Monday, December 19, 2011

Never a dull moment......

Happy holidays everybody!!! I'm sure most of you are busy getting ready for that special day coming this Sunday. I just want to take a moment to update you on Mason and share a few pictures.

Where do I begin? I am not sure, because I have been taking too much time in between posts! And then I've been wasting time trying to fix Mason's birthday post that has a complete mind of its own. It adds in strange spacing after I hit "publish" every time. Well, on to the update........

December 1st Mason had transplant clinic at Primary's. His echo showed great heart function and his trucuspid leak remains mild to moderate. Which is absolutely wonderful, because during, and for a while after, his bad case of pneumonia in June his leak was severe. Mason also had gained a whole pound in one month! That's huge for him! (He's not like most of us who can just look at a piece of chocolate cake and gain a pound!)

...then came the not so good news of the day.....Mason's sleep study report. He has moderate to severe sleep apnea and restless leg syndrome. 

What does this mean? For the wiggly leg issue the answer is the easier of the two. The docs upped his iron intake quite significantly (which in turn may also help with his too many loose stool diapers.....and help his weight gain). Right now for the sleep apnea, Mason needs to be back on O2's at night. He is such a stubborn little stinker that he rips the cannula off about an hour into the night (do you blame him? He dealt with that long enough already!), so I turn the concentrator up 4x the amount he needs and use a "blow by" cannula near his face. That works well until he turns his head during his sleep! In January we will see an ENT to find out if removing his tonsils and adenoids will help with the apnea. (This is quite common for transplant patients, because of the meds they have been on, which can cause swelling, sometimes the tonsils and adenoids remain enlarged even after coming off of those meds.) My hope is that this is the answer, so that Mason does not have to be on a c-pap O2 machine at night. 

Mason has also had a cold for the last 3 weeks or so, but last week it got much worse. Tuesday he woke with his eyes glued shut with green gunk and his nasal drainage kept getting greener and greener.  I tried prescription eye drops for a couple days, but then Thursday night he spiked a fever of 103 and was very lethargic. Friday morning we made a visit to the pediatrician. No strep and no ear infection, but it appeared Mason had developed a nasty sinus infection. As much as I didn't want to put Mason on another antibiotic because of his poor little tummy issues, that's what we did. His cold had remained too long, only getting worse. It needed to be treated before it settled next in his lungs.

All the above I can handle just fine, but then Friday (Dec. 16) soon after returning home from the pediatrician, I received a call from the transplant team at Primary's with results from Thursday's routine blood draw (If we don't have a clinic visit I take Mason to Primary's Riverton offices and lab for his weekly blood draws. It's much closer!). It was RN Emily. First she asked how Mason was doing. I told her about the fever, the doctor's visit, and I also mentioned that I was going to call them today to tell them that Mason's BP has been lower than normal. She told me the lower BP makes sense with his lab results. His RBC (red blood cell count) is way too low. It has lowered significantly in the last week despite the high amount of iron he is taking. I said to her "I guess that would explain why he's been so pale" (I just thought it was his cold combined with the winter time-no sunshine). Then came the unexpected news........she said the team was concerned enough that they wanted me to bring Mason in right away for some more testing.

Not really in my plans for the weekend; I packed us an overnight bag, made plans for my other kiddos' care after school, and headed up to Primarys.  The entire 45 minute drive, my mind was racing...... thinking of ideas of what could be wrong with little Mason now! I tried not to even think this, but transplant patients always have the possibility of developing autoimmune disease and/or cancers because of their anti-rejection meds. As my eyes filled up with tears of concern and worry, I prayed for positive thoughts and comfort.

Upon arriving Mason had more blood tests and a complete echo. 5 hours later...........after his echo showed good heart function and no changes, and a doctor's thorough exam, we came up with a plan that would allow us to go back home (for now), but be followed very closely. From a heart-lung stand point Mason is doing just fine despite what is going with his RBC's right now. If that was not the case they would have for sure admitted him. The additional blood work showed that Mason's bone marrow is not making new red blood cells. Not good. But at least it is still making platelets and white blood cells (which if not this would lean us towards thoughts of cancer, leukemia, or other major illnesses). 

What could be the cause and what next? Celcept, one of Mason's anti-rejection meds, can cause this if the level of Celcept he is on is too high. But that is one the levels we check in his frequent blood draws, and it is not too high right now! The hope is that possibly a virus (his three week long cold) in combination with being on Celcept, has stumped his red blood cell production. The docs cut his Celcept dose in half in hopes this would help his body restore its red blood cell making ability. Although doing this is kind of a two edged sword.....not enough Celcept could cause rejection! Yikes! Mason will have more blood tests on Wednesday to see if his red blood cell count has gone up. If not, he may be admitted for a thorough hematology work up!! Pray with us please for more red blood cells and no rejection! Mason for sure does not want to spend Christmas in the hospital!

Birthday Pictures:
Mason opened up new pj's the night before the big day.........

 and then he woke to a room full of birthday
balloons and streamers from the "B-day Angel"! 

 Mason had a very happy day! Most of it spent
cruising around the house on his plasma car.
(The car was not a b-day gift. He's had it quite  
awhile, but he loves it and rides it all the time.)

 Besides baseball and football Mason also loves policemen.
So, he wanted a police car cake...... and he got it!!!

Mason couldn't wait to play with his cake topping!

 All Mason wanted for his birthday was a baseball helmet.....

and batting gloves like his big brothers. 
 That was definitely easy enough for me !!

Thank you for your prayers and love! Hope you are enjoying this holiday season with your families! I will update with news soon about Mason's newest issue of the "diminishing red blood cells".


cici said...

My son picked up a parvo virus and his bone marrow stopped producing red blood cells for a week. It was very scary and his hemoglobin plummeted to 2. He needed a transfusion and finally began to make new red blood cells.
Oh the horrible thoughts that went through my head and talk of bone marrow transplant almost did me in, but we made it through, just as you will.
These are things a Mother should never have to hear or go through.
You are both in my Prayers for a Christmas of good health and family togetherness.
Just know God is watching over him.

madelyn said...

I am praying that you get answers - and good news - and no rejection. I know how scary it can be when the 'what ifs' start. Try to stay focused on the 'what is' and rely on God to handle the details and the next steps. Praying for peace and comfort while you wait and seek the answers. I'm also sorry to be so late saying HAPPY BIRTHDAY - our days get sucked up lately by the princess :)

Gourley said...

Summer!! I'm a bad friend and haven't checked in for awhile but OH MY GOODNESS!!! Mason looks SOOOOO GOOD!!!! I hope things go well today for his blood work! I am surely praying for him and YOU to stay out of the hospital for Christmas! Wow! I hope your family is doing well. Lots of love sent your way for the holidays!!

Jennifer said...

Praying for Mason.

Merry Christmas!