Annual Cardiology Tests...

This year Braden's cardiologist wanted to add in another test.  A stress test.  So, we had to spread his testing into three visits.  Otherwise he would have been there all day.

Aug 2, 2013 First he had his echo appointment.

It was a tech we didn't know and it went quickly. It's hard to sit for an hour and not have her be able to tell you anything. He watched the movie and we watched the echo screen. 

8/21/13 A few weeks later we went in for a stress test. It's the first time he's ever done one. He wasn't nervous, I was for some reason. They started with some breathing tests. They were amusing to watch. 

Blood pressure

Getting a resting EKG 

He had to blow like he was blowing out candles, huff and puff and a few others.

Then they got him all fitted in his mask. The blue cuff was his blood pressure, he also had a continuous EKG. The mask sent readout straight to the computer. It was so cool to watch. 

First he started out walking at a slow speed and as the test went on it got faster and faster and the incline went higher and higher. 

He got going pretty fast! The MA had to stand at the back to make sure he didn't go flying off. 

All in all he ran for about 15 minutes. He wasn't tired but his legs were burning. Whose wouldn't be?? The doctor performing the test said he did amazing on it. He said there's a standard for CHD kids and Braden was above "normal" kid standards.

8/29/13 Finally it was time to have his actual appointment with his doctor. He was weighed and had his blood pressure done. He had been doing math homework in the waiting room and when his BP was a little high we blamed it on that. Dr Nowlen was pleased with his test results. He let us read the report from the stress test. Braden tested at 119%. Well, well above normal CHD and "regular" kids. There is still some turbulence in the areas where the repair was done and because of that he will see us again in a year. Every year we hope to go to 2 years in between appointments. Maybe next time. 

I love that we usually end up chatting for a while after the appointment is over. He's been so great with us. Can't believe we hit the 10 year post op anniversary this month! We are so blessed that Braden is doing as well as he is. 

Berkley's Trip to the Cardiologist...

Back in October at Berkley's 6 year well child his pediatrician finished the exam and casually said to me, "He needs to see a cardiologist, he has an irregular heart beat." And left the room.  While he was getting dressed I had a second to process, and was still in denial.  This could NOT be happening again.

As she came back I asked her to repeat what she said, she did and I think I nodded or something. Anyhow, of course on the way home I call Rusty bawling. He did the logical thing, took Berk over to "Dr. Pops" and he listened and thought he could hear something too.  I called the trusty APCC the next day and booked the first available with Braden's doc at the PCH office in Dec.

The day came and we pulled him out of school and headed to Phoenix Children's Hospital to the office there. We had big bro Braden give him the low down on the office, what would happen etc. He wasn't terribly nervous, he was extra excited to get to play his iTouch in the middle of a school day.

 Height and weight.

 EKG- he laid very still for this, thanks to some insightful words from big brother.

 I think it is funny that they do the blood pressure on not just one arm, but both as well as BOTH legs. That's why they are the specialists I guess.

 After trying to get the stickers off himself, he let Daddy help.

 He asked me to take a picture of his "Polka Dots"that he got from taking the stickers off. This was another thing he was warned about from Braden. Pretty cute.

When I scheduled the appointment back in October, I had made the decision to wait to see our regular Dr instead of the first available. That's why it took so long to get it. Anyhow, the night before the appointment the office called and said there was a scheduling conflict and could we please see the NP instead. I flipped my "Mama Bear" switch and said "No, no we cannot!" I am sure you can understand why, but the lady on the phone needed convincing, because he was a new patient with no history there.  When I explained that his older brother had 10 years experience there, she put me on hold for about 10 minutes, and when she came back she said it was fine, they would leave my appointment where it was and with Dr N. So, imagine my surprise when after the EKG, some person I didn't know walked in!

He introduced himself as Dr N's NP, and told us there was a newborn baby with a CHD that they were trying to get a bed for at PCH, and Dr N was the one in charge of intakes that day. Of course, we understood, and he told us we would still see Dr N, it would just be a bit.  Fine by us! After the exam the NP said he didn't hear any abnormal rhythms. The EKG showed a normal rhythm as well. I had been trying not to stress about the whole thing, but you can imagine the weight that was lifted right then. A few minutes later in strolled Dr N, he listened and listened to Berk. He had him sit up, lay down and listened. He concluded the same thing. No irregular heart beat. He said, our PCP very well could have heard something at the time, but since these types of things are "electrical" (vs Braden's which was "structural") sometimes they work themselves out.

Of course, being Dr N, he told us what to watch for in the future. In case it happened again, but he reassured us that currently Berkley's heart was completely normal. We then chatted for about 20 minutes with the NP about Braden. It is always fun to feel like your child is a doctor's favorite patient. So, I am not sure why we had to go through this little trial but we did, and I have to give myself props for not completely losing it every time I thought about what the outcome could have been.  Yipee for healthy hearts.

Cardiology Visit...

Well, our once a year cardio check up came and went without a hitch.  He actually gets excited because he knows he's gonna get some quality Mom and Dad time. The appointments generally last about 3 hours.  After his height and weight (53 inches, 60lbs 4 oz) we did a BP or two, it is usually hight the first one because he is stressing a little. Then we went back for the Echo.  It went well.  I always love the look on the tech's faces if they haven't seen his heart anatomy before.  Its different to say the least.

 Blood Pressure

 Getting his Echo.  He was so still and was watching the tech so closely.  He would count when she was taking a picture but eventually stopped because she took a lot...

Then we went back in the room for an EKG. and waited while the doc reviewed the Echo.  He said everything looks the same.  Still some concern over his Pulmonary Artery. It was stretched during the surgery and now it is having a little bit of turbulence as the blood flows.  It isn't causing him problems so it is just something we watch yearly.  The Doctor remarked that while he was reviewing the echo another doctor came by and remarked, "Oh No, what is wrong with his Mitral valve?" Dr N laughed, and explained that this was the good version of it.  Braden's valve looks like a chunky golf club, where normally it would look like a nice pretty slant.  Hard to explain, but it definitely does NOT look right, but it works right, and that's all we care about!

Next year we scheduled the treadmill EKG. in addition to the usual test just to make sure he is able to continue to play all the sports he wants to.  After asking Braden if he had any questions we chatted about life a little and we were done.

Oh, and of course we had to do our annual Dr./Pt. photo op.We thought it was funny that Dr Nowlen had Braden hold his chart! And cause he's such a cutie, here is a picture from back in 2004.

Congenital Heart Defect Awareness!

I am so so so far behind in my blog.  I know you don't care, but I do.  I have been making about 30 shirts for the upcoming Ethan's Run.  I couldn't NOT at least point out that Feb 7-14th is CHD Awareness week and that FEB 7 was Braden's 9th Post Op Anniversary!  Love our CHD kid and our extended Heart Family! A big thank you goes to all the HEART MOM's who wrote to our governor and had her declare it a state recognized week!

Cardio Visit...

All the usual things happened... Height, weight and Blood Pressure. EKG followed by another BP (cause one nervous little boy had a really high one the first time) and off to the Echo.  Then back to the room for a check-up by our favorite cardiologist Dr. Nowlen.We always spend more time chatting and catching up than doing the actual exam. 

We always have a good few hours while we are there.Braden is so helpful too. He was so funny trying to pull the EKG stickers off. Those suckers are so strong, his skin stretches inches before they let go! Things look so good and we are off the hook for another year! And, because I find it so amusing, here is the latest volume of Braden's chart there.  Seriously, more than four fingers tall?!?

Cardiology Update...

Braden had his yearly visit with the Pediatric Cardiologist last week.  As usual, we were there for about 3 hours. Man, I forget just how long it takes to do all the testing! First I had pages of paperwork to fill out.  After a short wait we were called back to do height, weight and blood pressure.

I could tell Braden was nervous because his BP was kinda high, so we told him to take a deep breath cause there was nothing to worry about. Then we headed into the room for his EKG. This is the first time he has really noticed or cared about the print out of results. He thought it was cool that his heart made all kinds of 'mountains' on the paper.  But then he had about a million questions of how the stickers on his skin connect to the cords to make the print out.  Boy Howdy he had a lot of questions!

There is always a big 'Take the Stickers Off/ Leave them On' debate. See, they are super super sticky and kinda pull to get them off. Ultimately, we pulled them off. Just for my records, this is the first year they also put an EKG lead on his legs. Which of course Braden noticed and wondered why. It is AMAZING just how fast an EKG goes when the patient stays still. I can remember when he was a toddler this test taking 30 minutes versus the minute this years took.

After the EKG we waited and waited to be pulled back to the Echo room. This always takes some time as the Echo Tech and the doctor have to go over his anatomy, so she knows what she is looking at. He has a "normal' four chamber heart, but there are baffles and other things in there that make it look odd on an Echo.

Finally, it was or turn.  As he gets older it is harder and harder to see the detail of what we could see when he was young. But we had an amazing tech, that's been there like 20 years so she was good.  Braden was so calm and cooperative, not like last time when there was scratching and blood involved...

The tech took her time, looking at blood flow, an all the other mumbo jumbo heart stuff and then we were done.  After the Echo we went back to our room and waited for the doctor to review the echo and come in for the exam.  Of course we sat and waited and waited and waited. And then I started to get that panicky feeling I get anytime we're there. After about 45 minutes of hanging out Dr. N came in and was all smiles.  I've said before this man has ZERO poker face, so we generally know right away if it is good or bad.

We love to see our peds cardio doc. He has been through it all with us. Encouraged us and supported us when we wanted to go to Stanford for B's surgery.  As grateful as I am not to see him more than once a year, we miss him! So we usually spend most of the appointment chatting about non-heart related things.

During the exam he checks the pulses in Braden's feet, legs, arms and hands, check his overall health and then listens. And listens.  And listens and then he listens just a little more.  Braden was so quiet, answering most questions by looking at me first.  The Echo showed a blood flow thing (I'm gonna use 'thing' cause I can't remember the term exactly, and you don't really care anyways) having to do with the Coronary Vessels. We've never talked about the Coronaries before. They weren't part of his diagnosis. From one view you could see a 'thing' but none of the other views showed it. So, Dr N had 3 other docs come in to decide if it was something or not. They all decided it was a not.  Nothing of concern, just something to watch and be mindful of next exam.

We hadpreviously discussed having his next exam in two years but Dr N is super cautious so he wants us to come back in one year.  Braden will do a treadmill test then to make sure as he is getting older, and more active in sports that his heart is able to keep pace with him.  I think it will be cool to watch.  We discussed Braden's limits as far as sports go. He has none per-se, but he was pleased that B was doing diving instead of swimming and baseball as opposed to football.  After a few more minutes of chatting (he wants to meet our other kids sometime) we were all done!  It is always so awesome to leave with the words "Magnificent" and "Miraculous" and "Amazing" being used to describe his heart health.

Braden and Dr Nowlen

We are truly grateful for our CHD kid that defied all odds and the army of people who took care of him along the way to get him to where we are now!  Thanks APCC- we love you all, see you in a year!

Perspective...

So I don't know about you, but there are certain themed blogs I love to follow. While it is sewing and cooking for my SIL, or crafts for my friend; I tend to look at other 'Heart Mom' blogs. When Braden was born I knew of one other person who had a heart baby, but I didn't know them. I had no support system in place, besides a very caring extended family eager to learn everything about how to care for this precious baby.

This week marks the 6th anniversary of Braden's 2nd and final Open Heart Surgery. This surgery was specifically to repair his Mitral Valve that was still leaking even after the first repair. While our first stay at Stanford had been extensive, we were shocked and excited that he healed so quickly the inpatient stay was only four days.

I remember,despite being NPO (no food or water) all night, that he was in such a good mood that morning. Even being a good sport taking pictures in the hotel before we left.

I remember having our final pre op meeting with the surgeon, Dr. Hanley, and being grateful that Braden was in such amazing hands, yet hating that we were back there again.

I remember him walking around the 'day room' where you waited your turn for preop, with his cute diapered buns hanging out of the back of his tiny gown with pink animals on it. I remember him cutting teeth and how it bugged him more than the surgery. I remember that since he was 10 months old, he got an actual tray of food brought to him- it was so cute- it had jars of baby food and a bottle of formula on it. I remember he didn't sleep at all after they extubated him until the afternoon we left. Meaning I didn't sleep at all. I remember him sitting up in his crib in the step down unit two days post op and how cute he looked reading his "Monkeys Jumping on the Bed" book and playing with toys. And I thought he was Superman.

And I remember when we brought him to the hotel, my MIL asked if they knew we had him out of the hospital.

So while I am blessed and lucky to have all this behind me. I am so grateful that I can be there for new friends going through Heart Trials for the first time with their precious babies. Some of the blogs I follow are strangers but I still cry with the setbacks and dance with the progress. I think back to the support staff at the hospitals back then and wish I had known a familiar face among the parents there too. Some of the stories I follow are very personal to me, because I grew up with the parents, or went to school with them. And I hope my words of 'wisdom' from everything like "bring slippers with soles in them" to "become friends with the Charge Nurse" help some. Being a HeartMom makes you an honorary MD (Mom Doctor). My friends used to laugh that I needed a white coat for all the medicines, dosages, procedures I knew.

So, it is just amazing to me that this little sick kid started FIRST GRADE today. He is getting so old. He was so excited last night he couldn't fall asleep. And this morning the only concerns he had were over what shoes to wear. He walked inside on his own, no tears, no hesitation. He ate lunch at school for the first time ever, and sat at a table of kids he didn't know. He tried hard to remember the names of the kids in his class. And he only gave me a minor panic attack when he forgot where he was supposed to meet the neighbors after school for pick up. After searching the school, he was still with his teacher and had finally remembered the spot. Whew! I am so proud of him. He is so happy to be back in school. I am enjoying this last week of just Berk time while it lasts. I am set for induction on the 17th - if this little guy doesn't mind his Momma and come sooner.

Unwanted Flashbacks...

Tommorrow, Tuesday, Braden is having a surgery to fix an umbilical hernia that he has had since birth. It is  a very routine surgery that we have been putting off for, well forever.  It should take less than an hour in the OR and the surgeon said the actual repair only takes him about fifteen minutes.  But there is always that little nudger in the back of my mind- what about his heart? The cardiologist of course cleared him for the surgery - although he listed him as a 'mild risk'. Mild risk? Don't tell me that! I know he is just super cautious with Braden, which I love, but doesn't he know I can't take Zanax when I am pregnant?! So we went to this little preop teaching class they have at Banner Desert. They show the kids a movie, let them walk to the OR, see the post op area, ride in a wheel chair and then they show them all the stuff that will be used on them.  So Braden left that class with a scrub hat, a surgery coloring book, a surgical mask and then they have them pick a mask. It's the ones that they will breathe in while they fall asleep in surgery. It's pretty cute, they put scented goo in there so it smells good (Braden chose bubblegum, not my fav.) All in all he did really well. When they demonstrated some things that would happen she asked Braden to recall what they had called it. First they 'gave the arm a big hug'--Braden's answer, "You're taking my blood pressure" Second they 'checked out the heart' Braden's answer "You are getting my O2 sats" and Third they 'checked how hot you are' and Braden says, "Oh you are just taking my temperature, I do this all the time."  It was so funny.  So why is it, through the whole thing I am playing a slide show in my head. When I see him put the mask to his face I flashed back to the PCH PICU, the first time Braden was in heart failure, and required oxygen and got his feeding tube.
Then as they showed us where we would say bye and they would go with the nurses to the OR, I was remembering that I have not just done this once, but three times. The first time was easiest, since I was exhausted beyond all belief and my good doc's game me a anti anxiety medicine. The second time I was a basket case, since it was for his first open heart and I knew the surgery was going to be 10 hours or more and really risky. The third time I think I was in 'get it done' mode. Plus Braden was on really good drugs  that made him loopy and hilarious to watch- he even said "OOOOOoh" when the OR doors all swung open.And while I am glad we won't be sitting in this waiting room again for hours and hours and hours. I am even more glad that afterward we get to take him right home, instead of having to worry about all this for 3 weeks after...

Keep us in your prayers and wish us luck! I will post an update with pictures tomorrow!

Knock Down Drag Out Fight...

It shouldn't be this hard. I mean really. In the scheme of things this is just about the easiest, pain free doctors visit any kid could go to--- but somehow Braden still managed to make his yearly cardiologist visit a day to remember. (So much so that I don't even have any  *gasp* photos to go along with this post- so I will bust out some oldies as filler.)  It is probably my fault, trying to be efficient I scheduled his dental cleaning this week too. Which he had NO CAVITIES, but in order to find that out it took me, the dentist, and three- YES THREE- hygienists to hold him down to check. Seriously? SO he was more than a little traumatized going in to today.

It is one of those catch 22's. While it is an amazing blessing that his health is good enough to only require yearly trips to the peds Cardiologist- that also means it doesn't happen frequently enough for him to remember what goes on there. Plus they moved offices and so it was a new place for him, and the nurse that took us back was new to us. I should have known when we had to tag team him to get him out of the car, but I thought once we were there it would be smooth sailing. 

Wrong.

So here is the rundown of his visits. Height, weight, blood pressure check, EKG, Echo, and finally the actual exam. As they told us today they are all 'stickers and cords' nothing to hurt or poke you with there. He cried about taking his shoes off to get weighted, what? And then looked like the ruler was gonna chop his head off when he got measured. And of course they weigh him in Kilos and measure him in centimeters, so have fun doing that conversion- oh fine, I did it for you, he was 44.something pounds and just over 45 inches. 

(last year's EKG)

Once we got into the room for the BP and EKG he freaked. Kicking & screaming, and he full on punched me! The nurse was great- sensing a brawl was ensuing he left the room and came back with stickers, a robot toy and a play stethoscope. We calmed him down, after forcibly removing his shirt for the tests and then he was great. He sat still for both and was fine. 

After a LONG wait the ECHO tech was ready for us. Can I just say first of all, those machines are the coolest thing ever. And to watch the techs work them is mind blowing. There are a million knobs and switches and a whew, here is a photo. No wonder they go to school for so long just to do one machine! Anyways. After a little scuffle to get him onto the table, biting was involved, it wasn't pretty...  But the tech was a tough lady who took NO bull crap and she told him to lay down that they had to get an image. Finally after crawling up on the table with him he settled down and they got a good looking echo while he watched Kung Fu Panda.  

After the tough tech we went back to wait for our doc. We had been there for over two hours and I was BORED- luckily Rusty had his Itouch to keep Braden amused and I played on my Iphone enough I ran the battery dead. Sad story. So since Braden's defect is really rare, and his outcome of such great health is even rarer, they always drag any medical students in to see him and hear his heart. I wish I had taken a picture of his chart. This one is about 3 inches thick, and I know he has at least one more chart in storage.  Crazy.  He listened and listened. They check the pulses in his feet and listen more. Then the med student listens.  We are continually blessed and amazed at how well Braden s still doing. He isn't on any heart medication and under no restrictions. We will go back again in a year and then the doc said we may even go to once every couple years. Amazing. 

He is such a great doc. He even told us this funny story about how his daughter had done a google search on him and a photo of he and Braden came up, and his daughter thought that he was pretty cool to be on google. So funny. So we are done for another year, the bite marks on my arm are healing, the scratched on both Rusty and I will fade and we will somehow try to think of a way to make it less terrifying for the next time we go! Now we just have to figure out how we are going to get Braden to his consult with the pediatric surgeon he has coming up (for a umbilical hernia that never healed). That outta be fun...