Mason, my HLHS (Hypolpastic left heart syndrome) postX (transplant) miracle son with complete LPVS (left pulmonary vein stenosis) has taught me a lot about the CHD (congenital heart disease) world and far beyond. He has never been a "text" book HLHS kiddo. He certainly beats his own drum and walks to his own agenda, but his amazingly strong fighting spirit has taught me the most about this experience.
So on to the most recent medical acronyms......
PARVO: Mason's blood work the week after Christmas showed he was positive for the Parvovirus. More commonly in kids known as Fifth disease or "slapped cheek" disease. It's symptoms usually are sore throat, runny nose, fevers, and red cheeks. BUT, in an immune compromised kiddo like Mason it can cause anemia.....where the body's production of oxygen- carrying red blood cells (RBC's) is slowed or even stopped. So the belief is that PARVO is what caused Mason's dangerously low level of RBC's before Christmas, and stopped the production of new RBC's for some time as well. The blood transfusion brought up his RBC's to a healthy level and kicked started production of new RBC's. But......did it solve the problem completely? We'll just have to wait and see.......
COOMBS: Mason also tested positive after Coombs blood work was done. The Coombs test looks for antibodies that have attached to the red blood cells, in Mason's case, after a blood transfusion. Even after a very careful blood typing cross-match is performed prior to a blood transfusion sometimes the match is not completely perfect and the body recognizes the new blood as being foreign. And of course because we are talking about Mason.....the match wasn't perfect this time and his body made antibodies to fight against the new blood. Possibly these antibodies can kill of his new red blood cells which would definitely defeat the whole purpose of his bloods transfusion! Also, an important factor is that now Mason will need even more specific cross matching done if he ever needs blood products again in the future to avoid these antibodies.....making the donor pool he can receive blood from pretty small.
ENT: Mason had an appointment with the Ear Nose Throat doctor on January 6th. This was to discuss if anything surgically could be done to help Mason's airway obstruction sleep apnea, such as the removal of tonsils and adenoids. As much as I wouldn't wish this surgery on anyone it truly would've been nice if this was the answer to help Mason sleep better. Although, Mason's tonsils and adenoids (adenoids were looked at by x-ray) did not look enlarged enough to be cause of the problem, so removing would be pointless. Bummer!! What does this mean? Mason will most likely need to sleep with a C-PAP or BI-PAP machine. For right now we are waiting to get back in to discuss his apnea with the sleep doctor. Our appointment is in March, but we are on the waiting list to see him sooner. Mason presently sleeps with an O2 blow-by mask near him, because I don't have it in me to force the cannula on him. He refuses it so I figure I'll just wait to see what the sleep doc says. This means though that I have to move the mask near him every time he moves in his sleep...... not a very convenient or sure way to help him sleep better (or me)!
CBC: Mason has had weekly blood draws to check his CBC's (complete blood count) mainly to watch if his body has been able to keep his RBC's up in the healthy normal range. Also the CBC is used to watch his WBC's (white blood cell count), because when he was switched to Imuran instead of Celcept for one of his anti rejection meds, that his how the docs monitor if his Imuran dose is correct by watching his amount of WBC's. Although that was very short lived......Mason was switched back to Celcept 10 days ago because it is supposed to be better for heart transplant rejection and the belief is that the PARVO caused his red bloods cells to plummet not the Celcept after all. So how are his RBC numbers???? For the first two weeks after transplant they were great, but now they are starting to drop again :-( and he's looking pale once more. Mason has also had CBC with retic counts done which checks to see if the body is making new blood cells. He is making WBC's within in the normal range and he is also making new RBC's, but below the normal range of how much his body should be producing.
HEMOC: Mason has an appointment with the doctors who study blood, Hematology/Oncology, this Tuesday (tomorrow). It was just supposed to be a follow up visit from Mason's overnight stay in the hospital for his blood transfusion when we met with them, but now it will probably be more than that because his RBC's are dropping again. This will most likely mean more blood work. Poor little Mason! Let me tell, he has become so brave and tough at his blood draws. When it it is a finger poke he doesn't even shed a tear or even when it is just a small amount of blood needed from a vein draw, but.......some of his blood draws lately have needed up to 20cc's of blood! That is a ton from a 23 lb little kiddo and usually that requires two vein pokes because the first vein runs dry before they get enough blood. Hopefully soon we can get to the bottom of Mason's low RBC's issue, help the problem, and back off on all these blood draws.
The good news is that through all the blood issues and sleep apnea......Mason's ECHO'S continue to show a healthy heart with great heart function. And for this we are forever grateful to Mason's special heart donor. His donor has chosen to remain anonymous, but this doesn't mean we don't thank them daily in our prayers for the great gift they gave our family and think about them all the time! Mason's next Cardiology-Transplant clinic is this Thursday where we hope to hear continued good news.
Besides all the medical "stuff" that fills up our time, our holidays were fun and eventful. We were even able to spy on Santa early Christmas morning as he dropped off our gifts, much to Mason's despair though! He is quite scared of the Jolly 'Ol Fellow. We also took Mason to church for the first time ever on Christmas. It seemed like a day we needed to be at church all together as a family (usually Mark and I trade off staying home with Mason), and since it was just an hour long that day it seemed like the perfect time to try. Mason was a good sport and sat in our laps the whole time with his mask on.
A few pictures from Christmas......
(Christmas Eve)
(We spyed on Santa delivering his gifts.)
(Ammon)
(Braiden)
(Preston)
(Kaitlin)
(Mason)
( Taking a family photo with everyone smiling.......
is almost impossible!!! But, at least we try!!! )
(Ammon)
(Braiden)
(Preston)
(Sammi and Kaitlin)
(If you are a newer follower of Mason's journey,
Sammi moved in with us in February 2010 to play
"Mom" while Mason and I lived at Stanford for his
heart transplant. She still lives with us and helps out
when she can. She is in nursing school and nanny's for
3 other families, but continues to be an "angel" in our
lives. We were glad she spent Christmas with us this
year. Thanks Brad and Lolly for letting us adopt her!!)
(Mason and Braiden)
(Ammon and Mason)
Thank you for continuing to follow and support Mason's journey. I will update soon after this weeks doctor's appointments. I promise to try and be more diligent in my blogging.....during the holidays a few curve balls were thrown my way to deter my blogging ability. My laptop was in the shop for 2 weeks and our washing machine flooded our house leaving lots of damage, but never the less life goes on and it's a NEW YEAR!
