Sierra Bingham..... I have a bone to pick with you!!!

Sierra had her transplant in August 2006, she received her heart literally within moments of her death. Truly a miracle. For the most part she's done exceptional, with a few bumps along the way. Last summer she scared us in the same way she scared us yesterday.....lots of swelling, which is a bad sign. They have run a bajillion tests so far (x-rays, labs, echo, EKG) the routine stuff....and they are waiting on results. She is conscious, Dad said she didn't even have an IV placed when she was medi-vac'd - and she had some flu-like symptoms last week. Our kids are so fragile - the meds they take can be toxic at high levels, dehydration is devastating. It's all a delicate balancing act and one thing slips out of balance.....well, it needs to be corrected. Sierra needs a liitle fixin' - and I just know in my heart she'll be on her way home soon. Does it make it any easier on Mom & Dad.....hell no it doesn't. My heart breaks - we are very close as friends / family and we can't do anything. Jason and Stacy - I'm so sorry you are going through this. it never, ever gets easier.

I had wrote about Sid, who was on life support when we were there last for Shawn's biopsy. The day we flew home, his mom Peggy allowed me in to North ICU to see him before leaving. I just knew it would be my last time, and I sobbed out my good-bye's to him. He wasn't expected to live, and again...when I think there is no hope, I have been proven wrong. Sid began to turn around, not only is he still alive, but off the breathing machine (ventilator) and last I heard, was working on physical therapy!!!! I really can hardly believe it myself, Shawn has biopsy August 4, I just don't know what I will do when I see Sid - unless he's discharged and out partying like a rockstar or something!:)

I am still confined to bed for the most part. I was told by my orthopedic surgeon that the very most I can do is take a shower and get dressed. The rest of the time, I need to be comfortable....whether it's laying down, laying on my side, sitting up.....If I am in pain, I need to get out of pain. I have a ton of pillows on my fluffy bed. In about a week, I'll start moving around more, still no lifting more than a few pounds, no bending or twisting. My house is falling apart, my kids are a mess (but fed thanks to Lisa and Ruth!!) but I am taking advantage of it, when I start physical therapy, it will be a whole new story!! : (

update on Shawn: Shawn is amazing, strong and funny and we see his anxiety lessening. His frustration with the dyslexia, the learning difficulties that remain from not only the problems before his transplant (severe dyslexia as well as lingering results from a number of strokes after open heart surgeries as a baby). Reading makes no sense to Shawn. Telling Shawn to read this post for example would be like asking a 5 year old to perform brain surgery.....it makes zero sense to him. However.....with the teachers of Alpenglow....who were consistent, unconventional, persistent and patient....in his 5th grade school year he advanced 3 levels! George is more concerned about his education - saddened that after all he's been through.....the fact that he is alive is a miracle unto itself, and here's yet ANOTHER hurdle. We just want some things to go easy - and on that note...I will say that Shawn no longer needs physical therapy. He had a number of strokes as a baby, then two massive strokes after his heart transplant. We were referred to Tim Landon from the speech teacher, Lisa Miller who worked miracles with Shawn when he was very young. ((as a toddler, because of the strokes, episodes his brain went without oxygen, Shawn had a speech problem called dyspraxia...meaning he spoke in vowels only A E I O U - imagine that....Lisa taught him sign language to communicate, but he was so strong willed, he made up his own sign language!!! our daughter, Sam could really understand and would often interperet) back to my story....Lisa recommended Tim, but I wasn't hopeful, although Shawn had been in physical therapy most of his life, he always hated it. From day one, he loved every minute of his time with Tim. Shawn was having a blast...he had no ides Tim was tricking him into working. Now Shawn hasn't been able to do stairs foot over foot - ever. He favored one side, his depth perception made it even harder (all damage from the strokes and complications from after his heart transplant). I'll never forget in the middle of a contest / combat obstacle course with Tim and I saw Shawn run - normally - up & down the stairs, it was as if I lost my breath, I was so shocked!!. A great day. So he is playing outside everyday, strong and healthy for the first time in his life, and everyday he is better. I have been given a front row seat to witness miracle after miracle, it's an experience that is impossible to put into words.

Well...I need to go shift to keep my new titanium, fused spine happy. Physically this will be a long, difficult recovery...but psychologically I am already much better. Chronic, non-stop, pain is a monster - it consumed my life. Taking care of the bare minimum was too much for me, my home, my kids, my marriage suffered as well. Attempting to manage and deal with the pain I was in caused me to alienate people - everyone, including George because no one could understand how bad I hurt. My biggest fear was that I would never again be ok. At my first post-op appointment, my surgeon said that my L4 L5 level was completely unstable, he said as early as 10 years ago, I would be wheelchair bound for the rest of my life, and I am 38 !!! however, the surgery went very well and the rest of my spine looks great!! So now I need to heal correctly with all my new "hardware" lots of titanium screws and plates. With that being said, I definitely need to take better care of myself!! Last summer I lost 48 pounds and I was doing so good, and felt so good, with my back broken - you know they came back and found me :(:(:( there will be lots of changes in my life....but I am ECSTATIC that I have the chance to get better :) have a mentioned lately how much I love doctors and the science of medicine!!

Love & hugs from my big bed xoxo

Holy cow - I just tried to update from my iPhone and there was just a mess of a bunch of little posts all over the place OY!!! What a mess,
... So what I was trying to say via my phone through text messages was that I can't update much now, I am unable to sit up....I haven't been able to sit up to use my laptop, so my communicating has been through my iPhone or G's iPad....but those tiny keypads often drive me CRAZY...in order to type up a lot I need a keyboard that isn't ideal for ferret paws!!

Now if you are wondering why I am laying down ALL of the time, about 2 weeks ago I had my spine fused. When I get on my MacBook I'll tell you about my surgery, which I find fascinating - there's a lot of titanium and I am convinced that there is some kryptonite in there somewhere. I am flat on my back for 6 weeks - with shuffling to the bathroom to pee or shower as the only time I'm allowed up. I do need to shuffle -slowly -to Dr. Eule's office tomorrow for my first post op appointment. My recovery is going well, I was out of the hospital in 3 days, instead of the anticipated 7 :) I cannot twist, bend, lift anything, put my hands above my head etc etc for quite some time. I will start physical therapy (torture) at 3 months post-op, but I am determined!! I would like to get back to being myself and I know my kids would love to have me back it as well.

Our neighbor, Lisa* who is amazing* has fed our family....George works long hours in the summer - if it weren't for Lisa, the babies wouldn't be eating...and our very close friend, Ruth...who brought by a ton of food and homemade caramels -which were like eating a little bit of heaven sprinkled with unicorn dust - oh yes, my friends, they ARE that good.

The next day The kids tell me Lisa is out front mowing and making our lawn gorgeous. My mom drove in to buy the babies milk and groceries and pick up my pain meds.... Today she drove in to take Shawn to his appointment with Dr.Scott Wellmann for check up and echo. Shawn's heart looks awesome and he is doing wonderful. He had.a biopsy 3 weeks ago which was 1a (just a teeny bit of rejection), so our Shawn is incredible.

That's about it for now , all of you here in Alaska...go climb stuff, or catch a few fish for me :)

We all hope that you and yours are happy and healthy::)

Hugs and love from the master bedroom,,

"Strength does not come from physical capacity. It comes from an indomitable will" ~ Ghandi

Shawn and I are home from biopsy and 12 hour IVig infusion. Shawn's results are an awesome 1a, and yes, we would always love a ZERO....a 1a is perfect after the scare we had in late April.

Shawn did incredible. There wasn't a single problem or worry through the day of biopsy and infusion. We were able to see our friends, the Baderman's, who we lived with in the Ronald McDonald House in 2006. We didn't get a room at the Ronald Mcdonald House this trip, we missed seeing everyone there, but we knew this was going to be a very, quick trip.

When we flew in Sunday, we had plans to meet up with our friends, Alex and Andrea (Alex is post-heart transplant, now in college) for lunch on Monday, and learned that our friend, Sid was here for a check up as well. (We lived with Sid for a looong time in the Ronald McDonald House). Because of the pain I am in thanks to my back (long story) I have been grinding and clenching my teeth...I have been breaking my molars and learned that long flight, altitude, broken spine, broken molars are bad...very, very bad. We weren't able to meet up with all of them....which I now regret more than anything.

After lunch, Sid's doctors found on his labs that his magnesium was low, he had been having issues with low mag, even though he was taking supplements. (Shawn still takes 6 pills of magnesium a day). Sid was sent for an IV and an infusion of magnesium. When the infusion started, he had a seizure. The seizure was treated, however, Sid has been having some problems lately, so to be cautious, the team decided to keep him overnight for observation. He was up until midnight, talking on Facebook, IM'ing his friends. Around 2 am, he told his mom, Peggy that he felt sick, and knew he was about to vomit, after throwing up, Sid collapsed and went into cardiac arrest (coded). It took over 25 minutes to get a heart beat...he was then moved to another room, where he coded again. The first time I saw him, was about 3 hours after he coded the second time, while Shawn was in biopsy. No one knows why this happened, what caused it, etc. While Shawn was in the Short Stay Unit for the 12 hour IVig infusion, Sid underwent surgery to put him on ECMO, which is a heart / lung machine.

I was lucky enough to be able to go into see him in the North ICU (because Sid is now 19, he has been transitioned to Stanford) before Shawn and I flew home yesterday. At that time, the plan was to stop sedation to see when he will wake up. they will do a series of tests, including an EEG to look at brain activity, there is also serious concern that due to hemorrhaging internally, the ECMO may need to be stopped. Things are dire to say the very least. However, we have seen miracles happen. They do happen....and even when you think it is impossible....it's not. Today is a big day for our boy, Sid.

Now that we are home in Alaska with Shawn doing well, it is time to fix my back. I have to have my spine fused. I haven't been without pain for so long..I can't even imagine it. Chronic, non-stop pain changes you. It does. I am a tough broad, but this is indescribable. Every move I make, everything I do, now even breathing ~ BREATHING ~ is a challenge and will gasp for air, because I hold my breathe all the time from the pain. Without going on and on, complaining, etc. I will say that my big surgery is next Wednesday, and I need to get up and going for one of my two pre-op appointments today. This trip with Shawn, was just about impossible for me. But I grit my teeth (literally) and everything went well...other than being heart sick for our Sid. On one hand, I am very excited at the thought of fixing my back, on the other, I am scared of the recovery and the possibility that the surgery may not work. I hate to think what will happen then.....we'll jump off that bridge then, I guess.

I am off to Orthopedic Physicians of Anchorage, Shawn and Haley are in Shawn's room giggling a little too much ~ pretty sure there is some craziness going on in there, Amanda is down in her room with her broken paw, G is at work, our Sam is with her friend, Alex in Georgia...it's a little cloudy outside here in Eagle River....but all in all, a beautiful day, considering that yesterday, I walked OUT of the ICU with my son, drove to the airport, and flew home. Bad back, huge bills, mind numbing pain, etc, etc. are a cake walk compared to waiting to hear if they wil turn your son's life support off in the next 12 hours.

If that doesn't guilt you into going out and having a good day or appreciating what you have...nothing will =)

SHAWN'S BIOPSY RESULTS ARE A BEAUTIFUL 1A!! I will post much more very soon, but wanted to share this good news!!

Love from California, will be home tomorrow =^)

Shawn's day went beautifully smooth. We have about 24 minutes of IVig, then the 15 minute flush, followed by post-IVig blood draw ((hoping they'll be able to draw the labs from his IV in his left hand that was started in the Cath lab for biopsy this morning)) if not, then one more blood draw and we are done.

I haven't heard anything new on Sid....almost scared to fund out if he survived the surgery to get him on ECMO (heart/lung machine) - but we all know, anything is possible and never give up hope.

For Shawn and I - we'll be heading back to the hotel soon.....you are amazing, Shawn!!

~♡~ this picture was taken in San Francisco, just days before Sid's heart transplant in July 2006. We loved this, because all three of them, Shawn, Sid and the Tin Man all needed hearts. ~♡~



We are here in the hospital for biopsy and IVig infusion. For those of you who want to know....the biopsy is looking for rejection on a cellular level by snaking a tiny tube down the femoral artery in his neck to snip a tiny piece from his heart to examine. On April 27th, Shawn had a biopsy result of 3a...there are only 4 levels of rejection. Shawn has also been battling Humoral (anti-body) rejection since transplant, which the IVig (intravenous immunoglobulins) battles and manages that rejection.

We flew down Sunday, had a quiet day on Monday, we aren't staying at the Ronald McDonald House, we are in the Comfort Inn in Redwood City, and today we were up bright and early to be here by 6:30. Shawn was in, done, and out of recovery, on the way to the Short Stay Unit to start the 12 hour infusion by 10 am!! it was a very quick, no complications biopsy. Dr. Feinstein (one of the doctors that does Shawn's biopsies) said his numbers and pressures in his heart look good. not just "good" for Shawn (in the past, during his bouts of rejection, especially right after transplant, those numbers were so bad, they stopped telling me the number, they'd just say, "high") but those numbers were all good and normal.

Shawn is now sleeping, he is given pre-meds to combat some of the nasty side effects that come with the IVig (for Shawn, he has headaches, nausea with barfing, migraines, hives, all over body aches, etc). This has to be one of the easiest, quickest biopsy/IVig combo day I can remember....maybe I shouldn't say that...it's only 2, we have a ways to go and I don't want to jinx it. =)

The sad news this morning....which is more than sad. A little background....Sidney (Sid) lived with his mom, Peggy in the RMH house with us in 2006. Sid was the first kid in the house that we knew very well to receive a heart. We were with his mom when she told him the doctors called!! We went through the whole process with them.
A few weeks ago, his mom called me to say that suddenly he wasn't feeling well and a check up revealed advanced coronary artery disease. The doctors were sure a 2nd heart transplant would be needed.
Yesterday, Sid was here for a check-up, even had lunch with our friends Andrea and Alex in the cafeteria...the doctors could see on labs that his magnesium was low, so he's sent for an IV and infusion of magnesium. After the infusion, he isn't feeling good, he's admitted to be watched, around 2 am, he awakes and needs to vomit, starts to seize, and then into cardiac arrest. Sid has coded twice this morning, he is on full life support....and needs a miracle.

It's so sad and so scary....our hearts are heavy for our man Sid today.

and my alarm is telling me Shawn is due for some meds...will post soon. Please keep Sid and Shawn in your thoughts ;)
love from Stanford♥

It is WAY too quiet around here!

For those of you who know our family, know that what I am about to say is a very, very big deal....
Shawn went out to his Grandparents house yesterday and stayed the night. He and Haley had been planning this overnight adventure for weeks, and I don't think my parents knew that this planning was even going on. Yesterday, I knew something was up because little Haley came down to get the phone, then she and Shawn, whispering and giggling, ran to his room and shut the door. After getting their MoMa on the phone, they were beaming with victory, then convinced Amanda to drive them out to Wasilla. This is the first time in 5 years that Shawn has been away from me for the night, aside from his trips to Stanford / Palo Alto that he took with his dad for biopsies. The beauty of this, aside from the fact that Shawn and Haley are deliriously happy (my parents have 80 acres, waaay up Knik-Goosebay, NO neighbors, their own lake, lots of motorized toys) is that this is a "normal' thing for an almost 12 year old boy to be doing. Shawn continues to do more and more "normal" things....it's a good thing!! =)

We leave on Sunday for CA and biopsy, IVig infusion and checkup so I need to get on it and reserve our rental car. Happy Sunday!