Cardiac Cath

I think Logan is catching on to what it means when we wake him up early, put him in the car without breakfast, and take a drive... a trip to the House on the Hill, aka Primary Children's Hospital.  He was very skeptical of what was going on this time.

He loved playing with the toys in the surgical waiting room, and was so ticked off when they took us back to our room because he still wanted to play with the train.  Although, getting weighed and measured was pretty exciting too because he got to see if he was as tall as Elmo and got to look at pictures of all his favorite characters as he got weighed. They are brilliant there with the kids!

 The lovely hospital get-up is a sure sign he isn't going to be a fan of what goes on.

 After meeting with the doctors Logan decided he would go ahead and drive himself down to the cath lab.  He was so funny.  Usually he needs a good dose of versed to calm his nerves, but he was so distracted by the toys we never even felt like he needed it.

 His anesthesiologist was one of my favorites so far.  He talked to us and put us at ease and then started working his charm on Logan.  He pulled out his I-phone and started playing games with Logan.  He got Logan to follow him out of the car, hold his hand and climb up onto the cath table without even looking back.  I kissed his head as he walked away.  It all happened so fast!

 Yes, that is him up on that huge operating table with NO drugs... only an I-phone!  I cried more than he did.  It makes it easier when you aren't handing a scared, crying child over to the doctors, but it is never easy handing them over and having to walk away.  This is Logan's 7th procedure in his short 23 month life where he has had to be fully sedated and intubated.  Doesn't seem fair. 

 The procedure took about 3 hours.  My stomach was in knots the entire time.  Thanks to our good friends the Quists we made it through those 3 hours.  Severin (Logan's heart friend) had just had a cath the day before and had to spend the night so they were still there that morning.  We hung out with them the entire time, and it was SO great to see Severin looking better.  His cath improved his color so much! 

My biggest fear sending Logan into the cath lab was that they wouldn't find anything "wrong."  Not that you want them to find anything wrong with your child, but we needed them to find answers into why he was having the symptoms he was having.  His cardiologist, Dr. Mack, was spot on in his guess as to why Logan was struggling.  His Pulmonary Artery had significant stenosis.  Dr. Gray tried ballooning it open 3 times, but it wasn't opening up enough so he ended up having to place a stent.  The stent is a metal mesh that can expand and contract with the artery.  It is something that will have to be replaced throughout his life as it is metal and won't grow with his body.  But opening that up with help the blood flow to his lungs significantly.  Dr. Gray also found the clamp that had been placed to close his Azgous Vein during his Glenn surgery had come off so this vein was huge, and working against him.  It took 2 coils to close this vein off.  Both of these things were causing him to de-sat.  He came out of the cath on room air holding his sats between 80-83% when he wasn't crying, and if he got really mad he would only de-sat into the low 70's instead of the 50's and 60's like before.

 The nurses LOVED him because he was so easily calmed by movies!  It was written in his charts that he is easily distracted by movies.  After the cath they are required to lay flat for 6 hours allowing the sights they entered to clot completely (they had to enter through his femoral artery in his groin and also in his neck).  So we watched Dora, Mickey's Club House and Elmo ALL day.  The crazy kid didn't fall asleep until 7:00 pm- of coarse.  Just enough of a cat nap to not want to sleep that night.  The bonus was when he finally fell asleep I was able to go visit with a fellow heart mom Chrissy and her sweet boy Matthew.  Matthew is 4 years old and waiting for his 2nd heart transplant.  He was absolutely delightful, and his mom is amazing.

 We raided the playrooms at 9:00 pm when he woke up and was finally able to move (thanks to Angee for the tips on which playrooms we could get to after hours)! 

 We walked every floor of the hospital, visited every fish tank, and tried to give him a break from his room as long as possible.  He would point at his door and say "go" all day.  This was the first time I have ever heard him say go.  So we would "go" as much as possible.

 The night was long, I didn't sleep a wink, but at least Logan did thanks to the big bed.  I would lay next to him because he would only sleep if he was touching me at all times.  We had x-rays taken early Wednesday morning and then waited for the doc.  Dr. Gray came back to check on him and said his x-rays looked perfect, the only concern is Logan was still a little puffy, but he said his body will probably take a few days to get use to the new pressures and blood flow.  So he send us on our way, and told us to have fun in Disneyland! 

We took Logan to the Forever Young Playroom on our way out so he left the hospital on a positive note.  He had a blast playing with everything, and didn't want to leave (but he kept tipping over from being so tired so we finally insisted on leaving).  Hopefully the toys are all he remembers from this visit to the House on the Hill!

Since being home Logan has been pretty tired and sleeping more, but seems to have better color and not so many blue spells.  We are trying to let him heal and not run and play too hard yet, but it will be fun to see if this makes a difference and helps give him the stamina and oxygen to run and play like a 2 year old should.

Just had to show his poor belly.  His skin hates all those blasted stickers they keep on to monitor him.

Cath is Scheduled

I have no patience, and for what I lack in patience I make up for in anxiety.  I finally just called the scheduling lady for Logan's cath because I couldn't handle waiting for her to call.  His cath is scheduled for a week from today, Tuesday the 17th.  I will post an update then. 

Cardiology Appointment

Well, we didn't make it a year in-between cardiology appointments, but 6 months isn't too bad.  When we called Logan's cardiologist earlier in the year with concerns of his saturations dropping and him sleeping more he decided he needed to see us sooner than October.  We had that appointment on Monday.

We weren't sure how Logan would do with the Echo.  We knew it could either go really good if he decided to cooperate or really, really bad if he got nervous.  We were prepared with movies, suckers, books, cars, bubbles, Ipods... (you get the picture), we had an entire bag of tricks ready!  We didn't need any of it, he was AMAZING or "golden" as the tech doing the echo said.  He just layed there chillin' watching Dora and holding my hand.  The tech was able to get good images of everything they were needing. 

Now on to our visit with the Dr.  He was pleased with the Echo and said his heart was functioning as it should.  But then he started addressing my answer to the little paper you fill out for every appointment about if symptoms have changed.  Yes, he has blue spells, yes to change in breathing and exercise intolerance, and yes to a few more.  He had watched Logan dance around and saw how winded he got.  And I just mentioned how winded he gets simply walking 10 feet.  I thought this was normal single ventricle kid behavior.  I knew they had lower endurance with so little of their blood being oxygenated.  But Dr. Mack said Logan sounds extreme and he is getting too winded.  He literally gasps for air after any exertion.  He should be able to play a little more "normal."  His saturations have dropped from 86% when we were there in October to 77% this visit.  So after discussing many different options Dr. Mack felt like Logan needs to be sent to the Cath Lab to see if there are collaterals and narrowing in the Pulmonary Arteries.  After reviewing his x-ray he thinks the Pulmonary Arteries might have stenosis or scar tissure around them.  He also talked a lot about the Azgous Vein that he thought could be working against Logan getting more blood oxygenated. 

So this is where we sit... waiting for that DARN scheduling lady to call us to schedule his cath.  I know you heart moms know just how I feel.  I kind of thought maybe in a month or so they would get us into the lab, but Dr. Mack wanted us to monitor his saturations/HR a little more closely this week while he was sleeping and at different times.  So we have been communicating with him all week.  When I talked to him on Wednesday he had talked to Dr. Gray in the Cath Lab and was trying to get Logan in in the next week or two before we leave out of town on the 22nd.  This alarmed me that he was trying to get him in so fast.  So I have been a STRESS case all week.  I take my phone into the bathroom when I shower so I don't miss the scheduling call because who knows if you miss it when you will get back in touch!

  I have been OBSESSED with Logan's o2 sats.  I feel like I have been nieve and ignorant and completely negligent in monitoring him because I haven't monitored him at night for MONTHS and I only spot check him during the day for a few minutes while he is sitting on my lap.  The first night I watched his numbers as he slept, I just had that sick feeling in the pit of my stomach as I watched him drop into the 60's and see is HR go up to try and compensate.  The poor little guys heart is working overtime trying to compensate for lack of oxygenated blood.  I tried putting oxygen on him yesterday as he was again in the low 70's and dipping into the 60's with any exertion and I can not get him to leave the cannula on (or let me even get the cannula close to his nose)!  If he sits on the couch and watches a movie his numbers will get into the high 70's... so we are watching a lot of movies, doing blow by at night, and praying that they will find some answers in the Cath Lab soon. 

Look who went to Nursery!

It would probably be more appropriate to say, "Look who's mom finally allowed him to go to nursery!"

I had a friend over with her little baby a few weeks ago, and I couldn't believe how mean Logan was!  He wouldn't share and wanted to hit the baby... sheesh, what kind of mom am I!  Then it dawns on me, why would he know how to do those things... he has never had to do it before.  His brother and sister (okay and mom) give him whatever he wants and let's be honest he doesn't get out much!  So last Sunday when I was sitting home from Church with him and he was asking to watch a movie at 9 am, I decided it was time for Nursery.  He needs social interaction, and he needs something to do other than watch movies. 

My ward created as "germ free" of nursery as possible for him and told me to just let them know when we were ready to bring him.  The toys are only used for his nursery and there are only 5 kids (including him) in the nursery- all the other kids belong to the Primary Presidency and they have promised they won't bring them if they even suspect they are sick.  And heck, I figured he has already had RSV so why not!

He was so excited when I told him we were going.  He grabbed his essentials... Binky, blanket, and monkey and was ready to go!

 He went in looking like a baby! 

 (I did confiscate all his items before he left the car)!

 And came home looking like a big kid!

 Look at him walk with such confidence!  He loved nursery!  His teacher is AMAZING, and was so sweet with him.  He loved singing time and snacks, and didn't want to leave!  Oh, what was I so worried about!

Hello March

This is how we welcomed the first day of March... Our biggest snow storm of the year! 

The kids were thrilled, and this was the FIRST time Logan has been in the snow. 

He LOVED it!

 I would take him inside to warm him up and get color back to his lips and hands and then he would want to go right back out!  It was so fun to see him do things with the other kids. 

Good Riddance February

I know February is LONG gone, but just to be clear we are all very glad February is behind us!

It started out just fine....

We celebrated CHD awareness week and sported all of our red clothes all week.  My eyes have been so opened this last year and a half, and I hope to spread awareness of CHD's in some small way.

As a "heart mom" there are a few things that scare the hebee jeebees out of you (okay more than a few).  Top of the list is handing your child over for surgery and all that comes with that.  Surgery set aside the thing the doctors drill into your head that you NEED to protect your baby from is RSV.  A respiratory virus that is BRUTAL on any baby, but for a heart kid is never good.  To help protect our kids from this virus most heart kids will qualify for a shot called Synagis.  It is a monthly injection of antibodies that help protect against RSV... a very expensive monthly injection I might add- $6,100 a month.  Yes that is per month and no I didn't add an extra zero.  Logan qualified for 5 of these shots... you do the math!  We hit our out of pocket max the first week of January this year!

Anyway, Logan was lucky enough to contract RSV and pneumonia at the same time. 

 This is kind of how he felt all month!  Just YUCKY!  Thanks to the Synagis injections his case didn't require hospitalization.  We did visit the suction clinic at the new University of Utah Hospital in Daybreak- we were their very first patients, and got the royal treatment (although I don't think he thought it was that royal). 

  

 Despite it all Logan surprised us all and recovered really well.  His pediatrician saw him almost every day and kept waiting for him to get worse and he never did... yeah and a surprise to us all!

 These pictures made me laugh because Logan has to sit inside of EVERYTHING!  Whether he fits or not, he will try to weasel himself in there.

 Goodbye February, and all the yucky germs!



No More Sitting on the Side Lines

I feel like for the most part I have accepted the reality of Logan's heart, and I am okay with our reality. We have adjusted our lives as needed, but every once in awhile I feel the "unfairness" of it all. This has happened a few times in the last couple of weeks. One time being when the gym I work at hosted a Triathlon. It was for adults and kids. It was an indoor tri, and I was in charge of the biking segment. It was so fun to see people achieving things they never thought they could. I saw so many people do something for the first time, the kids actually made me tear up as they rushed from the pool, jumped on their bike and pedaled their little hearts out. My first thought was Logan will never be able to do this, but then I thought.... why not. Maybe he will be able to do this, he might not be the fastest, but I will let him try if that is something he wants to do.

Which leads me to the title of my post.... No more sitting on the side lines. Yes, Logan is still young, and there are lots of things he can't do. But I am tired of him having to sit on the side lines because of his heart. Ashlyn is off track right now, and is such a good sport about being okay with being home. We don't go many places because we don't want Logan to get sick, or he is constantly taking naps! But last week the kids asked when we could go swimming again. In one of my moments when I was thinking I was superwoman I decided we could go swimming. So I attempted to take all 3 kids swimming by myself. I usually will leave Logan with his babysitter when we do things like this, but I thought again how unfair it is. He is either at our house or his babysitters house ALL the time. The poor guy is bored and never gets out! So I brought him along. He was in total awe just walking into the rec center. Looking at all the people and things. He got really nervous and made me hold him. When we got to the pool he stared with his mouth open. He was so scared. I couldn't get him off the bench. I didn't push him, and we sat and watched the kids play for a minute. I kept asking if he wanted to go play and he would aggressively shake his head no! After about 15 min. of watching I convinced him to venture to the edge and just splash the water with his feet. Anyway, the whole hour we were there he never dared venture into the water unless I was holding him. I know this is "normal" for kids... water is frightening. But the whole experience left me feeling the "unfairness" of his heart defect. He was more nervous than normal because he NEVER gets out. Then when he finally got wet he turned so blue from the cold I had to wrap him in a towel and try to bring some color back to his lips and limbs. All the while his brother and sister where running around crazy completely oblivious to any kind of discomfort. As we sat by the side of the pool I realized I don't want Logan sitting on the sidelines his whole life. I want him to be able to live and run around crazy with his siblings. Brad and I talk all the time trying to figure out how to make this happen. How do we protect him, but at the same time not make him afraid of everything.  We want him to know his limits, but at the same time we don't want to make him paranoid and scared of trying anything new. When someone has that answer will you please share it with me!

As for now we will keep him in the game as much as possible.
Here he is playing the X-box Kinect- he won't let you think for even a minute he is too young to figure that out. It is a riot watching him jump and mimic what his siblings do.

And the car slippers were a gift from his babysitter... he insisted on wearing them ALL the time when he first got them!  He walks around the house saying "vroom vroom" holding a little match box car almost constantly! 

CHEESE!!  Look how big I am getting!

We took this picture on the 3 year birthday for a little Heart Angel Jake (his blanket is barely showing, but he was displaying it!  That is what you get when you have your 7 year old take the picture).  His mom started an incredible service of giving "Jakey's Blankies" to heart warriors.  Logan LOVES his Jakey Blankie.  To donate to this awesome service visit the button on the side of my blog for Jakey's Blankies.