Easter!

Happy Easter to everyone...we are SO glad to have a reason to celebrate and the hope of everlasting life! We had a beautiful day in southeast MO...Spring is coming!

We started out with a couple firsts....the first trip to church with the boys (this was the first time that the boys have been healthy enough and with flu season winding down). They actually did really well and only got loud a couple times, which was caused by a 'disagreement' on who should have which toy. It was wonderful to be back in church too! Then Carson experienced his first Walmart excursion : ) ....he definitely took it all in with wide eyes.

This afternoon and evening was filled with Easter egg hunts (two of them) and yummy food at Mimi & Papa's. Here are a few pictures...

P.S. Carson G-tube seems to be slightly better...still no leaking & no more puking! Praise God! We will be setting up follow up appointments in the next couple weeks. Thanks for the prayers!

Carson is off to find some eggs (he is high steppin')

He found some : )

Kellen is surveying the yard...

...and he is off!!

Now a timeout for the cat.

The egg hunting crew!

Cousins!

Hamming it up!

Now for the second hunt!

I think he spotted another one...

These had candy in them & Kellen found a Cadbury egg...

...and he liked it (take note of the drool : ) LOL

More good stuff...

We have continued to do well at home...Carson is doing really well, appears to be gaining some of the weight back, has only thrown up 3x since we've been home (which two of those times were somewhat induced by us - on accident), he continues to willingly put food in his mouth (still not eating any volume but tasting ALOT more!), and the pathology report came back on the small mass they removed just below his trach. It WAS a hemangioma...so NOT residual teratoma, which was GREAT NEWS!

Please do be praying for his G-tube site. Although it is not leaking anymore, it is not healing like I would like to see. We have tried a couple different things to get it to heal but so far, really no luck. It has an area that I believe is skin breakdown but the spot it is in, is difficult to dress or treat with anything.

Kellen is doing really well...eating more and more and is in to EVERYTHING! He is SO passionate about life : ) The boys have also been interacting more and more...giving hugs randomly, helping each other out, sharing, or NOT sharing, occasionally pushing, pulling, and hitting but still everything that is NORMAL (such a wonderful word : )

We have been able to play outside the last three days and the boys just LOVE it! Looking forward to the spring weather and more time outside!

Other things that we could use prayer for is in deciding whether or not to pursue a surgery for Carson's slow gastric (stomach) emptying or look elsewhere for possible treatment. Since he isn't throwing up anymore, I have a really hard time willingly putting him through ANOTHER abdominal surgery. However, the surgeon said a G-button (the lower profile tube) may never work as long as he has a problem with emptying his stomach. Decisions, decisions....

Much thanks to everyone for the prayers...I'm waiting expectantly for an Easter miracle with his G-tube : ) Happy Easter to everyone!

LOVING the wagon ride!

Carson is supposed to be asleep but he is talking and playing instead : )

Kellen worked really hard to pull Carson on the horse! SO funny!

Part of our Easter egg coloring crew! (Mimi hasn't been feeling good so she is sporting the new look : )

Carson's turn...

...and his response after the applause was TOO much for him.

"Ooooooo!" Kellen was SO excited about dropping the eggs in...

Update from Dexter

Well, we have been home for 48 hours and so far, so good overall. Carson has only thrown up one time...this seems easy compared to what he was doing. I'm just praying that he can continue to keep the majority of his feedings down because he has lost a significant amount of weight (& no wonder because he didn't eat for almost a week)...you can tell it in his legs, face, hands, & feet : ( But he is SO happy to be home and be with Kellen. And I think Kellen is ecstatic to have Carson home too!

Another praise and I'm still somewhat speechless...Carson has started WANTING to put food (well, anything) in his mouth! This means we have to watch him very carefully because he tries to eat whole bites of things (puffs, french fries, toast, grilled cheese, strawberries, etc.) and he doesn't know what to do with it once he takes a bite. I think it may have something to do with getting more teeth & just wanting something to bite on but I'm not complaining!  He has done better the last couple days with drops of liquid, yogurt, or baby food in his mouth. I don't think that this stage will necessarily last but it is a comfort to know that he can manage small amounts when HE wants to.

Sarah did a good job updating along the way...please continue to pray for healing of Carson's g-tube site...his current site doesn't look as good as the one from Cincinnati (St. Louis had to revise the stoma when they reduced the hernia). It has a small area of reddened skin that isn't as tight around the tube. The nurses said it should heal but I'm never too confident when it comes to Carson's g-tubes :/ The day after we returned home, the g-tube was leaking. 'Are you kidding me?!?!'...this what we had surgery for in the first place. We tightened the g-tube up & since then, it seems to be doing better but who knows! I just don't want these surgeries to be pointless!  And then secondly, please pray for guidance for us...to know what steps to take with this new information we received from our latest stay in St. Louis (the possible damage to the vagal nerve that is effecting his gastric emptying). Should we do another surgery to attempt to improve the speed at which Carson's stomach empties or should we look into other options? What the surgeon said made sense, yet I just hate to put Carson through ANOTHER abdominal surgery, with ANOTHER incision, and ALL the risks that come with any surgery.

Thanks again for all the prayers along the way! It seemed like such a LONG week but I know that is nothing compared to what some families are going through or have gone through. We are so glad to be home and back to our normal schedules!

Good news

Carson gets to go home!!! Praise Jesus : ) They do believe we have found another area the teratoma damaged and believe the slow emptying of his stomach is due in part to the teratoma's affect. His vagal nerve probably was damaged from the teratoma and so his sphincter in this stomach is not opening properly, so it does not let food pass out of his stomach as fast as it should. Babies should empty their stomach about 1 hour after eating and Carson takes over 4 hours to empty his stomach which is unusual. This isn't an urgent problem, but the doctors will be monitoring and determine what steps to take in the future. The plan now is to carry his puke bowl around and just get really good at catching puke : ), which Liz and Preston are already professionals. For now, Carson is super excited to go home and get uninterrupted sleep and Kellen can't wait to have his mommy, daddy, and buddy home. Thank you all for your prayers. We are eternally grateful.

Patience

Preston, Elizabeth, and Carson are getting frustrated with the continued stay in the hospital. They are doing much better with being patient than most would, but are ready to get home and back to a normal routine. What was supposed to be a simple surgery for the G-tube with the more difficult part being the airway is turning into quite a situation. Carson still was not emptying his stomach properly, so they sent him back to do a G-tube series this morning. Elizabeth just told his they still do not see his stomach emptying properly on this study. They do not know why, and Elizabeth and Preston do not know what the next step is. It is so difficult to try to entertain a child in a hospital, let the child get sleep (because he is woken up all the time with another individual wanted to come in and poke and prod), try to get sleep yourself, and be away from your family. They are handling it like saints, but please keep them in your prayers. We are praying for wisdom for the physicians, because we all are at a loss as to why Carson is not emptying his stomach. Praying for God to heal Carson and send peace to Liz and Preston that he is protecting and caring for Carson.

Wed March 20, 2013

Thank you all for your prayers.  Carson was feed at 3:30pm, but had fairly significant residual food in his stomach 4 hours later; as a result, they feel it is important for him to spend another night in the hospital.  Please keep up your prayers for Carson's healing, and continued patience for Liz and Preston.

Good news

Carson is out of surgery. He did not end up having a twisted stomach. The doctors found an internal hernia. His omentum (layer of tissue around the abdominal cavity) developed a hole and his stomach and part of his colon had moved through the hole and were creating an internal hernia. They fixed this hole by creating a horseshoe shape so nothing can get caught there again. This probably occurred during one of his procedures to place a G-tube. The good news is they were able to use the newest G-tube site, but did have to extend the incision more to get the hernia repaired. Overall, Liz and Preston feel it was a successful surgery. They will start feedings in 24 hours, and then hopefully, he will tolerate this well. Be praying for his healing and pain after this procedure. The first day or two after his last surgery was difficult for him and Liz and Preston. We continue to pray for healing and hope to have our sweet boy back in Dexter feeling great very soon.

In surgery

Elizabeth just texted me at 12:30 and they are on their way to surgery. Carson's blood sugar came up, and off he went. We continue to pray.

March 19, 2013

Hopefully, surgery will be today early afternoon. Unfortunately, Carson has not been urinating well and his blood sugar is 53 (low) today. They don't know exactly why he isn't urinating. They are going to give him more dextrose to help with the blood sugar, but poor little guy hasn't gotten much in the way of food since last Wednesday. He has IV fluids, but still is not urinating, so we just keep praying. As I hear more, I will try to keep things updated.

More info

I just spoke to Elizabeth on the phone. They are at Cardinal Glennon. They were evaluated and the doctors believe Carson's stomach is twisted. As a result, food is not able to pass through the stomach. This could have happened before, during, or after his procedure on Thursday. Ultimately, as frustrating as it is, we are just praying we can successfully get this fixed so our sweet boy can come home. With his stomach being twisted, our biggest prayer is this can be fixed without harm to Carson, it can be done without having to open him up all the way (so hopefully done laparoscopically), and he can heal well. We do not know what time he will have surgery tomorrow, because the doctor's schedules are busy. We will update as we know, but please just pray for wisdom, skill, knowledge for the doctor's and success. They may have to make a third incision for his G-tube, because if his stomach is twisted the current site probably won't work. Thank you for your prayers. Carson has been a trooper through this whole process and continues to light up the room with his smile.

Prayers

Please be praying for our strong little guy! Carson has been vomiting everything he has been given since Friday night when he got home from surgery. Preston and Liz called his doctors and spent this morning traveling up to St. Louis for Carson to be seen. So far, they have done a study to determine if the tube is in the right position and if anything is emptying from his stomach. The G-tube appears to be in the right location, but nothing is exiting his stomach. Essentially, he has been throwing everything up, because none of it is leaving his stomach, but more food has continued to be pushed into his stomach. My heart just breaks for him, because that would be so uncomfortable. The miracle is that he still smiles through it all. We are just praying for answers and ability for the doctors and staff to fix this problem. At this point, they are unsure what the problem is, so we pray for wisdom. Also, please pray for Preston and Elizabeth for peace, strength, patience, and wisdom. Thank you

Update from HOME!

I am SO sorry that it has taken me so long to get back on here...things were just more hectic than I imagined but I am sorry because I know how hard it is to wait for an update. Thank you for ALL the prayers...like Sarah updated on Friday, Carson did well with the surgeries and the surgeons said they were able to accomplish what they had hoped and planned. We will find out results from the biopsy within the next couple weeks. Carson did well in the hospital but you could tell that he wasn't himself...the first 24 hours, were a bit rough.  Carson was either asleep or wanting to be held by me. I didn't really know what to expect...this was the first more invasive surgery when we knew there would be some pain involved. The slightest noise, look, or just about anything would make Carson cry. Even Mimi & Papa couldn't get him to smile at times (which isn't normal). We were discharged on Friday afternoon after Carson was fed and made it home late that evening. We were extremely glad to be home!

Carson kept the majority of feedings down on Friday but then puked at least once after EVERY single feeding on Saturday. I didn't get too worried until Saturday evening when we measured the amount he puked up. He puked up MORE than we had just fed him. SOOO...we knew his belly wasn't emptying and we became slightly concerned about a possible ileus (bowel obstruction after surgery) and dehydration. After consulting with our in-family medical team : ) we decided to use a syringe before his night feedings to draw out any food left in his belly and start fresh with Pedialyte. At this point, I was thinking we were going to have to go up to Cardinal Glennon today to have an IV placed for fluids. We tried two feedings of pedialyte through the night (early Sunday). Carson kept both feedings down and then, this morning, he had his first bowel movement since surgery! Hallelujah...never so glad for POOP!!! Haha...I felt like we were back in our NICU days : ) Anyways, today was much better, Carson was happier and he kept all his feedings done...partly this is because we continued to check the residual food left in his belly before feeding him each time (& we would discard some if there was still a significant amount).

We will see how the next several days go and take it one step at a time! It is SO nice to be home. Carson and Kellen were able to enjoy the nice day on Saturday (the puking didn't slow Carson down too much!) And they played SO well together today!! I'll post some pictures...gotta LOVE these sweet boys! We have noticed that Carson seems to be talking more and more clearly since having surgery. This is likely because his airway is a little more open.

Now, to what we found out about our future procedures. Like Sarah had said, we are still looking at 4-6 more surgeries. In the immediate future, we will be having Carson's tonsils and adenoids taken out (hopefully this can be done in St. Louis) in 6-8 weeks. And then after an additional 6-8 weeks (middle of summer), we will likely go back to Cincinnati to have Carson's epiglottis worked on. The epiglottis is the flap that covers the trachea whenever you swallow. Carson's is tightly curled and will need to be opened up. These surgeries need to be spaced out to allow proper healing. The surgeons said that if they try to do too much all at the same time, scarring can result and cause subsequent problems.

As always, we thank you for your continual prayers. And please continue to pray for...
1. Carson's recovery from this surgery and for his complete healing in God's timing.
2. That Carson is able to keep his feedings down as we progress back to his typical diet.
3. Guidance for Preston and I in ALL the details... to know when to take the next step next, when to ask more questions, where to have these upcoming procedures done, etc.
4. Everyone involved in Carson's care.

Friday afternoon...You could tell Carson was starting to feel better : ) His infectious smile! (You can kinda see the incision below his trach in this picture)

Kellen enjoying the beautiful day on Saturday : )

Carson LOVED being outside...LOOKS like he is ready for the 4th of July. LOL!

Playing in the rocks...

Pulling weeds....(Preston sure wasn't complaining about this)

Wagon ride...Carson is telling Nana to keep moving!

I think Nana enjoys these walks just about as much as the boys : )

Talking the whole way : )

Look at that grin!

Hugs this morning!! The 'open mouth' hug

The 'I'm going to tackle you' hug from Kellen! SO glad we caught a picture of this!

Prayers answered

So sorry it has been so long without an update. Between surgery, travel, no sleep, and everything else, it just has taken longer. Carson came through surgery beautifully. The ENT doctors were pleased with what they accomplished. They removed excess lymphoid tissue, granulation tissue, and biopsed a small mass to make sure it was not a reccurence of the teratoma. The G-tube site had not healed from when it was placed when he was in St. Louis NICU, so they also closed that site and placed a new G-tube that will hopefully heal appropriately. They cannot use the G-tube until 12 PM today. If Carson tolerates the feeding at noon, the Clarks can return home in the early afternoon. We are all praying it goes well, because it would be so nice for them to get to go home soon. Carson had a rough evening yesterday after surgery, because he was in pain and could not move because of all the tubes. However, he has done much better this morning and we even got a picture with his sweet, precious smile. He is such a fighter and so courageous. We love him tons! The doctors do feel he will need 4-6 more surgeries to complete the work on the airway. For now, we are just thankful he did so well and look forward to lovely Spring days and time playing. Thank you to each one of you for your prayers. We are extremely grateful. God is good all the time, all the time God is good!

Surgery is scheduled!

I spoke with Cincinnati this morning...surgery is scheduled for Thursday at 10 am (EST). We have to be there by 8:15 for pre op. We will be leaving at midnight the night before. Thank you in advance for all the prayers! I'll try to update as soon as possible after surgery but not sure what our internet access will be like and how Carson will be doing. Praying especially that Carson recovers quickly!

A huge prayer answered...as you all know our nursing has occasionally (or frequently) been a source of stress for us. We will get good nurses and then they will leave or take different jobs. So, one of our night nurses recently told us she was looking for a position closer to her home. This was our main night nurse who we feel most comfortable with, so I just started praying for the details and trying not to worry about it. Well we found out this week, that she received a raise to cover her gas expenses. She will be staying here (at least for the immediate future)!!! Thank you God!

Surgery is coming up!

Surgery is scheduled for this Thursday (the 14th!)...praying that Carson remains healthy until that time. We had a little scare last Wednesday into Thursday when he ran a 102-103 deg fever, had increased secretions, and swollen lymph nodes...but turns out, it was just a late reaction from his MMR vaccine. Talk about giving us a slight fright! I should find out what time surgery is scheduled and when we have to be there tomorrow or Tuesday. We are planning to drive up the morning of surgery. It is more work to stay in a hotel one night than it is to just make the trip right before surgery. Prayers for all the details of the trip, peace for me & Preston and the rest of the family, the least amount of pain for Carson, and the hands of the surgeons. We will find out after surgery how long we need to stay in Cincinnati. Kellen is going to stay in Dexter with Mom until we know how long it will be.

Here are a few more pictures : )

Carson loves talking to his 'best friend' in the mirror : )

"OH NO!" - one of our new faces...the picture doesn't do it full justice

Now for our Indian chant! "Aw! Wa! Wa! Wa!"...Kellen thinks the back of his hand is a better technique : )

Everything that has wheels gets turned over now so the boys can service the tires. Ha!

Carson is ready for baseball!

HEAVEN!! Reading bedtime stories..at least while it lasts!

More visitors! Yay! Thanks for stopping by on your way through!

They loved the little dog!

More walking : ) He is getting more confident in himself!

Carson's big news : )

 

 Carson has taken his first sequential steps! He loved the cheering and couldn't wait to do it again and again. So much fun to watch!