Thursday, December 26, 2013

Merry Christmas and Happy New Year!

We hope you had a wonderful Christmas!

I am sorry that it has been so long since I posted. As is always the case, no news is good news! Caleb is still doing great. Nothing has changed heartwise, the only changes are just normal toddler things. Caleb is progressing and developing more and more each day. Some of the milestones of the past couple of months:

Caleb decided he was ready to be potty-trained about a month and a half ago. He makes it through the night just fine, but still has accidents if we don't remind him during the day. I think he has way too many other things to do.

Caleb went through a biting phase about two months ago. No one was safe. After about two hundred time-outs and every mom trick I could think of, he finally stopped. Luckily, no permanent damage was done to any of his victims. He is still known as "the biter" at daycare, but hopefully someone new will step up to take his place and he can go back to being "the drooler".

Caleb can count to six now. After six, all bets are off. Most times, we hear "eleven-teen" somewhere in there.

Caleb is getting excited about the idea of going to school. We are planning on sending him to 3 Year Old preschool next fall. This will allow him to start school at the same age as the big kids, but will give him an extra year and will make hime one of the older kids in kindergarten, not one of the youngest. There is a decent amount of research now that is showing that many heart kids have difficulties in school. Phil and I are hoping to give him every advantage we can.

September - Caleb participating in his first heart defect awareness walk

October - Caleb was a fireman for Halloween

November - Riding the horse at Meijer

December - Christmas

Wednesday, August 28, 2013

Three Years Old

Caleb has had a busy couple of weeks. On August 17th, he turned three years old. He was thoroughly spoiled by his sisters. They decorated the living room and put streamers on a birthday chair for him. He loved it! He kept asking us to sing Happy Birthday to him and kept asking if he was going to get more presents.

On Monday, August 19th, we took Caleb to Ann Arbor for a developmental assessment. Caleb participated in several research studies and one of them had a follow up portion to see how heart kids progress developmentally. He played and answered questions for at least an hour and a half with the doctor performing the assessment. He ranked totally normal on the tests she gave him. His overall assessment was "Low Normal". The "Low" part is because he still isn't potty trained, he refuses to learn his colors and I struggled with filling out the forms for a three year old. How would you answer "Does your child do strange things?" Strange for humans or strange for three year old boys? Do you consider drinking toilet water or picking your nose and eating it strange? I am not worried about his development, so I am guessing he is just "Normal". We will definitely take that. He is talking in complete sentences, he doesn't like to share and he is finally starting to show some interest in potty training. I figure that is normal enough for us!

On Tuesday, August 20th, Caleb had a pediatric cardiology visit in Grand Rapids. His EKG looked good for him, his blood pressure was a little high but acceptable, and his oxygen saturation was 96%. I have only seen his oxygen levels that high twice in his life - before he had his first surgery and while he was still intubated after his most recent surgery. He weighs 28.8 pounds and is 35 inches tall (I like saying 2'-11"). The cardiologist was very happy with how Caleb is doing. He asked if we had any concerns relating to Caleb's heart or health and we do not. Compare this to what I posted in the blog three years ago on August 20th:

Caleb is really struggling today (and so am I). He is going in shortly for a heart catherization to see if they can find what is causing his low oxygen levels. He was up and down throughout the night and they are unable to wean him off any of the drugs, the nitric oxide or reduce the amount of ventilation. My understanding is that if they were still doing everything 100%, he would be stable. The problem is that if we have to keep everything at 100% to keep him stable, we can't move forward and we have no where to turn if things get worse.

The gut feeling I am getting from the cardiologists is that we will end up going back to surgery and rerouting the shunt to pick up more blood flow (or more consistent blood flow) to his lungs. They are planning on making a decision early this afternoon.

Please keep praying for him.

What a difference three years make! Now, the only visible evidence of his heart defect are his scars. He takes a baby aspirin a day and has no restrictions. We are so unbelievably fortunate that he is doing so well. We are so thankful for all of the prayers over the past three years and all of the amazing support we have received. Thank you!

Rocking the Speedo swim diaper

Now we just have to convince him there are no pacifiers in the big leagues

Playing at the Airzoo

Monday, April 29, 2013

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!

Friday, April 26, 2013


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!

Tuesday, April 23, 2013

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!

Sunday, April 21, 2013

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!

Friday, April 19, 2013

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

Thursday, April 18, 2013

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!

Wednesday, April 17, 2013

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.

Heart Cath Complete

The doctor just came in and told me that the heart cath went great.  His good valve is working great with no leakage.  There are no difference in pressures where there shouldn't be.  The only thing that is remotely screwy is that his left Pulmonary Artery is a little small, but the doctor said that it is not unexpected in someone that has had a diaphragm plication (Caleb's diaphragm was stitched down during his first phase surgeries because the nerve controlling the diaphragm was damaged at some point).  They did not find anything that would keep him from having the final stage surgery.

Caleb was a trooper again this morning.  He was friendly and nice to everyone we dealt with.  He did cry when they gave him some oral medication to make him loopy.  The medicine was really gross and Caleb was only able to choke about 3/4 of it down.  Luckily, he is a light-weight and the medicine that he did get was more than enough.  He was so loopy - he was laughing and giggling and could barely hold his head up.  He did not cry when they took him away and the doctor said that he was still laughing when they put him out.  They gave him gas before they inserted the IV, so he didn't even have to get poked while awake.  This is why children's hospitals rock!

My Little Stoner

Tuesday, April 16, 2013

Pre-Operative Testing

Everything went really well today. Caleb and I made it to Ann Arbor safely and started our adventure. Our first stop was a chest x-ray. A chest x-ray on an infant involves velcroing them to a bicycle-like seat on the wall, it looks like some form of medieval torture. For a toddler, they get to sit in a chair with a velcro seat belt and get their picture taken. Caleb behaved perfectly and the x-rays were acceptable on the first try.

Our next stop was to meet with the doctor that will be doing Caleb's heart catheterization tomorrow. He checked him out and said his lungs had a little junk in them, but they were not bad. He did not mention postponing the surgery, so for now, we assume that what may remain of his cold will not hold us up. He gave me some information on what to expect tomorrow, said that Caleb looked great and we moved on.

The nurse checked Caleb out next. She made sure his ears were good and checked his blood pressure. Everything looked good. Luckily, Caleb's heart cath is first thing tomorrow. We need to be at the hospital at 7:00 am, but Caleb won't have to wait very long without eating. For some reason, not being able to give him food or water always bothers me. The nurse said that Caleb may or may not spend the night in the hospital tomorrow night. If things go well and we are both comfortable with it, he may be allowed to leave. If there are any complications, we will spend the night. Based on his past performances, I will be bringing my clothes with me.

The next step was a very detailed echocardiogram. Originally, the hospital had Caleb scheduled for sedation for his echo. Phil and I discussed it and thought he would probably do ok without sedation and the hospital allowed it. I was very happy because his echo wasn't until 12:00 pm and I would have had to ride to Ann Arbor with a very hungry, thirsty Caleb if he was going to be sedated. Plus, we felt bad knocking the poor kid unconscious three days in a row. We made the right call. Caleb watched a Thomas the Train video, was nearly perfectly still and fell asleep during the echo. They let me lay on the bed next to him, we snuggled and he never once cried. When he woke up, he did not find the echo gel very amusing however.  Caleb picked up the rag the technician had used to wipe off his chest and proceeded to do more wiping on his own.

Sleeping Through the Echo

After the echo, Caleb had an EKG. Taking off the stickers from the EKG was the only time he cried today. It was the fastest EKG that Caleb has ever had because he stayed so still. His oxygen saturation was 80% which is quite high for him lately.

Overall, we could not have asked for better results. Caleb did a great job and we haven't found anything yet that looks to be a problem with his health or his anatomy.

We left the hospital at 1:30 and went out to lunch. By then, Caleb was very wound up after not being allowed to yell, run down hallways or play in dirt (although he did manage to play in the toilet in the hospital restroom), so we went to play outside. We talked to a lady that was out letting her dog run. The similarities were too funny. She was throwing sticks to her dog and Caleb was picking sticks up out of the grass. Both the dog and Caleb played in the puddles.

My Lunch Date
Swinging Off Some Energy

We ran some errands and made it back to the hotel for dinner. After a bath to get the last of the ultrasound goo off and about 30 minutes of trying to convince him that he was ready for bed, he finally fell asleep. Thank you for all of your thoughts and prayers this week!

Sunday, April 14, 2013

Long Overdue Post

Because it has been so long since my last update, there is a lot to cover. I'll use bullet points so you can read what is interesting to you and skip the rest.

Surgery - Caleb and I head to Ann Arbor on Tuesday morning. He will have pre-op testing on Tuesday (chest x-ray, echocardiogram, EKG, etc). On Wednesday, he will have a heart catheterization so they can get detailed pictures of his heart and major vessels. If everything looks good on Tuesday and Wednesday, Caleb will have surgery on Thursday. Caleb has had a little cold, but it is nearly over. We found last Tuesday that he has an ear infection (he gets an ear infection with nearly every cold, just like his older brother). I called the nurse in Ann Arbor and she said that the cold may delay surgery, but he is doing really well now, so hopefully that will not be an issue.

What the Surgery Will Do - This surgery will re-route the major vein from the lower part of Caleb's body (the Inferior Vena Cava) so that it will flow directly to Caleb's lungs. The surgery should increase the amount of oxygen in Caleb's blood because all of his blood will now flow through his lungs. Currently, only a portion of Caleb's blood goes through his lungs. This results in lower oxygen levels and causes him to be bluish. It is especially noticeable in his lips, fingers and toes. The estimated hospital time for this surgery is 10 days to three weeks. The length of time is dependent on how long it takes for his chest tubes to stop draining. You will probably learn alot about chest tubes in the next couple of weeks.

Caleb in General - Caleb is doing great. He is talking and knows hundreds of words, most of them appropriate to say in public. His heart does not seem to limit him at all. He loves to play outside, even in the cold. He runs and climbs and does all the stuff that little boys do.

Updates - I will be updating the blog again at least daily starting Tuesday. I will try to post updates on Thursday as we get information during the surgery.

My Excuse for Not Updating Sooner - Several other heart moms and I have started a support group for families in West Michigan. We have been very busy working on connecting with families and developing our support network. We have delivered bags to Helen DeVos Children's Hospital for distribution to families whose children are hospitalized for treatment for heart defects. To raise money, Phil, another heart dad and I are running the Fifth Third River Bank Run on May 11th. To date, the three of us have raised over $1600. This is what has allowed us to get all of the materials for our care bags. Training for the River Bank Run has been taking up some of my time too - the run is 15.5 miles. Not the best excuse, but I am sticking to it!

How the Big Three Are Doing - They are nervous, but doing well. They aren't necessarily worried about Caleb dying, but they are really worried about missing him. The last surgeries were when Caleb was so young and boring, they didn't really play with him at that point. Things are really different now, he is their little buddy.

Thanks - We are so very fortunate to have a tremendous support system. We have been surrounded by love and prayers from every direction and that has given us an amazing amount of comfort and strength as we head into this next phase. We truly appreciate everyone that is thinking of us and keeping us in their prayers.

Thursday, January 17, 2013

We Have a Date

I talked to U of M yesterday and we set a date for Caleb's next (and hopefully last!) surgery. We will be in Ann Arbor on Monday, April 15th for pre-surgery appointments. Caleb will have a heart catheterization on Tuesday, April 16th and if everything looks good, the surgery will be on Wednesday, April 17th.

Tuesday, January 8, 2013

Update on Heart Stuff

Caleb had his routine 6 month cardiologist check up yesterday. His blood pressure, heart rate and EKG were normal for him. His oxygen saturation was about 80%. This is about what it was at his last appointment. His cardiologist said that his oxygen saturations will probably hold steady or continue to drop as he gets bigger and faster.

Caleb did very well at his checkup, but he is not a huge fan of the EKG. He did cry at first, but when the nurse brought out his favorite toy, the tears stopped. He even helped pull off the stickers.

Caleb's weight was 24.2 pounds and his height was 32 inches. That puts him at the 3.3 percentile for weight and 0.4 percentile for height. His cardiologist was excited that he was on the chart for weight. He is a good eater and will eat almost anything, although he prefers chocolate. It seems to be working for him. He can still wear 18 month pants and the 2T underwear I bought him for Christmas fall off, but we do get our money's worth out of his clothes!

The plan right now is to go ahead with his third stage surgery this spring, hopefully when the cold and flu season has wound down. With three older siblings in school, someone is usually sick in our house all winter long. We would like to have the surgery early enough so he will be healed well enough to enjoy his summer.

The cardiologist is contacting Caleb's surgeon and they should be getting with us soon to schedule the surgery. We will go to Ann Arbor for a heart catheterization and if everything looks good with his pulmonary arteries and lungs, the surgery should be the next day.

Scheduling an "elective" open heart surgery is more stressful than I expected. With the other two surgeries, they had to happen when they did and we didn't have any choice in the matter. This time, we have a say. Phil and I agree that Caleb is as strong and healthy as he can be right now and he doesn't seem to be suffering from the lack of oxygen yet, so now is the time. It will be nice to have the surgery complete because it has been on our radar for a long time now and is often in our thoughts.

Here are the surgery details. The surgery will involve re-routing Caleb's Inferior Vena Cava from his heart and sending his blood directly to his pulmonary artery which then flows to his lungs. This will result in all of his blood flowing through his lungs. Currently, only a portion of his blood gets oxygenated. This will improve his oxygen saturations, although they will probably never be as high as someone with normal blood flow. The good news is that there are alot of active people with this type of blood flow in their 20's that that are living normal, happy lives. It is anticipated that the hospital stay will be 10 days to a month.

I will post an update when we officially have a surgery date. Thanks for your thoughts, prayers and support for our family.

Nearly 29 Months Old - Little Boy Stuff

Because I have not updated in a while, there have been many new developments in Caleb's life. He is doing amazing and is a healthy little boy that enjoys doing little boy things.

Caleb got to participate in his second Dougherty Family End of Summer Tomato Smashing Event. This year he even got his own croquet mallet.

For Halloween, Maeve was a cowgirl and Caleb, Sam and Ella were a Mariachi band. Caleb even had a mustache. Unfortunately, drool is really hard on your mustache.

Caleb is now talking and singing up a storm. We understand more and more of what he says and he loves to sing "Happy Birthday". The words aren't quite right and he sounds like he has been drinking, but we know what it is.

Caleb has officially moved out of his crib and is sleeping in his big bed. He is doing really well with it. We have noticed that he needs his sleep more than the other kids did, but it does make bedtime and naptime easier. We have been told by other heart families and his cardiologist that this is common in kids with his heart defect and he will probably have more stamina after his next surgery. He goes 100 miles an hour all day long until naptime and bedtime and then he is ready to sleep.

Caleb is finally growing some hair. It is very fluffy and is always sticking out. He will be getting his first haircut shortly. That means he is nearly 2 1/2 and is just getting enough hair for a haircut.

We had a wonderful Thanksgiving and Christmas. The kids enjoyed themselves and made it through the two weeks off at Christmas with no bloodshed.

We are looking forward to a new year with all kinds of new adventures.