Wednesday, May 26, 2010

A SMALL BUMP IN THE ROAD!

I apologize for the lack of blog updates. I must say not having my laptop is driving me crazy! But at least the Hospital has a few computers with internet access , so that is how I’m posting this today. Mason just had his weekly echo and clinic visit with the transplant team and we’ve stayed after to use the internet!

Monday, Mason also had blood draws here at the hospital. The good news that afternoon was that Mason’s Cyclosporine levels are finally where they need to be. For awhile he was too low and then way too high. Hopefully he can keep his level stable now. Too low is not effective enough for anti-rejection, but too high causes his blood pressure to sky rocket! It’s a very fine line! This is one of t he main reasons he has blood draws 2x a week. They also check his electrolyte levels (mainly because of the diuretics Mason is on to counteract water retention from the steroids he takes) and his white and red blood cell counts (CBC).

To back up a little……I need to follow up about Saturday’s post about Biopsy 4’s results. I spoke with Dr. Bernstein later that night. He had good and bad news about Mason’s results. The good: the rejection cells were found in one small portion of his heart (rather than in April his 3r severe rejection was found in several areas of Mason’s heart!!) meaning it has not spread through out his heart. Thank goodness! The bad: The grading system for rejection has recently changed (I’m not sure how recent), but Stanford’s transplant team follows the same grading system they’ve always followed. That being said Mason’s “1r” (or 1b) they are calling a “2a” after reading the lab report . So even though the rejection is concentrated only in a small area, the cells that are being affected are experiencing “moderate rejection”!

As perfect as I know Mason’s Angel Heart is for him, and even though this whole ‘Transplant and Leap of Faith” chapter of our journey has miraculously fallen into place…….Mason’s little body still continues to prove to us how smart it is! He continues to make naughty antibodies that want to reject his heart! Enough already, okay?!!! I know with the necessary medical help along with all our prayers Mason will conquer this bump in the road!! We all know the usual routine of most sweet little heart kiddos; ONE STEP FORWARD TWO STEPS BACK . But, all these step forward up and over the bumps WILL get us home to our family.

The plan to bring down the rejection is much better than I would have assumed. Since Mason is doing well : no fevers, no vomiting, etc… and acting normal , Dr.B decided he didn’t need to be hospitalized for IV steroid treatments. Yeah!! Instead, I just had to up Mason’s oral doses (well, by g-tube) of his steroid (Prednisone) and thus treat him at home for the rejection. That’s definitely some sunshine among the rain clouds!!! The bummer: the higher the doses of Prednisone the crankier my little miracle guy is in the middle of the night. What’s new??

Today’s echo (and last week's) were excellent! His new heart is haealthy and has very good function. We love this kind of good news!! So even at a 2 rejection his heart continues to show us how strong it is!!!

On Monday during labs DSA's(donor specific antigens) were taken too to see if his antibody levels are rebounding back up, but we do not have the results yet. Unless they come back significantly higher requiring a new plan of action we are done this week w/ appointments. Next week we will have 3 days here at the hospital. Tuesday- Biopsy 5 &blood draws, Wednesday- clinic & echo, Thursday- Cytogam & IVIg infusions, blood draws. We will enjoy our 'time off' the rest of the week and takes lots of walks in the rain or sunshine. Either way is better than being in the hospital!!!

I will update again when I can. Just remember, usually no news is good news!! And I will post pictures of our nice weekend with Daddy and big brother as soon as I get my laptop back.

4 comments:

The Simmons Family said...

Thank you for the update!! I'm sorry Mason has another bump in the road, but he'll get over it. He always does! We'll be praying that the increase in Prednisone is key and that Biopsy 5 will show another "0".

You are doing such a great job with everything! Enjoy your walks outdoors and know that you'll be HOME before you know it!

Derick said...

We are still faithfully praying for Mason and I made my bi-weekly phone calls. I think you are taking two steps forward and only one back.:) I'm so glad you get to get out these days. What medicine that must be for both of you to enjoy being outdoors. Keep the faith (you always do!)

Julia

madelyn said...

I'm sorry about the latest bump. I am praying for the rejection to come down and for Mason to fully accept his new perfect heart so you can get home again. Even though the backward steps seem to be outnumbering the forward, I pray you can find joy in the smallest of things each day. It is hard, I know, but I am praying for you all and asking God to carry you over the bumpy parts.

Stefenie said...

I am very sorry to hear of the latest speed bump. It seems like it is always something with these precious ones isn't. They have to fight so hard every day. At times is seems so unfair.

I know that God is listening to all of our many prayers for Mason and your family. He patiently took his time to find Mason the perfect heart and I know that He will deliver Mason through this trial as well. {{{HUG}}}