Wednesday, September 5, 2012

Exciting, exciting stuff! :)

I meant to write a blog after our appointments with our pediatric surgeon and cardiologist a couple of weeks ago, but just couldn't find the want-to...but after our appointment with the pulmonologist today, I just have to share what's going on!! EXCITING STUFF!

Our appointments a couple of weeks ago, with Dr. Draus (surgeon) & Dr. Bezold (cardiologist) went well.
We had x-rays done, just make sure everything was still in the (relative) right spot & Draus said things look good. He thought Mr. Clay was looking good and was happy with how he's doing. We've been noticing a little more output from his g-tube lately (which is draining secretions/bile/yucky-looking-brown-stuff out of his stomach)...and Draus didn't seem too concerned with it. He said the fact that the J tube stints open the pylorus muscle in his stomach will cause things to 'back-flow' long as it's not looking white & milky, we shouldn't be too concerned. If it ever starts to look milky, the J tube could have snaked around in his intestines & started feeding his stomach, which would be a problem for Dr. Draus to fix under fluoroscopy...but that's just something for us to keep an eye on. Right now, everything is checking out good, and we don't have another appointment with him for 3 months! At our next appointment with him, I expect that we'll talk a little more about the potential Nissen surgery that's on the radar. The Nissen will hopefully fix the problem with his stomach, so that we can eventually feed his stomach instead of his jejunum & then we can work on him eating by mouth. But that's a ways down the we are just happy that he's growing so well, and we'll try not worry about the rest at the moment.

When we visited Dr. Bezold with cardiology, we had an ECHO done to check on Mr. Clay's heart. Everything looks stable there. They're always trying to get a look at his aortic arch, because it was determined at birth that he had a narrow aortic arch...but because of the placement of his heart & the fact that his trach gets in the way, they have a hard time getting pictures of it. So, Dr. Bezold says they just have to go by how he looks clinically--and clinically, he looks fine. His pulses are good, his hands & feet are warm, sounds okay with a stethoscope... So we'll take it! We won't see him for 3 months either.

..Now for the really exciting news!!

Here lately, Eric & I have been feeling like Clay can tolerate some time off the vent...we say that because the vent tubing will come disconnected from his trach sometimes, or when we're changing his clothes we disconnect it ourselves--and we've both been taking our time connecting it back, just to see how Clay handles it--and most of the time, he doesn't seem to notice it at all.

So today, we had an appointment with Dr. Anstead (pulmonologist), and we told him as much...then Dr. Anstead disconnected Clay from the vent for a couple of minutes to see how he tolerated it, and he was totally fine...maybe tugging a slight bit more, but he was just looking around, not seeming to notice.
Sooooooooo...Dr. Anstead has given us the go-ahead to start doing trach-collar trials!! The trach-collar will provide humidity & oxygen only, no pressures or extra breaths or anything from the vent! Anstead recommended we start off doing two 30 minute trials a day, then he left it up to us to increase the amount of time off as we see fit.  Dr. Anstead said to work our way up until he's off the ventilator during the day, but to leave him on the vent while he's asleep or napping.

OMG!! Yayyyyyyyyyyyyyyyyyy!!!!

So we'll wait until our medical supply company brings out the trach-collar, then we'll start doing some trial-offs. I KNOW that Clay will let us know if he doesn't like it, he always has..haha! But I'm optimistic that he'll do great!

Also, Dr. Anstead discontinued a few medicines--diuril, potassium chloride & sodium chloride. And I am ecstatic about that--I drew up meds tonight in no time! But he ordered some blood work for next week, just to make sure all of his electrolyte levels are good without the potassium & sodium. I'm hoping they are just right!!
And we didn't leave to doctor today without a shot :( Clay got his Flu shot, poor fella. He was none too happy about it.. Now the rest of the family needs to get ours! Any sickness like that is probably the biggest threat to our little guy at this point.

And for other news...

We have an evaluation with the First Steps program tomorrow, so hopefully that will get the ball rolling with Physical Therapy & Occupational Therapy & things like that..I'm excited for the help. Clay's gotten a lot stronger since we've been home. He's almost sitting up on his own, but not without that extra hand there. I'm hoping First Steps will give me some good tips & exercises to do with little bug.

We have also started supplementing breast milk with formula. Despite me wanting to try an alternative to formula, I settled. It's hard to go against what the doctors recommend, especially with a baby like Clay. I don't want to do anything that would hurt him! Even though I don't think a homemade formula would hurt him by any means, I was uneasy about the consistency of a homemade formula. Because he's getting fed into his jejunum, it makes things a little more difficult. The tube that goes into his jejunum is really small, so thick liquids aren't recommended for the J-tube. Whenever the day comes that we can feed Clay through his g-tube, I am very eager to try a blenderized diet, but for now we are using Baby's Only Organic Dairy Formula...and Clay seems to have adjusted alright. It took him a week or two to get used to it, which kind of worried me at first...but after reassurance from our super wonderful nurse Alexis & her talks with the NICU dietician, I felt better about it. It makes sense that his digestive system would be a little 'lazy' after digesting breast milk his entire 10 months.. He doesn't poop nearly as often now & it smells so much worse...but we're adjusting! :)

So yeah, that's where we are now... Hoping for trial-off success & starting to think about 1st birthday parties!!! ;)

 And Halloween! ;)

Exciting, exciting stuff, that I feel so blessed to be excited about.

My sweet little miracle <3

Lots of love & peace to you all!!


  1. Best news I have heard in awhile...great for Clay and you also...what a fine family Clay has. I always believe God knows who to give these special babies to and He sure did do the right thing with Clay! God bless all of you! Loads of love to you!

  2. I am absolutely thrilled to hear how well Clay is doing and that you are going to be trying to wean him off the vent! You guys are doing an awesome job!

  3. Your great news brings me to tears. I can only imagine how amazing it must be to get the go ahead to wean off the vent. My heart is so happy for little Clay!

    God bless,

    Jacob's Mommy
    RCDH Survivor