My two year-old Clay.

I know it's been foreveerrrr since I last updated--I forget a lot of people only check my blog and not my Facebook posts--so I apologize (especially to you, CDH friend, Raelyn!)! But I can assure you things have been great with our big ol boy!

My last post was about Clay's puny-self after the Nissen surgery last month, while we were still in the hospital. So to catch y'all up--he ended up with a respiratory infection that left him on antibiotics for over week--we were able to finish them up at home via broviak, he was on a little extra oxygen for a week or so after we got home, but things have been fine & dandy since then!

Now that all the recovery is behind us, I am so happy that we had that Nissen wrap. Clay will still wretch occasionally but the Nissen prevents food from coming back up, so he's keeping down all his calories and is gaining weight!!! He's up to 25lbs, 8oz now...yayyy!!!! He also just acts like he feels so much better. Thinking back, I can tell now that he was probably in a lot of pain from all the reflux he was having. I was just blaming his extra-sensitive & clingy behavior to a normal toddler phase. It's just so hard to know sometimes! Thankfully, he is giving me a break from the worrying and I've just been able to watch him learn & grow.

It's just so amazing to see the world through his eyes. He notices every little thing, every new sound or sight. He'll get all excited and make this face:

(This pic was pre-haircut. Aww, I miss those curls!)

He'll click his little tongue too, to get our attention. He sure is an expressive booger.

And so thoughtful.

We celebrated Clay's 2nd birthday with a party with lots of friends & family! It was a beautiful, wonderful day.

 

As you can see, Clay had a good time too :)

Clay's toddler days are keeping me busy! He still scoots everywhere he needs to go, on his bottom. He's doing better about spending some time on his knees but still doesn't crawl. He can pull himself up to stand & he'll cruise along side the couch or ottoman. Boy, is he getting active. Tonight, we wallered all over the bed, doing somersaults and practicing standing on our own (he's much braver on the bed). He's making a lot of progress and will be walking on his own soon at this rate!

While we were in the hospital Clay had a barium swallow study done to make sure that when he swallows, he doesn't aspirate food into his lungs. I wasn't concerned that he was, but it's a precautionary thing they like to do before we are cleared for formal feeding therapy. He passed the swallow study, so now comes the fun part..feeding therapy! Haha, it's not really fun--it's quite frustrating actually, but I am glad we are able to start working on it. It's gonna be a long, slow, process I'm afraid. He'll lick things & take small tastes but anything with much substance will make him gag. It's a tricky thing, though...Clay's never learned to eat by mouth & with all the negative things forced upon him in his short life, I'm sure it's scary for him. I don't want to push too hard, but we have to try. Say a lil prayer for us & this process...we're sure gonna need 'em.

Clay has also learned to vocalize by plugging his trach with his finger. He doesn't particularly like to wear his PMV, so I'm just glad he's able to talk to us somehow. He loves naming people's things better than anything. For instance, he'll see my shoes by the door and he'll point to them & say 'mamma'. Or he'll see daddy's jacket hanging up & he'll point to it and say 'daddy'. I'm really trying to get him to name the actual thing instead of whose thing it is! Lol. He's such an observant little guy. He knows every car in the family and loves to talk about them, lol. A frequent conversation of ours goes like this: Clay looks out the window & says "Papa"...I say, "Papa's at work"...Clay does his sign for 'car'...and I'll say, "yep, Papa drove his car to work". Interchange Papa with Nana or Heee (Aunt C) or Hay-dee (Aunt Kd) or Eli or any other family member & that's Clay's favorite thing to talk about ;)

Last week, we had an appointment with the NICU graduate program where they tested him on all the social, cognitive, motor development and he did so great. I was so proud of him, I swear I coulda busted. Especially with the cognitive testing...when they were testing to see how his comprehension was, he went above his age & maxed out at the 3 year old level. Yes, I'm bragging. So hard. To think of allllllllll the stufffffff he's been through & his mind is still sharp as a tack. Amazing! Of course, he was behind in the gross motor skills but his fine motor skills were on point. He will catch up on his own time, I ain't a bit worried. 

He loves him some basketball...you can see the concentration in his tongue & check out that form ;)

Buckets!

The next big thing coming up is a Bronchoscope this Thursday, the 21st. It will be yet another sedation procedure, but we have to have it done to continue on with getting the trach out. And boy, are we are ready for that! Say a prayer for good results on Thursday, please!

Speaking of getting the trach out, our CDH buddy Mason got his trach out on Halloween! He has been doing great. Thank God!

We are so blessed. Really, truly blessed and I am so humbled & thankful for where we are now. Thank you all for continuing to keep up with our lil warrior's progress. Lots of love & peace to you all! Have a blessed Thanksgiving holiday! Xoxoxo!

At full feeds but feeling puny :(

Well the good news is, we are up to full feeds of 56ml/hr and he's doing great with that so far! His g-tube is still racked, and will have to be for another week or so, then we can work on condensing feeds into boluses.

We were hoping to be home-free today, but Clay's coughing is worrying me. He coughs and hacks and coughs and hacks, turns blue and breaks out in a clammy-sweat...I suction and suction and give saline drops and do breathing treatments. Once he's over the coughing fit, he'll huff and puff and retract and just flat out looks like he's struggling. He's been on 26% oxygen since surgery--which hasn't been totally necessary until lately. We had to bump him up to 35% this morning and he's still hanging out in the low 90's. His heart rate has been elevated over the past couple of days, too. Something's just not right. But we had chest x-rays done yesterday and they looked fine. He hasn't had a fever, either. It's just so frustrating not knowing what is causing all this and so pitiful to see him so puny. If it is something viral, something that may be lingering from our rubber-ducky incident--the cough has been lingering since then, but it's obviously taking more of a toll on him now--if it is something like that, then I'm perfectly fine with taking him home and setting up our Clay-ICU again. I'd rather have him home, where he can rest and be more comfortable...I just don't want to take him home and have to come right back! So, we will be here for another day or two until we get something figured out.

Y'all say a prayer for my lil man. This never gets any easier :(

Wake up, Clay belly!

Praying for poop...that's what we've been doing since surgery. He finally had a decent bowel movement tonight, nothing huge, but hey...it's a start! And it was without the help of a suppository so that's good he did it all on his own.

Poor little bug has been pretty uncomfortable, both with post-op pain and his bloated-ness. His belly has been distended and so tight, he looks like a lil pot belly piggy. A very cute pot belly piggy, of course ;)

Since his bowels haven't quite awoke from surgery, we haven't been able to start feedings :( He started getting some nutrients through is IV yesterday, but that's just not the same as tummy feeds... We've actually had to drain his g-tube constantly, so that all his gastric juices and air can escape, because otherwise he wretches and is extremely uncomfortable. We've tried to rack his g-tube a couple of times, which is when we attach a 60ml syringe (sans plunger) to his feeding tube extension and suspend it above him. With this, air can escape but gastric juices stay down. Both times we've tried this, he's not tolerated it so we put it back to drain. We don't want him wretching or gagging because we want his new Nissen wrap to stay intact. Surgery team isn't concerned with his sleepy belly right now...they say sometimes these things take a while. So, we wait.

He also had a touch of a fever tonight, 99.5..and he's sounding a bit wheezy in his lungs, and he's been retracting a bit when he breathes--which could be because of his overfilled belly. I'm really hoping things aren't settling down in his lungs; his cough has been a little weak because it really hurts him to cough. Poor fella, that's the last thing we need right now.

He has perked up a bit over the past couple of days... he's felt like sitting up in bed and is enjoying reading his books again..we took a lil wagon ride through the halls yesterday too. He's not back to his silly, smiley self yet, but we'll get there.

Handsome man.

Gettin lots of momma lovins...I think we're both tired of hospital living :/

Thank you all--for the millionth time--for your prayers & love & concerns for our baby. Lots of love & blessings to you all! Xoxoxoxo!

Recovery days.

Things have actually worked out better than expected this time around...very unusual for us! ha!

We had surgery yesterday morning; they took Clay to the OR around 11am and he was out and in the PICU around 3pm. Dr. Draus had great news for us in consultation afterwards. It turns out, his diaphragm is still intact--no hernias anywhere! Thank goodness! The reason his x-rays look like his stomach was misplaced is because the diaphragm is a bit loose on the left side. Dr. Draus decided not to tack it down or tighten it or anything because Clay has been doing so well breathing as it is, so why mess with it, right?

Dr. Draus was able to get a really good look at his handy-work and was really pleased with how well tissue has formed around the previous patching jobs. He said that he could see liver & spleen acting as a barrier between bowel & diaphragm, so it looked like bowel would have a hard time slipping up through the diaphragm even if it wanted to. Good news!

So, the diaphragm didn't need repairing after all...and we're hoping the loose-ness of it will allow for more room for Clay to grow & another repair won't be necessary for a long, long time!

The Nissen Fundoplication was done to prevent the frequent pukies that Clay was having. The Nissen wrap is a crazy concept that I have a hard time wrapping my head around, but a picture helps:

The stomach is wrapped around the esophagus and then sewn to itself to reinforce the esophageal sphincter, the muscle that keeps food & acids from backing back up into the esophagus. From what I understand, Clay will not be able to puke at all now...which I think is both a good and bad thing. Good, because maybe we can put some weight on his scrawny-tail...Bad, because even if he has a stomach bug, he won't be able to puke and sometimes puking just makes you feel better. But, puking numerous times a day everyday IS awful and since that's the situation we were in, I think the good overrides the bad.

Dr. Draus said he had to use a good portion of his stomach to wrap around the esophagus; so it will take a while for his stomach to be able to hold large amounts of food--he will have to be on a slow drip for a while. Hopefully we can start feeds in the morning.

Other than the Nissen, Clay also had a central line placed--a more permanent IV port for meds and fluids. Eric & I requested this so we could spare him from being poked so much. He is such a hard stick and poor guy had already been poked over 10 times during this little hospital stay...and it's fishing for veins almost everytime. That's just torture! We'll have that central line pulled before we leave for home, no big deal.

Clay also had his appendix removed while in surgery; Draus said it was there and in plain sight, so he just went ahead and took it out..lol. Now we won't have to worry about appendicitis, I guess!

Today has been a pretty rough day of recovery. Clay's been awfully sore, but is being such a trooper. He only fusses when he coughs. Poor guy, it's a bad time to have a cough. He has only smiled a few times today so that's a good indicator he's feeling rough. I can't imagine after being cut open and having your innards rearranged I'd feel like smiling either! Hoping tomorrow will be much better for him.

I cannot thank you all enough, for your well wishes and love and prayers. The power of prayer and positive thoughts is an amazing thing! We are so, SO blessed. Seriously, we have the best people in our lives. I cannot imagine going through this without all the love and support we've felt...from the visits, to the meals, from the calls & messages, to the likes and shares and comments on Facebook.. They all really do mean a lot to me. I hope I can pay it forward one day. You all are the best <3

Lots of love & peace to you all, dear friends... Xoxoxoxo!

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 croup-y...one 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!

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:

Reherniation...again.

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!

On to the next one..

CLAY HAS BEEN TOTALLY OFF THE VENTILATOR FOR FIVE WHOLE DAYS & NIGHTS!!!!!

Wooohooo :)

I cannot believe how quickly and how smoothly this whole kicking-the-vent process has went. Clay was just tired of the ol' thing, I reckon--him & me both!

We have had appointments with Pulmonary, Nephrology, Cardiology, Speech & ENT over the past week & we've got good reports at them all.

At the pulmonologist, we got the okay to discontinue the vent at night--his settings were so low and he's done so well without the vent at all other times, we felt comfortable making that call. I put the pulse oximeter on him at night to monitor his oxygen levels and he's never made it alarm (it would alarm if his sats dropped below 85). He usually runs 92-96...No vent, no extra oxygen at all...CRAZYYYY!

We also started the conversation of the next step: TRACH DECANNULATION! Since he's off the vent now, there's no need for the trach, so let's get that thing outta there, right?! Doc referred us to the Ear, Nose & Throat clinic to begin the process.

We had the appointment with ENT today and the first step in getting the trach out is to make sure his airway is clear. Sometimes granulation tissue can grow around the trach site and can block the airway, so we're scheduled for a laryngoscopy & bronchoscopy on September 18th. It will be a sedation procedure, but an outpatient one, unless something funky happens...but hopefully things look good in there! I believe the doc said if all is clear the next steps would be to downsize the trach, then do capping trials & then we'll do a sleep study before we get it out completely. If things go smoothly, we could have the trach out in 2 or 3 months. Eeeeeeeeek! Lots of good vibes & prayers, please!

At our cardiology appointment, they also want to follow up with another ECHO to make sure his cardio status post-ventilator hasn't changed. So we're piggy-backin' that procedure with the others on September 18th. He had an EKG done today & Doc said things looked good. He was very pleased with everything, which is always reassuring to hear.


At the nephrology appointment, we discontinued a couple of his medications and we're supposed to have labwork drawn in a couple weeks to make sure it didn't rock the boat. I'm confident he'll be fine--I'm telling ya'll, he's making this easy on ol' Mom. All this no-ventilator, no-meds business..well, we have a couple meds, but still... It's awesome!

At our speech evaluation, we got a new Passy-Muir valve, which helps him to vocalize. That's the ONLY thing I miss about the ventilator--Clay would use the ventilator pressure to move air around his trach & he'd be able to talk that way, but now he can't do that unless he has this valve. And the valve works great--when he'll let us put it on him, the little rascal! He will not leave that valve on for nothin! As soon as I put it on, he starts coughing. It's a fake cough at first, but because the valve blocks air from being exhaled out of the trach, it really does get him choked up, so he'll cough and gag and carry on until someone pulls the valve off (it's usually him), but I don't like to force it on him--a lot of times, he'll work himself up til he's puking and that's no fun for anybody. When he's good and distracted, he'll leave it on and jabber up a storm--but I haven't been able to sneak it by him in a couple of days. I swear, I don't know what I'm gonna do with him! He pulls off the little trach nose piece too and will launch it across the room. I fight with him all day to try to keep that trach covered. I'm just waiting for the day he tries to stick something in it. If any of my trach-mommy friends happen to be reading this and have any suggestions, please pass them along...this is driving me nuts, lol!

Of course, Clay hammed it up during all these trips out & about...his new thing is to fist bump everyone he sees. It's the cutest thing ever! He'll hold his little fist up in the air, just waiting for a taker...once someone gives him a bump, he'll cheese so big...it's a little ridiculous. He is just so infectious, I love to watch him make people smile. He sure is a blessing.

What a stinker!

He is also doing better in physical therapy. We are now having to travel to the clinic a couple times a month for sessions, but I think he's a little more receptive to it in the new setting...a little. He's still pretty ornery. He doesn't like the fact that our PT makes him work, haha! Slowly but surely it's paying off--he is now pulling himself up to standing! He'll take a few steps from side to side while he's standing in front of something but he's awfully wobbley...his little hips are just so weak still. But he'll catch up in his own time...we are making progress! We also got a neat contraption last week called a Gait Trainer, it's a little walker essentially, but it's pretty cool! I think it's gonna be really beneficial for him. We're still waiting on the daggone ankle braces to come in...insurance must be holding up the process but hopefully they'll be in in a week or so.

Big boy, pulling himself up to standing all on his own! Look how proud he is :)

We're still having issues gaining weight. He's not lost anymore, he's just hanging steady at about 23 1/2 lbs. He has grown a couple of inches longer though. We upped his total daily volume last week, so hopefully that will help. If I could just get him to keep all of his feeds down during the day, we'd be doing good...poor lil guy has a super sensitive gag reflex. He'll cough and then, blaahhh, there goes his whole feeding. It's very frustrating. I really think that once we lose the trach the issue will get better but in the meantime, I'm trying to space his feedings out more during the day and not give him so much volume at once. Y'all say a prayer we can find a happy spot. We need to get some meat on his bones! 

I don't think dog food is the answer there, buddy..

Clay decides every once in a while that he likes to eat things by mouth, but it's hit or miss...stubborn thang! Once the trach comes out, we will be tackling the eating thing hardcore. One thing at a time, right?

Cheers!

Lots of love & peace to all of you! Thank God for wonderful blessings!

XOXOXO