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!!!!

12 comments:

The Simmons Family said...

I've been thinking of you all a ton. I'm glad things went well and that you made it back safetly. I hope the transplant team will come up with some good options and that the antibody tests come back great!!

I just got a call from Stanford and Owen's antibodies are coming down on their own.. out of nowhere!! AMAZING!


I'm glad you have TIME... enjoy the holidays, stay healthy and we will continue to pray!!

cici said...

What a wonderful thoughtful gift that backpack was, love all the goodies to entertain little sweetheart.
I am so happy that you chose Stanford and I will continue praying for Mason and you, your family,and the caring Doctors of Stanford.
Have a wonderful Christmas!

At our Whitt's End said...

So glad that all is well and that you had good news. Alwyas know that you are in our thoughts and pryaers. So glad to hear that you were safe and that those at home were safe too.

Love much,

Tha Whittakers

Kimmie said...

we are so excited little mason had such a positive visit!! here's to a happy and healthy holiday season for all of you!!!!

Staci said...

Glad to hear the news! He is so beautiful. I am happy that the trip went smoothly and look forward to hearing what they think after this week. You are still in my prayers.

Staci (angel Brigder's mom)

Gourley said...

So glad to hear everything went as well as possible. We continue to pray for you and your family and pray that the doctors will have quickened minds and steady hands for the surgery.

Love you guys.

The Gourleys

Kyle and Alli said...

Hooray! That is truly wonderful news on all accounts...especially to have the gift of TIME! Now, time to sit back and take a little breather and enjoy yet another miracle this holiday season!

Michelle said...

I am so happy for you and Mason. This is great news! My heart aches for the things that Mason and your family have been through. Mason is always in our prayers and we always add his name to the prayer roll. I am so thankful for your posts. It has given me added strength. Also, thank you for an amazing play list on Mason's blog. We didn't bring Maddie's music that she likes to listen to at night (we didn't know that we would end up in the hospital..), so we have played Mason's music the entire time we have been here. It has been most appropriate for the situation. Thank you for your prayers for Maddie. We will continue to pray and cheer for Mason.

g-ma-vicki said...

It was great to hear you were able to have Dr. Rosenthal and others a Lucille Packard take Mason's case. It has been a giant blessing to have such a dedicated team. It looks like Mason and Owen may become heart buddies in the not to distant future. We feel such joy at the miracles that have come our way for Owen; but we also rejoice, pray, plead, and share the pain each family goes through. Andrea speaks of Mason often. I follow these blogs myself. Daily I am witnessing the oure POWER in prayer and in God's grace when a miracle occurs and even when one child passes far too soon in our estimation, we grieve but still have the Great Comforter come into our hearts that says these children have a purpose here and beyond- we become one step closer to having back that pure failth of a child we once possessed. We love you..have a lovely Christmas!

Jeff said...

Summer, reading about your stay at Stanford gave me the goosebumps. I'm warm all over. I am so grateful for our time at Lucile Packard, and I will remember those sunny days with tender feelings forever. We absolutely loved Palo Alto as well. So glad to hear that your first visit was productive. Can't wait to hear further updates. God bless.

Anonymous said...
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Sariah,Chief Editor said...

Hi,

Jen Flake gave my sister your info. and thought we may want to "meet". I have a little guy with Tetrology of Fallot and Pulmonary Atresia. Conner has Digeorge syndrome and heart defects are common. I must have just missed you, we left Stanford on the 1st. If you guys decide to go let me know, I would love to hook you up with some people. We know Stanford all to well after spending 4 months last year there at various times. Mason is a little doll and I can tell he is a special little spirit. These guys are fighters! My e-mail is sariahjean@comcast.net and my blog is finchouse.blogspot.com. I also have a site with HLHS.

Let me know,

Sariah :)