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!