Friday, August 28, 2009

Antibody Test and Pre-transplant Consultation

We had a very long day up at Primary's yesterday! Sweet little Mason was so exhausted he fell asleep in his high chair at dinner time when we got back home.

I'll start with the good news first......which is the kind of news I needed at this point in our journey with Miracle Mason. The results of his antibody test (or PRA- panel reactive antibodies) were great! His class I antibodies (these are the strongest type of antibodies which would cause his body to reject a new heart) came back at 0% !!! His class II antibodies came back at 98%, (being the very weak antibodies) and I was told the class II don't matter much. (I 'm not too clear on the class II, but when Dr. Everett said this is good news I'll believe her.) They will test his PRA levels every two weeks, because they can change. We will hope and pray they stay in the "good news" range!

With these antibody levels Mason can receive a heart transplant at Primary"s! Yay! Otherwise we'd have to take him else where, like to Stanford where they do extensive treatments to lower antibodies, and be away from our family. We are so happy about this!

On to the all day consultation and evaluation.....this isn't necessarily the bad news, it was just a lot of information to take in and swallow!! The truth of how tremendously expensive this transplant will be does create just a bit of financial worry!! But, how can you put a price tag on the value of out Mason's life?? That's why I say this isn't the bad news, just the reality. Just the heart transplant procedure alone will cost $300,000! And that does not include the hospital stay before and after, the surgeon's bill, the anesthesiologist's bill, or the pharmacy's bill! So the total could be between 1 and 2 million

Another topic presented was all the medication he will be on post-transplant. He will be on about 12 to 15 meds for the first 6 months and slowly wean off of several of them. The main 2 immunosuppresants he will be on for life. And for the first 6 months he can have very little contact outside of our home (or the hospital) because he will basically have no working immune system to fight of illnesses. All the immumosuppresants are to hopefully prevent rejection of his new heart. Talk about 24-7 care! Wait, more than he already is right now? Wow! Here's the other catch in our insurance...they don't offer the best pharmacy benefits (and pharmacy is not included in our yearly out of pocket either). So, even with insurance our out of pockets costs on all his medicines will be $1,600 - $ 1,800 A MONTH! ( And that's on top of our $800 monthly premium.) Did I already mention a fundraiser?!

My other concern is the wait. The average wait is 3-6 months once on the list, but in all reality it can be anywhere from 1 day to 1 year or more (if his little heart doesn't fail before.....I try not to think about that!) I also asked Dr. Everett what is the possibility of Mason waiting at home until a heart which matches is blood type and weight becomes available for him? She said it is possible, but she has never seen a child as young as him not get so sick while waiting for a heart that he has to be admitted to the hospital and be on IV heart meds until his heart comes! Ok, I hope Mason has another miracle waiting for him, because waiting for months in the hospital would be so tough on our family. For the week long stays we've had this year he would never let me out of his sight! And a week was hard enough on my other kiddos and Dad at home, but what about MONTHS?!

What's next? Mason will have his pre-transplant heart cath next Thursday Sept 3. This is a very invasive procedure which definitely concerns me , but it has to be done before he is listed for a heart. The last time he had one pre-Glenn (his 2nd surgery) he didn't recover very well and he ended up spending the night in the PICU, but normally you go home the same day. We will pray for a better recovery this time.

Usually after the cath , like the following week, Dr. Everett presents the child's case at two different meetings for full medical approval of listing him for a heart. The first is with the Utah Board of Heart Transplants (for adults and pediatrics) which includes all transplant Dr.'s, social workers, financial social workers, pharmacists etc. Then the 2nd is the "care conference" which includes the entire cardiothoracic team and cardiology team. One very important person at the care conference who needs to approve Mason's need for a transplant as well as agreeing that he is a good candidate is Dr. Kouretas, the heart surgeon who performed his other 2 open heart surgery. Because Dr. Everett will be out of town the entire following week she will present Mason's case this coming Tuesday and Wednesday right before his heart cath on Thursday. She is doing this in case the decision is made to list him right after his cath!

This means Mason could be LISTED for a NEW HEART as soon as THURSDAY or FRIDAY!!! This seems so unbelievable and amazingly surreal!

I've probably left out some information, but I think I covered most of the important details. My my mind is overloaded and tired. My heart is over flowing with emotions. My body feels like I'm in the middle of running an ultra-marathon. But most of all I am still at peace with making this step forward with our Miracle Mason! We are excited about the new and more fulfilling life a new heart can bring our sweet boy! Please pray with us that his medical teams will be inspired about what is best for Mason, that he will recover well from his heart cath, that Mason's heart will hold out while waiting (and even waiting at home would be optimal!!!), that our other children will feel loved and at peace during this trial, that his antibodies don't strengthen, and also that he will remain healthy, well... as healthy as a kiddo with only half of a heart and in failure can be (if he gets a fever, cough, runny nose, etc,,he will be taken off the list until better). Oh, and one more thing he needs to gain more weight!!!! (not to be listed but make him stronger)

Thank you, thank you for your prayerful help, your love and support, and all your care and concern. Together we can help our Miracle Mason continue to fight for his life!!

p.s. Mason weighed 17 lbs 8 oz on Thursday. That's a whole pound and a half since July 10th!

p.p.s.s. We along with some friends do have a couple fundraiser up our sleeves so we will keep you posted. Also at the top of the right column on this blog there is a donate button....ever penny will go towards Mason's medical even a few dollars will help. Thank you!!!s! We do have insurance which will pay 100% AFTER our $3,500 medical max out of pocket (per person in the family) per year is met. But there are 2 catches in our insurance policy.... 1)Mason has a 2.2 million $ life time cap and since he was born his bills have already reached almost 1.2 million

Thursday, August 20, 2009

Moving Forward

By the logo I have placed in today's post you have probably already figured out how Monday's ECHO and checkup went! With the results of Mason's ECHO showing absolutely no improvement, his liver being slightly more enlarged (another sign of heart failure), and my description of how poorly he is doing at home with eating, sleeping, energy level etc........ I didn't even need to tell Dr. Everett our desire to speed things up and do the Cath sooner. (Click on "Cath" to learn more about heart catheters.)

She told us she would like to have it done in the next couple of weeks to start the 'work up' to get him on the transplant list. She did ask me if this is for sure what we want to do.... and of course my answer was "YES". We are definitely for Mason getting a transplant! This is the only choice we have, to give him an opportunity to live longer. His failing heart will take his life eventually, in fact probably much sooner than I care to imagine! This all seems like a dream, a bad dream, you hope never becomes a reality for you or a loved one!

Then on Tuesday I got a call from the cath lab to schedule Mason's cath. When the lady on the phone said she was "calling to schedule Mason's pre-transplant catheter", my heart sank! It seems so surreal!

We scheduled it for September 3rd, the day he is already supposed to get the 'button' put in his tummy for his G-tube. So Dr. Everett asked the cath lab if Dr. O'gorman (the GI doc) could just come do the GI procedure in the cath lab while he is already under anesthesia....and it was ok'd by everyone involved. I'm so glad they will do that for us, because it saves me another trip up to Primary's.

On Wednesday, Michelle, Dr. Everett's N.P. called and said they would like to meet with us sometime before the cath to do the entire transplant consultation. This involves talking with a social worker, a transplant financial worker, a pharmacist, and the transplant team. Michelle told me that Dr. Everett said she wants to have everything ready in case the results of the cath show that he needs to be listed for a heart right away! Okay!!!!That took me by surprise!!!! Honestly, I was not quite ready for all this but am glad we are moving forward! Anyways we will meet with them next Thursday August 27th.

Mason had his blood drawn on Monday to check his antibody level. We will get the results next Monday or Tuesday. Please pray with us that his level is not too high to complicate getting him on the transplant list. He does have donor tissue on his aortic arch which was placed there to build it up during his Norwood(1st heart surgery) which can cause an increase in antibodies....but hopefully his level will still be within the "ok" range.

As I contemplate about Mason's transplant I am at peace knowing this is what he needs. I am also at peace knowing Mason is one of Heavenly Father's very special and choice children and that he has a plan especially for him. Although, I am still very scared and nervous for Mason's new medical path, I am trying very hard to focus on the blessing and miracle he has been everyday to our family. I love his cuddles, even when he wants them all night long, and I love when he smiles at me even when I know he doesn't feel good! I love my Miracle Mason more than words can express and I Pray he can get a new heart so we can cuddle for many more years to come.

PS....the good news of the day.....I should have put this at the top of the post...even with all his vomiting lately and not eating much orally......Mason put on another 7 oz! On Monday he weighed 17 lbs 2 oz! Yay for the G-tube!!!

Saturday, August 15, 2009

Sleepless Nights

As we all know Mason has never been a good sleeper. Lately it had gotten even worse! Is that really possible?! This week there has been at least three nights that he got a whole hour and a half of sleep!! The other nights his average has been 3 hours! Usually in the early mornings around 6:30 I can get him back to sleep, just in time for Preston to get up for football (yes, 3rd grade football at 7am 5 days a week! Crazy! least when school starts it will be in the evenings), and then if I try to lay my head back down for a little more sleep Ammon gets up and wants to wake up everyone else! I try to occupy him so little Mason can get some more sleep.

First of all...he NEEDS more sleep, second of'd think a little guy in HEART FAILURE would sleep all the time, third of all...I NEED more sleep too!! I know most days I feel exhausted, but some how (and I believe with angels holding me up) I manage just fine to go on with my day and take care of my busy family. Okay, so in all reality my kids sometimes tell me I'm grumpy, and I know I am, but I try really hard not to be. (Usually I'm grumpy according to them when no one wants to do their chores!! But I need their help!!) And my secret to survival this summer....I am lucky enough to have a sitter come most afternoons to help w/ my other kiddos so that Mason and I can take a nap. (Thank you to Lyndsi and Torie, and to family and friends who cover for them when needed!)

As for Mason, I have a few theories on why he may not sleep. 1) Scared to go to sleep because of bad memories of waking up in the hospital. 2) His arrhythmia medication which he took for his first 15 months of life caused restlessness, and now even though he's been off of it for almost 6 months he has really bad habits of thinking Mommy needs to hold him all night 3) Due to his heart failure he just really doesn't feel good. Poor little guy at night lately tosses and turns, while crying and breathing quite hard:( To me it seems like he's got a bad tummy ache! So it could be one, all, or, none of the above! I pray my sweet little Miracle Mason can get some better sleep for his health and my sanity.

As for me, even when I finally get Mason to sleep, lately I have trouble falling to sleep. My mind wanders to Mason's future. I sometimes see him go through all the stages of childhood my other kiddos have, think of sending him to kindergarten, see him running and playing with his siblings and friends, see his sweet personality shine upon those he meets throughout his school years.....then I tear up and wonder am I in denial? Is his mission in life shorter than I desire? What would I do without him here? Will he get a new heart in time to fulfill my hopes and dreams? I worry for my sweet baby!

Mason seems to be getting sicker rather than better this last month. He now refuses almost all foods and drinks! Thank goodness for the G-tube. He went from being a really good eater to not wanting anything. This makes me so sad because this is a true sign of heart failure! He will still breastfeed but tires out much sooner than he used to. He looks paler and some days is quite lethargic. It is very sad! We go for an echo, blood work to check his level of antibodies, and his last dose change of the carvedilol this coming Monday. We are going to talk Dr. Everett about doing the heart cath sooner than in another month, because Mark and I feel we don't have much time to waste. We feel he needs to get on the transplant list sooner than 3 more months!

Please pray for our Miracle Mason! It comforts me knowing so many wonderful people are praying for out broken-hearted baby. Thank you!