Yesterday evening we went to bed knowing that Josh may possibly need new chest tubes placed this morning. When we woke up, all of Joshua's food was gone & a big NPO (aka 'no food or drink') sign sat in its place. I was surprised by this. It was never discussed with me, so when Joshua woke up asking for breakfast (his first time with an appetite since surgery) I wasn't what you'd call 'happy' to learn he was scheduled to be NPO. Minutes after asking the nurse about the NPO order, the surgeons walked in & were faced with an unsettled momma bear. I'm pretty sure Dr. Azakie would classify me as unstable, haha! (I'm running on empty in the sleep department.)
They were coming to discuss chest tube placement but I told him, given the fact that Joshua had just gotten his tubes pulled & finally got off the heavy drugs, he finally had an appetite & was able to hold down food - I felt that the timing of placing new tubes would be a step in the wrong direction. I just wanted a little more time to give him a break from all the madness. Time to recuperate. Time to let the diuretics do their job.
His response was "That's fair, we can give him another day." He also said that the left side of his body was fluid free, which was a new development & that its possible for the right side to clear up too with just diuretics.
So the day was spent balancing electrolytes (which was accomplished), getting Joshua moving, lots of chest pt and lots of diuretics. I'm not sure what they'll decide to do tomorrow, but we accomplished a good amount today. His sats are up in the 90's now. I feel so much better tonight.
On the flip side, last night Joshua took a major step backwards psychologically (after he was woken at 2:30 am & forced to drink about 2oz of potassium- pacifier withheld - just plain mean). He's stopped cooperating with the nurses, he's been crying a lot, he didn't even want to be in the playroom when we took him this afternoon. As a parent, that is maybe equally hard to watch as seeing him in physical anguish. He has had a few moments of brief happiness though. First, we had about 2 hours of playroom time. Joshua had no interest. We did all we could to brighten his afternoon, but no dice. So we hesitantly went back to the unit & found that Joshua had received a package in the mail. It was from uncle John & aunt Ado. Inside were some very thoughtful toys, including a squirt gun. BEST PRESENT EVER! We filled it & walked through the halls & Joshua dowsed everything in sight! Then we went to the 'fish tank waiting room' & he shot at all of the little fishes. It made him so happy! It was pretty hilarious!
It was short lived, but very needed.
Another high point for Josh today, he sat up at the edge of his bed, unassisted & ate dinner with me. We had the laptop on the table & scrolled through the blog & giggled at all of the pictures & shared fun memories. It was really great for us both.
Joshua is sleeping now, hopefully through the night.
Thank you so much for your continued prayers. We certainly felt them today.
(If you can't tell by my posts, I'm pretty sleep deprived, so forgive me if I'm hard to follow.)