Wednesday, February 24, 2010

One step forward, two steps back......


We are still at the Hospital (LPCH) this morning, which now for the next several months will be our 2nd "home away from home" (The Ronald McDonald House being the other). Even though I am very grateful for both of our new "homes" which are playing a huge role in helping us reach our goal (getting Mason a new heart), I must say I miss our "Hotel on the Hill" (Primary Children's). Palo Alto is beautiful, the people at both our "homes" here are wonderful, but Primary's was our comfort zone. We know so many people there and miss them all greatly!!! Thank you to so many of our friends there cheering us on right now!

(Mason taking a nap during his IVIG infusion treatment
yesterday. Thanks to the Benadryl they gave to him
to help avoid some of the side effects it can cause.)



One Step Forward.......
The neuro-skeletal doctor who specializes in muscular dystrophy came by to see Mason yesterday. After a very quick evaluation he assured us that Mason does not have muscular dystrophy and saw no reason to run any lab work etc. He then spoke with Mason's transplant team and crossed that off our check list to get Mason on the transplant list. Hooray! But we still have a few more items to check off.


Two Steps Back........
Since we all know Mason doesn't like to do anything the the easy way, we've had a couple of set backs!


First: (This doesn't really keep Mason off the list just in the hospital longer which he really doesn't like!!) Late monday night soon after they started the IVIG infusion he fell asleep (due to the benadryl they gave pre-IVIG). Then he began to have low blood pressure. This worried the nurse so she stopped the infusion and called the cardiologist 'resident' on call for the night. The decision was made to stop the infusion until morning when the whole cardiologist staff would be in the hospital in case there was a problem during his treatment. So that bumped us back 12 more hours. The plan was to do the 1st 12 hour infusion starting at 9 pm Monday, then a 12 hour break, starting the 2nd 12 hour infusion at 9 pm Tuesday. Then Wednesday late-morning after post-IVIG blood draws we would have been discharged. Now we will be here 'till Thursday sometime.



The biggest bummer is that the resident didn't make the best decision, cautious but not necessary! When the senior cardiologist 'fellow' came by early Tuesday morning he said that he would have kept the infusion going because he was tolerating the low blood pressure just fine. His heart rate and O2 saturations were good. The low blood pressure is probably his normal 'sleeping blood pressure' and had nothing to do with the IVIG treatment.



The second and biggest problem: Mason began coughing Monday during our walk over to the Hospital. Because his cough persisted after he was admitted the Dr's decided to isolate him from other kiddos and test him for viruses. I teased the nurses saying Mason was coughing just because he wanted a private room! I guess I shouldn't have teased because then in the morning I got 'pay back' with the test results. Mason has RSV! What? Are you kidding me? He doesn't even seem sick, except for a cough! Since Mason has been receiving Synagist shots again this year (RSV vaccine for kids with serious health concern) his symptoms are very mild. I learned yesterday that the Synagist doesn't prevent a child from getting RSV, but if they do get it the severity of the symptoms and the duration will be a lot less. I love Synagist!!



But even with less severe symptoms and no fever this causes us some problems...........
(1) Can he be listed? and
(2)How long is he contagious?


(1) As I was working on this post Dr. Rosenthal came by on rounds and explained that if his cough continues to get better (which it is already better since Monday) then he can still be listed in the next 2 days. But it is not recommended to put someone on by-pass (meaning perform a heart surgery) within 4-6 weeks of having RSV! He does still think it would be good to get Mason on the list, to get his clock ticking per say, but they would be VERY selective if he got a call with a donor match in the next 6 weeks. It would have to be a superior, absolutely perfect match for them to consider it for Mason during this time! Thats a bit of good and bad news altogether.



(2) If Mason is still contagious when he's discharged tomorrow we aren't aloud to stay at the Ronald McDonald House! Even though, that's probably where he got it (okay, it could have been the airplane too)! We do have some family in the area as well as friends through the church where we could go stay temporarily, but what a hassle! And why would they want RSV at their house either? And the R Mc House is in walking distance to everything we need.



I want to complain about these hold-ups and obstacles, but then I look back to September when we were given no hope for Mason and just months left with him here on earth. Then I feel bad for feeling discouraged and am just GRATEFUL for this new option we have been given to get our Miracle Mason a new heart!!! I'm trying really hard to continue looking at the big picture and have faith in Him, who's hands really are in charge of Mason's future. I know He will answer our prayers when the time is right.



21 comments:

Kristi Vega said...

Oh PLEASE! JUST what you guys needed! I had no clue the ramifications after having RSV were to high... 4-6 weeks?!

Still praying! You sound like you are in a good mindframe about it all. You are awesome!

The Simmons Family said...

Oh my goodness.. I am so sorry. RSV?? Really?? As if the IVIG treatments weren't bad enough. Hopefully you'll get discharged on time on Thursday and he won't be contagious (how do they determine that?) and can go back to the RMH. Ryan, at the RMH, told us that if anyone gets sick they won't let you stay there and they will provide you with a hotel room free of charge. Go with that option and tell them you don't have transportation so they can get you to a close hotel within walking distance or shuttle to and from the hospital. They are there to help you!! :)

Good luck and Mason looks like he's sleeping so peacefully!

Becca said...

Sorry about the RSV!!! There are so many people that have that right now. My cousins baby has a sister strain that is new this year and she also has been getting the Synagis. Ellie got hers this morning. Know that we are cheering for you guys.

Becca-Ellie's mom

Family Scads said...

Yikes about the RSV and IVIG setback. I hate setbacks! My little guy had RSV a couple of weeks ago (we are on lock down and I have not idea where he picks up bugs) and he also has had around 15 IVIG treatment, and we might be looking at a few more at the end of this week. Mason and him sound way too much alike! Lots of prayer for all of you!

Also, check out the Erika Kate foundation website: http://erikakate.org/
This is an amazing organization out of Iowa that reaches out and helps families like ours (the founder lost a child after her heart transplant). They gave us a huge financial support when Beckham was in the hospital. I'm sure they would help you out as well with housing, travel, so forth.

♥ Michele ♥ said...

Summer,

You are a TROOPER!! Keep up the good work and we will keep praying for your Miracle Mason and your family!

Momma Such said...

I found your blog on Paul Cardell's blog. Your story is so very touching and it brings tears to my eyes. I can only imagine how frustrated you must be right now. I have said a prayer for your sweet son and will continue to pray for Mason as well as the rest of your family. God bless you all.

cici said...

My prayers are yours every step of the way, whether backwards or forwards. I am adding you to the Prayer list at Church today along with little Gabriella. With Paul Cardall and his Army or prayer warriors praying, I just know good things are coming.
May God keep you stronger than ever before during this most difficult and trying time.
Big healing hugs for your Miracle Mason.

Stefenie said...

I found your blog through Paul Cardell's site. My son was born with CHD and we didn't learn of his diagnosis until he was two weeks old and in heart failure.

I will be adding your precious son to my many prayers!

Stef, Ryan, Wyatt and Logan
www.whenlifehandsyouabrokenheart.blogspot.com

Justin and Victoria Nelson said...

My friend forwarded your blog to me, and I HAD to write. I already see we have some mutual friends in the blog world, and I just wanted to say that Mason is absolutely PRECIOUS! Oh my goodness, I can hardly contain my squeals over his cuteness! Anyway, I just wanted to offer our support and friendship while you're there. Our daughter, Moriah, was in the CVICU at LPCH for about the whole year last year, and so we got to know the two homes really well too (hospital and rmh). We finally decided to move to the area to be close to LPCH from Southern California. There are hardly any words to express the gratitude we feel towards that CVICU. Please feel free to contact me at any time. If you need a ride anywhere, if you want groceries...anything. So many people helped us during this past year, it's the least we could do to pay it forward to an amazing family like yours.
Your precious Mason will be in my heart and prayers.
Love,
Victoria
www.momentswithmoriah.blogspot.com

Justin and Victoria Nelson said...

oops. my email is
nelsonvs5@hotmail.com

Jennifer said...

I hope this doesn't sound insensitive. But, I can't help but think that maybe the Lord let Mason get RSV so that he will get a more perfectly matched heart.

...praying for Mason...

Cardalls said...

also found you from Paul. Just wanted to let you know our prayers are with you and your sweet boy and your family you left behind. As a Mom I cannot imagine the heartache you felt at leaving those but knowing Mason needed you with him!

For Our Brave Heart, Sam said...

I came across your blog via another 'heart family' blog. My son has Tricuspid Atresia (HRHS). I want you to know we will be praying for you and sweet Mircle Mason. God bless you all!
Kathy Wimberly
www.lilwim.blogspot.com

Mindi D said...

O the roller coaster. I'm so sorry, my heart aches. I'm so sorry about rsv, Libbi has something that the doctor called
'a sister virus to rsv' not sure what it's called. Not fun for the little ones! I hope you are doing ok, let me know if you need ANYTHING! I know we've never even met, but seriously, i can do anything you need :) Even if it's just sending chocolates to cheer up mama! Good luck, i will stay tuned..

Kyle and Alli said...

Oh Summer. What a ride you are on. I am so sorry to hear about the new bout of RSV, but I am relieved to hear that Synagis is doing its job. Are your hospital accommodations bearable? I hear that Primary's is double booking kids, even in CSU, so hopefully you are at least enjoying some privacy! You have many many people praying for miracles and as we have seen how involved Heavenly Father is each step of Mason's journey, I have no doubt there is a real reason for the timeline right now. Our prayers are in full force with you as well as Mason's biggest fans at home!

Staci said...

I know how hard it is to adjust to all of these new faces, but soon, you will. I am so sorry for the RSV, but thank God (and your docs) for Synagist! This crummy old cold will not stop him. I keep you in my daily prayers and offer you any kind of support I can. You are amazing and so strong and your baby knows that.

Staci (angel Bridger's mom)

Marcae said...

Hang in there you guys. Good things come to those who wait :) We sure are praying for sweet Miracle Mason!!

ScottKarenandAustin said...

I am another one who found you through Paul Cardall...my son had his second heart surgery at LPCH (we followed his surgeon from UCSF to LPCH), and we stayed for a time at the Ronald McDonald House there. I know how hard it is to be away from home, but if you can't be at PCMC, that Standford is the next best thing. I will pray for you, and your family.

Once a heart mom, always a heart mom,
Karen

She Made Mention said...

I'm so glad that Paul added that post to his blog... that is wonderful. Prayers can give such comfort. I know that there are LOTS praying for you, including me {but you already knew that, right?}

Love you...

Jess

Amber said...

From one heart momma to another...praying sweet friend! Holding your little one close to my heart.
I was reading back through some posts and read that Mason only drinks water from his sippy cup...my 3 year old heart daughter will also ONLY drink water from her sippy. :0)
Remembering you during this time...

Caryn said...

Oh man. RSV? I didn't realize Synagist didn't prevent it! Braden did it for 2 winters and I totally assumed he was safe! Wow.

And I love that top photo- cause I totally stole a pair of hospital gowns from his stays there Those ones, and one of the pink elephant ones. Don't tell...They're destined for a shadow box now.

Praying for you!