Monday, May 16, 2011

Stoma Free!

Without getting into all the reasons I haven't written in a while... we've been busy!  We have so much to catch up on!  But I have to start with last week... news about April and May will have to wait...

Samuel is stoma free!!!  He officially has no hole in his neck :)  Nearly two years ago Samuel got his trache, and since then we have tried to get healthy enough not to need it.  Now, not only do we not need it, we were actually able to do a stoma revision on May 9th and officially seal his airway back up.  The only sign of a trache is a horizontal scar at the bottom of his neck... you would never even know he had it.  Sigh...

I'm so happy that I often get teary just looking at him :)  It's also hard to imagine that chapter of our life is behind us... that makes me teary too because it reminds me of all that Samuel has been through.  Even now, after nearly two years of parenting my trache-baby, the words "my baby has a trache" sound crazy and foreign.  I had never met a baby with a trache!  In fact, I'm not sure I even knew that was possible!  Well, at least it's not something I had ever considered.  I never considered a lot of things... like so many tubes and needles and tests, like months and months in the hospital, like carting around ventilators and suction and oxygen everywhere you go, like worrying that my child might get some thick mucus and require immediate CPR, like lots of thing...  Seriously?  These things can happen?

What also happens is healing... and our Samuel is doing just that!  Once again, he is overcoming health issues and hitting milestones.  What, you mean getting your trache out and your airway sealed back up isn't listed in the official milestone book?!  Well, it should be!

Some details from the hospital stay... in addition to the stoma revision, we also got another bronch (look at this airway), and put tubes in his ears.  Samuel's airway looked AMAZING!  No granulation tissue at all!  It was beautiful!  I might actually frame the pictures and hang them on the wall.  We are hoping the ear tubes will improve Samuel's hearing.  Twelve weeks ago his hearing test showed some slight hearing loss, but also revealed some fluid.  This time, there was still fluid, so the tubes were placed.  I'm already convinced they work - he has been a talking machine!  Not really words yet, but lots of sounds and noises, and new sounds and noises.  Yea!

So, the hospital stay itself wasn't a fun one.  Generally (this is our 3rd airway surgery in the last 12 weeks), Samuel requires extra oxygen for the first 24 hours after surgery, and by the next morning everyone we see wonders why this happy kiddo is in the hospital.  This time, not so much. 

Each of these three procedures has required a 3-day hospital stay, so you would think we were pro's by now.  Samuel had a terrible time.  Our pulmonologist has always warned me that being under general anesthesia can compromise pulmonary status.  Until this, I never really knew what that meant.  Samuel was on extra oxygen for five days!  Ugh.  For some reason, this time was not like the others, and his breathing definitely took a temporary hit.  He also spiked a fever on day 2, and was completely cranky for most of the three days.  On the bright side, maybe he's just finally realizing he wants to be at home :)

During our stay we again got to see lots of friends!  I didn't have any tears during this stay until I saw some of our NICU friends... it was overwhelming to be holding my NICU grad and showing off all of his progress to a group of people that saw Samuel hit rock bottom.  They were there for the worst, they knew the terrible odds, they hugged us and hoped and prayed for the best, and their work paid off.  I have a Samuel to prove it!

We also saw Ophthalmology, Pulmonology, Nutrition, and Urology while we were there... in addition to getting a new g-tube and multiple labs due to bad bloodwork (bad numbers came back that we're doing lots of follow up on).  I love our hospital!!!   Lots of updates, but for another time.  Bottom line is things are headed in the right direction.  There will be more surgeries, but if possible we will wait until September... the five days on oxygen wasn't good, so we'll wait to get bigger and stronger before going under again.

Our baby boy is stoma free!

Pre-op... getting ready for the surgery, but not terribly worried because Goodnight Gorilla is hysterical and keeping our attention :)

All gowned up and ready to go... but again, not worried because Jesus Loves Me (how ironic is that!) is keeping our attention now :)

Cutest Boy!

Before the surgery... it kinda looks like a belly button on Samuel's neck!
I literally snapped this picture as they were taking him into surgery... it's a bit red because we had literally just taken off the band aid.  I SO meant to get a really good one during the six weeks at home, but I hope this gives at least some idea of what it looked like before the revision.  The gross part is that even though the stoma did close down a lot (above is much smaller than it used to be!), Samuel's stoma didn't close down as much as most do, so he was still able to make zerbert noises through the hole.  Ew.  But kinda cool party trick :)

After the surgery!  I know, amazing!!!
Go ahead, scroll up and down now to compare... incredible!

We didn't take any other hospital stay photos because as I said above, Samuel was miserable most of the time.  We still managed to enjoy some one-on-one bonding time and a nice walk outside :)

Below is a sequence from our ride home... I love this kid.  He took off all of his band aids on the ride home, and decided to hold on to this one for at least 45 minutes - no clue why!
Holding his band aid perfectly still... it did not move from this position for quite some time!

Can I help you, mommy?  Why are you taking pictures of me?

The band aid only dropped when he started to fall asleep :)

Comfy :)

Back on the home front, Olivia and George are still happy as pie!

Texting and driving already?!

Hi mommy!  Whatcha doin?  Want to take my picture?

Cheese!  Most handsome pirate I've ever seen!

1 comment:

Lindsey said...

truly amazing! love to hear the great strides this kid is making!