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!

We have made progress!

ONE year ago today, we busily and anxiously packed things up and prepared to bring the boys home to Dexter for the FIRST TIME. It is amazing to think back and see how far we have come. I can honestly say that I did NOT know how difficult this year would be, especially the first several months but I know that was God's way of protecting me because I probably would have buckled under the weight (but isn't that how God works...he only gives us what we can handle at the time : ). We left our 'safe' world of the NICU and came home to a completely different world. We have had more people (not even counting family -although some feel like it now) in our home than I would have ever guessed. Preston did not know he would have his mother-in-law or sister-in-law living with him at most times for the better part of a year : ) We changed what was the nursery into a revamped hospital room. We (Preston and I) didn't know we would NOT sleep a full night in the same room again (except the times we get a night away).  But on a more positive note, we didn't know the friends we would make that otherwise would never have met. We didn't fully understand how blessed we are to have a one-of-a-kind family. We would never have guessed the amount of support we have received from family, friends, and the community. We have learned so much about the power of prayer and trusting fully in God's plan. We will never be able to thank everyone enough because it was not by our power alone that we survived this first year.

Carson's favorite nurses from the NICU

Ready for the ride home (a year ago)

And to see how much the boys have changed and progressed is truly a miracle! A year ago, Kellen was frequently just held and carried around. Carson was secluded to the nursery the majority of the day (because he needed the oxygen and humidified air that was only available in his room). His alarms went off several times an hour which required our immediate attention. He had to be suctioned approximately 45-50 times a day. We were supposed to trust nurses that we had never met before and someone stayed up at all times. WOW...we have come a long ways! Now, the house is quiet because the boys are both asleep but just a little while ago...Kellen was running around with Carson crawling behind. They were playing in the laundry basket trying to shake it side to side and laughing at each other. Carson is no longer on oxygen and is suctioned 10x or less in a typical day. God is good and I am so glad he gave us these TWO precious boys!

We had another small miracle...Carson went over 24 hours without puking!!! It has probably been two months since that happened. It's the small things that matter : ) The boys also made their second trip to the Petelo and they didn't get sick : ) YAY!

Lunch around Nana & Poppy's table : )

Kellen's favorite toy...Olivia (an old doll of mine : )

Look at this monster truck!!

Checking out the 'farm' with the guys!

Watching Penelope & Tuna...one of their favorite spots!

It was SO great to see some of my friends! Thanks for coming out to the house Erin!

Our favorite PJs

Reading books with Ra-ra

Back at home...Kellen is checking out the plumbing and Carson must be his assistant : )

Playing in the laundry basket...it didn't used to be such a tight fit : )

We have a date!!! Praise the Lord!

YAY!!! I got a call this morning from Cincinnati that we are down for Carson's first surgery Thursday, March 14th. This is actually earlier than we thought and will work out great because Carson should be recovered for Easter! This first surgery will include removal of the suprastomal granulation tissue (just above his trach), as well as a lingual tonsillectomy (removing excess tissue at the back of his throat). They are also teaming up with GI & General Surgery to close Carson' current Gtube site and will relocate it. This means that he will eventually be able to switch over to a button (a lower profile tube) as the new site heals, which also means less care required for us and less tape & 'stuff' on his belly.

SOOO...let the prayers begin for safe travels, good health leading up to the surgery for Carson and all of us, for the surgeons that will be working on Carson, and for ALL the other little details that go into traveling with Carson.

Please also be praying that Carson continues to get better. We are going on a week of Carson being sick : ( he is getting better slowly but surely. It is just amazing (& sad for Carson) but what is only a runny nose and very slight nasal congestion for Kellen is a full blown sickness for Carson. It is hard to understand what this is like for a child with a trach. It means, at times, suctioning his trach every 10 to 15 minutes, him not getting to wear his Passy Muir valve because his secretions get too thick, him coughing REALLY hard, and him not sleeping well which means Preston (or whoever is staying up with him at night) does not get much sleep either. Anyways, please be praying that he continues to feel better. He is now able to wear his valve for a few hours a day. You can tell he likes to have it on because he can then make noise : ) I think it is so much worse for Carson simply because when Kellen is exposed to a virus (say it is through the air) he inhales it through his nose & mouth, where Carson inhales it into his trachea so it starts out being deeper simply because of the entry point, if that makes sense. No doctor has ever explained it to me like that but it makes sense to me.

Here are some more pictures from the past weeks. Happy belated Valentine's Day also! We had a wonderful night...I made filet mignon, along with the sides, for Preston (Mom helped too : ). It turned out very well...Preston even commented at different points "I've had a lot of steaks and this is definitely one of the best!" "I think this is the best meal you have ever made me." I am so thankful that one, Preston is easy to please when it comes to food : ) but he is also very appreciative of the food I do make.

They LOVE books! (especially the one that has wheels : )

...and 'Spot' books

...and the whole box of books!

Papa's new contraption...HORSE rides! The camera's battery died before I got pictures of Cowboy Kellen

Trying out the mohawk (thanks to Aunt Ra-Ra - that's Sarah)

Kellen's 'do

Kellen loves running around without his clothes on...who cares that it is February?!?

Valentine's Day meal! I had some of the best Valentine's!

Checking out their personalized Valentine's Day cookies all the way from Kansas! What a sweet sweet gift!