Sunday, September 20, 2015

Micah's Fourth Cath: Update and hospital life

It's now Sunday afternoon and Micah's been in the hospital since Thursday morning.  We're at the Heart and Kidney Unit at Children's - which is the step down unit.  Right after the cath, Micah was sent to the Cardiac Intensive Care Unit (CICU).  The main reason we're still here is because his breathing needs to get in order.  Here are some photos and videos from our stay, to help give you an idea of how he's been doing. 

Pre Cath: Thursday
Post Cath: Friday (in the CICU)

Post Cath: Saturday (in the HKU)

Post Cath: Sunday (in the HKU)
Finally removed his oxygen tube!

He's had a pretty solid good night sleep in the HKU both night.  He's been eating and breathing on his own some today. He's still super tired, but actually smiling some today (not around any nurses/doctors, though).  Here's to him coming home tomorrow! Thank you all for prayers and well wishes - Laura and I really appreciate it. 

We didn't do many photos or videos of Micah in his first 100+ day stay at the hospital because he really just laid there pitiful, most of the time.  Now that we know what his personality is like, seeing him in pain causes a different kind of heartache. 

Why does Micah need caths so often? 

His last cath was in Jan, 2015.  This is his fourth cath.  The reason he has already had so many and the reason why he will need them all through his life are mostly for two reasons. 
  1. The cath's give information that is useful for planning ahead.
  2. The doctor can do some fixing up, while they're in there. 

Can't x-rays or sonograms do the trick? or It seems like caths are so risky.. is it worth it?
The image quality is so much better than a sonogram and an x-ray does a different job.  X-ray's will show space and lack of space.  For example, bone (white) and air (black).  It's useful for viewing information about the lungs.  To get an idea about how much better a cath is vs a sonogram, Micah currently has a pseudo aneurism almost the size of a golf ball that they didn't notice via sonogram back in July. 

Being able to balloon the narrowings in his lungs, close off the collateral arteries (too bad they don't just close themselves) and perform other extreme scenario events are some of the fixes that the doctor can perform.  These things that help prevent the next surgery from happening sooner, rather than later.  You want to avoid surgeries on little babies as much as possible. 

Thursday, September 17, 2015

Fourth Cath

One year ago today we were discharged from a 109 day stay at Children's National Medical Center. And to celebrate, we're back in their CICU... 

Micah had a scheduled cardiac cath (his 4th) with Dr. Kanter this morning to check out his heart and balloon any narrowings in his pulmonary arteries. He also got his PEG tube changed to a "low profile" button (so excited about that!).

Dr. Kanter didn't balloon Micah's right pulmonary artery because it looked nice and large! The left pulmonary artery looked super small. Kanter ballooned it causing the lower left lung to be overwhelmed with the new blood flow. The capillaries leaked into the air sacs and now he needs to recover in the CICU. The riskiest part of this is when the blood flow transitioned from small to large. The pic below shows the before and after - there is way more blood flow toward the lower part of the lung.

Kanter also told us about a pseudo aneurysm about the size of a golf ball growing off the conduit. He suspects that the conduit tore a bit during the cath he had back in January. I don't think it's at risk for bursting but it does change the timeline for his next open heart surgery. We estimate his second surgery to be within the next six months. 

Lastly, Kanter coiled off three of Micah's remaining collateral arteries that weren't vital for blood flow to the lungs. Now Micah is collateral free! (Something that happens to most of us shortly after birth). 

I feel worried and taken aback at the news post-cath. My biggest fear is another larger tear and/or clotting. And we just found out that he didn't tolerate extubation after the cath so they'll try again in a few hours. If you remember last year's hospital stay, his breathing tube was the main thing that kept us for so long. The next 24-48 hours will keep us on our toes but I have faith that he will get through it so we can bring him home this weekend.