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