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!