NOSCO Cupcake Queen

I belong to MOSC (Marine Officer Spouses Club) here, as well as NOSCO (Naval Officer Spouses Club of Okinawa). I served as a rep on the NOSCO board for a year and a half, but now I'm just a regular member. There are lots of opportunities to volunteer and donate time and money to charity, as well as social and cultural events, too. I take advantage of what I can. NOSCO is broken down into "coffee groups" that have a common workplace or community, and the chaplain spouses group is one of the biggest, if not the biggest as far as participation. Back when I was on the board, I was asked what we did to have such high numbers. I had to think about it, and admitted that I didn't think it was anything we did in particular, it was just that as "pastors' wives," we are used to being involved with the ministry and fellowship, and that it seemed to just be understood that involvement came with the territory. I wish I could have been of more assistance with fabulous ideas to help them with recruitment, but that was all I could figure.

Anyway, each month, one of the coffee groups takes a turn hosting a social event for the NOSCO membership as a whole. This month it was the chaplain spouses' turn to host, and they selected a cupcake night. I happen to love decorating cupcakes. I love this book, even though I have yet to make enough of them to justify the purchase. Needless to say, I was excited about their choice.

A professional cake decorator came in and taught us all kinds of tips and techniques. I didn't remember to bring my camera to get pics of some of the creations (from beautiful to bizarre) OR me standing with the group holding my winning, sakura cupcakes.


But here they are at home, properly staged on their matching cherry blossom platter. As beautiful as they are, the thought of eating all that frosting and fondant makes me ill. I would scrape it straight in the trash. These were for my kids, though...and they loved it!



I had to take a pic of these cupcake wrappers the instructor brought. I'm going to have to go to Jusco and buy my own, since they are personalized and all.

Cupcake Queen...another title to add to my repertoire.

All this travel is getting old...

I know, it's fun to travel...and normally I love it. Looking back at the past couple of months (and the next few to come) makes me tired, though.

I mentioned Cliff had a conference to go to (in San Diego). Even though I've hated having him away (especially after being gone myself) I am so glad he is having some (relative) down time. This is no boondoggle (it's a combat operational stress conference) but he will get to spend time with some good colleagues, and afterward he tacked on a few days of leave to see good friends.

He made sure to eat at Rubio's for me. And of course he hit In N Out Burger. (Not that we are starved for good restaurants here, but there are just certain American favorites you've gotta get while the gettin's good!) He says he misses me and hated being alone in the hotel (yeah, what's he going to say?!) but hopefully he's taking advantage of the serenity.

I shamelessly stole these photos off of his friend Dave's Facebook page:


These guys all graduated high school together. Cliff, Dave and Gerry. Dave's mom kept Cliff fed consistently as a young man (their nickname for him was "Pobrecito"). I impressed Gerry early on with my tongue-cherry-stem-tying trick. They both gave Cliff the "thumbs up" after Cliff's idea for our fourth date was a Steven Seagal film festival with all of his buddies at his place. Hey, at least they let me have the bean bag. (And in all fairness, our second date was a Tupperware party at my place.) They are good guys and I'm glad Cliff got to spend some rare time with them.



They even went back to their alma mater.



Can you believe a high school in Anaheim, California lets a couple of middle-aged men just wander around the campus? Apparently, there was a basketball game going on. I'm sure they just thought they were a couple of dads, hehe.



He also got to see Sterling (no pics, though) and Sterling's parents, Bob and Gretchen. We love them so much...they are just golden people. I'm totally jealous he got to spend time with them, hopefully it will be my turn soon.

OK, honey...enough fun now, COME HOME!

Royal Wedding

I brought home a special treat from Hawaii. (Besides the dark chocolate covered macadamia nuts.) A wheezing, hacking cough. It started subtly on the plane, but has increased to the point that walking from my room to the laundry room leaves me winded. I know. I just did it. My lungs are screaming.

Also, Cliff left town for a conference, which has only compounded the suckage. I think it will be good for him, though. He needs some down time. After the conference, he's going to go spend some time with good, old friends who I am confident will give him the TLC he is in need of. I wish I could go too. I could use some TLC.


Instead, I watched this. (An actual photo of my TV screen.) I don't know if you've had this same experience...but my Facebook newsfeed has been lit-up with people saying things like, "What wedding? Someone is getting married?" or "who cares about a blanking royal wedding" or disparaging comments about marriage in general. It's almost like they think the hating will make them look edgy and cool or something. It doesn't. It's just boring. If you don't want to watch it...Don't. There you go. I happen to think it is romantic. And it's watching a piece of history in the making. Maybe it also has something to do with feeling like I found my prince twenty years ago? I don't know. (Have you seen Cliff in his dress blues? Insert tongue trill here.)

Anyway, I thoroughly enjoyed the diversion. It reminded me of my mom turning on the TV back in 1981 to watch Charles and Diana's wedding. Until that moment, had no idea there were princes and princesses outside the Wonderful World of Disney. My little mind was blown.

I'll take a royal wedding over most of the garbage on TV any day of the week and twice on Sunday. I just wish I could have watched it with my prince. He probably wouldn't want me to cough on him anyway and would go play XBox Madden Football. Come to think of it, I don't think it would take wheezing to drive him out of the room if I turned on the royal wedding. That's OK, he's still my Prince Charming. I wonder if princesses get sick?

I've sure missed hanging out with this guy

This past several weeks have been so crazy for me, but they've been just as crazy back home. I felt so guilty leaving when I did. As Operation Tomodachi was kicking into over-drive here, I left with Jake (leaving Cliff to manage the other three and their busy schedules) indefinitely. Cliff's boss left for the US for a conference and leave for several weeks...leaving him to manage working 14-16 hour days doing his part in the coordination of the relief efforts, while trying to handle things on the homefront, too. I did my best to try to stay connected with the kids via Facebook and email, but it's just not the same. I so wanted to be able to be that support and sounding board for Cliff when he came home at the end of a long day, especially under the current, stressful circumstances. It hurt my heart not to be able to be there for him.

The kids don't seem to have suffered much. There were some tough times with school stuff where I felt one of them really needed me here, but all in all, they did fine. One of my Visiting Teachers from church asked Patrick during Seminary carpool, "I feel bad that I haven't done anything for you guys...could I bring you dinner?" To which Patrick replied, "No, we are doing great! My dad bought all kinds of good food! White bread, toaster strudel, Chef Boy R Dee..."

It made me laugh when she recounted the conversation, because I could totally see Cliff walking into the commissary with the purpose of getting the most easy to prepare, most kid-desired food possible to last the rest of my absence. The kids knew a good thing when they saw it...and who wants to risk the Relief Society bringing over something actually nutritious?! (Now it's back to wheat bread and non "shelf-life" food. Mom's home. Bummer.)



Today was a real treat. We just had some mundane errands to run...but how lucky am I to have this man to run them with? It's SO good to be home!



We managed to squeeze in this lovely tempura and miso lunch at a Japanese restaurant in Jusco (Aeon, whatever! I'll never get used to their new name. Just like it took years to make the switch from Price Club to Costco...and I will NEVER call the Wild Animal Park "Safari Park." Won't happen!)



Even as we sat here with this wonderful meal in this cute little restaurant, things were different. We were more quiet than usual. I think we were kind of struggling to reconnect after fighting separate battles for the past almost-month. I know in the grand scheme of things, what we had to endure was nothing compared to what some people handle on a daily basis. Certainly nothing compared to what the people of Sendai are dealing with. We've had WAY longer deployments, and we've dealt with medical issues, too...so I'm not exactly sure what made this time so hard...except that I wasn't home. In the five deployments Cliff has done, the two that were preceded by a move were the hardest. There is just something about being settled that makes things easier to bear. Obviously for us, home varies greatly. It's wherever the Navy sends us, it's whatever structure happens to house our little family at the time...but having our family split in so many pieces, each of us dealing with our own battles just compounded the stress, I think.

At any rate, it's so good to be back home again. It sure makes one appreciate the little things, like grabbing a quick lunch in between shopping, getting keys made dropping off kids, etc. I'm sure we'll be back to normal in no time.

We've Been Sprung!

Jake had his appt. this afternoon, and was cleared for travel! We were careful to make sure no one came near his cast this time, hehe. His surgeon was on leave, but still in contact with the clinic. The xrays looked great, there were no concerns at all...so his resident was able to give us the all-clear. The surgeon here has already been in touch with the surgeon back on Okinawa that will take care of Jake's follow-up care. They want Jake in this cast for 4 more weeks, then in the AFO boot for another 4 to 8 weeks.

I think I failed to mention this, but the surgeon told us IN THE RECOVERY ROOM that he was PCSing (moving, for you non-military types) to Washington DC this summer. This is how he said it..."I hope I'm able to perform his other foot surgery. I'll be PCSing to Walter-Reed this summer, so I'm not sure...but I'd love to do his surgery there, if not here, so that he can have continuity of care." I'm thinking, "If only it were up to us and not the managed care system we work within, HUH?" I wanted to say, "Are you kidding me?!?!?!" I can't believe this was not figured into the equation when he was deciding whether or not he'd do both feet at once...especially since it would have been better for us for SO many reasons. All I could do was shake my head.

Anyway, I bring this up, because now we only have a one week window between when Jake has spent 4 weeks in his AFO boot and when the surgeon is checking out to move. And there is no guarantee Jake will even be ready at that point. It would sure make things easier to just get it over with before the move. Counting on getting the permission for Jake to travel to DC to get the surgery is a gamble...and since there are so many possible methods for the surgery, we really don't want to take the chance of another surgeon doing it completely differently and Jake having mismatched feet, if we can avoid it (considering he needs them to carry him around the rest of his life). It's kind of a big deal, I think.

We went back down to the brace shop in the basement and they had his beautiful, space-themed AFO boot ready to go. Since he is in the cast, he couldn't try it on for size, but it looks great! Very high-tech.

So, the battle continues. I'm just grateful to be going home for now. Tomorrow, we'll check out with the liaison and turn our plane tickets back on. Woohoo! I asked Jake where he'd like to go for dinner to celebrate.



Can you tell by the coconut shrimp where he chose?



If you guessed Red Lobster, you would be correct!



This is only the second time in his life Jake has ever eaten here, but he has always drooled over the commercials. He was in lobster heaven! At least living in medical-limbo has some fringe benefits.

Museum, Mongolian and Good Fortune

Poor Jake gets so bored. I feel sorry for him...but not so sorry that I relish leaving the room and dealing with this:


You wanna know what's worse? Crawling along in this parking lot, realizing...you missed your turn...and that it would cost you at least an extra thirty minutes of drive time. Awesome. It was about this point that I asked Jake if it would be OK with him if we just stayed in the hotel room the rest of our trip.



Drive with Aloha, my eye. I've got your Aloha, right here!



We finally made it to our destination, The Pacific Aviation Museum.



Pshhh...this map makes it look so much easier.



If only every road led to our destination this way.



What displays they had were very well done, but the museum was much smaller than we imagined.



I mean, this looks like just one wall in Jake's room.



After the aviation museum, we went back to the room to wait for Heidi's call. She had offered to take us to Hickam AFB for Mongolian BBQ tonight. What a beautiful location. (Unfortunately, my camera was not cooperating and would not focus properly...I think because of the steam...but you get the idea.)



Brandon is Jake's age. Jake immediately relaxed and enjoyed visiting with him...and Brandon was so considerate...all of the kids were...in helping Jake with anything he needed. It was such a lovely evening and I'm so grateful to Heidi for making the effort...with 6 of her kids!



Oh...and I can't make this stuff up. This was the fortune from my cookie. While not actually a fortune by definition, I think it was pretty apropos, don't you? I know I will never forget Heidi's kindness.

Andy's and Army Museum

Although I am grateful we are so close to the hospital (traffic can be a nightmare), there is nothing close by for shopping and food. The directory in the room has a map with several options just on the other side of the freeway...things like Papa John's Pizza and a Chinese place. It didn't take me long (just about 30 minutes of driving in circles) to figure out the map is outdated. It has all been replaced with car dealerships.

I called the front desk and asked for the nearest commissary. He said there was one right down the road at Ft. Shafter. I was so relieved...only to discover that by commissary, the clerk thought I meant gas station with shopette. While they did have a few items of produce and other groceries, I was completely traumatized when I picked up a bundle of bananas and a gecko jumped out of it and onto my hand. This place was OFF the list!

With Heidi's help, I was able to find a nice, big commissary to stock up...but with only a small microwave and fridge in the room, we did still need to buy at least one meal a day. Finding no apparent restaurants in the vicinity left me consulting the Internet for clues. The process was tedious...trying to figure out what was close enough...but then I just did a simple search for "Honolulu restaurants" and quickly came upon a site called yelp.com...filled with pages of restaurant reviews, which could be sorted by price, cuisine, neighborhood, etc. It has become my new best friend.

There is a problem with this, though...instead of looking for close and/or cheap...I couldn't help but look for what sounds the best, or is the most highly rated. Andy's is both...although close it is not. No matter...with page after page of rave reviews for their homemade bread, hand-carved turkey, to-die-for smoothies and fresh pastries...I would have driven the island over. In traffic. Luckily, I only had to go as far as Manoa Valley.


It was a little bit of a challenge to find...we drove past it the first time. There were lots of reviews filled with warnings about the lack of parking spots, but fortunately for us, Jake now comes with special VIP parking. My mouth is starting to water just looking at their sign again...



And is it any wonder? I mean...look at that sandwich! And the smoothie? Jake got strawberries and cream (which had yummy coconut milk), and mine was a tropical slice of heaven with stuff like papaya, mango, strawberry and banana. Andy's is the definition of 'hole in the wall'. To demonstrate...see the guy sitting at the table on the left? That table is up against the shelving that runs the length of the restaurant. See the person leaning on the right? He is leaning against the coolers that line the other wall. That's how big the place is. This proved unfortunate when the young couple seated at the table next to us started making out. I'm not kidding. I saw her tongue and everything. Classy. Jake looked like he wanted to rake out his own eyeballs with his bare hands. {Man, how I miss the society of zero public display of affection...where my husband and I catch sideways glances for holding hands. I wanna go home!}



And get a load of that menu...does that just scream YUM?!



Oh my goodness, I want to bite my computer screen! See those white bags up top? They hold homemade, chocolate-chip granola bars and chocolate muffins for the road. They were already out of their famous apple turnovers, so we will have to go back, for sure.

On the drive down, we saw traffic horribly backed up in the opposite direction, and heard on the radio that there was a shooting of some sort which had a major road totally blocked off. Charming. Rather than sit in that nightmare, or try to magically find an alternate route home, we decided to head down to Waikiki and check out the Army museum to kill some time. {That's probably not the best phraseology. Sorry.}



Again, plenty of VIP parking right up front.

Ahhh...pining away for "home" just like me, I'm guessing.



This was a very cool tribute to veterans of the Korean War. We found lots more to see inside...











I found this exhibit the most interesting...and touching. General Shinseki is Hawaii's homegrown hero, and there was an entire room dedicated to his life and military career.

If you can't read this, click on it to enlarge. Reading this brought tears to my eyes. Who wouldn't want those things said about her by her husband? What a special relationship they have...and he sure has a way with words.



When we got back to the hotel, we were greeted by a very special surprise from Grandpa Jim. What could it be?



Is this gorgeous or what? These ginger flowers are individually wrapped with rose petals. I wonder how long something like this takes to make?



Jake's was a manlier variety...but just as beautiful. It was so thoughtful of my dad to send us something to help us catch the "aloha" spirit...



Heaven knows we could use some of that around here. Thanks, Dad!

Do I Have a "Kick Me" Sign?

I don't even know where to start...and I don't know why I'm surprised. We showed up for Jake's first follow-up appointment this morning. We were directed back to the cast room, which was hopping! I caught a glimpse of Jake's surgeon in the corner, dealing with a broken arm. There were several residents and techs tending to the room full of patients in for cast checks, etc. We were met by a {very} young ortho tech, who listed the procedures for us. She said first, she'd remove the cast, then we'd wheel down to x-ray, and when we were done there, we'd come back to the cast room to see the doctor.

Funny, when recalling the doctor's explanation of how things would go...I didn't remember the cast removal part. But, I dismissed it and let her get to work. She did this every day, right? As she got closer to his incisions, I pointed out to her where they were located so she'd be extra careful. Jake winced a bit, but she was able to get it off without too much trouble.

I wheeled Jake down to radiology, and was relieved that I went in with him, after they attempted to do the weight-bearing and non-weight-bearing x-rays on the opposite feet! It was entered into the computer wrong, and I had to tell them twice he couldn't bear weight on the surgical foot. The whole time, I'm thinking, "Why did they have to remove this at all? Doesn't an x-ray machine work through a cast?" We finished, and I wheeled Jake back down toward the cast room, just as his doctor was walking out of the room. As soon as I saw his expression, I knew something was wrong. He saw us coming toward him, froze and said, "What is he doing without his cast?!" whipped back around and said, "WHO took his cast off?!?" I wanted to throw up. I didn't know exactly what this meant, but I knew it wasn't good. {UGH! Not again!!!}

He gathered the techs around their work station and held a heated "in-service training" on the spot. He said he was to be consulted on any of his patients before cutting off a cast. {It turns out the tech was new, and didn't know it wasn't protocol to remove a post-surgical cast.} My mind was racing, trying to think what this could mean. He explained that for proper healing, the cast needed to be molded to the shape of the bottom of his foot, something that needed to be done under anesthesia, since he'd be applying pressure to the incision...and now he was going to have to do it over again, sans drugs. I started to shake as the scene flashed through my mind. "Is there going to be screaming?" was all I could think to ask. "Hopefully not," he replied.

{Trivia: I cannot handle my children's pain. Can't do it. I used to be a field medicine/aviation medicine hospital corpsman. I gave shots by the hundreds....drew gallons of blood (one vial at a time) and even applied and removed sutures. None of this bothered me. I've listened to the screams of grown men (kidney stones...not battle wounds) and kept it together. The screams of my kids are a different story, entirely.}

I was shaking. I thought my knees were going to give. The doctor looked at me and pulled up a chair to Jake's exam table and told me to have a seat. {I'm sure I was in shock and looked like it.} I was mentally kicking myself for not questioning the ortho tech about removing the cast. I always ask questions! Why not now?! I said, "I thought it was odd that she was removing the cast. I should have said something. I just didn't want to look stupid." The doctor chuckled and said, "Oh there's plenty of stupid to go around here for everybody, trust me..." which was welcome comic relief. After examining the incisions, the doctor started to apply another cast. He took it slowly, was very gentle...and as he rolled, he described the next steps. He wanted Jake in this next cast for 4 weeks, totally non-weight-bearing. At that point, it would be removed and his foot would be cast for a custom orthotic boot (AFO). They would reapply a traditional cast while the AFO was being made. When that was ready, he could start partial weight bearing for the next 4-6 weeks.

Suddenly, it dawned on me...we've played the orthotic waiting game BIG TIME before. MONTHS for orthotics to be made on Okinawa...because it's only ONE GUY that does them for all of the military in the Pacific. I asked the doctor how long it would take for the AFO to be made. He wasn't sure, but said he was told our hospital could order it from a base on mainland Japan. I rolled my eyes and told him that if it was the same place that did his other 2 sets of custom orthotics, we'd be waiting months. I said, "We waited around four months each time. We are two years into this process now." At this point, he stopped wrapping and turned to the tech and said, "Take it off." They removed the cast AGAIN, and molded yet another cast on to his foot so that they could order the orthotic here in Hawaii. {Maybe even have it done so that we can take it when we leave here.} When this thinner cast was set, he cut it off to send to the brace shop, and started on cast number THREE of the day! Lucky for Jake {and me}, he was very gentle and there was no screaming whatsoever.

So, the silver lining in this? If the first cast had not been accidentally removed, chances are the doctor would not have been willing to remove it in order to do the cast molding for the AFO here in Hawaii...meaning, we'd have a long wait behind everyone in the Pacific for one guy to get around to Jake's order. But since it was already off once...why not remove it again? After Jake's final cast (pictured above) was finished...we got to go down in the basement to the brace shop (which was first rate...just what you'd expect from a training hospital with a ginormous budget) where Jake picked out the style and design pattern of his AFO. Bonus! {He chose a space motif, if you were curious.} It would have been whatever scraps they could have pulled together, in the color d'jour, if it was being done back in Japan.

Regarding the fact that they were making his AFO here instead of back in Japan, he said to me, "You just may rewrite the procedure on this one." Heavens, I hope so! If anything, I hope that what we are going through here is somehow making it easy for the next person. And the next. I can dream, right?

More Hospital Craziness...and Lessons Learned

Let me start this post by apologizing for all the drama lately...but oh my goodness, this just keeps on going! I hope to be back to our regularly scheduled shiny-happiness ASAP. If you want to check back in when the coast is clear, I'll totally understand.

This morning started out bright and early. 6 AM-Rounds for the residents. I didn't sleep half bad in that fold-out chair. Neither did Jake, apparently. Unfortunately, this meant he slept through a dose of his pain meds. This didn't occur to anyone until, 6:30 AM-Pain spike. I was so grateful we weren't dealing with this by ourselves in the hotel room (and by we, I mean me). Of course, if I had been dealing with it by myself, I would have set the alarm to administer the pain meds. Just sayin'. Anyway, it was pretty brutal. I don't handle my children's pain very well. It seemed like it took forever to bring back under control, but it was such a relief when he was resting comfortably again.

After the surgeon's visit to check on him, I got the impression we'd be staying another night, just to make sure his pain was under control. The OT and the social worker both stopped by and went over his needs in those areas. I was given instructions and handouts to secure the "must have" shower chair, Jake was issued his crutches and taken on a bit of a scary trial run (with his IV catheter still in his arm)...and a rental wheelchair was ordered. At this point (just after noon), I decided Jake was probably in a good enough place that I could go back to the room and shower and change. I hooked him up with a Harry Potter movie and made my way up the hill. (Knowing there would be no parking in the hotel lot, because hospital staff also use it, and also knowing my front-lot hospital spot I had scored the night before would be gone if I left it...I opted to just walk back and forth.) When I got into the room and started to gather my things, I realized...I had no clean clothes. A much needed shower and two loads of laundry later, I was headed back down the hill to see how Jake was doing.

I logged back in and spotted the shiny new wheelchair outside his door. When I entered the room, I saw that we now had roommates. Jake was kind of upset I had been gone so long. I told him I'd be back in just over an hour and I'd been gone for three. I felt bad, but what could I do? His movie was over and the nurse had started another for him. He popped back in to check on Jake, and said that he heard we'd be headed home soon. I was confused, so he called to have one of the residents come back up and talk to us.

The {15 year old} resident arrived about 20 minutes later. She said that since he'd been fine since this morning's pain episode, he was OK to be released. The surgeon had really made it sound like we were staying another day, and frankly, I was scared that his pain wasn't going to be managed via oral medication. I explained that the OT had insisted we have a shower chair and that I hadn't had a chance to go out and get it yet and was hoping to do it while he was still in the hospital, so he wouldn't be left alone in this condition while I scoured the island for medical supply stores. Instead of being concerned about...or even acknowledging this predicament, she said, "Well, the OT didn't say anything about this in her notes." Blank stare. I wanted to say, "Yes, I'm just making this up. This entire 30 minute dialog I had with the OT, her insistence it was necessary for his safety, how Tricare didn't pay for it anymore, so I'd have to pay for it, the list of places to look which I held in my hand...yep. I'm totally making this up."

Finally, I just said, "By releasing him now, you are in effect, saying he's OK to be left totally alone in a hotel room while I not only find this chair, but while I go out and get all of our meals, since he's supposed to be in bed for the next five days with his leg elevated above his heart, other than to use the bathroom and shower. So is that what you are saying? Because I'm not thinking he's ready for that." She didn't even blink. "He'll be fine." (looking at Jake) "You're not going to do anything stupid, right?"

On one hand, I SO wanted to be out of there, on the other hand, I kept visualizing the story my neighbor told, of our other neighbor whose child had a similar surgery {same hospital}, they under-medicated him, and she had to leave her screaming, vomiting child back in the room with a hotel employee while she raced back to the hospital for adequate pain meds. This whole system just seemed so crazy! Hotels are not hospitals...and patients don't have adequate support, removed from their communities! But what did I know? Apparently, Jake was ready to care for himself.

So, the resident left and the nurse came back to tell us we'd head down the the cast room for Jake's overwrap before they discharged him, but that they had said they were pretty backed up and asked us to wait about an hour. (The surgeon had left his cast cut open, up the middle, to allow for swelling. Now they needed to wrap more of the cast material around it, to harden it into a regular cast.) About an hour later (5 PM) a nursing assistant took us down to find the cast room deserted. No one in sight. She managed to get someone on the phone who paged someone who came in and wanted to know who we had talked to. He was the ortho tech on call, and he knew nothing of this. When he looked Jake up in the computer system, he discovered that the nurse on the floor had mistakenly placed the order with (and spoken on the phone to) the casting room of the ortho clinic at Schofield Barracks...nearly an hour away...instead of the casting room of the ortho clinic downstairs in the same hospital. *Facepalm*

The ortho tech wrapped up the cast. Jake had now decided to have white wrapped over his previously chosen, hunter orange...guess he was bored with it already. It was now after 6, and Jake's foot had been down WAY too long, so we hurried out to the lobby. I fished in the pocket of my backpack where the keys should have been and they're gone. I search through all the other compartments...nothing. I mentally retraced my steps and realized, since I'd been walking back and forth between the hotel and hospital during Jake's stay...I must have left them back in the hotel. The nurse offered to call the hotel shuttle, but couldn't get a hold of them...and I was doubtful they would even come after hours. So, I determined it would just be quicker for me to walk across the hospital parking lot and up the stairs and across the hotel parking lot and back, than it would be to wait for a shuttle. I think I mentioned these stairs before.



You can't really see all of them here because they turn to the left and keep going...but there are 103 steps here. While I realize this might be someone's cardio-fantasy...I hate stairs. And when I was about 3/4 of the way to the top, I kid you not...out of nowhere it started pouring down rain. I had had it at this point, and started sobbing...and since I was also out of breath, this was not easy. I looked up to heaven, and said, "OK...what is the point of this? What am I supposed to learn from all of this?" I was just feeling kicked while I was down, and just wanted to get my kid back into his bed.

When I made it to the room, the key card would not open the door. Now I was really crying, and digging through my bag for another, and hoping I was alone in the building. I finally found one that worked. So, I started searching the room but couldn't see them anywhere. I remembered I was wearing my jacket last night, and I was betting the keys were in the pocket...only the jacket was nowhere to be found. It was now going on 6:30, and I was panicking. I called back to the ward to see if maybe I left the jacket in the room...maybe it had fallen behind something. They couldn't find it either.

So, I did the only thing I could do...I prayed and headed back down to the hospital, empty handed. I walked by the rental car to see if for some crazy reason I had left it unlocked with the keys inside (which I would never do) but it was all secure with no sign of the jacket, either. As I walked back to the front of the hospital, the nurse was waving her phone at me, saying, "They found your jacket with the keys inside!" Since it was taking so long, she had called up to the ward to get the phone number for my room. They told her I had just called, and that they had found the jacket wrapped up with the linen and someone was running it down. Hallelujah!

Just then, who should walk out the door, but the surgeon. He was very surprised to see us, but I gave him a nutshell run-down of all that had transpired, and he just shook his head in disbelief. He pointed at Jake and said, "That young man needs to get his leg up in the air...because that cast will act just like a tourniquet." I told him we were working on it, that someone was headed down with the keys as we spoke...but wanted to say, "Now tell me why it was so important that he be released tonight...AFTER business hours...leading to all this craziness?! WHO'S plan was this?!" But I was just so grateful to be getting out of there, I refrained.

As we were driving back up to the hotel, I remembered that Heidi was supposed to come visit us earlier this afternoon. I wondered if something had happened, and if she would show up, just to find us gone. I hoped that they'd at least steer her in the right direction if she did show up. Jake was really starting to feel the pain and I was eager to get him pumped with some more drugs with his foot elevated. He did not like the loopy feeling of the oral meds at all, but I was just glad to see him resting and not in pain. It was now after 7, and I had had some cookies to eat this morning, and that was it. The shower chair was going to have to wait for tomorrow, but we needed dinner now.

Just then, the phone rang. It was Heidi, apologizing for not making it down earlier...her day was pretty crazy. She asked how things were going, and I gave her the rundown of the latest misadventures. Then she said, "But...it worked out so that now I'm headed down ALONE (did I mention she has 7 kids?) and I just thought I'd pull over and call you to find out if you've eaten yet? I'm by a bunch of different restaurants." I wanted to cry. She had totally thrown me a lifeline. She listed what she saw, I picked Chili's and told her what we'd like. Then she asked, "Is there anything else you need?" I told her that the only other thing we needed was that shower chair, but that I'd just look for it tomorrow. I told her the OT gave me a list of medical supply places, but she had said that I should try Long's Drugs first, because if they had it, they'd be the cheapest option. Then Heidi said, "I'm sitting right in front of a Long's Drugs." And it just so happened, that she knew exactly what we needed, because she had had surgery and had needed one, too.

That one phone call had changed my entire outlook. I had felt completely alone...like we had been sent across the ocean to totally fend for ourselves. The "powers that be" who sent us over here, really didn't seem to care if we had a decent place to stay, or how things turned out in the end. It felt like I had to fight within this system for everything and could take nothing for granted. But after I hung up the phone, I heard clearly in my mind, "I will not leave you comfortless." Maybe no one in this big government bureaucracy really does care what we're going through or what our needs are...but someone more important does. I have a Father in Heaven who meets my needs perfectly...and he will not leave me without comfort. That, my friends...is the lesson I needed to remember (as I looked toward heaven in the pouring rain). That is the take-away number one.

Heidi arrived in what seemed like no time at all, with delicious smelling food and the exact shower chair from the picture. As much as we needed the food and the chair, I needed the spirit which she brought even more. While Jake rested in the other room, we sat at the table in mine and just talked and talked. It's hard for me to express how uplifting the conversation was. It felt like medicine. I appreciated the opportunity to get to know her (more than the breaks and wives' luncheon at Chaplain's Conference usually provide). I will never forget what an angel of mercy she was to me...and it was obvious as we discussed the events of the day that led up to her being in my room at that moment (instead of earlier in the day at the hospital) that this was no coincidence.

Lesson number two came to me earlier today. I am just a visitor here in medical purgatory. I have friends who LIVE in this world...who are never going to be done with this as long as their children are living. I can't even imagine what that is like...and I'm so grateful that my stay here is temporary.

Lesson (or reminder) number three was that God answers our prayers through other people, sent on his errands...and that all of us have the ability to be angels of mercy to others. I pray that I can be the type of angel to someone else that Heidi was to me today.

Surgery Day

Our day started out bright and early. No need to make time for breakfast with Jake's NPO status, so that bought us another thirty minutes of sleep. I was absolutely dreading going through the two-hour, pre-op appt. With good reason. I spoke to my friend Heidi about it last night, and she said it's not a pleasant experience. You are just basically shuffled around from room to room, signing in at each station to wait to have things explained to (and questions asked of) you. {Heidi's hubs is an LDS Army chaplain and we've gotten to know them through our October conferences over the years. They are stationed here.}

As soon as we arrived on the floor, I realized something. With all of the craziness in the clinic over the past couple of days...at least no one was rude. These nurses behind the counter on the surgical ward were just plain mean and nasty. I seriously wanted to ask if they were always this rude to people, or if I was just special. I was yelled at twice for standing in the wrong spot. I'm not kidding you. It's not like it was obvious or intuitive...I was just following the signs. {"Oh...I'm sorry, Nurse Ratched...this says 'check in here for surgery.' I didn't realize there was ANOTHER 'check in here for surgery.' Sorry I picked the wrong one."} When we got to the station where a nurse does the vitals and creates the chart, etc., we found out she hadn't gotten the memo that Jake was to be admitted (not an outpatient). This would mean a totally different chart and set of forms. She was obviously ticked and couldn't get a hold of the Dr. to confirm...and just got more ticked that no one would return her page. That was fun.

After several stations, Jake had his gown, robe and slippers and knew how to use them. We were finally in the last waiting room, ready to speak with the anesthesiologist. Into the room walked Heidi, her husband, and a military Sr. missionary couple. I can't even tell you how wonderful it was to see their shiny, happy, friendly faces. What a blessing! Right behind them came the anesthesiologist, so they waited while we met with him. He was absolutely delightful. Jake couldn't stop cracking up at his iPod playlist. I'm guessing because the music was right off the set of Soul Train, and he was Caucasian and obviously not even yet born in the 70s. While Jake found it amusing, I was thinking, "I could seriously be friends with this guy."

When we came back into the waiting room, Lee (Heidi's husband) mentioned there was a meditation chapel just around the corner. We went to the counter to tell Nurse Ratched and Co. that we were just going to go around the corner to the chapel for a few minutes, and she went into overdrive with "WHERE are you going? WHAT is the patient's name" in a tone usually reserved for someone who has just thrown your bike in a ditch. I couldn't help it, I turned around to Heidi and said (so anyone could hear me), "Do you see what I was talking about?" Strangely enough, her demeanor changed...as if I had just held up a mirror to her behavior.

In the chapel, we were able to shut out all of the craziness, rudeness and anxiety...and just focus on peace and each other. Lee and the Elder gave blessings to Jake and me, which was so helpful. Cliff had given us blessings before we left, but with all that had transpired, it was so nice to be brought back to center again. After a few minutes, they left...promising to come visit again tomorrow...and Jake and I made our way back to the waiting room. About 15 minutes later, a nurse came to lead us to the OR.

This is where Jake started to panic. "I'm not ready for this...I'm not ready to give up walking yet!" Hearing the panic in his voice was heartbreaking...but we had come this far, and needed to just push forward, so I just stayed calm and told him he could do it, it would all be OK. Jake got gowned-up and climbed into his bed to wait for his turn. In a matter of minutes, the surgeon came out and talked to us for a few minutes. Then the anesthesiologist tried to start the IV. Even though they had put patches on his hands to numb the skin, Jake panicked some more at the thought of the needle. He offered to give Jake the mask instead, but warned the gas had a very strange smell. Jake wanted him to describe the gas, but he had nothing to compare it to. {Jake later described it as a cross between BO, diesel fuel, onions and cilantro.} Then Jake wanted to know if he was going to dream. Then he asked how many people were going to be in the room.

By now, I'm getting the feeling Jake is just looking for ways to stall. He opted for the mask, and then the anesthesiologist asked Jake if he wanted ME to scrub up and accompany them into the OR and wait until he's asleep. I know Jake really doesn't need this, but of course, he agrees to the suggestion. Unfortunately, by this point it's after noon, I haven't eaten anything either, and I'm starting to feel sick. The thought of being in the OR makes it worse. I've just been waiting for them to wheel him in, so I can eat something and take something for my headache before I start dry heaving.

Luckily, Jake was understanding when I explained that I was feeling sick and needed to take some medicine, and agreed that I should just walk him to the OR door. I followed them to the point of no return, kissed him, told him I loved him...turned around and {surprise} started to cry. It was just a tension release, I'm sure. I knew he was in good hands...knew he was going to be fine and that this was for the best...but it was still stressful.

While I waited, besides getting some miso udon noodle soup and taking some Motrin, I went and got the temporary handicapped placard for the rental car, and picked up a little something for Jake to cuddle with when he woke up:


What can I say, he's not the teddy bear type.

I was only back in the waiting room for about twenty minutes when they came in to get me, so it wasn't too bad at all. Jake spent two hours in recovery...he just wouldn't wake up. It was actually not too different than any other morning. He's always been a sleeper. The surgeon said things went great..two incisions...one on the foot, one on his calf, just above the ankle, to lengthen his tendons (which should improve his poor range of motion). Jake was now the proud owner of a dead guy's foot bone. How many kids can say that?

As I watched him stir, trying to fight his way out of his sleep, I had a vivid flashback almost twelve years earlier, back to the day (a week into his PICU stay) he was finally being allowed to come out of his drug-induced coma, with the hope that they could try extubation. I was dangling a necklace, back and forth, over his hand...trying to tickle him awake. I'll never forget the moment his eyes finally fluttered open and he tried to focus on the charms and moved his hand to grasp them. When he saw me, a big smile flashed across his face...but then his little face quickly crumpled into tears (but he couldn't really cry around the vent). Back then, we were only sent about an hour away to the nearest major military hospital, for what ended up being a two week stay (although a much scarier one). Now we are thousands of miles from home for almost twice that long...but again, just the two of us.



Jake at six months, during his PICU stay after contracting Infantile Botulism.


Anyway, as he did get more wakeful, he started expressing lots of regret...wishing he had never agreed to the surgery. He was complaining about numbness in his leg (turns out he just didn't realize the cast was what was keeping him from feeling the sheets) and pain in his good heel (maybe from the way it was resting during the surgery). Finally, he was awake enough for us to head up to the pediatric ward.

They have been really wonderful up here...and it is such a relief, I can't even express it. Why can't everyone be this lovely to deal with? I'm so glad we are staying the night. When I think about having to take him home in this condition, it just blows my mind. He's so groggy and anxious. Luckily, the chair folds out into a bed that is actually comfortable, so I can stay right here with him. (Beats the recliner I slept upright in,back at the PICU). There are three other beds in the room, but we have it to ourselves, at least for now.

Goodnight!

Tomorrow is the Day...

Wow, I feel absolutely spent after this day. It's no secret...I'm not a good patient...nor a good patient's mother. In reflecting upon today, I'm reminded that there are two reasons I'm so grateful for my health and my healthy family. The first is obvious...healthy bodies allow us the physical freedom to do practically anything. But there's another reason I feel is just as big...and that's not having to be at the mercy of the medical establishment. Oh my goodness, what an ordeal. Again, I admit, I'm a control freak...so I don't do getting yanked around very well. At all.

We received another phone call this morning, this one telling us that now our two-hour, pre-op/anesthesiology appt. has been postponed until tomorrow at 7 AM (day of surgery) instead of 11:30 AM today, since they rescheduled the appt. with the surgeon until this afternoon. Evidently, that one has to happen before anesthesia. So we'll have zero chance to ask questions, receive instructions, anything, before we're headed into surgery. This was SO frustrating, but I figured we'd at least have a chance to finally talk to the Dr. this afternoon and get all the details of the procedure.

I tried to look at the bright side...at least we had a little more time to get down to the beach for the last thing Jake wanted to do before he's no longer able to get in the water.




We had a very nice time riding the waves in this thing. It was an absolutely beautiful day. It was so nice to take an hour and just relax. I had been really nervous about it...couldn't believe I had let Jake talk me into doing it...but I really wanted him to have some good memories of our trip here. We even had a sea turtle swim right up to us and pop his head out of the water for a breath, before swimming off. Of course, since I forgot the waterproof case to the dive camera, I had no camera (which is also why I only have this pic of Jake on the shore before I had to run and put the camera in the locker).

We finished with enough time to grab something quick for lunch and drive back to the lodge and rush down to the hospital. When we arrived at the counter, the receptionist said, "You'll be seeing Dr. Y"...to which I said, "No, Dr. X"...he said, "I'm confused, it says Dr. Y" To which I reply, "I don't even know him...do you mean to tell me we're not even going to see the Dr. performing the surgery? Why did they tell us to come at this time, then?" (Mind you...we are now on our third appt. time...yesterday AM, today AM and now today PM.) He told us to have a seat and he'd find out what was going on.

I was seething, tears already starting to well up. This whole thing has been such a comedy of errors....from the get go, {two years ago}...and the past couple of days have been the worst...with this whole chain reaction of screwed up appointments. I felt like just a number. {NEXT!} We had so many questions, and had been waiting so long to ask them. Other than the twenty minutes we met with the surgeon initially for him to look at Jake and decide he could help him, we've had nothing. No information. We wanted to know things like, how long is the surgery? Which method would actually be used? How long would he actually stay in the hospital? How long would he have to stay in bed? As the time got shorter, I felt more and more powerless...and disrespected. Surgery is tomorrow and I KNOW NONE OF THIS!!! The receptionist came back out and said that Dr. X was in surgery. I stood up and said, "This is ridiculous. I want to be speaking with the Dr. who is going to be cutting open my son, not a stand-in. I'm done. I'd like to speak with the Patient Contact Representative and the Marine Liaison. This is totally unacceptable."

On the way down the hall to the PCR office, I was shaking. I couldn't believe we'd gone through all of this hassle, and that these people thought it would be acceptable to just start cutting on my kid without letting us have as much specific information as we wanted. This couldn't possibly be the way it was supposed to happen. After sitting down with her and seeing the horror on her face over the way things had been handled, I knew it wasn't just me. A few minutes later, the receptionist appeared at the door and said Dr. X was there and would be seeing us. Apparently, he planned on seeing us all along and was just on his way down from surgery, just running late. Why no one else knew this, or the computer didn't reflect it, I don't know. It's too bad that this was just the cherry on top of everything else and not just isolated, or it wouldn't have gone this far.

So, this is the tense note on which we started out our appointment. Lovely! Dr. X wanted to know why I was talking to the PCR...and I said I felt like a number. I told him I thought he was a wonderful Dr., obviously very compassionate...but that while this may just be routine to him...this was a VERY big deal to us and we had almost NO information (voice cracking). I told him that while the game of appointment musical chairs was certainly frustrating, learning we wouldn't even be speaking with the actual surgeon was the last straw. He said that they {meaning the front desk guy} didn't know what they were talking about, that that was never the case...and I asked how I was supposed to know that? Anyway, as the appointment went on, the tension melted away, I got all the information I wanted and he admitted he would have done the same thing if he was in my situation with one of his kids. He apologized for all the bouncing around, but said he wasn't even aware of our existence until we showed up here last week, and had had to go to great lengths to fit us into the schedule. {I totally believe him and it shouldn't surprise me at all, but it slays me...who's in charge of this stuff, then?!}

OK...so here's a few things that blow my mind. {And I have to preface the first two by saying, I don't think this is how things normally go here. I'm very impressed with the Dr. overall and definitely want him doing Jake's surgery...I think it's just a continuation in the comedy of errors that has been our experience, for whatever reason.}

*As he's describing the procedure and mentions inserting the bone again...I ask, "Where is the bone coming from?" {Meaning...where on Jake's body.} Dr. X says, "Oh it's cadaver bone. We have it up in the lab." When he sees my puzzled face as I try to process this, he says, "Well, the chances of infection are practically nil, the chances of rejection are zero. If you don't want me to use that, then we can take some from his (I don't even remember where he was proposing because I was trying to wrap my brain around this) but that would be an additional surgery." For the record, I don't have a problem with cadaver bone. But am I the only one who thinks this is "lead-out" kind of info...not "after-thought, day before surgery" info? That's what I was trying to process...and it almost made me laugh. I tell him the cadaver bone is fine.

*As we are finishing up the appt, I mention something about the anesthesia appt the next day, and he apologizes again for us having to do it "day of," that it's obviously not ideal...but then casually says, "The only thing you really need to know tonight, is nothing by mouth after midnight...otherwise we can't do the surgery." I'm thinking, "Good to know. When were you going to mention that show-stopper?" I just let it go, though...there had been enough negative mojo in this appt already.

*They normally do this surgery on an outpatient basis. Once the patient is awake and pain is managed, they street you. I can't even fathom this. He said that since Jake was an aerovac patient, he would be admitted at least overnight, because they wouldn't send us back to the hotel with him in that condition. At least there's that!

We were totally spent at this point. Glad to have answers, but still feeling upset things had to get to the place that they did. I told Jake to pick someplace good for dinner. He decided to take up the Dr. on his recommendation:


Hawaii has sushi-go-rounds, too!



I had driven by one of these, but wasn't sure exactly how to get back. I kind of got lost and found it from the other direction, but we made it! We got there about twenty minutes before closing. That was enough time to put away a respectable amount of sushi.



Jake chose this darling, fishy, ice cream sandwich for dessert.



And the surprise inside? Chocolate? Of course not. Bean paste. Mmmm...just like home.

{Enjoy it, buddy...it'll be your last taste of anything for awhile.}