Day 4 - Saturday

Yesterday was such a rough day for Jace.  Today has been a much better day.  He has seemed more like himself and felt like sitting up in the bed and playing. 

Early morning hours were basically a repeat of yesterday morning with the usual nurse visits.  At 12:00 they took his vitals.  At 2:00 he was given scheduled medicine.  At 4:00 more medicine and the nurse drew blood for the morning labs.  They are monitoring his potassium levels and looking for increases in enzymes in his kidneys from one of the pain medicines.  At 5:00 he got his daily chest x-ray.  They are monitoring his fluid levels and making sure his lungs are clear.  From 6:00 - 8:00 he had his usual morning visits from several doctors on the team who are managing his care.  Dr. Christian, who is another surgeon who works with Dr. Bichell, came by to check on him.  She thought he was doing well and seemed pleased with his progress. 

At 8:00 the nurse brought in potassium for him.  His levels are low due to all the fluids he is losing so they are giving him more.  Since he has the g-tube, she was able to just put the potassium in his milk.  This way is much easier on him.  If they put it through the IV it burns and has to go in slowly.  If they give it orally, it tastes so bad that I'm sure we would have a hard time getting it down him.  His g-tube has turned out to be a blessing after all.  It is making it much easier to get all his medications in him.  It seems like they are in here alot giving him meds, so I can't imagine how hard it would have been if they were given orally.

Around 10:00 they made morning rounds to discuss Jace's progress.  They are continuing potassium and increasing his diuretics to help dry up his drain tubes.  Dr. Fish said they could possibly come out tomorrow or Monday.  They decided to leave him on a continuous feed of 1 ounce per hour since he had so much trouble tolerating the feeds yesterday.  In the morning, the plan is to stop it at 8:00 and do a bolus feeding at his normal time of 12:00.

After rounds, while I was in the shower, Taylor was able to get some cute pictures of him playing.  He felt so much better that he was able to sit up in bed and play.  Our nurse brought in bubbles, so he had fun trying to blow them.

She was also able to get one of him playing doctor and listening to his rabbit's heart.  We brought his doctor kit from home for him to play with.  When they come in to take his blood pressure or temperature, then he can pretend to take ours so he has enjoyed that.

We are trying to get him to eat something by mouth.  He hasn't felt like eating too much though.  His pa went to the store and got him and Taylor some suckers.  This seemed to excite both of them.

Later on, Jamie and Taylor made their daily visit for Taylor to Ben and Jerry's on the 2nd floor.  Jamie got him a cone, and Jace just had to have a bite.  He didn't eat much, but he sure liked holding that cone all by himself.

The highlight of our day came early evening.  Cain, Jace's heart buddy, along with his parents and sister, Brad, Catherine, and Callie came for a visit.  We told Jace they were coming, but I would give anything to have his reaction on video when they walked through the door.  His face lit up and he grinned from ear to ear.  He was also excited to see the gift bag Catherine had in her hand.  They brought Jace some of the things that are Cain's favorite things to play with.  He loved the Bob the Builder hat, police car, ball, fire truck, and Thomas the Train book. 

We thought it would be a good time to get Jace out of the bed for a wagon ride outside.  Our nurse, Margaret, came in and helped us get Jace into the wagon.  This is not an easy task with the drain tubes still in.

He loved getting out of the bed and going for a ride around the hospital.  We had planned to go out to the outside play area on our floor, but it was locked.  So instead we just walked down to the 2nd floor out on the breezeway. 

Jace loved sitting with Callie and watching Cain run around and play.  Cain had his Fontan a few weeks ago and he had to sit and watch Jace run around when we visited, so that was his chance for payback.  Cain was so busy running around that the only picture I managed to get of him was when Brad had him trapped between his legs.  It was so good to see him up and running around.  It is so nice to have another family to talk to that has been where we are.  I look forward to getting the boys together in a couple of months when they are both fully recovered for a play day somewhere other than the hospital.

When we got back upstairs and got Jace out of the wagon and settled, his nurse came in to give him some medicine through his IV.  He had a fit. She said the IV had probably gone bad.  They called in a charge nurse from the 5th floor to do a new IV.  He was able to get in the new IV, but it would not draw.  The nurse said that since they would have to stick him in the morning for labs, they would go ahead and do it then since he was already upset.  By the time they finished it was time for his 10:00 meds.  After that, he was so drained from the IV that he went sound asleep.  Hopefully in a few more days, he will get to go home and be able to sleep through the night without being disturbed.