Sunday, June 7, 2009

Trying to Stay Positive......


(His PJ's say "Heart Breaker".....very appropriate!)




I finally received a call from Cardiology with a date for Mason's next appointment and ECHO. It will be this Friday June 12th. The scheduler said she apologized for the wait but they had to get permission from Dr. Sarrel to rearrange appointments and squeeze him in. So it will be 5 weeks from his last ECHO instead of 4 like we had planned, but she was actually booked until end of July!!


Then the scheduler said "Dr. Saarel would like me to go ahead and schedule in 4 more weeks to meet with Dr. Everrett" ( she is the heart failure/ transplant specialist). My heart dropped!!! She said Dr. Everrett was booked until September so she would have to get special permission from her as well to rearrange appointments. I remained rather calm until she called back within 10 minutes and had made our appointment on July 15th. Okay, so what would you think?...it took 2 1/2 weeks to get our June appointment......and then so quickly things were worked out for July!!! They must just be a bit concerned??!!




I am trying to think Dr. Saarel and Dr. Everrett are just trying to be ahead of the game but, honestly its hard not to think that they have lost hope that his meds he has been taking will lead us to seeing improved heart function at this next
ECHO :(





What do I think? Mason doesn't seem to be improving. He still seems exhausted a lot (but still won't stay asleep very long)and his coloring to me doesn't look very good even on the O2. People tell me he looks good but, to myself I say "not really". Yes it makes me sad!!!




Also, this week he has had a cough and some tummy bug! He has thrown up more that he ever has (as well as 'blowing out' his diaper a lot more than usual). So there goes for gaining weight this week! I didn't even take him into to be weighed. I figured why bother myself with bad news. At least he didn't get dehydrated because he could still keep down breast milk most of the time. There's a bonus for still nursing I guess.




For now if you will join our family in praying for our little Miracle Mason. We are praying for a 'good news ECHO' and if that doesn't happen.... then,that we will be blessed with peace and a knowledge of what is the best path for our sweet baby at this time.

10 comments:

Lolly Sneed said...

Summer, you are, as always in our prayers. We love you and that sweet baby.

Rachel Lund said...

Summer,

Thanks for the updates...when it is obviously such a hard thing to write about! We will be praying for your family and little Mason. Your strength is an inspiration to everyone!

ryan. heather. macie. millie. said...

You are always in our prayers as well. Try to think positive and we hope and pray that the echo will be good news. :)

p.s. i still need to come to your house one of these days and have a hair day! :)

Deb said...

Summer-

Your family is in my prayers. Heavenly Father has a special plan for this wonderful little baby boy. What a cutie he is. You are amazing and juggling so many things, I am praying for your strength. Remember you are in the hands of great doctors.

The Simmons Family said...

I haven't checked your blog because I didn't see any updates in my blog reader... bummer. I missed a bunch!!!

First of all.. congrats on 18 months Mason.. you are ADORABLE!

I have had the G=Tube debate from the beginning. I couldn't breastfeed cause my boobs are challenged, anyway.. Owen refused the bottle. We have had the NG tube since day one and he doesn't touch it. He is still a nibbler and so we use his tube 100% of the time. The Gtube is in our near future and I am still up in the air about it.

I'm praying for the echo visit. It sounds ALL too familiar. Owen and Mason sound so similar in many ways. The oxygen, the weight issue (although since Owen is tube fed, he's got some chub). The development delays (butt scooting, no crawling or walking. The adorable blond hair and unbearable cuteness.

When we went to Stanford we saw the heart failure/transplant doctor. The bad news, Owen definelty will need a transplant as the Fontan is OUT of the picture. Since they specialize in heart failure, we were told, lets push off Transplant as long as possible. We are now up to 7cc of Captopril 3 times a day and they want him at 20cc's 3 x a day.. wowza. Sildenafil, Lasix, Digoxin, Aldactone and Asprin.

Owen has good days and bad. Tired, crabby, won't eat much, wants to cuddle and not play... then the next day he's playful, hungry. One day his oxygen is fine and he looks good to me. The next he'll be bluish and puffy. It's always up and down. We have the transplant hanging over us and we just wait for the news that it's time to proceed.

I am finally to a point where I have accepted it. I'm enjoying the time at home until he NEEDS that new heart. I'm thinking it's going to come around the time that the Glenn would need updated to the Fontan.. around 30lbs or sooner. He's at 23lbs right now.

We're praying for good news from the Dr.'s. If you get the news that the meds aren't working. Mason does need to go forward with transplant at some point. It's not a terrible journey, just a differnet one! :)

Mr. Mason... you are so sweet. We hope to meet you someday soon. Owen and you would have fun together. Pulling tubes and butt scooting all over!

Andrea

Cassie and Chad said...

Oh my heck Summer, our prayers are with you. What a strong mother and supporter you are. You are such a great example to me.

Anonymous said...

The power of prayer will solve all worries. One day at time, one step at a time until Masons heart is healed or replaced.
God bless you all

Kyle and Alli said...

Oh dear...hopefully they are just trying to stay ahead of the game. We will be at Primary's on Friday as well! We have appointments all afternoon...when will you be there? Maybe we can meet up and I can give you a much needed hug! And I LOVE the PJ's! Grant is almost big enough to wear his and I can't wait! :)

Stephanie said...

Count us in on the prayers. I'm so sorry for the scary stress.

Marcae said...

Summer,
We think about your family and sweet little Mason all the time. I'm sorry that things have been hard. We will definitely be praying for Mason (and what a handsome little boy he is).