All Settled In

I think it took Caleb all of ten minutes to settle back in at home.  I was hoping Caleb would catch up on some sleep on Thursday, mostly because I needed to catch up.  I think he may have been feeling too good!  If it weren't for the awful looking chest, you would have no idea that he had major surgery less than two weeks ago.  I couldn't even get him to take a nap.



Thursday night, Caleb went with me to take Ella and Maeve to Little League.  It was cold outside, but he wanted to play on the playground.  After we had been outside for a while, I noticed his lips weren't blue.

On Friday, Caleb and I ran some errands.  Caleb is not a stay-at-home kind of guy, so he enjoyed being out and about.  We went to the hospital to get his blood drawn in the afternoon.  The wonderful young woman in the lab got his blood drawn on the first try with no fishing around.  Caleb cried for about thirty seconds and was just fine as soon as the band aid was on.

Saturday, Caleb watched the Big Three play baseball and softball all day.  He loved playing on the playground and playing in the dirt.  On Sunday, he went to church and hung out with both the Dougherty's and the Wieland's.  He is supposed to be laying low for two weeks so he doesn't pick up any bugs, but we decided to stay away from sick people and call it good at that.

We found out that Caleb's potassium is still low, so the hospital called him in a prescription for an oral potassium supplement.  This stuff is so nasty that it requires a minimum of 4 ounces of liquid to dilute it to the point where it can be taken without making you sick.  We figured something this gross would never fly, so we have been putting a little bit in everything he drinks.  So far, he has not noticed and the nurse at U of M approved our method.  Hopefully, this will be enough because we are already struggling to get his medications in, I don't want to have to torture him with this too!

Today, the stitches from Caleb's chest tubes were removed.  It took three nurses and me to hold him down and get them out, but it is done.  It was not fun for any of us, but now he can take a bath.  This is a very good thing because he is getting good and dirty each day now.

Caleb has a cardiology appointment this Friday.  I will post an update after the appointment.

I need to say a special thank you to my Gardening Angel.  Thank you so much for your thoughtfulness.  I wish there was a way to thank you properly!

HOME!!!

Caleb and I made it home on Wednesday evening, only seven days after his surgery!  For reference, we were told to plan on 10 days to a month.

After Caleb's chest tubes came out on Tuesday morning and he was on room air with good oxygen saturations, there were only a couple of hurdles standing in our way of coming home.

The first hurdle was a chest x-ray.  It was supposed to be at 9:30 am on Wednesday morning.  At 9:40, no one had come to get us, so I started getting antsy.  I finally found a nurse technician and after a fashion, we got a ride down to x-ray.  Caleb did a great job and the x-ray went smoothly, but you have to have someone else read the x-ray to tell you if it is good or not.  The x-ray was done, but we didn't know if we would be staying or going.

Caleb's blood work showed that his potassium level was low again.  When he is on diuretics, he loses potassium easily, then they need to give him more.  Caleb got two rounds of potassium over a course of two hours.  We had to wait another hour until they could draw more blood and check his levels again.  At 1:45 pm, the blood was drawn and we found out his levels were still low.  No one was sure if he would need two more rounds or not.  I was really getting antsy now as this would add at least three more hours to our stay.  At 2:30, we still had not heard whether they were going to give him more or not.

We went down to get Caleb's prescriptions from the pharmacy and they had missed one of his medications.  The pharmacy closes at 6:00 pm and this is an uncommon medication, so I got even more antsy.  I didn't want to spend another night in the hospital because we were waiting on a prescription. 

Around 3:30 we found out that they had not ordered more potassium, so they were going to call it good with his levels.  We have to go to the lab and have his levels checked on Friday.

Around this time, we found that the x-ray had been read and looked fine, so we went through the discharge process.  The nurse practioner pulled Caleb's central line out of his neck and we were free leave.  We had to wait another 45 minutes until someone was available to walk us out because we were using the hospital's cart to move our stuff.  Caleb was very tired of being in his room, so I pushed him up and down the hallway in a stroller. 

We finally made it out, got his last prescription from the pharmacy and hit the road at 4:45. We missed the bulk of rush hour traffic and made it home around 7:00 pm.  Phil and the Big Three were at Sam's baseball game.  Caleb was pretty excited when they got home.  He was feeling good, even after the long car ride.  You really couldn't tell anything out of the ordinary had happened in the past week.

We are so thankful to be home.  Thanks so much to everyone that has helped us with food, gifts, prayers and words of encouragement.  We are blessed to have so many great friends and family members!

If you are willing, please comment on this post so when Caleb reads this when he is older, he will know that there were a lot of people pulling for him.  If you click on the word "Comments" you can write your message.  You can comment as Anonymous (it may be the easiest way), but please put your name in the message so we know who you are.  This blog will probably serve as Caleb's baby book - he is the fourth child after all - so you will be an official part of his story.  Thanks again for following Caleb's story!

Post Op - Day Five

I have a confession to make.  I withheld information last night.  I know you can't jinx a little heart, but I wasn't sure if you could jinx a chest tube.

Last night, the Nurse Practioner mentioned that the drainage in Caleb's chest tube was pretty slow and if he didn't have an increase overnight or during his morning walk, the chest tube may come out.  The chest tubes are the goofy looking hoses that go through Caleb's chest wall and drain the space between his lungs and ribs.  The look terribly painful (and I have heard they are more painful than the incision) and you are constantly worrying about tripping on them and ripping them out.

Caleb woke up again in the night and wanted to be snuggled.  We ended up sleeping together in the recliner last night.  It wasn't too bad, but it was not the most restful night.

Our nurse turned Caleb's oxygen off around 6:00 am this morning.  We didn't remove the tape from this face, just to be safe (and deal with mom's and the nurse's superstitious nature).

When we got up this morning, there was no major increase in drainage, so we hurried up to get ready to go for our walk.  When the kids get up and walking, sometimes pockets of fluid drain.  We wanted to make sure that was not going to happen later in the day, after the chest tubes were removed.  His oxygen levels were still great on room air, so we pulled the nasal cannula off, gathered the chest tubes and drainage box and hit the hallway.  Caleb did great and at one point, I had to make him slow down because he wanted to run.  I guess his pain is being well-controlled.  When we got back from a good long walk - and partial jog, there was no increase in drainage.

Caleb's chest tubes and pacer wires were removed at 9:30 am.  It was not as smooth as the last removal, but with the Versed and Morphine, it went ok.  For those of you counting, this leaves a central line in his neck as the only remaining medical stuff.  As soon as the tubes were out, I crawled into bed with him, snuggled with him and he quickly quit crying.  He was still stoned so he kept trying to fold us into a sandwich in the hospital bed.  Toddler boys love buttons that do stuff!

At 11:30 am, we went to have an echocardiogram of his heart and an EKG.  There may be a spot where his Pulmonary Vein is narrowed as a result of the surgery and his re-plumbing, but I have not yet heard official word or seen a picture.  At this point, I will not worry until I am told to do so. Of course, Caleb was thirsty after not being able to eat or drink for his chest tube removal, so he wanted milk.  He threw up in the echocardiographer's office, but we caught it.  I am getting pretty quick on the draw at this point.

When we got back, my dad and Diane were here.  Within a period of 45 minutes, Caleb went from a sickly looking little boy with an upset stomach to a todder that ate half a grilled cheese and wanted to stand in the window and look for buses.  The grilled cheese stayed down and we went to the playroom to play with Grandpa and Grandma.

Playing Rice with Grandma

Bowling with Grandpa

When Grandpa and Grandma left, Caleb and I laid down for a nap.  We woke up about thirty minutes later when it was time for his pain medicine.  We got up and went for another walk, took care of some laundry and played some more.  Caleb ate a good dinner and we gave him a little bath.  He was totally disgusting.  He was covered in adhesive, dried blood, vomit, you name it.  He smelled much better after the washing.  We put on new jammies, pants and shoes and went to play some more.  Around 9:00 pm, he fell asleep after eating half of my Lindor Truffles.  Today was an excellent day!

Looking Good and Smelling Better

Post Op - Day Four

I feel like a broken record and it is great.  Caleb had another good day.  Last night, I talked to the Nurse Practioner (they run things on the floor where we are) and asked if we could try to eliminate the Oxycodone during the day.  This morning, we worked out a plan where we would alternate Tylenol and Ibuprofen and use the Oxycodone if things got bad.  This is one of the reasons that I love Mott.  The staff listened to my concern and worked with me.

Caleb had his last dose of Oxycodone at 5:30 am.  He was fussy and slept most of the morning with the exception of when we took a ride down to the 3rd floor for a chest x-ray. He was still feeling queasy, so we took the bowl with us. Luckily, we did not need it. Another reason I love Mott is that to get to the 3rd floor, they brought a wheelchair, sat me in it, and sat Caleb in my lap. Things are not nearly as scary when Mom is your stroller!

At 12:00 pm, he got Tylenol and was in pain.  I decided I would let it ride until 12:30 and if things didn't get better, we would resort to the Oxycodone.  He threw up a little and felt better.  After that, things really took off!

At 2:00 pm, we went for a walk and played in the playroom.  While we were there, he had a dirty diaper.  This is one of the things we have been waiting for.  We walked back to his room and changed the diaper so we would not offend the other people in the playroom.  He decided he still wanted to be up so we went for a little longer walk and then went back to the playroom.

When we got back, Caleb ate three vanilla wafers and some milk.  For supper, he ate mashed potatoes, corn and a little pot roast.  After supper, he feel asleep.  Aunt Beth, Grandma Dougherty, Bret and Cody visited and Caleb was not well behaved.  He woke up partway through his nap and put on quite a show.  He looked like he was really in pain, but as soon as they left, he calmed down and decided he was going to play.

Feeling Better, but Not Quite Perky

We went for another walk and played in the playroom some more.  When we got back, we had a snack and got ready for bed.  He is still awake and it is nearly 12:15 am.  He just threw another fit (his toe was "hurting" - there is nothing going on with that foot at all) and he is now watching cartoons, totally pain free.  I am guessing that getting back into a normal routine at home might be challenging!

This evening, he started being silly and joking with me.  His personality is back and you can tell that he is feeling better.  He put his pacifier on his head and said, "Look at me, Mama".  He was talking back to the television and wanting to read his new book and play with his new cars.

Playing with His New Cars

Being Silly



His oxygen is now down to 1/8 of a liter.  This is as low as it will go.  He was on room air for a couple of hours this afternoon, but then his oxygen saturations dropped below 80%, so the nurse turned his oxygen back on.  I am thinking maybe we will be able to get rid of that tomorrow.  This will be nice because now when we go for a walk, I hold his hand with one of mine and then carry his drainage tube box and pull his oxygen tank with the other while trying not to pull any of the tubes.  I am not that talented and he walks too fast.

Today, we might have solved the nausea problem and we are 1/8 of a liter of oxygen away from eliminating another tube.  Woo Hoo!

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