Friday, September 27, 2013

Repair surgery hold-up...

Of course, things never go as planned with Mr. Clayton Cash and this trip to the hospital has been no different. Lil turkey likes to keep us on our toes! 

Repair surgery #3 was scheduled for Thursday morning, instead we found ourselves in the ER with a fever and a cough..

Let's rewind to Tuesday evening...Clay's in the bathtub, playing with his lil rubber ducky and he squeezes...squirtttttt, out comes the water and shoots directly into his trach...I swear, it could not happen again if we tried. He coughed and I suctioned, all was well and we went to bed. Through the night, he started coughing and continued more into Wednesday. His secretions were never thick or green or anything, so we weren't too concerned but still watching for more symptoms. Sure enough, through the night Wednesday he continued coughing and a fever spiked, respiratory rate and heart rate was high and his oxygen levels lingered in high 80s-low 90s. So we headed to the ER to see what was going on and surgery was postponed.

We're still not conclusive on the cause but I suspect that daggone ducky water irritated Clay's airway or something...Or maybe it's a regular old cold...We're waiting on blood cultures to be sure. Antibiotics were given too, just incase it is bacterial. 

His cough is dry and sounds of those painful kinds that is pitiful. But he's been wearing a humidified trach collar and that seems to be loosening things up and his cough is much better today. His lungs sound good and clear and he seems to be feeling much better since his fever is gone, too.

We've moved from the PICU to a regular room today and have been told they want to keep us here until surgery day, which sounds like may happen next Tuesday or Thursday. 

So, it's gonna be a long couple of weeks, but our spirits are high and we will just do what we gotta do!  Everything happens for a reason, that's what I believe! 

Oh, and look who got a big boy haircut:
How handsome, right? :)

I'll try to keep everyone posted on the latest. Lots of love and thankfulness to you all! Xoxoxo!

Monday, September 16, 2013

Reherniation, again...

What a day.

We had an appointment today with our surgeon, Dr. Draus, to discuss what could be causing Clay's ongoing puking issues. Chest x-rays were taken first thing and then we learned exactly the issue:


The patch that was constructed for his diaphragm in the previous two repair surgeries has given way right in the middle of his diaphragm, right below his sternum. The g-tube is serving as somewhat of an anchor for his stomach, so it's only partially up in his chest cavity, but we could very visibly see stomach in his chest while looking at the x-rays. That definitely explains his volume intolerance and his frequent pukies, poor lil bug. We weren't expecting that one.
On the way to Lexington, Eric & I mulled over different scenarios, pondering what triggers the pukes...could it be a food intolerance, could it be a motility issue, could it be that he needs a new reflux med...We discussed the possibilities of replacing the J-tube, going ahead with the Nissen surgery that we had previously cancelled, but we never even mentioned reherniation.

Although that is something that's always in the back of my mind, I figured another reherniation would mean another sick baby. I figured another reherniation would mean his breathing would be compromised. Thank God, that has not the case this time around. We don't even know how long it's been since it happened; his last x-ray was in May. But I haven't noticed any change in his breathing and he's still rockin' it 24/7 with no ventilator or oxygen, satting in low-to-mid 90's. Absolutely amazing, I'd say, considering his stomach has just unwantedly took-up house in his chest....just busted through the diaphragm, snuggled right up next to his heart & lungs. Not cool, stomach, not cool... How about you stay put next time?

We are in the books for repair surgery #3 for next Thursday, the 26th. Dr. Draus will be approaching this surgery through stomach and will use his original repair surgery site. He will have to pull the stomach back down where it's supposed to be and repatch the diaphragm. If it looks like the diaphragm tissue that is in place from the previous repair surgeries is strong enough to sew to, he will utilize that to place the new patch. But if the existing tissue is not sufficient, he will have to start from scratch. We are hoping for some good, strong tissue to sew to, that way another reherniation is less likely. Also, Dr. Draus will do the Nissen Fundoplication while he's in there. Might as well go ahead and knock it all out, I reckon.

Our expected hospital stay is 1 week. Oh, I dread it. I dread the surgery, I dread the recovery, I dread all of it! I don't want to see Clay have to go through this again. It sucks so bad.

Y'all keep us in your prayers. Clay will do wonderfully through this next hurdle, I have no doubt. He is my strong, strong, warrior and I am so proud of him.

And here's a few pics of him enjoying life, even with misplaced organs::

Looking at the sky...he loves to watch birds & airplanes!

Taking Pappy on a tractor ride.

These ankle braces are made for walking :)

lol, outfit courtesy of cousin Al :)

Holding hands with our friend Lyza..

Lots of things to talk about!

Gait trainer & ankle braces--just doing some PT!
What a big boy!
Yep, he's a trooper.

Thank you all, faithful followers of our journey. Your prayers and support lift us up when we need them the most. We love you so much! Xoxoxo!