Monday, April 14, 2008


yeah! this means we will be going home soon (hopefully)! miraculously, orion has drained all of his fluids over the weekend, and in the last 24 hours, has only output about 2mls. that's like a drop. we are so excited to share this good news :)

on to other happy things, orion's been his old self again. the last several days have been tiring for us, with all of his energy, playfulness, and wanting to eat all the time. with bo busy with work too, neither of us get much sleep. orion is definitely happy to eat again though. after a week of having a breathing tube in and not eating anything at all, he absolutely loves hospital food! this kid is eating everything in sight, even foods he's hated in the past. favorites now are chicken noodle soup, chicken drummettes, french fries, tater tots, fish sticks, scrambled eggs, french toast, pancakes, and even jello! i even snuck in some oreos and soda, stuff we don't even dare keep in our kitchen. it's great to see a smiling kid again with oreo black teeth, haha :)

we have also been taking orion to the playroom almost everyday. here, he can meet other kids who are also hooked up to IVs and have chest tubes, so he can see that he's not the only kid with tubes and wires. they have a ton of toys and fun projects daily. yesterday, we all built birdhouses. even kathy and elizabeth came for a visit and made birdhouses too. of course bo outdid us all and made his fancy, you know, bo-like. he definitely likes to "bo" things up.

when we take him to the playroom, he gets to ride in a wagon. so we bring EVERYTHING. chest tube drainage, portable pulse/ox machine so we can see his heart rate and oxygen saturation levels, an oxygen tank, plus snacks and a camera. we ride round and round on the floor, sometimes stopping for coffee for mom and dad, then we head to either preschool or the playroom. no matter where we go, he has a blast in that wagon. when we get back to our room, he begs for more.

overall, he's doing great. his anti-seizure meds are keeping them under control, he hasn't had one since his last episode more than a week ago. oh yeah, the other day, he pulled his IV out! what a monster! it was in his neck, and boy, was he tired of having that thing there. after coming back from a wagon ride, i noticed it had been pulled out, but not completely. i went to tell a nurse, and she literally ran to our room (no running ever allowed in hospital, it makes people think someone is dying. ask bo, he got in trouble from one of the cardiologists haha). at that time, the nurse didn't think it was pulled out, so they taped it back up. by morning though, our day nurse said it was not in the vein anymore and the medicine and flush that was administered had leaked. when she pulled the tape off, it was very wet inside and also leaked onto the bed. orion definitely gets what he wants. so the nurse practitioner decided they will not put a new IV in since he's such a hard stick, so all meds became oral. he's been a happy camper since.

now, all we are waiting for is this last chest tube to come out. hopefully there will be no more drainage, and it can be taken out soon. we will probably be here for another day or two after it's out to make sure there are no complications with it. he is still on oxygen though, it seems his saturation levels are low when he's not on it. so we have a feeling he may go home with oxygen, but not really sure yet.

we can't wait to go home. we miss our bed. orion misses his toys and buggy rides. we still need to work on his strengthening muscles, but i have a feeling he will catch up fast. once he sees our wood floors again, he'll be back to butt-scooting in no time. i miss home-cooked food, and i miss cooking! thanks to everyone for your thoughts and prayers, they are working!!! please continue your prayers that there will be no further complications and orion's heart, body and mind are happy and healthy :)


Holly said...

praying for your family from western PA. You have all been very brave through this trial. Praying your tomorrows are so much brighter!

a friend of Nicole Wise

Anonymous said...

yeaaa! this is great news... we'll keep the prayers coming and can't wait until you are on your way home (to comfy beds and good food!)... thanks for the updates and we'll keep checking in :)

xxxx the mannings