"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 =)
Friday, June 25, 2010
Thursday, June 24, 2010
Tuesday, June 22, 2010
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♥
Sunday, June 13, 2010
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!
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!
Saturday, June 12, 2010
Look Mom, I'm Blogging!!
I have been saying for some time that I wanted to start a blog because TheStatus.com, the patient page that I updated often while waiting, during and after Shawn's heart transplant, is impossible since it "upgraded". Upgraded?? please!! I wasn't able to log on ever!! SO....I finally did it, and here I am writing about the every day doings of our family once again, and truth be told!! I missed doing it. I would see or hear something funny and I'd think, "oh, I have to remember to write about that!" because that's what I did for years!! I am happy to be back to 'documenting' our journey.
First of all, I will say that Shawn is doing very well, however, he scared the snot out of us in April when a routine biopsy showed rejection at a cellular level at a 3a ~ there are 4 levels of rejection. Luckily, a few days of intravenous medications and a second biopsy 2 weeks later showed results of 1a (we'll take it!!) but we are watching him very, very closely. He had NO signs of rejection which is scary. We leave for CA next Sunday, which means we will miss Father's Day, so we'll have to celebrate on Saturday. We are worried about 2 different types of rejection. Rejection at a cellular level (which the biopsies, snipping a tiny piece of Shawn's new heart and examining it under a microscope look for) as well as the anti-body (humoral) rejection, which is seen in blood work and a test called DSA (donor sensitive antibody) which takes forever to get the results back from. We treat the antibody rejection with the 12 hour IVig infusions ~ he is back to having these infusions once a month. BUT you wouldn't know any of this if I didn't tell you because Shawn looks and is acting strong, healthy, funny, crazy, and amazing. He's gotten taller and thinned out now that his steroid dose is way, way down and his color is beautiful. It's like a miracle every single day watching my son, who is no longer sick and able to do simple every day things, like walk up and down stairs, things he wasn't able to do before, he is able to do without thinking about it. It. Is. Incredible.
Other big news, our oldest Amanda as well as the twins that we call our own, are high school graduates. And NO BABIES! Sadly, in this day and age, that's impressive. Amanda is working so much, 2 jobs, one at SunSplash tanning salon, the other at Jalapenos restaurant. She is a hard, hard worker and the best employee. We are so proud of her work ethic. The girl can't make her bed or pick up her dirty dishes to save her life, but she's one heck of a worker bee!!
Little Haley our baby, finished up 1st grade with flying colors, which I would hope so, considering she's already attended Stanford!! She will be attending 2nd grade at Alpenglow and is so hoping that her and her bestest friend in the whole wide world, Mariyah Becker will be in the same class.
Shawn finished 5 grade and will attend 6th grade at Alpenglow, but after that, we don't know what we are going to do. We are leaning towards Mirror Lake middle school, but I do have a year before really worrying about that.
My Sam, who is now a high schooler (9th grade), is in Indiana with her friend, Alex, whose family moved to the lower 48 and invited Sam to go with them to help Alex with the transistion (LUCKY) we miss her, but we are hoping they are having fun....what an experience, too.
well...it's a start. I will be back to posting about Shawn, our family and such...just like old times.
Good night =)
First of all, I will say that Shawn is doing very well, however, he scared the snot out of us in April when a routine biopsy showed rejection at a cellular level at a 3a ~ there are 4 levels of rejection. Luckily, a few days of intravenous medications and a second biopsy 2 weeks later showed results of 1a (we'll take it!!) but we are watching him very, very closely. He had NO signs of rejection which is scary. We leave for CA next Sunday, which means we will miss Father's Day, so we'll have to celebrate on Saturday. We are worried about 2 different types of rejection. Rejection at a cellular level (which the biopsies, snipping a tiny piece of Shawn's new heart and examining it under a microscope look for) as well as the anti-body (humoral) rejection, which is seen in blood work and a test called DSA (donor sensitive antibody) which takes forever to get the results back from. We treat the antibody rejection with the 12 hour IVig infusions ~ he is back to having these infusions once a month. BUT you wouldn't know any of this if I didn't tell you because Shawn looks and is acting strong, healthy, funny, crazy, and amazing. He's gotten taller and thinned out now that his steroid dose is way, way down and his color is beautiful. It's like a miracle every single day watching my son, who is no longer sick and able to do simple every day things, like walk up and down stairs, things he wasn't able to do before, he is able to do without thinking about it. It. Is. Incredible.
Other big news, our oldest Amanda as well as the twins that we call our own, are high school graduates. And NO BABIES! Sadly, in this day and age, that's impressive. Amanda is working so much, 2 jobs, one at SunSplash tanning salon, the other at Jalapenos restaurant. She is a hard, hard worker and the best employee. We are so proud of her work ethic. The girl can't make her bed or pick up her dirty dishes to save her life, but she's one heck of a worker bee!!
Little Haley our baby, finished up 1st grade with flying colors, which I would hope so, considering she's already attended Stanford!! She will be attending 2nd grade at Alpenglow and is so hoping that her and her bestest friend in the whole wide world, Mariyah Becker will be in the same class.
Shawn finished 5 grade and will attend 6th grade at Alpenglow, but after that, we don't know what we are going to do. We are leaning towards Mirror Lake middle school, but I do have a year before really worrying about that.
My Sam, who is now a high schooler (9th grade), is in Indiana with her friend, Alex, whose family moved to the lower 48 and invited Sam to go with them to help Alex with the transistion (LUCKY) we miss her, but we are hoping they are having fun....what an experience, too.
well...it's a start. I will be back to posting about Shawn, our family and such...just like old times.
Good night =)
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