Friday, January 29, 2010

It's Time for an Update

(I started this on Wednesday morning, but then Blogger deleted part of it and I couldn't get back on blogger the rest of the day! What ever was wrong is fine now, so I'm attempting to re-write what was lost and finish the post. It is rather long, but I'm trying to remember all the information we have gathered to help us in our decision about Mason's transplant.)


My days seem to escape me w/out getting much accomplished lately!! Well, maybe nothing accomplished, but time spent well fulfilled in a different way.


Mason has been sick for at least 12 days now (he is finally on the mend back to his happy self). It started with a low grade fever and the pukes and then went into a high fever, horrible cough (meaning low oxygen sats -which always scare me), and runny nose. Then Ammon (4 3/4 years old) joined in on the fever, cough and congestion too, missing school most of last week. (I sent him back this Tuesday, because he seemed all better, only to get a call that he was acting sick, coughing w/ a runny nose, and needed to be picked up! Round 2?) So my time has been spent holding 2 of my most favorite little boys. It gets tricky because a lot of jealousy goes on between these to darling brothers!! The house is a ship wreck and no dinners prepared, but at least I know I have spent many hours rocking my 2 babies (these 2 will ALWAYS be my babies)! With moments, honestly, of thinking I'm going to go crazy, at the end of the day...... these 2 know their mommy loves them dearly (I hope!!!)


Mason and Ammon




Then add 3 more kiddos into the mix that need help w/ homework and more than anything.....Mom's attention also.......not a whole lot of preparing for Stanford has been accomplished!


NOW FOR THE UPDATE:

1) Mason had his cardiology monthly checkup last Wednesday January 20, while fevering, coughing, and puking. The first thing I said to Dr. Everett was "Mason really is healthy (to the best of his ability w/ a broken heart and 1 functioning lung, in fact better than most would imagine) and happy in between our visits here w/ you!" Because the last 3 visits to cardiology he has been sick.


We went ahead and did his ECHO even though he wasn't feeling well. I honestly wanted to make sure some of his symptoms weren't due to worse heart failure. The results: his heart function is still poor, but stable....not worse. Thank goodness!! His leaking tricuspid valve which has been moderate to severe for months now (almost a year) was only leaking mildly. I had just a moment of excitement from this good news, until Dr. E said this can just be temporary due to his fever! When you have a fever your blood pressure is naturally lower, which then will decrease a leaking valve.



He weighed in at 23 lbs 2 oz, even after puking for 5 days, so he must have been up over 24 lbs! His heart med doses were increased for his weight gain and to meet up to Stanford's dosage suggestions. Although, Dr. E. did suggest waiting to increase these until he is feeling better. This is so we can know if the higher doses are giving him side effects and not his temporary illness.



Overall, another monthly check-up to me means he has fought much further and continues to do much better than ever imagined last September! GO, FIGHT, WIN, MIRACLE MASON!



2) We met with some of Primary's transplant team that same day, Wednesday Jan 20. First we met with Dr. Everett and Dr. AK Kaza (the head surgeon over transplant at this time). And then separately with Dr. Kourestas (Mason's surgeon), because he was still doing rounds in the hospital when Dr. Kaza had to wrap our meeting up and head to the OR room for a scheduled surgery. We went seeking their opinions about Mason's offer from CHOP and Stanford, but ended up learning a little more along the way.


To sum things up briefly, we learned more that day about hospital politics and personality conflicts among the doctors than we had planned on or ever imagined. I'm not going to get into details, but needless to say, we heard more than just a simple opinion of Mason's case. Instead, we heard some very different opinions in the 2 meetings we had that day, as well as finding out there are some definite communication issues within their own team. One doctor said they knew nothing about these offers for transplant from Stanford or CHOP when the other said they had already updated this doctor for us. Just a bit frustrating!!! Don't get me wrong, I do lovePrimary's but I think we got put in the middle of a cross fire that day!!! We were there solely concerned about our baby's LIFE ,but were exposed to some definite tension between some of those we met w/!


They expressed to us the possible risks they could for see in Mason receiving a heart transplant due to his anatomy of a single working lung. The main being frequent infections in the left lung due to no blood flow. The other was the possible need for supplmented O2 long term post transplant. One doctor expressed the risks in a much more optimistic way than another and said "we really don't know if this will happen or not, it may not cause a problem at all, and probably won't". There is no research one way or the other. Then they expressed quite different opinions on each end of the spectrum about what his quality of life would be after transplant. I started to think "we asked for this meeting to help us, not to confuse us more!?" Although in the end, they did all agree that this is a much better option than a heart lung transplant.



When we raised the question of "why can't we do this here?"......this in when we saw some true conflicts in opinions! Wow, it was either black or white, "YES we should" or "NO we won't"! But, no matter what, if the whole team is not in a positive consensus to take on a certain case (especially a high risk and rare case like Mason's) then it won't happen. Nor would I want to push it. I want Mason under the direction of a transplant team that are all on the same page! In my heart though, I do wish Dr. Kouretas could do Mason's surgery , not only because we feel he is a brilliant surgeon, but also because he's already done Mason's 2 other open heart surgeries and he knows Mason's heart anatomy better than anyone else. (And..... we could stay in Utah! , but I think that hope has now been crushed!)



The best news we received was when I asked Dr. Kouretas' opinion on "will Stanford do just about anything that is high risk?". This has been a concern of ours (meaning is Mason going to be a guinea pig?). He having gone to medical school at Stanford and practicing cardio-thoracic surgery there for some time, before he came to Primary's, knows the cardiologists and surgeons at Stanford very well. He strongly feels they would only be taking on Mason's case if they felt very optimistic about a successful outcome. They are known for taking on high risk patients, but also have very high success rates.



It was a long day with many tears and strong emotions. We left the meetings more confused than when we went in. But, we were told several times by all the doctors and surgeons we saw that day (including some not mentioned above that we just ran into in the cardiology clinic) said that they would support and stand behind us with whatever decision we made for our sweet Mason.



3) Tuesday, January 26, we finally spoke with Dr. Rosenthall (heart failure cardiologist) from Stanford. Even though it took 2 weeks to line up the call, we were very glad to talk to him directly. He answered our questions very well with a lot of optimism, but at the same time was able to bluntly paint for us both sides of the picture. We were much less confused about what is best for Mason after our conversation with him. Some of our conversation was like this:
  • Us: "What was the overall feeling at the Transplant Board's SelectiveCommittee meeting when you presented Mason's case?"
  • Dr. R: "It was a very spirited meeting because Mason's case is rare, but there was at least a 90% vote that 'yes' a heart transplant to Mason's own 1 healthy lung was the best option for Mason. This included high optimism and hope for a positive outcome. With this though ,there is a necessity to do another chest CT w/ angio making sure his right PV's (pulmonary veins) are still nice and healthy."
  • Us: "What will his quality of life be after transplant?"
  • Dr. R: "If you don't mind I will be very blunt. It will either be very good or very bad!" Then he explained himself, "as long as Mason's vein disease on his left side does not spread to his right PV's we feel his quality of life will be excellent. "
  • Us: "What do you expect is his survival rate post transplant to be at 1 year, 3 year, 5 year, 10 year?"
  • Dr. R "We suspect without any pulmonary vein disease on the right side his survival rate should be the same as all our other heart transplant children, which are- 98% at 1 year, 95% at 3 year, 90% at 5 year and a 10 year number is hard to quote because transplants are so much better now than they were 10 years ago."
  • Us: "Is there a concern of frequent infections on his left lung especially being on immunosuppressants?"
  • Dr. R: "Yes, that will be a risk having no blood flow through his lung w/ a suppressed immune system, but we don't feel it will put him in the hospital every month with pneumonia, or hinder his quality of life."
  • Us: "Will Mason need to be on supplemental O2 even after he recovers from his transplant because of only having one functioning lung?"
  • Dr. R "One lung is sufficient to supply blood and O2 to the body, AS LONG AS his right pulmonary veins stay healthy. So he should not need supplemental O2 post recovery."
  • Us: "Since Mason will be listed at a 1B status, we are curious if you see kids there at Stanford receive hearts at 1B or not until they are sick enough to be admitted to the hospital and listed as 1A?" (Mason would be 1B because he is under weight which puts him in the 'failure to thrive' category. So this is 2nd priority on the waiting list. But 1A is first priority because they are so sick that they need to be in the hospital recieving IV meds to help their heart pump.)
  • Dr. R: "Yes we see children get hearts almost equally from 1A and 1B status."
  • Us: "Do you feel an urgency to get Mason listed right away as long as the chest CT shows positive results?"
  • Dr. R: "We would like to get Mason listed as soon as it is possible for your family to get him here. Mason has been on a stable plateau for several months now, which is great, but how much longer he will remain stable is really unknown. A transplant surgery and recovery go much smoother if we get the child while they are still in a 'window' of stability. Timing is very important. I would suggest less than a month."

We discussed a few more things, but I think the above were the most important issues that we covered. I will say he left us with a lot of HOPE that this is a wonderful option for Mason.



What are we thinking now? After doing our research or 'opinion seeking', praying and fasting, and listening to our hearts..........As parents to this very special little guy, we do truly feel Mason needs this transplant, that Stanford is the right place to do it, that Miracle Mason will have a much better quality of life than he has now, and more than anything that we will have offered him every viable opportunity to live. The rest we leave in the lord's hands, for we KNOW he has a plan for our Mason.



Have we worked out the details yet on how we will do it? No not yet, but we are in the process. The plan is that I will go to Stanford with Mason soon (I know that is vague, but we as a family still have a lot to talk about and figure out before I post more specifically about when!) Mason and I will live in the Ronald McDonald house which is a 10 minute walk to the Hospital. Mark and our other 4 children will stay here to work and go to school. Who will help w/ our kids? We have some ideas and plans in the making.....but nothing is certain yet.



For now, we appreciate all your prayers and concern. I know that it has helped comfort us during these most emotional and trying times. We will post with more details as the "How's" get worked out and everything falls into place! I am definitely living on HOPE & FAITH right now! THANK YOU for your SUPPORT!




As a side note:

***Just to add to the craziness at our house; Ammon was home all week again,Braiden was home yesterday and today w/ strep throat, and now I'm pretty sure I have strep too. Yikes! Talk about a house full of sickies! 'Tis the winter season here in Utah!***

11 comments:

Kyle and Alli said...

Wow! What a loaded week you all have had. I am sorry for all of the illness and I do hope you have great neighbors and friends who will step in with meals and child care help in the next few weeks/months! I am interested in all of the hospital politics that you were dealing with at Primary's. That had to be a frustrating conversation since you were talking to people who so desperately need to be on the same page!! Dr. Rosenthal seems like a great blessing right now. We know you have so many uncertainties ahead, but we are so thrilled that Mason will be in good hands at Stanford and we will hope for the absolute best for your other kiddos and Mark at home!

Rachel Lund said...

Oh Summer! We continue to pray for your family and Mason! Thanks for keeping us all updated--I know that takes a lot of energy and emotion to write it all down! Having grown up not too far from Stanford, I had two close friends who had to be cared for there often. I know it is a great hospital.

cici said...

I am so sorry about all the germies invading your home. Those are one thing kiddies are good at sharing ;(
I am so happy you are choosing Stanford, as I know it is the BEST!
I hope you will let us know when you are there and you are allowed visitors. I would love nothing more than meeting you and little Miracle boy.
I will continue to pray everyday, I promise.
{big hugs of healing}

Kimmie said...

summer
i realize it truly doesn't matter what we all think, what matters most is how you and your family feel. but at the same time it's nice to know others agree....i ABSOULTELY, 100% think you are doing the right thing, in all aspects! by going to stanford, to have Mason get the transplant, to go with mason, to have Mark stay here with the other kiddos, etc....i commend you for your faith and courage. so many of us HLHS mamma's are on your side and wish you and your family all the best during these crazy times ahead! i literally live 2 minutes from you and would love to help out in any way possible! feel free to ask me for anything at all!!!
kim (stefanie's friend)
taylor.kimmie@gmail.com

The Simmons Family said...

Summer... You are so amazing!! You will cherish the time at the Ronald McDonald House with Mason much more than you know now. I had just one week alone with Owen and those were some of the best moments we shared. It's so hard to leave the rest of your family and take a chance on Faith. Hopefully the time will go quickly and Mason's heart won't take long.

I just adore Dr Rosenthals' optimism! He is so intelligent and always makes us feel at ease.

Get better and good luck packing. The upcoming journey is going to be a blessed one!!

Shanna said...

Summer,

Thank you again for the update on Mason. I am so happy that you got an answer to your prayers about going to Stanford. I think that The spirit never leads us a stray! you guys are still in my prayers.

I'll keep looking at your blog for updates!!

Shanna

the timothy's said...

you forgot to mention one more thing....your hubby is gone too!!! :( you poor thing! you guys are in our thoughts and prayers! let us know if we can do anything for you guys!!! /travis and shalee

Jessica said...

Summer,
My little girl was born almost a year ago and diagnosed with HLHS. I have never met you or your family but I wanted to let you know that Mason and your family are in my prayers.

♥ Michele ♥ said...

Still thinking and praying for you and your family Summer. I'm glad we got to visit the other day. I will continue to check in on your blog for updates. GO MIRACLE MASON!!

Jennifer said...

Hope the icky sickness leaves your haouse FAST. We had it here...the whole family for a week and that drained me dry and I don't have a baby with Mason's needs to worry about. Like I always say...you are amazing.

Keri said...

So sorry it is this rough lately, Sum. Mason is in our prayers and mine.
I love you my dear friend.
K