transplant team, was wonderful! It's her job to advocate for me. While she gave me lots of the fact that I won't have the "J" scar that I've heard about, it'll be more like the Mercedes Benz symbol (upsidedown Y). Cayden and I will have fun matching scars...I've pretty much gotten over the fact that my belly won't be a pretty sight after the surgery - not that it is now, anyway! We did talk about risks, but not in the way that they were presented to me yesterday. I was reassured that Cayden and I are in excellent hands and have two of the best surgeons on the west coast. Dr. Esquivel is the head of the entire transplant program here at Stanford and has been at the hospital since 1998. Jessie has been in the operating room of many of Dr. Esquivel's surgeries and has seen first hand what it's like for the liver donors both during surgery and post surgery. She told me that I will probably still feel a bit tired after 3 months but by 6 months, all of the adult donors she consults with were feeling as good as they did prior to the that's what I wanted to hear! Another encouraging piece of news was that the sooner I get my body out of that hospital bed and start moving around, the sooner my body will heal and I will get to bust out of the hospital. You can bet I'll be doing everything I can to fast track my recovery.

With the day of appointments behind us and school over for the day, we headed home. I unfortunately am reaping the "unbenefits" of having postponed my own hysterctomy that was originally scheduled for last week and went straight for the Tylenol. I'm still waiting to find out if I can get that "two-fer" surgery I was hoping to have but am not holding my breath on it. Between that pain, the lack of coffee and sleep and my pint of blood donated for my surgery, I felt like I had been run over by a Mack truck. A nap was definitely in order today.

Tomorrow is another day closer to the big event. Five days left to be exact. At least for now, I feel a sense of calm and peace about everything. With just one appointment tomorrow, whatever will I do with myself?