Day 2

After the breathing tube came out, from 12:30 until 3:30 was a pretty long time.  We thought Jace was in pain, but soon discovered that he was thirsty after having the tube removed.  The doctor wouldn't okay anything to drink until 3:30 because of the risk of aspirating.  So every 30 minutes, he would wake up fussy wanting something to drink. The nurse put some water on a sponge and let him have some that way and that seemed to help.  I think we were all glad for 3:30 to arrive.  Between 3:30 and 6:00, he drank 11 ounces of water by mouth.  This is great for Jace since he usually doesn't drink more than an ounce or two at a time.  We are hoping that when we get home we can start weaning him from the feeding tube.

At 6:30 they decided to move us to another room on this floor.  When you are on this floor you usually have your own nurse until you are well enough that you can be paired with another patient.  This meant that Jace was improving enough that he could share his nurse with someone else.  Once he was settled in, they decided to put the pacemaker on a backup mode and set it at 80.  This would mean that he would pace his heart himself unless it dropped below 80 and then the pacemaker would take over.  As long as he is awake it seems to be fine.  At times when he sleeps is when it has to kick in for him.  They told us it is very common for this to happen after the Fontan surgery and sometimes it takes a day or two to level out to normal.

Around 9:00 Dr. Bichell's nurse, Katrina, came in to remove an atrial line.  Any time a line is removed that is a good thing.  That just means one more step closer to home.

At 10:00 the team came by to discuss Jace during their morning rounds.  As far as medicine goes, they are going to start giving him a whole aspirin once a day instead of  a 1/2 that he normally takes.  His enalipril will be started back and they decided to start giving him oxycodone for pain every 4 hours.  This should last longer than the low doses of morphine he has been getting.  They also decided to turn the pacemaker down to 70 to make sure that Jace would not drop below 80 when he was asleep.  If it does not drop, the plan is to remove the pacemaker today.  What a relief that will be!!

Around 11:00 he started to become uncomfortable and trying to scratch his face and neck.  The nurse told us that when they give a lot of morphine sometimes it will cause them to itch.  They gave him some benadryl to help with the itch and his 1st dose of oxycodone so he could rest.

At 12:00 they unhooked his oximeter.  This machine measures the amount of oxygen that his brain is getting.  This is the machine that I watch closely.  I guess that is the teacher coming out in me and wanting to make sure there is no chance of damage to his brain that could affect his learning.  His numbers have been great so it was time they could remove those strips on his forehead and hopefully make him more comfortable.  They also removed his catheter.  I know this will have to make him feel better.  They are also going to start his feeds back.  He will start to get his pediasure again.  They are going to start out very slowly to hopefully avoid him getting sick.  The plan is to do a continuous feed for 24 hours.  He will start out getting 1/2 ounce per hour for 4 hours.  If he tolerates this okay, then they will move it up to 1 ounce per hour.  He should get back to a normal feeding schedule before too long.

At 1:00 they decided to remove the pacemaker to see what would happen.  Thankfully, everything went great with that and his heart rate is staying right where they want it to be. 

At 2:45 they began unhooking more lines.  His central line in his left shoulder was taken out.  The arterial line in his right arm was also removed.  This means he is now ready to be moved out of the ICU and up to the 6th floor to a regular room.  This is a major step getting us closer to home.  He is ready, but it could be awhile before they actually have a bed available for him.  So we get to hang out here and rest.

While the nurses were removing the arterial line, some blood got on the bed.  His sheets had to be changed so that meant I got to hold him for the 1st time since before surgery.  That was the best feeling to get to have that snuggling time for awhile.  When we went to put him back in bed I think it may have hurt him to be moved.  He got really upset and had to have more pain medicine.  It is so hard to move them after surgery because of the lines, having to watch his incision, and not being able to pick him up under his arms.  For 6 weeks we will not be able to pick him up under the arms to give his sternum time to heal back.  That means getting in and out of the car seat and just picking him up at all is going to be difficult.  He settled down and Jamie and I were able to go out to the waiting room and eat some supper.

When we came back from eating, Jace was sleeping so I decided it would be a good time for me to get some much needed rest.  There is a chair in the back of his room that lays flat down that we can sleep on.  Around 6:30 I heard him wake up and start talking to Jamie.  He was asking for Sissy, Pa and Nanny, and Poppy and Gran.  We are only allowed three visitors at a time in his room so they all took turns coming in to see him awake and talking.  He also wanted to watch his Scooby Doo movie we brought with us.  This was such a good sound to hear him trying to talk and happy.  About an hour later I heard Jamie wrestling with him to keep him in bed.  Jace decided it was time for him to get up so it was also time for Mommy's nap to be over too.  He settled down and after they gave him some more pain medicine he went right to sleep.

Sound to sleep with his blanket in his mouth

We were fortunate enough to get a room at the Ronald McDonald House.  Visiting hours are over at 9:00 so Jamie and Taylor left the hospital and went to the RMH for the night.  Today has been a big day for us with lots of  lines and things removed and progress made to get us home.  Hopefully we will have a quiet night.  It is almost 11:00 now and Jace is asleep and doing great.  I will post more tomorrow about how the rest of the night goes.