Monday, March 28, 2011

Jr Pilot Award

Yes we made it home safely Friday night. I am very sorry for not updating sooner, coming home to our busy family found me with no time over the weekend to sit down at the computer.

While at the airport waiting to board our flight home I spoke with Stanford's transplant team over the phone. It was refreshing to hear good news. Mason's biopsy showed NO AMR or antibody mediated rejection. Which was surprising, because usually that is the type of rejection he's been more inclined to have in the past. Poor kid having gone into his transplant with a history of high percentages of antibodies will probably have this type of rejection pop up every once in awhile forever, but not this time! yeah!

The docs' plan of action for Mason to conquer this 1A rejection is as follows: Since there was noAMR he can come down slightly (and I mean ever so slightly) on his steroids, but not start a taper to come off until after a zero biopsy. The next one will be in June at Primary's. Because, he does have CMR or cellular mediated rejection he will go up a little on his Cyclospirine (anti rejection med -the one that makes him a hairy little teddy bear). The only true bummer about that is more blood draws. This is the med that you only know if he's getting the right dose by checking the level in his blood. After the blood tests come out a few times in a row at the correct level, then blood draws can start to spread further apart. We were finally at that point and had gone a whole 4 weeks without a blood draw before we got to Stanford. Hopefully we can get back to that again soon.

What was the "speed bump" in the cath lab? Mason's Femoral Arteries are occluded (closed off). Sometimes this happens to little heart kiddos like Mason from having so many caths. Why is this a problem? There are only two places which the catheter can be inserted and then threaded up to the heart, either through the femoral artery in the groin area or through the right radial or brachial artery (hand or arm). But, the hand or arm are not used in children because those arteries are too small. Without access through Mason's femoral arteries an angiogram cannot be performed. An angiogram is when dye (contrast) is injected through the catheter and followed on x-ray. This is the best way to make sure the coronary arteries are working well with no blockage and to check the blood flow in the pulmonary arteries and veins. So, Mason was not able to have this part of the cath. Dr. Peng (Cath Dr.) was able to insert a catheter (bioptome) into his femoral vein to read the pressures in the right side of his heart and to perform the biopsy. (Biopsies are performed by accessing either there or through the the jugular vein in the neck.)

Although Dr. Peng gathered enough information to check for rejection and to make sure Mason's right side of his heart is not being over worked (which could happen from being basically one-lunged), Mason still needs a way to have his coronary arteries checked. Coronary artery disease can be common among transplant patients especially those born with a congenital heart disease. Mason's transplant doctors from Stanford- Dr. Chin and Berstein, are discussing with his transplant doctors at Primary Children's- Dr.'s, Everett, Molina, and Tani different methods to now check on Mason's coronary arteries. Like I said, a speed bump.

Besides the disappointment of not getting full results of the Mason's heart cath, Mason's poor little groins were "beat up" during the cath. They attempted several times in each side to insert the catheter into his femoral arteries, with nothing to show but lots and lots of bruising. With all the many times Mason has been accessed through his groin area this was the first time he acted like he was in a lot of pain after the procedure (and even days after he's still telling me "ouch"). This was one of those 'Mommy Tears' moments that I ask myself, "is this really fair to put him through?". Then I take a tearful breath and tell myself "I know he'll let me know when he's had enough!"

I've decided after this trip, Mason should be given the "The Best Jr Pilot" award if there were such a thing. He was so well behaved on our flight to Stanford and on our flight home. Most people that sit near a toddler are worried that they are in for a loud non relaxing flight. But, Mason shocked everyone around us. On both flights he spent the first 10 minutes helping me wipe down our seats etc with Lysol wipes , then just looking out the window and asking me questions. After that, he put his blanket on my lap, laid his head down, said "night night", and slept until it was time to get off! Several people commented "oh what a good little boy." I said, "thank you", and then said to myself, "I guess flying on a plane doesn't scare him because he's been through so much worse!!" It's just too bad he doesn't sleep like that at home!

Some of our blog followers have asked me what I do to protect Mason from all the germs on the airplane still he is still quite immune-suppressed. If he'll leave a mask on, then that is a bonus lately. My first trick (which makes sense to me at least) is to either board first and sit in the very back, or board last and sit in the very front. That way all the people don't have to walk past us. Next of course, wipe off everything around you with Lysol or Clorox wipes and keep your hand sanitizer close by at all times. Other than that, say a prayer!

Here is Mason after his nap on the way to California:
I couldn't get a smile out of him. He was too sleepy!

Next on our agenda is IVIG at Primary's all day on Thursday, because our insurance wouldn't pay for Mason to have it done while we were at Stanford. (Don't even get me started about our insurance issues!!!) Thank you for all your continued prayers and love.

"It's the journey that matters not the finish line."


travis and shalee said...

oh yay! we are so glad to hear that you guys are home and safe!!! :) so glad to hear things are looking good! :)

madelyn said...

Wiping a little neosporin (or vaseline) just inside the nose is what we use to help protect Ava. We use a swab to get it all the way around in there and pray it helps.

Ava has occluded femoral arteries from repeat caths - it does make things more difficult! Praying for the bruising and pain to subside. I know that just breaks your heart on the 'one more thing' list.

Praying for no rejection and toleration of the meds. This CHD journey is such a roller coaster sometimes! I pray for you to have abundant blessings and peace in each day.

Kyle and Alli said...

Wow. That was a lot of information to take in! I am learning a lot in reading Mason's experience. Grant has one occluded femoral artery (and on the other side, his IVC actually loops itself which creates all kinds of problems!), so I can relate to the after cath pain and fears of how to proceed with future angiograms! I hope that this 1A rejection resolves with the new medications! What a blessing to have such a great traveler. I don't know how you do it Summer. You are amazing!

Melanie said...

Wow. What a wonderful little guy. I shed tears for you all the time. PLEASE let me know what we can do to help a whole street away... including rides to/from school, the church building... =)


What a tough little guy! Thanks for the update! You are amazing.

Rachel said...

So I am a complete stranger (I am Jamie Hofheins sister-in-law). I couldn't sit back and not comment. I am in awe of what an amazing mother you are. I can't imagine what you have been through. My son had a rough beginning at life and I have felt only the slightest of what you must feel. Mason is truly an angel and has and will touch me forever. You, on the other hand, are my hero. I will pray for you and your boy everyday. I pray that the lord will ease your mind. I can't imagine how taxing. I know you guys can conquer this. Mason will be forever grateful for his mommy. What an amazing story. Thank you for sharing.