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

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:

Another surgery tomorrow..

Clay has been doing so incredibly well! He just smiles and smiles and smiles all day long. He acts like he feels so good..and I can imagine with all he's been through lately, he does!

His morphine is weaned all the way down to 95 (it was at 410, less than 2 weeks ago)! And we can't even tell he's being weaned! Last go-round with the morphine, he would get the shakes and throw the awfulest fits. But he has handled this like a champ! So so thankful for more answered prayers.

And he's tolerating feeds again..we've slowly worked our way back up to 20mL/hour of continuous feeds. He's still not at the full feed amount, so he's still getting TPN fluids and lipids through his subclavian central IV line...

...well, the subclavian central line is not very permanent and our surgeons are afraid that the line will go out soon, because it's been in for two weeks already. And we really need that IV line because he's getting all his many meds, fluids, lipids through it.

So this morning during rounds, our surgeons decided it's a good time to put in a Broviak (a more permanent IV) and to go ahead and put in the G-tube (a feeding tube that inserts directly into the stomach).. TOMORROW!

So here we go with another surgery...not nearly as invasive or risky as the repair surgery done two weeks ago, but it's another surgery all the same. They all have risks..with infections, bleeding, anesthetics, etc. So please say a prayer for another successful day tomorrow.

I knew we would be facing another surgery day, but I'm kind of bummed it's happening now that Clay is back to his happy smiling self. But I know it really is a good time to do it...

This way, we can wean him off all the drugs and start feeding him through his G-tube, then we can get him on a home vent and go HOME!!! I'm optimistic that day is not too far down the road :)

Clay looks pleased with that plan, see:

6 months!

My big guy had a big 6 month birthday!!

His nitric oxide is turned OFF!! His chest tube is gone!!! And he's back in his big boy crib!!

We're having issues with him keeping food down, though. He's been gagging and throwing up all day. The docs turned off his feeds for the night and plan to just give his tummy a rest. They think it's just gonna take some time to wake up his digestive system after not eating for a month. Please say a prayer that all the kinks get worked out and he can tolerate his feedings again.

Aside from that issue, everything else is going really well! Dr. Draus, our surgeon, came by tonight and said he's very very pleased with his progress. He said he's relieved the feeding issue is all we're dealing with one week post-op. What a difference a week makes!

We're making progress weaning the morphine..but we still have a ways to go. Send Mr. Clay your positive thoughts and vibes while he's coming off the drugs. He's not been resting very well the past couple of days...I guess the lil guy just don't want to miss a thing after being out for an entire month!

I'm feeling so thankful for my sweet baby's 6 month birthday. Love that little turkey so stinkin' much..

Recovery update..

After a couple of rough days post-op, things are really starting to get better for us! Thank God!

Our major issue the first few days were getting his pain under control..he'd kick right through all the drugs, obviously uncomfortable. It turns out, he was having an allergic reaction to the blood transfusions he was getting. Poor baby! I feel sick thinking about how uncomfortable he was, probably itching from the inside out. It's very very rare for babies to have this type of reaction to blood. Of course, Clay has to keep everyone on their toes! If Clay ever needs blood again, we'll have to make sure he gets Benadryl before the transfusion. It seems to be nothing too concerning, but it definitely explains why he has been so hard to knock down with the sedation and pain meds. I'm sure he was absolutely miserable! Thankfully, that's behind us.

Since Friday, we've made great progress!
...His nitric oxide is currently down to 3..his milrinone dosage has been cut in half. Both of those should be gone in the next few days if he keeps it up!
...His catheter was taken out..and so was his replogle (the big huge tube going down his nose).
...He has a feeding tube and we've worked our way up to 20mL of continuous feeds, and that's increasing daily..hopefully he'll be at full feeds soon and we can get rid of the TPN fluids and lipids!
...We should be able to get his chest tube out in the next couple days (which is draining gunk out of his chest from surgery).
...And his morphine dosage is slowly coming down, too. He's not requiring nearly as many extra doses of sedatives either! It will take a long time to get him off of the morphine...and Clay will not be happy going through withdraws. Please pray he can be weaned easily.
...He had a 'sedation holiday' today, where his morphine was turned off for a couple of hours and he did well with that! I think it helped that momma was holding him through that time, too ;)
...YES! I got to hold my baby today!!! We got some really good time together.. I'm sure it felt so good for Clay to get out of that ol' bed for a while..the poor little guy is so stiff. Once he's more mobile (and it doesn't take 3 people to get him and all of his accessories out of bed), he'll never be in his crib!

I am just feeling SO relieved that things are progressing so well. All of the doctors & surgeons are really surprised that he's bouncing back so quickly. They were expecting a much much sicker baby after surgery. Clinically, it may be surprising...but I know it's because our prayers are being heard and Clay's fighting spirit ain't backin' down! All of your unwavering prayers and support is getting us through..and words cannot explain our thankfulness to each and every one of you.

I am so stinkin' proud of my sweet baby boy. He is just amazing! Y'all keep praying for his total healing.

Lots of love and peace to you all!

Repair surgery VICTORY!

Repair surgery #2 is in the books..and we are all still kickin'! Thank the Lord!

Yesterday morning before surgery, Clay was so awake and alert and he just seemed so calm. He was looking right at us as we rubbed his little head and kissed him all over. I told him about allllll you fine people, praying so hard for him. I told him to not worry, God's got him in his hands. I know he was listening to our pep-talk! He is so so brave.
Here's a couple of pics, but I wish you all could have seen him in person, being so strong before surgery:

 

They wheeled him down to the OR around 11:30 in the morning..we got a few phone calls in the waiting room to update us along the way, but Clay didn't get back up from the OR until 6 in the evening. I am so thankful we had a room full of family waiting with us..it made the time much more bearable.

The game plan changed a bit once they actually got down to the OR. First, he had to have a new subclavian central IV line put in, plus another IV in his foot--all ports for fluids, meds & anesthetics. He also had an arterial line put in his wrist to monitor his blood pressures and to have good access to draw blood gas labs.
The surgeons must've debated about what to do next, but they ultimately decided to do the diaphragm repair first. I think the big man upstairs had a hand in that decision ;)
...After the patch was placed, one of the surgeons came to the waiting room and updated me & Eric. He brought a picture they took with a scope & showed us what the hole in his diaphragm looked like. He explained how the patch was placed, wrapping it around his esophagus, so that the esophagus acts as an anchor to the patch...they feel confident that it will hold up well.
...They covered the hole with an alloderm patch, the same type of patch used in the first repair. Alloderm is a material made of natural components that is supposed to allow the body to accept it better & form better tissue to it. In the picture, our surgeon pointed out an area of tissue that visibly had blood vessels running through it--he said that area was where patch was originally placed in the first repair & Clay's body tissue had grown to it--so that's really awesome! Hopefully Clay's body will also grow tissue to this patch & it will hold forever! So he will not ever have to go through this again! Please pray it does!
...Also pray that NO INFECTION develops! This is huge for Clay's recovery.
...So, after that update, we waited for another couple of hours. Then we got word he was about to come back up from the operating room and they didn't get to put in the g-tube. They think his stomach was in odd placement & they were afraid there was bowel in between his stomach & abdominal wall. Obviously, they don't want to tack his intestines in between, so they decided to just hold off on the g-tube. The surgery for that is really 'no big deal', especially after all we've already been through. So we'll cross the g-tube bridge in a few weeks.
...Eric & I finally got to go back to see him around 7. Poor little guy looked like he'd been to battle--which is exactly the case. The surgeons and everyone were really pleased with how he handled surgery. His vitals were very good and stable.
...His nitric oxide had to be turned up to 15 during surgery, and his oxygen was on 60%, all of his vent settings have stayed the same...and he had to go back on the milrinone last night (helps with blood circulation/heart function)...but given how intense the surgery was, I'd say he's kickin' major butt!!
...Our nurses said the anesthesiologists had to bring out the hardest type of narcotics they have to knock him down--he was fighting everything, drugs & all! He was still kicking his little legs & opening his eyes last night when we were there, despite being put back on the paralytic & two different types of sedation/pain meds. One of our nurses said he'd had enough drugs to put down an elephant--poor little guy. It's pitiful that my 6 month old baby has such a high tolerance for all of these drugs--and I dread the weaning process, whenever that starts. But for now, he really needs to be kept comfortable & calm, so please pray for him! And pray for no adverse effects of all the drugs.

I am so so so proud of my Clayton Cash. He is the bravest, strongest little guy.

Post-Op Pic...He is a warrior!!!!!

All I can say is Thank God. He has brought us over another huge obstacle...and He will be with us through recovery. Mark down another VICTORY!!!

And all of you are absolutely amazing...all of the prayers & love sent to our family makes this so much easier for us. Bless you all!

BIG day tomorrow!

Alright, friends..we need BIG TIME prayers, good thoughts and vibes for all of Team Clay tomorrow!!

The pediatric surgeons rounded this morning and their plan is to take Clay down to the O.R. tomorrow morning, given that everything stays stable today & tonight.
...They plan to start out doing the g-tube, then if it seems like he's tolerating that procedure well, they will put in a broviak (a more permanent IV line).
...If he does well with those procedures, they will try to go ahead and do his diaphragm repair surgery.
..This will consist of opening his chest and suturing a patch over the hole in his diaphragm. They will try to suture the patch onto good strong muscle tissue, so that a future reherniation isn't as likely to happen. During his first repair surgery, there was hardly any tissue to sew to...thus, this reherniation. So please pray more tissue has grown during the past 6 months and that Dr. Draus can get a good patch on his diaphragm.
...They will have to decompress his left lung in order to have room to work. So he will be relying solely on his right lung to oxygenate his blood. He has done this before, so we know he can, but please pray he can handle it tomorrow!
...If at any point Clay drops his oxygen saturation levels and can't recover, they will forfeit their efforts and we will try again at a later date. The pediatric surgeons will only do what Clay can handle. Please pray that Clay will very clearly let them know what he can tolerate.
...If they get to do everything they hope to do, it will be a 4-5 hour surgery. Pray for our family's strength & nerves during the wait!

I can't imagine being a pediatric surgeon and making these decisions, that are ultimately life-threatening. They do not want to wait too long to do the repair, for fear that he will get sicker. It's a window of opportunity that one of the surgeons said only Clay & God knows when the right time is...

I do feel like Clay is very stable now, despite the alleged pneumonia that came up last week. The tracheal cultures are growing some bacteria, which the antibiotics are working to rid. But Clay hasn't really been acting 'sick'. No fever, he's not requiring much more oxygen (set on 45%), he's tolerated being OFF the paralytic since Friday, he even had a sedation holiday--where the sedation meds were turned off for a couple of hours yesterday. AND I got to hold him yesterday!!!! For the first time in over 3 weeks. Felt so good! And Eric got to hold him this morning.. And he tolerated a little bath today very well. Smells 100x better too! ha!

So, I'm feeling good about the decision to try the repair tomorrow. I'm hoping and praying that Clay can tolerate it all, that we can get it all over & done with. Recovery is not gonna be pretty. I know our nurses are dreading it...our sweet, wonderful nurses! Again, they are making sure he is covered every day, even picking up extra if he's not. I honestly don't know what we'd do without them. Yay, Team Clay!!

I can't ask it enough: PRAY! It is all we can do from the sidelines, but I know it is more than enough to get us through.

My Clay-man is a tough cookie, he's gonna be just fine. See, he's showing off his muscles:

Go, Clay, GO!!