Saturday, February 11, 2012

CHOP Part 2 and Gabba Gabba too

Disclaimer: My medical terminology may not be 100%.  I encourage any of my nurse or heart friends to correct my descriptions below.

Our new plan of action for Caelen's heart will be to return to CHOP in June for another cardiac cath combined with an MRI.  CHOP has the ability to do them both at the same time.  Their cath lab is literally right next door to the MRI lab and they have a magnetic wall that opens up, the gurney from the cath lab moves sideways on a conveyor type system and the MRI is completed, then slides back into the cath lab.  How cool!!

The reason for doing the MRI with the cath is that the MRI can actually see the flow in any collateral arteries (which could be stealing oxygenated blood from the lungs), and determine whether they need to be coiled off or not.  The cath lab can only see that there are collaterals, but not how much, if any flow is inside.  Then, the Dr. can literally coil the collaterals off.  Imagine the inner spring in a click pen, and that is exactly what the coils look like.  It's basically cauterizing the arteries to redirect the blood flow.  In the picture below from his cath last year, you can see the coiling on the right.


Based on the findings from this next cath, the Drs at CHOP can determine whether Caelen needs to have his Fontan in the early fall, or if we can wait until the late spring of 2013. 

Speaking of the Fontan, Dr. Rychik, the head of cardiology at CHOP and the same Dr. we met with on Thursday, reviewed the Fontan with us and reminded us that Caelen is still a high risk going into the surgery.  He said it's not the surgery itself that is so complicated, for Dr. Spray (their head cardiothoracic surgeon) this is actually pretty straightforward, (well for a brilliant cardiothoracic surgeon it is) it's the complications that arise from the surgery and the chest being opened.  For some patients, the chest cavity does not like being messed with, even for simple procedures.  So tack on invasive open heart surgery onto a chest cavity that obviously does not seem to like being messed with, and you get complications similar to pleural effusions - fluid on the lungs.  Dr. Rychik all but said that we can expect them again with the Fontan.  I'm not going to go into all of the complications that can arise, because I am willing them not to happen this time.    Anyways, this can add time onto the hospitalization.  So I think he just wants us to be prepared for what could be another prolonged stay when it does come time for the surgery.

On a more positive note, Caelen is walking everywhere.  He is so funny walking the halls like a drunken frat boy.  But each day his step gets a little more stable and he carries bigger toys.  He is also saying mama again like crazy, but now he has finally added dada.  Martin is so excited to hear his name being called.  It's awesome because I know Martin has waited so long to hear it, especially since Caelen has been saying gabba gabba for a few months. 

For those of you not familiar with Yo Gabba Gabba, it is a kids show on tv that is like baby crack to Caelen.  It's the first thing he says in the morning and the last thing he says at night.  He asks for Gabba all day long.  It's cute, but annoying, because he cries when you say no.  The trick is to ignore the cry, otherwise Caelen wins.  This is the only area where I have any control.  Caelen runs this household.  There is no discipline.  He can understand how to lower the volume on the ipad when you tell him, "too loud."  But he ignores us when we tell him "No."  I guess this is just toddler?  

Here is a clip that I got this morning of Caelen walking down the hall after he got the cheerios for himself again.  Apparently I need to learn how to hold the phone when recording.  Sorry for the angle.



He's still not eating anything nutritious, but he can eat a box of cheerios a week.  If only we could figure out how to make them healthy?  But hey, he's eating.  So we continue to plug along.  Have a great week and I'll try harder to work on video angles for the next one.

Love, Katye, Martin & Caelen

Thursday, February 9, 2012

CHOP Part 1

Good afternoon!  We are back after a short trip to Philly and everything went well.  I am only going to do a short update for now since we are unpacking entirely too much and Caelen keeps hitting keys, but we were very happy with our visit.  The echo and ekg were good and we have the start of a plan going forward.

Thanks to all for your positive vibes, they worked.  I will try to do another update tonight after C goes to bed.

Love, Katye, Martin & Caelen

Monday, February 6, 2012

And he's walking!

It's been a while since Christmas and for the most part Caelen has been battling recurrent double ear infections, pink eyes and colds.  But I am happy to say that we have something more fun to talk about, Caelen is walking!!!!

Last Sunday he finally decided to give this walking thing more effort.  He started taking a few more steps, then on Monday, a few more, Tuesday the same, and now he is walking.  It's so cute to see how much confidence he gains every day.  I got a video if him last week in the driveway, he's hunting for cheerios.  Here it is:



We head to Philly on Thursday to meet with the Cardiology team at Children's Hospital of Philadelphia (CHOP).  It's only a morning trip, so no hospital stays, lol.  They will get a chance to meet Caelen and run a few tests like an echo, EKG, bloodwork, etc.  I'll be sure to follow up on here with their thoughts.

Until then, we hope everyone has a great week. 

Love, Katye, Martin & Caelen