A Better Day

Wow, last night was a long night.  They woke Mason up every 3 hours to do his fasting glucose tests, which if you know Mason you know how bad he hates pokies.  Then on top of the every 3 hour wake ups at one point Mason's heart rate wasn't its normal so they came in and did an EKG, and another time in between those times they came in and they were doing something with his IV's.  So needless to say there wasn't much sleep happening.  Today was filled with some playing in the playroom, more doctors,  and figuring out meds.  The conclusion of the low blood sugar is that Mason has a fasting intolerance.  Nothing to really worry about from our standpoint unless he is fasting for a surgery or procedure.  All the metabolic tests came back just fine so that was a big relief.  After going through everything today, Mason was able to be discharged around 3:30 this afternoon.  He has been super tired and emotional after everything but wouldn't fall asleep, even during a long walk up to a little shopping village to a trip to Trader Joe's and CVS.  Tonight at the house was Dessert with Mr. Dee. Mr. Dee comes every Thursday night to the house and makes some yummy dessert for the house.  Mason adores Mr. Dee, and Mr. Dee is so great to Mase.  He let Mason help him with the whole cake making and cleaning up, then while it was setting he played a good old fashioned game (invented by Mason and Mr. Dee) of hide the chips.  Mason laughed and had such a good time, it was nice to have him not be so grumpy for a minute.  Hopefully tonight we will get some much needed  rest.  He has to go back to the hospital tomorrow for some more appointments, but they should be minor with no surprises!

 

 Dessert with Mr. Dee

 

Mason and Mr. Dee



Quick Update

Tired and delusional post: Mason had his heart cath this morning. From start to finish it only took about 2 hours which seems so fast compared to his 6-8 hour surgeries.  All of his pressures have slightly come down since his April cath which his team was very happy about.  They are still higher than they want them and his heart rate is still high so they started him on a beta blocker to slow things down and help his heart out.  Because they wanted to monitor his heart rate in it they knew they would keep him overnight.  A new thing they found though is a new narrowing in his pulmonary artery leading to the left side of his heart on top of the atrial stenosis.  So that means another open heart surgery is in his future.  When his surgeon is back in town he will review everything and discuss whether he wants to fix it now or wait 1-2 years. As long as it is safe, Zac and I are pushing for the 1-2 years idea.  We will see what comes of it all later.  Now that the heart info is covered, Mason gave his cath team a scare this morning.  It is protocol to check a blood sugar before starting and his blood sugar was a measly 34.  Normal is between 70-100, so he was very very hypoglycemic.  So he got another specialty team now, endocrine was just added to his list of specialists that follow him.  Due to not knowing how, why, or when his sugars got so low he is getting his blood sugar checked every three hours until morning, which so far has been a fight. But they want to see at what point it drops and take a bunch of labs at that point to try to figure out what is causing it.  Tomorrow we will meet with a nurse and do glucose test training and he will come home getting regular glucose tests.  We walked around the unit for a few hours non stop tonight and at the end we got to join up with Mason's new buddy Bronson who had the bivent in July and hasn't got to be discharged yet so feel free to add him to your thoughts and prayers! Mason was super tired by that time so I can't wait for tomorrow so he can play and be happy with his arranged friendship.  In the meantime I should sleep while he does because every 3 hours will come quick! Thanks for all the support and kind words, they are appreciated! 

 

Back Again

We are back in Boston!!! Yesterday we flew in and today we started right into things today with 6 hours worth of appointments, xray, labs, echo, ekg, vitals, consents, and a whole lot of running around to all those different locations.  As always Mason was a champ through it all only getting impatient a few times.  The ladies at the pre op clinic remembered Mason and he used his cute card to his advantage.  He also was so excited to see Dr. Banka, that when he saw her he went on a dead run down the hall to give her a big hug.  He will have a heart cath tomorrow to check hemodynamics and possibly try some new medication if his heart pressures and heart rate are still too high. The plan is, as of now, that he will have to stay one night in the hospital but should be able to get out on Thursday.  All prayers, and positive thoughts are more than welcome for good results!!

Ready to take off!

 Flirting with the vitals tech

 Echo

 Mason was so excited to see "his puppy"

So excited that we have had to take his picture by it every time we walk by it.  And he also talks to it like it is real.  It is pretty dang cute.