Post Op - Day Three

Today was a big day.  Phil and Caleb had a good night last night.  Caleb was fussy this morning, but we aren't sure whether he was in pain or just tired of being here. 

Caleb has had three chest tubes.  Two are by his lungs and one was in the middle of his chest.  The drainage from the middle chest tube had really slowed down, so they decided to pull the middle tube today.  They gave him Morphine and Versed and pulled the tube.  Everyone told us that this is the most painful of the chest tubes because it is bigger and the plastic is harder, so getting that out was a nice thing. 

The Big Three and I slept in and went swimming at the hotel this morning.  We didn't get back to the hospital until 12:00 pm, so Phil got to handle the chest tube removal.  He said that it was not too bad.

The most exciting part of the day was when Caleb got up and walked to the playroom. He played for at least 20 minutes before he threw up. He walked back to his room on his own, even after throwing up. The Big Three were here when he walked, so we have about 700 pictures of him walking.

On the Move

Playing in the Rice

Caleb's stomach has been upset all day.  He has been eating and drinking pretty well today.  After a while, he is in pain and inconsolable, then he throws up.  After he throws up, he is back to his normal self.  The funny thing is that as soon as he throws up, he is ready to eat and drink again.  Tomorrow, we are going to see if it is a medication thing.  He has had a reaction to Oxycodone in the past and he is getting that right now.  Hopefully, we can solve the problem, because he really wants to eat.  Luckily, he does not seem to be throwing up everything and it takes him a while to do it, so at least he is getting some fluids and nourishment.

Caleb's oxygen levels have been much better since the removal of the chest tube.  The general consensus is that he is taking deeper breaths because it doesn't hurt as much.  He has been on 1/2 litter of oxygen for most of the day.  The nurse moved him to 1/4 liter, but he didn't like that and his oxygen saturations dropped a little (not too much though).  Maybe we can get rid of the oxygen tomorrow.

We snuggled in the chair and watched tv most of the night.  I think that he is tired of being in bed.  I am guessing that we will be in the playroom a lot tomorrow!

Chilling in Bed - One Tube Down, Two to Go

Post Op - Day 2

Caleb had a decent day today.  He was up for three hours in the middle of the night last night because his oxygen saturations were too low (usually by a point or two) and the alarms kept going off.  After a while, the nurse increased his oxygen to 2 liters and that solved the problem.  We watched American Pickers at 2 am and finally got back to sleep at 3:00 am.

At 6:00 am, Caleb was up for his medications.  When he was finished, we snuggled in the chair for a couple of hours.  We both enjoyed it.  That was the first time he has been out of bed since Thursday morning.  He stood on his own for a minute to get weighed and he sat up on his own a couple of times in bed today.

Caleb's Morphine and Toradol were stopped today, so we are working with Oxycodone and Tylenol.  When he starts eating for real, we can add in Ibuprofin.  For most of day, his pain was well controlled.

This afternoon, the nurses removed the dressing from his chest incision.  It had been seeping and the dressing was looking pretty bad.  They also replaced the dressings for his chest tubes.  Caleb did well enough. He was not happy and it took a while to calm him down, but it wasn't terrible.

Caleb decided to start eating today.  He had part of a chocolate doughnut and some mandarin oranges.  He wasn't interested in drinking much, but he did drink a little.  This afternoon, he decided he wanted lunch.  He wanted a hot dog.  Not what I would choose to eat on a queasy/empty stomach, but we wanted him to try eating something.

Around 5:00 pm, Caleb started getting fussy.  That was about the time Phil and the Big Three got to the hospital.  For a while, he was inconsolable.  When he is not feeling good now, he says "Momma, what you doing?" over and over.  I can only guess that this means "What the heck are we doing here and not home where we belong?"  He gagged once or twice and then threw up.  Luckily, I was nearly ready for it and it wasn't too messy.

The nurse gave him some Zofran (an antinausea drug) and after about a half an hour, we were able to get him to calm down.  He sat in my lap, hung with the kids and tried to eat my pizza.  We have not been successful convincing this kid to eat saltines or graham crackers, but at least he is willing to eat.  The nurse practioners were very happy with him wanting to eat anything.  He also began drinking more fluids.

Phil is staying at the hospital tonight and I am staying with the Big Three at a hotel so I can get caught up with them and get caught up on sleep.  He sent me a text that hCaleb has now had a dirty diaper (another good step) and they are hanging out and watching movies.  Overall, everyone is very happy with Caleb's progress and we have heard several times that he is doing very well for someone that has had the Fontan surgery.  We are very thankful for his progress so far!

Tired, Itchy and Doing Amazing

Today has been another good day!
After looking at him today, I realized that I missed a bunch of stuff in my "Caleb's Extra Parts" list last night.  He also had an NG tube, pacer wires, and a line directly into his left ventricle.  And for the purists, his arterial line was in his hand, and his central line is in his neck.

Caleb was up a lot in the night.  We were always able to settle him and while he was in pain a couple of times, Morphine was able to control it.  He started eating ice chips around 11:30 pm and that made him feel better.  It probably helped not only his thirst, but also the sore throat he probably has from the breathing tube.  Sometime in the middle of the night, he started drinking apple juice.  He sucked down several juice boxes throughout the night.  He still had the NG tube in, so that sucked the apple juice back out, but it didn't make him nauseous and he felt better, so it was all good.

Early this morning, the doctor turned off the pacemaker to see what Caleb's heart would do on its own.  It did fine and they were able to keep the pacemaker off.  The lines will stay in until his heart proves that it won't do anything else funky, but as of 7:00 pm, it is still behaving.

At rounds this morning, everyone was discussing how well he was doing.  They decided that he was doing well enough to leave the PCTU (the cardiac ICU) and go to the floor.  Caleb rested for a while and then we got to business.  First, they removed the line that went into his left ventricle.  Next, they removed the arterial line from his hand and his catheter.  At one point this morning, Caleb was in pain so I asked him what was wrong.  He said that his foot hurt and said to fix it.  The nurse checked the IV in his foot and it was not working, so that came out too.  It is so much easier to figure out what is wrong when he can talk!

Caleb does not enjoy the nasal cannula (and likes to pick his nose) so he has spent all day messing with his nose.  Mid morning, the nurse noticed he seemed to be itchy.  That is a side effect of the Morphine.  He has had a couple of doses of Benadryl.  They have helped the itching and made him nice and drowsy.  They have reduced his Morphine and he is getting Toradol, Oxycodone and Tylenol for pain.

Caleb started Lasix last night to help him with his urine output.  It seems to be working, but only when he gets the Lasix.  Hopefully, his kidneys will decide to work better soon, but there is no real concern at this point.

Caleb has needed some magnesium because his levels were a bit low.  His chest x-ray looked good this morning.

This afternoon, Caleb's other peripheral IV stopped working, so that was removed.  Now he is down to one IV location with two ports, but luckily, he is only on a few medications, so it should work for a while.

Caleb has eaten a popsicle and been drinking apple juice.  He threw up once this morning, but that was my fault.  All night, he was able to drink as much as he wanted without getting sick because the NG tube was sucking the majority of the liquid out.  After the NG tube was pulled, I didn't limit what he drank and he threw up.  I learned my lesson and we had no problems after that.

His chest tube drainage is not too heavy, but I am guessing that it will get worse when he gets up and moving.  Getting up, moving and eating something are the plans for tomorrow.  They said that they weren't worried that he wasn't doing those things today because most Fontan patients don't go to the floor so soon.  So things are going really well!

Chilling with his Friend Frank



Eating a Popsicle

Since Surgery

Caleb has been doing well since coming back from surgery.  His blood pressure was low, so they had to give him some extra liquid to bring his blood volume back up.  They gave him saline and then some albumin.  His heart is a little angry and has required some pacing with the pacemaker.  This is an external pacemaker that they always place for this type of surgery.  His magnesium and bicarb were a little low, but both came back where they belonged with some medicines.  All of this stuff is totally expected and is just part of the process.  Overall, they are happy with where he is at, so I am happy.

 

Around 8:30, they were able to take Caleb off the respirator.  This is huge because now he is breathing on his own, there is no tube in his throat and best of all, he can suck his pacifier.  Life is good.  He is doing great keeping his oxygen saturations in the 90's with very little oxygen so far.

 

He is very thirsty, but he is scheduled to be able to have clear liquids at 11:30 pm. He is sleeping most of the time, so hopefully the time will pass quickly for him.  The hospital has spongy swabs that you put water on
that are used for mouth and lip care.  Caleb is sucking the water out of the sponges and asking for more. 

 

As far as I can tell, he is understanding what we say and is still our Caleb.  I always worry about stroke or damage from all of the screwing we are doing with him, but everything seems to be good.  At one point, he was biting down on the ventilator tube.  I asked him to open his mouth and he did.  I had to tell him he could close it back up because he kept it open.  He understands and is obedient!

 

For this surgery, it is all about getting rid of tubes and lines.  Right now, he has gotten rid of the ventilator tube and still has the following stuff left:

• A central line in his foot
• An arterial line in his neck
• Two peripheral IV's
• Three chest tubes
• A nasal cannula for oxygen

Here is a nice covered up picture so you can see his handsome face.  This was before the breathing tube was removed:

Thanks again for all of your thoughts and prayers today.  We are so thankful that we have such great support and that things have gone so well to this point! 

 

Out of Surgery

We just talked to the surgeon and he said that the surgery went great.  His blood pressure is good, he is not requiring the pacemaker to maintain a good rhythym and his oxygen saturation is 99%.  Granted, that is on oxygen, but his saturations have not been that high since he was two days old - even when he was on oxygen.  Funny how having all of your blood go through your lungs makes your oxygen levels go up.

The plan right now is to try to fast-track him which means they are hoping to get him off the ventilator in the next six hours or so.  That would be good because I am guessing he is not going to like the tube in his throat.  Hopefully, the next few days will go smoothly and I will be able to snuggle and comfort him when he needs it!

Here are some pictures from before surgery:

Still smiling after two days of hospital stuff (even before the Versed)

Hanging with dad

First Update

We just got our first update.  Caleb's MRI looked fine.  All of his lines are in and went in without too much trouble.  They are just getting ready to open his chest.  So far, so good!

The Rest of the Day

When I got back to the recovery room, the nurses quickly got me into a chair because Caleb needed snuggling.  I got him calmed down and he was asking for milk.  They had tried to give him a bottle, but he wanted none of that.  He is not a baby, just ask him.  Instead, he finished a half pint of milk from a cup.  We stayed in recovery for a couple of hours, watching tv and falling asleep in the chair. His numbers were great and he did not spring a leak.

We moved to a regular room on the floor around 11:30 am.  Caleb had to stay relatively still until 1:30 pm.  They ended up going in through an artery in his groin area and in through a vein in his neck area.  Because his circulatory system has been re-plumbed, they had to have two access points to see everything they wanted to see.  He had a band aid on his neck and a pressure bandage at his groin.

Chilling in Bed

By 1:30, Caleb was doing great and they let us leave the hospital so we could get one more good night's sleep tonight.  They left his IV in so he will not have to get another poke tomorrow to put him out (and no more drinking nasty medicine).  The IV never really bothered him.

We got back to the hotel and had a snack and played blocks.  Then we fell asleep watching cartoons in the chair.  We woke up when Phil and the Big Three got here.  Caleb slept for another hour, he was wiped out.  When he woke up, the Big Three mobbed him.  If it weren't because they were so worried about him, it would have been funny.  We ordered in Chinese food and hung out.

Eating Snacks at the Hotel

Caleb is pretty whiny, but is doing great.  I don't think he will be as friendly tomorrow at the hospital.  I can't blame him.

We have to be at the hospital at 7:00 am tomorrow morning.  Caleb is going to have an MRI first as part of a research study to help the surgeons decide the best surgical practices for future heart kids.  After that, he will head into surgery.  I don't expect the first update until 10:00 am or so.  I will post updates throughout the day tomorrow.