We love you and wish you a wonderful holiday season full of magic and hope from our home to yours!
Wednesday, December 23, 2009
Christmas Wishes to All
Fevers?? No, not just in time for Christmas!
Yes, it's true Mason is not feeling well. Not exactly what we had asked Santa for this Christmas! He has had high fevers since early Saturday morning. It seems to be a bad virus because chest x-rays showed no pneumonia (thank goodness), and his ears and throat look fine. But 3 of my other kiddos have had strep the last 3 weeks. It started with Braiden on Thanksgiving, the next week to Kaitlin and the next week to Preston. So we started Mason on antibiotics just to be safe, although he's still fevering even today, and it's now Wednesday! Poor little guy has felt pretty yucky and just wants to be held. Good for me and the snuggle time, but bad for any kind of sleep and all the unfinished Christmas items I still need to check off my 'to do list'! Mason is a little trooper though and he'll pull through this.We had a cardiology check up with Dr. Everett on Monday. The good news is his heart and lungs sound fine and he also weighed in at a huge 22lbs and 8oz! He is getting quite chubby for one of my little babies. I think it's all in his cheeks!!! Thanks to his G-tube and 'Boost Kid's Essentials' (his 40 cal per oz formula) he is gaining the necessary weight for his heart transplant which we still remain hopeful for. The bummer was Dr. E decided he looked to wiped out from his fevers to do his echo. But they did call Stanford to get a copy of his echo from Dec 3rd. After comparing it to his October echo at Primary's it appears there wasn't any improvement in heart function this time, but at least his failure doesn't look worse either. I'll take that for now :-)
About Stanford......., Mason's case did not get presented to the Stanford Board of Heart Transplants yet!!! And now won't be presented until January 8th! Yikes! I was disappointed to get this news, and I'm sorry to those of you who've been waiting to hear as well. I just haven't had time to post this week. The main reason Dr, Rosenthall held off on presenting him is that the surgeon whom would most likely do Mason's transplant was out of town and was not at the meeting. Dr. R does plan to meet with the surgeon 1 on 1 the week after Christmas to discuss Mason with him before they present him.......so I'm not going to hold my breath, but I should hear how that goes sometime next week. Andrea, the nurse practitioner did say with all his (Dr.R's) research so far he is still very hopeful about Mason getting a new heart to his one healthy lung. This was good enough news for me to hold unto through the Holidays! Until I know more......just stay tuned in and I will post when I know more.
This picture was taken on Sunday. My kids were dressed up in their "Sunday before Christmas" outfits. The cute ties were a gift from one of our blog viewers, Peanut Posh. (They also sell darling hair flowers for girls. Kaitlin has one in above her ponytail, but you can't see it.) Even though Mason still hasn't ever gone to church with us (Mark and I take turns staying home) he got all dressed up too. Someday he will be healthy enough to go church with us!!MERRY CHRISTMAS!
Wednesday, December 16, 2009
A Little News From Stanford
I spoke with Stanford yesterday, but I don't have a lot of news.
Bummer!!
Dr. Rosenthal did not present Mason's case at Friday's meeting! Darn!
His nurse told me that she believes he still wants to gather a little more research and information before he presents his case and opens it up for discussion with the Stanford Board of Cardiac Transplants (including the surgeons who would perform the transplant). His nurse told me that Dr. R is highly respected by the other transplant physicians and the surgeons, who almost always agree with his opinion, so he wants to be well prepared to get them on board with Mason's case.
Mason's pulmonary vein stenosis that has developed over the last two years (not knowing exactly when it began.....unknown to our dr.'s and surgeons) in combination with his HLHS and heart failure is VERY RARE! Dr. R in his 15 years of experience specifically in pediatric heart failure has NEVER seen this before! Dr Shaddy from CHOP with 26 years of pediatric cardiac experience has only seen this twice. Although they both feel hopeful about doing a heart transplant to his one healthy lung, honestly......this does create many fears and worries for us!!!! I'm nervous, but anxious to hear Stanford's final offer for Mason.
My hope right now is to hear Stanford's views from their discussion before Christmas, because the wait is difficult for me!!! Dr. Rosenthal does plan to present him this Friday. Otherwise it would be at least 3 weeks, until after the holidays, that he would present Mason's case!
Here is a little news:
As for his antibody blood tests that were taken at Stanford, I do have the results.
The IgG test (similar to the one Primary did) showed Class I at 0% and Class II at 91% (which was slightly lower than the 98% found in his test at Primary's) What you really want is to have both classes below 50% for this test. The CIQ test that only Stanford performs shows how many of Mason's antibodies are against the most popular antigens ("bad guys" for a transplant patient, which increase risk of rejection) in the population. His class I are O% but his class II are 45%. In class II he has 2 very popular antibodies. This means 45% of the population have these certain antigens! This is not good, but could also be worse. This would decrease his donor pool.
What does Stanford do about results like Mason's?
They do IVIG treatments, with are IV infusions of Immonoglobulin which are meant to get rid of these bad antibodies (well, "bad" for a transplant patient). The infusions are a 1 day (about 10 hours) outpatient treatment done every 30 days until those %'s come down significantly. Usually they see great results after 1 or two treatments. If we do decide it is the best decision for Mason to list for a heart a Stanford he will need these treatments before he is listed. I'm waiting for Dr. R's answer to my question, "could Mason have these IVIG treatments at Stanford?" Hopefully the answer will be "yes"!
On a side note........
I have people ask me all the time, "How are you?" and usually my answer is, "I'm okay, just taking one day at time". Or sometimes if I don't want to open a discussion at all I say, "I'm good thanks and you?". Last week I had a friend e-mail me and said "she keeps updated on Mason via the blog, but how are you?" This time I gave a truly honest answer:
"As for me. How am I? It just depends on the day. Honestly since Sept 3rd, every day more with Mason I think I tend to slip into denial that he is so critical and that I need to appreciate and cherish EVERY MINUTE with him, because he looks SOOO GOOD I sometimes forget the prognosis he was given "that devastating day" in Sept!! But some days it hits me like a ton of bricks and I cry the whole day...spending every minute, that my other kids are at school, holding him, and letting all my housework pile up! Right now I'm holding onto HOPE & FAITH that there is A PLAN FOR MASON and that I will know which path to lead him down!"
Thank you for asking! All of you! Some days I feel like being honest about my emotions but other days it's too hard to talk about it. But thank you for your cares and concerns.
As Christmas is only 9 days a way, I'm trying very hard not to get caught up in "holiday stress", but to remember that "First Christmas Gift".....the loving gift of our Heavenly Father who give us his Son. That gift is an amazing example of a parent's love for all His children. I want to show and express that same love to my children and help them learn "The True Meaning of Christmas". I also want to cherish each minute of this holiday season with Mason and our family, for what this next year will bring is quite unknown to us!
"Happy Holidays" to you and your families!
Monday, December 14, 2009
For the love of Pictures
I have always loved to take pictures of our kids. I have also always loved to have lots of pictures of our kiddos and our family on display around our home. But with each additional child, picture taking (and then actually printing) seemed to get less and less. Although, with Mason I have tried to be much better, especially as of the last few months, with taking lots of pictures! After talking with parents of "Angels" who have passed on..... they all say "I wish I had more pictures", for that's what helps keep memories alive!! I still endure each day with the HOPE we will have ALL of our children with us here on earth for many more years (and at this time, especially our broken hearted Mason who continues to amaze us all with his strength to fight), but definitely want to be prepared with lots of pictures!
Here are some pictures from Mason's birthday:
We have a tradition in our home that "The Birthday Angel" comes
and decorates your room in the middle of the night. This is Mason
after he woke up surrounded by helium balloons. At first he was scared,
but soon decided it was a lot of fun to play with his b-day balloons.
Grandma stopped by around lunch time with a couple
of new toys for the birthday boy! Then at nap time
he had to lay down with them too.
Miracle Mason dressed and ready for his party.
All our kiddos gather around the Birthday Boy.
The Birthday Party:
We kept this year's celebration to just our little family
and our wonderful neighbors Brad & Lolly Sneed. (We
wanted to include them because they are moving soon
and we will miss them dearly! And they are of the
few people that Mason will hang out with happily!!!)
Mason's Cake (as you can tell I didn't graduate in cake decorating)
"Happy Birthday to you........."
Mason's thinking, "and you want me to do what with this?!!"
So.....his brothers decide to show him what to do by sticking
his hand in his own little cake. He was not too thrilled!!
"Okay, but wait Mason, you ate some last year when yo turned 1!"
But........
He'd rather play with his new toys as he's thinking
"can't you just put some cake through my g-tube please?"
Mason was content playing the rest of the night as long as
no one offered him any more cake or tried to take his
toys! (Mason's thoughts"Uh oh, Ammon give those back
to me, 'cuz when I can walk soon you will be very sorry!!"
Even though it was a small gathering, it was a great celebration for our family as we celebrated 2 years of miracles. For, our Mason has exceeded all medical expectations because of how sick he was at 3 days old!!
"We love you Mason and hope you had a fun birthday"......love, Dad, Mom, Kaitlin, Preston, Braiden, Ammon and all your extended family and friends who love you so dearly!!
Love, Hope, and Family Pictures
We have been showered with service, gifts, love, and support in abundance since Mason's birth, and even more so since this September when we were told by Mason's doctors and surgeons 'there was no more they could do for our sweet Mason'. Leaving us devastated we have been able to 'carry on' because we are surrounded by all of YOUR LOVE and LOVE from our Father Above. Although we since have been given some HOPE from other hospitals outside of Utah.... nothing is certain and we continue to live on a daily roller coaster. So many of you are so sensitive and caring to what we are going through, that at the end of the day when I am extremely exhausted I become overwhelmed with tears of gratitude. This is what gives me the HOPE and strength to keep going and to keeping fighting for my baby! Thank you!!
That being said..... a big THANK YOU goes to some very kind and loving extended family members who gave us the gift of family pictures. Wow! 2 professional family photo shoots in 6 months! Both were gifts and also the only family pictures we've had taken since Mason was born. We couldn't be more grateful! Mason has changed so much in the last 6 months (much chubbier and healthier) that we were so excited to receive this gift. These pictures below were taken by Gary Walker from Logan Utah. He and his assistant (his darling wife) did a fabulous job and we absolutely love them!
As for Stanford, I'm hoping to hear today about the decision for our Mason made at the 'Selective Cardiac Transplant Board' meeting held last Friday. I will post soon when I have any news.
Saturday, December 5, 2009
Trip to Stanford
I'm very happy to say Dec 3rd came and went with out any bad news this year! (Being that two years ago from Thursday Dec 3rd was the day Mason crashed at 3 days old, was sent by Life Flight to Primary Children's where he was diagnosed with his congenital heart disease HLHS.......and our life changed forever!!) The only flight we took this week was a Delta Flight to San Jose California. Besides my fear of germs making my Mason sick, a commercial flight is much better any day than a trip by Life Flight.
Thursday we spent the 2 year anniversary of Mason's diagnosis & 1st Life Flight....... at Lucille Packard Children's Hospital at Stanford. We were there ALL day from about 10 am to 6pm. The first good news is that Mason was as healthy 'as possible' this Dec 3rd and we were only at the hospital for a transplant evaluation, not because we had the sickest baby in the PICU! Through- out the day we met with most of Stanford's pediatric heart transplant team.... the social worker, a child pshycologist, the transplant nurse practitioners, and the heart failure/ transplant cardiologist Dr Rosenthall. Mason also had a complete echo cardiogram, a chest x-ray, and some blood tests.
Mason was such a trooper because it was a very long day!! By the last appointment with Dr R around 5pm he was sitting in his stroller (I put him there because he was DONE being poked and examined and to him his stroller is his 'safety zone')........ he crossed his arms on the little stroller tray, layed his head on his arms and fell asleep. I wished I had snapped a picture, but we were in quite a serious conversation with the doctor so it didn't even cross my mind at the time. In fact we were so tired by the end of the day we forgot to get a picture of us at Stanford at all. Next time I guess!
I wish I had some more definite answers or news from our day at Stanford to post about, but at least I feel that overall it was a positive trip and hopefully a step forward. At this point, Dr. Rosenthall feels that doing a heart transplant to a single lung (Mason's healthy right lung) would be the best option for Mason. He feels that the outcome would be almost as good as a child receiving a heart to two healthy lungs, with probably a lower tolerance to more than just mild-moderate exercise and a possible increase of infections in his left lung (due to the immune-suppressants and very minimal flow of blood and O2 in that lung).
He will present Mason's case to the whole board of Stanford's cardiac transplant doctors and surgeons, both adult and pediatric, next Friday. He wants this next week to research a little more about Masons pulmonary vein disease and also to get back the results from Mason's antibody (HLA and PRA) tests. Stanford runs a different antibody test than anywhere else. They have patented their own test which categorizes the antibodies, so then they know how to treat them......whether to cross-match and completely avoid donors with certain types of those antibodies (because they are the most dangerous for rejection) or to just treat with higher doses of immune-suppressants.
Dr. R also said that after seeing Mason's most recent echo (done yesterday there at Stanford) that we DO have some tome to decide our path for Mason. His heart function is still decreased from normal, still meaning failure, but that it is not as bad as he has seen in other kiddos who have been told to wait several months before listing for a heart and have done just fine. So that was also good news!!! Although his failure is not at the most horrible stage right now, the Fontan (or third stage of the original plan for HLHS babies) will NEVER be an option for Mason. A one lung Fontan is just not a viable medical option! And since Mason's little half a heart is working basically with just one lung we don't really know how long until his failure worsens (most likely due to work overload on his heart), but Dr. R doesn't feel it would be all of a sudden. We should slowly see a decline. TIME is GOOD!
Mark and I were very impressed by the staff there at Stanford. (Not that we still don't LOVE Primary's and think they are very AMAZING as well!) And if we were to decide Stanford was the path for Mason....we know he would be in very GOOD hands.
We also are truly grateful for all the little windows that have opened up for us and very kind gifts given to us as word got out we were headed to Stanford for this evaluation. We know the Lord's hand has been involved most definitely.
For one, as I mentioned in an early post, a dear friend paid for our flight with his flight miles (Thanks Tyler!)
A second, Mark's second cousin lives across the street from Stanford University and let us stay with her while we were there (And she picked us from the airport, returned us to the airport, fixed us dinners & breakfast, gave us a driving tour of the whole campus so we'd know where we were going, took us to and from our appointments, & sent Stanford t-shirts home with us for each of the kiddos! Normally she is extremely busy because she is a doctor, but amazingly she had vacation days this week so she was able to help us more than we had ever expected!! Thank you Heather!!)
Third, we have learned of many other friends, family, or church members who live there with whom we have mutual friends.....and would be there for us if we needed anything or for future trips to Stanford.
Fourth, we were gifted money to use for extra travel expenses (thank you, you know who you are!)
Fifth, the day before we left, a darling little backpack showed up on or doorstep. It had a tag that read, "Miracle Mason's Travel Pack" and on the other side it said this was a gift from "a secret HLHS buddy". I began to cry before I even opened it. It was filled to the brim and even outside pockets with toys, snacks, traveling supplies and even some new pj's for Mason. Thank you! Thank you! It came in very handy! Besides the fact that I was so consumed in getting ready to travel with a baby on O2, on G-tube feeds, and many medications etc.... I hadn't even thought of travel entertainment for Mason! And I had ordered a little backpack from home health care for Mason's feeding pump that didn't come in time, so I also used the new little pack while we were there to store his pump and do his feeds. It was absolutely perfect!
There are many, many more to thank like those who helped with our kids.....Susan, Torie, Grandma Marilyn, Grandma SanDee, Aunts Sharilyn and Michelle. We knew our kids were in great hands which made it much easier to take Mason to Stanford for his evaluation. Thank you to All Of You!!
I know we have some big decisions ahead for our sweet Mason and our family, but am grateful I KNOW I can pray to our Father Above to help guide us. I also feel very strongly that what is right we will KNOW and all the little details will fall into place! I love all of our 5 children more than than the world, more than can be put to words, so I want the best for them ALL. Please continue to pray with us for our Miracle Mason and also that we may now His pathway for our Mason.
Miracle Mason's Travel Pack left on our doorstep
from a secret HLHS buddy!
All the goodies that filled the "Travel Pack.
And here's Mason by about hour 6 of being at Lucille Packard
Children's Hospital for our all day evaluation. He was such
a sweet and patient little trooper that day! He also did
great on the plane flights. He slept most of the way.
I will post next week with any updates. And please celebrate with us for one of Mason's heart buddies, little Miss Madison, she received a new heart yesterday!!!!
Friday, December 4, 2009
Trip to Stanford
Mason was such a trooper because it was a very long day!! By the last appointment with Dr R around 5pm he was sitting in his stroller (I put him there because he was DONE being poked and examined and to him his stroller is his 'safety zone')........ he crossed his arms on the little stroller tray, layed his head on his arms and fell asleep. I wished I had snapped a picture, but we were in quite a serious conversation with the doctor so it didn't even cross my mind at the time. In fact we were so tired by the end of the day we forgot to get a picture of us at Stanford at all. Next time I guess!
I wish I had some more definite answers or news from our day at Stanford to post about, but at least I feel that overall it was a positive trip and hopefully a step forward. At this point, Dr. Rosenthall feels that doing a heart transplant to a single lung (Mason's healthy right lung) would be the best option for Mason. He feels that the outcome would be almost as good as a child receiving a heart to two healthy lungs, with probably a lower tolerance to more than just mild-moderate exercise and a possible increase of infections in his left lung (due to the immune-suppressants and very minimal flow of blood and O2 in that lung).
He will present Mason's case to the whole board of Stanford's cardiac transplant doctors and surgeons, both adult and pediatric, next Friday. He wants this next week to research a little more about Masons pulmonary vein disease and also to get back the results from Mason's antibody (HLA and PRA) tests. Stanford runs a different antibody test than anywhere else. They have patented their own test which categorizes the antibodies, so then they know how to treat them......whether to cross-match and completely avoid donors with certain types of those antibodies (because they are the most dangerous for rejection) or to just treat with higher doses of immune-suppressants.
Dr. R also said that after seeing Mason's most recent echo (done yesterday there at Stanford) that we DO have some tome to decide our path for Mason. His heart function is still decreased from normal, still meaning failure, but that it is not as bad as he has seen in other kiddos who have been told to wait several months before listing for a heart and have done just fine. So that was also good news!!! Although his failure is not at the most horrible stage right now, the Fontan (or third stage of the original plan for HLHS babies) will NEVER be an option for Mason. A one lung Fontan is just not a viable medical option! And since Mason's little half a heart is working basically with just one lung we don't really know how long until his failure worsens (most likely due to work overload on his heart), but Dr. R doesn't feel it would be all of a sudden. We should slowly see a decline. TIME is GOOD!
Mark and I were very impressed by the staff there at Stanford. (Not that we still don't LOVE Primary's and think they are very AMAZING as well!) And if we were to decide Stanford was the path for Mason....we know he would be in very GOOD hands.
We also are truly grateful for all the little windows that have opened up for us and very kind gifts given to us as word got out we were headed to Stanford for this evaluation. We know the Lord's hand has been involved most definitely.
For one, as I mentioned in an early post, a dear friend paid for our flight with his flight miles (Thanks Tyler!)
A second, Mark's second cousin lives across the street from Stanford University and let us stay with her while we were there (And she picked us from the airport, returned us to the airport, fixed us dinners & breakfast, gave us a driving tour of the whole campus so we'd know where we were going, took us to and from our appointments, & sent Stanford t-shirts home with us for each of the kiddos! Normally she is extremely busy because she is a doctor, but amazingly she had vacation days this week so she was able to help us more than we had ever expected!! Thank you Heather!!)
Third, we have learned of many other friends, family, or church members who live there with whom we have mutual friends.....and would be there for us if we needed anything or for future trips to Stanford.
Fourth, we were gifted money to use for extra travel expenses (thank you, you know who you are!)
Fifth, the day before we left, a darling little backpack showed up on or doorstep. It had a tag that read, "Miracle Mason's Travel Pack" and on the other side it said this was a gift from "a secret HLHS buddy". I began to cry before I even opened it. It was filled to the brim and even outside pockets with toys, snacks, traveling supplies and even some new pj's for Mason. Thank you! Thank you! It came in very handy! Besides the fact that I was so consumed in getting ready to travel with a baby on O2, on G-tube feeds, and many medications etc.... I hadn't even thought of travel entertainment for Mason! And I had ordered a little backpack from home health care for Mason's feeding pump that didn't come in time, so I also used the new little pack while we were there to store his pump and do his feeds. It was absolutely perfect!
There are many, many more to thank like those who helped with our kids.....Susan, Torie, Grandma Marilyn, Grandma SanDee, Aunts Sharilyn and Michelle. We knew our kids were in great hands which made it much easier to take Mason to Stanford for his evaluation. Thank you to All Of You!!
I know we have some big decisions ahead for our sweet Mason and our family, but am grateful I KNOW I can pray to our Father Above to help guide us. I also feel very strongly that what is right we will KNOW and all the little details will fall into place! I love all of our 5 children more than than the world, more than can be put to words, so I want the best for them ALL. Please continue to pray with us for our Miracle Mason and also that we may now His pathway for our Mason.
Miracle Mason's Travel Pack left on our doorstep
from a secret HLHS buddy!
All the goodies that filled the "Travel Pack.
And here's Mason by about hour 6 of being at Lucille Packard
Children's Hospital for our all day evaluation. He was such
a sweet and patient little trooper that day! He also did
great on the plane flights. He slept most of the way.
I will post next week with any updates. And please celebrate with us for one of Mason's heart buddies, little Miss Madison, she received a new heart yesterday!!!!
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