The Journey of a Sweet Little Boy and His Special Heart

Thursday, April 19, 2012

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.

Tuesday, April 10, 2012

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. 

Sunday, April 8, 2012

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.