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

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!

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.

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.

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.

26 Months Old

Two years ago today, we brought Caleb home from the hospital after 72 days, four surgeries and enough stress to make a large amount of my hair to fall out. I never thought I would say this, but now our time in Ann Arbor seems like a dream or something that happened to someone else.

Caleb is still doing great. He is back to daycare now that the big kids are in school. He is talking all of the time now and sometimes we understand what he is saying. He is growing out of his 12 month clothes. He is still a flirt and far more outgoing than any of the older kids have ever been.

I realized how much we take for granted when we were on vacation a few weeks ago. We were swimming in the hotel pool and someone asked about his scar. At fun night at school last week, a little girl asked about his scar. Hopefully, Caleb will be proud of his scar. It comes up so high on his chest you can see it unless he is wearing a very high collar. I am assuming that being Phil's son, he will come up with some bizarre story to tell people. It will probably involve hand to hand combat or a shark attack. I am guessing that he will use it to his advantage with the ladies!