Today was not the 'better day' that we had hoped for. Josh had another tough day. His chest tubes are still draining. His x-ray shows more fluid, so they will remain in place for a few more days. Misery. The x-ray also showed a partially collapsed lung. And he's very low on potassium which presents another problem; his only line that was safe to administer potassium, as well as draw blood, was pulled today. It was his Fontan line & now it's out. Because it was pulled today, they had to put in another IV. Joshua is very hard to place a decent IV, so when his nurses hoped to get an IV placed that would also draw blood, I was really nervous.
After the Dr came in and pulled his Fontan line, an IV nurse came in and worked a miracle. She popped an IV in Joshua's arm in one try (no digging either) & headed out the door. She was in & out in minutes, she's my hero!
Unfortunately, Joshua's good luck ended there. He had 2 serious vomiting episodes that were so painful & taxing. During that time, Joshua's heart rhythm got all nutty. They are thinking it may be due to his electrolytes being out of whack. So they are working on leveling that out.
He's been sleeping ever since the last vomit, so Jon & I have taken turns holding him. Hopefully tonight he'll get some much needed sleep, which may mean I get some sleep too.
The highlight of our day was dinner...a fellow heart mom, Jen (Magnus' mom)brought us a ton of delicious food! It seriously made our day.
Jon's parents also visited, but unfortunately their timing wasn't optimal for visiting due to the craziness of our day. But still nice of them to make the trip & I know they were just happy to see Josh. :)
Again, we are hoping that tomorrow will be our day & things will go great.
We have created this blog to tell Joshua's story. Josh was born in 2007 with a congenital heart defect, Hypoplastic Left Heart Syndrome (HLHS - only half of his heart developed) & has undergone 3 open heart surgeries, pacemaker placement as well as surgery to repair his paralyzed diaphragm. He had a very rough beginning, and has hit some bumps along the way but amazes us every day with his ability to live a very active life. Follow us as we try to keep up with him!
forms short sentances never stops talking continues to climb up everything is a peacemaker w/ his sisters weighs 23.5 lbs
at 19 months joshua
loves to swim speaks quite a bit climbs up everything loves to camp tries riding his tricylce, but needs some help
at 18 months Joshua
can catch a ball runs everywhere he goes ever expanding vocabulary climbs like a mountain goat eats anything in sight (like a billy goat) beats up his Dada very coordinated says "what the?" when something surprises him
At 17 months Joshua...
anxiously watches for Semi-trucks as we drive & yells "tractor" when he sees one walks the whole way around the block reminds me he needs his meds hides toys in the toilet (this is bad)
things I've found in the toilet:
a football blocks a full roll of toilet paper mulitple empty rolls a small soccer ball
At 16 months Josh...
says 15-20 words 'Amen', 'Grandma' & 'Doctor' (his newest words) winks roars like a tiger follows simple directions communicates very well with & without words jumps on the trampoline (with adult supervision:)
At 15 months Joshua...
wrestles his big sisters helps clean up (a little anyway:) tries new words and sounds daily isn't as scared leaving mommy's side flirts like crazy makes animal sounds
At 14 months Josh...
weaned from breast milk walks say 10+ words puts 2 words together feeds himself can crawl at lightning speed makes anyone smile 9 teeth (3 are molars)