Tuesday, May 29, 2012

Gastrostomy-Jejunostomy Tube...check!

We made it back from the O.R., with a Gastrostomy-Jejunostomy (G-J) Tube today...A new extension to our newest accessory. Exciting, huh?! Well, I'm pretty excited myself..hopefully it will do the trick and Clay can start 'eating' again.

..The G-J tube is a feeding tube that bypasses his stomach and goes straight into his jejunum--which is the beginning of his small intestines.
..Dr. Draus put a scope down to see what was causing his stomach not to empty. He said it looks like, because of the positioning of all his innards, his stomach just has an unnatural bend in it...his anatomy just doesn't quite flow the way it should because it's been rearranged so much.
..Besides putting the feeding tube into his jejunum, Dr. Draus didn't do anything else to fix his anatomy placement. He's hoping with time, as he grows, it will all work itself out. If not, it may require a future surgery down the road. But as of now, we will be happy for Clay to get nutrition through his G-J tube.
..Hopefully, he will tolerate feeds into the G-J tube & we can get him OFF the daggone IV fluids and meds! ..Please send up some major prayers for our Clay-bug. We need him to handle his feeds and handle them excellently! They started a trickle of milk tonight, at 1 mL/hr. Once his body gets used to digesting again, they'll give him more milk. C'mon, Clay tummy! Workkkkk!
..If we can get up to full feeds and off the IV fluids, we can try home ventilators again! My fingers and toes are crossed that we catch a break and things go relatively smooth..

We wanna go HOME!! And away from this crazy town. My car was broken into again last night and the assholes got my camera this time. I hope they take beautiful pictures with it--or that they look at the pictures of our beautiful miracle and it puts hope in their hearts. And I hope the spare change from our console and my running shoes they took are just what they needed, too. Grrrrrr! Nothing burns my biscuits like a thief. But I suppose they're fighting a battle of their own..
Anyways, the point is: we need to go home :) Pray for us all, good friends.

Lots of love and peace to you!
..and a pretty sunset pic, taken from our front porch over the weekend :)

Wednesday, May 23, 2012

7 months..

Hello again, friends! :)

Clay is still doing very well! The boy's got spunk, let me tell ya! We have the best time with him..he is such a sweet blessing. And so entertaining! All the NICU staff agrees too, I believe ;)

...We are on the O.R. schedule for next Tuesday, the 29th. Dr. Draus will be trying to fix the problem that is causing Clay's stomach not to empty. Please be praying for a quick, easy fix. And for a smooth operation & recovery. And pray, for everyone's sake, that this is the last trip to the O.R. for a looong loooong time.
...Clay is still ventilating well! He's been on 21% oxygen--ROOM AIR--for nearly 2 weeks now! Incredible! His pressures continue to get weaned slowly..and he's not seemed to notice. Such a big improvement from before. Continue to pray that his little lungs & diaphragm heal and grow just as they should. And please be praying that we can get transitioned to a home ventilator with no hiccups or set-backs, whenever that time comes..

I couldn't help but tear up tonight, as I cuddled Clay up tight. Our little fighter is 7 months old!!!! From the highest of highs, to the lowest of lows, we've been through it all. Yet again, I am feeling so overwhelmingly thankful for God's grace. Thankful to hold my sweet boy tight and smell his sweet baby skin and watch him sleep. I pray that Clay will continue to be strong, happy & healthy..and that we can get HOME soon. Seven months is a long time. And while the NICU is our 'normal' now, I cannot wait for the day me & Eric get to sit on the porch with our little buddy..

..One day...

But for now, we will continue on, with lots of love & thankfulness & patience in our hearts..

Love & blessings to you all! XOXO

Monday, May 14, 2012

Our bumpy road continues..

Here's what has happened since I last updated:

...Clay is totally OFF morphine! Yayyyyy!!! ! No withdraws, either...thank God!
...Reflux has still been an issue...so he still hasn't been fed :(
...We had a g-tube study done on Friday to see what may be causing the reflux problem. The study was done by putting a contrast dye through his g-tube and then shooting x-rays to see how it flows through his digestive system...or not flowing, in Clay's case. For whatever reason, Clay's stomach is not emptying. So the reflux problem has been caused by his lil tummy getting too full, thus making him puke. 
...Now his g-tube is set to drain, so it's pulling all the secretions/saliva/etc. off his stomach...thankfully, this has gotten his reflux under control. So no more pukies (for now)!
...Dr. Draus wants to wait a couple of weeks before we investigate the problem any further. He wants the g-tube site to heal really well before they have to go poking around it again. They will probably start out with an endoscope, to see what they can see..then go from there. This may end up being yet another surgery for Clay. Boooooooooo. I swear, we are going to hit every possible bump in this CDH road. But we WILL get through it! Please pray that it is an easy fix.
...The g-tube has created some problems, but I think it has helped Clay's breathing--now that his stomach is off his diaphragm. He's been on ROOM AIR (21% oxygen) since Thursday!!! This is really good stuff!  The ventilator is still giving him extra pressure with every breath, but the settings are relatively low--especially considering all his little lungs have been through!
...Also, Clay now has an uncuffed trach, instead of a cuffed trach..and he's doing really well with it! He's still getting good pressures from the ventilator, despite the air leak he has with the uncuffed trach. And we are lovin' that air leak, because we are getting to hear his voice. I'm not gonna lie, it really freaked me out at first, to hear him whimper and cry and makes noises around his trach...it's just so weird to actually hear him! He's also let out a few giggles and squeals..and boy, does that sound so sweet! :)

Even though we're facing another hurdle, my baby is happy and we are thankful. He is such a blessing to everyone who sees his sweet smiley face and I am so so so grateful to be his mommy.  I couldn't have asked for a better first Mother's Day, getting to hold my baby in my arms.

He is just amazing. And God is so so good.

Thank you all for standing by us...your love & prayers & support mean so much to us. We can feel them..they are carrying us through!

Keep praying & believing, my friends. Much love to you all!

Monday, May 7, 2012

Working out the kinks..

Sorry for my lack of updates, friends! There's not been a whole lot new to report. Clay is still doing really really really well! Happy as can be and playing with everyone :)

We've had some issues with him refluxing, so he still hasn't been fed since his gtube surgery last week.
...This past Friday, docs started Clay on a medicine called Reglan, to help him move things through his stomach faster. Reglan can have some pretty nasty side effects, but thankfully none have showed up yet. Please pray that the med will continue to work and cause no adverse activity!
..His gtube has been set to drain all weekend, so it is pulling all the extra saliva/secretions/stomach juices off of his stomach, so he won't throw it up.
..Today, they 'racked' his gtube, so it's vented and air can escape, but all the secretions are able to stay in his tummy. If he can handle things in his stomach and not throw up, we'll be able to try feeding through his gtube tomorrow! Please send lots of good vibes and prayers to Clay and his tummy--that he will tolerate feedings and we can get him off the IV fluids.

Doctors are giving the go-ahead for home vent trials, too!! Please, please pray we find one that is successful!!
He had a couple of excellent blood gas labs today, so they weaned on some of his ventilator settings. So this is awesome! Yay, Clay!!!

It still amazes me how far we've come in three weeks. Clayton Cash is a fighter! Thank God!

Much love and peace to you all! <3

Wednesday, May 2, 2012

We have a new accessory!

Another surgery behind us, and hopefully it's the last one for a looooooong loooooooong time.

Surgery day hasn't got any easier for this momma, even though this is the 6th surgery in Clay's 6 months of life. It still gets my blood pumpin' when I see all the nurses and anesthesiologists come in in their blue scrubs, ready to whisk him away to the OR. I always walk out with tears in my eyes, holding on to Eric's hand..and praying like crazy!

They took him down around 1:30 yesterday afternoon..and they started out with the Broviak.
...After that, they tried doing the g-tube with a scope going down his throat and into his stomach. The scope has a bright light on the end of it...the light shines through the stomach and can be seen through the abdominal wall, so the surgeons will know where to place the feeding tube. This would've been the easier, less invasive way to insert the g-tube..
...but Clay's stomach was still in odd placement from the repair surgery two weeks ago, and the docs couldn't see the light shining through his abdomen. So they had to opt for the more invasive laparoscopic procedure instead..
..With this procedure, they put a camera through Clay's belly button and used it to find his stomach, which was sandwiched between bowel and diaphragm. Dr. Draus said he had to peel the stomach away from the underside of his diaphragm, because scar tissue had grown around it. He said that once the stomach was off Clay's diaphragm, he was easier to ventilate. So this is really good! With his stomach not putting pressure on his diaphragm, hopefully his left lung will have lots of room to expand and he can just breathe better all together. Pray this is the case!
..Once they got the stomach in good placement, they inserted the g-tube. They were able to put in the mic-key button. I'm still not totally sure about all the g-tube lingo, but I know the button is better and easier to deal with..so this is good! I've still got a lot of learning to do with the g-tube..
..He came up from the OR around 4 yesterday evening and he rested really well all evening.

Our nurse overnight said he slept all night long and never required any extra pain meds or sedation..then, when our day shift nurse came in at 7 this morning, he woke up and was smiling! He has played and smiled all day, with a few catnaps in between.

I swear, this little guy just amazes me! You can't even tell he had surgery yesterday. I know I shouldn't be surprised, though..with all the praying we've done! He sure is a tough cookie.

So the plan now is to give his stomach a couple days to rest, then we'll try to start feeding him through his g-tube. And we'll continue to wean the morphine, which should be off in a few days if he tolerates it well!

Keep on praying that Mr. Clayton Cash continues to make excellent progress and keeps moving forward..'cause at the rate we're going, it won't be long until home ventilators are back in the picture!

I am just in awe and so so thankful for our sweet, strong baby boy. We are so incredibly blessed in every aspect of our life. God is so good!

Thank you all, again, for the millionth time. We love each and every one of you..and I pray for peace and blessings to all!

Here's a pic of our sweet boy with NO TUBES on his pretty little face! And also a pic of his latest accessory--the g-tube: