Future Lower Esophagus Surgery

On Wednesday, we had an appointment with Dr. Egan (surgeon) to discuss the future big surgery. Basically, Lucas’ lower esophagus has a .5mm section which is hard, much smaller in circumference than it should be (6mm), and appears to have strong trachea material. The future surgery would attempt to cut out the trachea material and some muscle. But, it would leave most of his esophagus fully intact. With the hard muscle and trachea material gone, then they could start stretching the lower section with the same balloon (non-cutting) technique that they are currently having great success on his upper esophagus area.

Dr. Egan wants to wait to complete the lower surgery until the top section is fully stretched to its diameter goal of 15mm. Currently, the top section is stretched to 12mm. They predict the top section will be fully stretched in 2 to 4 months. So, the future big surgery could be in 3 to 5 months. The surgeons wants a full month between when the last stretching surgery takes place and the big surgery is completed.  The future surgery would require actually cutting Lucas open. So, Dr. Egan (the surgeon) expects Lucas will be hospitalized at Phoenix Children’s Hospital for 2 – 4 weeks. For the 1st week, he will have a feeding tube. From week two on, he will drink from a bottle and rebuild up his esophagus strength. Once Lucas is back to drinking full feeds, then he can go home!

This is the last big surgery that we are aware of. We can’t wait for this portion of Lucas’ life to be done!

P.S. Bryan located this special surgery technique through his vast research. On Wednesday, we discussed the technique and medical journals with our surgeon who felt more than confident in his abilities that he and his counterpart could complete the surgery. To date, we have only found the surgery completed in Japan. Bryan keeps joking that we will be making a trip to Kobe, Japan soon! Then we will have the freshest Kobe beef burgers. 🙂 Too bad Aetna can’t be used to pay for this surgery in Japan. If it was, I’m 99% confident Bryan would be planning our trip now. 

8 Month Birthday!

So I was a bit behind on taking Lucas’ 8 month pictures with the monthly tie. Over the weekend, Bryan & I had fun taking pictures of our big handsome boy. Below are some of our favorite 8 1/2 month pictures.

Breaking news – As of Sunday, Lucas is officially crawling “commando” style. He’s so fast!

Happy 67th Birthday Papa Lou

Tonight, Papa Lou came over to celebrate his 67th birthday. Lucas loved playing on the ground, smiling, & laughing with Papa. The weather was in the mid 70’s so we sat outside on our back porch to enjoy the gorgeous weather and eat our dinner. Happy Birthday Papa!!!

Another Successful Surgery

We’re home! They took biopsies with results to come in next week. They stretched the top stricture from 11mm to 12mm. So another good day! More details will be posted soon.

Can you believe how happy & awake Lucas was on the drive home which was only 3 hours after the surgery was completed?!?!

Surgery on Thursday

Tomorrow (Thursday), Lucas has a somewhat emergency surgery that was just scheduled this afternoon. Eager to get some answers about where the blood in Lucas’ stool is coming from. Feeling blessed to have two amazing surgeons who fit Lucas into their schedule. Of course, trying to push the fear out of my head.

GI & Hematologist Appointment Update

Our appointments started out with a bit of a downer. All of the 7 stool samples tested positive for blood. So, there has been blood in Lucas’ stool for at minimum 6 days. The more detailed stool sample results won’t be available until the end of the week and the virus test results won’t come in for a few weeks. She mentioned the blood could be from something big like an ulcer, polyp, or the esophagus repair site. Or it could be from something simple like a virus, infection, or bacteria. For now, she wasn’t willing to even guess. Once the first round of test results come in, then our GI doctor will create a game plan.

She was happy with Lucas’ weight gain. He’s in the 40% – 50% range for weight, height, & head circumference this is without having a correction for his birth prematurity. As normal, she commented on how Lucas is such a happy baby even when he’s having an issue. She said “you would never know he was sick by looking at him since he looks so great!”

The hematologist gave us good news that all of Lucas’ blood results were within the normal range. This is a 1st! Lucas should be able to handle a small amount of blood in his stool for another week without his blood results going down too much. If we hit 2 more weeks of blood in his stool, then he would recommend we re-complete the blood tests.

Feeling confused and scared. But hopeful Lucas will have some answers soon. Praying this is something small that could even fix itself. For now, we will continue to cherish and love Lucas! We will make sure every moment he is awake is filled with happiness.

Blood in Stool

On Wednesday, Lucas started to sleep more than normal during the day. On Thursday, he started to have diarrhea every 30 to 90 minites. Some of the diapers were filled with black stool which reminded us of back in June when Lucas had a substantial amount of blood in his stool. On Friday, we brought 2 stool samples to PCH for testing. Both came back as positive for blood in the stool. Poor baby boy. Over the weekend, we made some more stool samples for further testing. We should have the more detailed results by Friday. Today, we have an appointment with our GI and the hematologist doctor to get some answers. This could be a big issue or it could be a stomach virus, bacteria, or infection.

Through this all, Lucas has been in good spirits and happy when he’s awake. Pretty amazing.

Happy 38th Birthday Dada!

Yesterday, Bryan turned 38 years old and Lucas turned 8 months old. Big day in the Cox household!

The Lord hand picked Bryan to be Lucas’ father. The Lord could not have found a more perfect man to protect, love, and provide for Lucas. I feel so honored to have Bryan as my loving husband and best friend! Happy Birthday my love!!!

Here are some pictures from the surprise birthday party that was thrown at our house on Monday night. Little Lucas didn’t enjoy when everyone yelled “surprise”. Ha! Thankfully Lucas quickly calmed down & had fun playing with everyone.

Developmental Milestones

We’re so proud of Lucas’ strong ability to hit developmental milestones. Below are some of his many accomplishments which are all before turning 8 months old.
– Sitting up.
– Scooting.
– Rocking back & forth while in the crawling position with his chest off the ground.
– Spinning around different directions while on his tummy.
– While using his arm muscles, able to move from sitting up to on his tummy.
– Rolls from back & forth from his tummy to backside.
– Plays “peak a boo” by putting a burp cloth or bath towel over his face & then lowers the item. This always brings a big grin to his face!
– Waves “bye bye”
– Rolls a ball.

Below is a link to an adorable video of Lucas rolling the ball. We all had fun!http://www.youtube.com/watch?v=8bpMkvGTHck

New Battle – 2nd Stricture

The original stricture closed back down to 8mm since the last surgery 4 weeks ago. The surgeons stretched it to 11mm. Success! However, they found a 2nd stricture in his esophagus. The original stricture was created when surgeons connected Lucas’ esophagus to his stomach when he was just 24 hours old. The new stricture most likely was there at birth. We saw a little glimpse of the 2nd stricture on an ultra sound when Lucas was just 4 weeks old. However, the surgeons just now were able to get the original stricture larger enough that they could continue down the esophagus with their scope to actually see the new stricture from the inside to confirm it is indeed a 2nd stricture. It is 6mm wide and only a half an inch away from the stomach opening. The surgeons tried to dialate the area to no avail. This stricture is extremely firm. In the coming weeks we’ll have some more imaging done to figure out the new battle & create a game plan. The hypothesis is that the 2nd stricture has firmer tissue that is normally found in his trachea rather than what should normally be very thin tissue in the esophagus. In turn, Lucas has a section of his trachea which is extremely soft/thin in his trachea. Basically, they think the two tissues accidentally switched places while Lucas was being created in my stomach before he was born. So, he has tracheomalacia which is a soft floppy section in his trachea that makes his breathing loud. By 2 – 3 years old, Lucas’ body should grow enough and firm up his trachea enough that the tracheomalacia should resolve itself. The 1st & 2nd strictures will both need surgery to stabilize the issues.

For now, Lucas can continue eating formula and level 1 baby food. However, they don’t want Lucas to increase to a higher level of baby food until the 2nd stricture has been improved via surgery. Otherwise thicker or chunkier food could get stuck.

We are happy the new issue has been found so early in Lucas’ life (before he’s even 8 months old). At the same time, we are not excited for this new battle. We know the Lord will give us the strength we need to fight the battle. We’re just feeling so beat up already. Instead we need to focus on the blessings like the fact that Lucas is happy, handsome, and hitting all of his developmental milestones. We will make it through this storm! Hopefully we can fight the battle for Lucas and have most of his issues resolved by 2 years old so he never remembers the pain or lengthy amount of time in the hospital.

Monday Dilation

Monday at 11:15am is the next dilation surgery. This time, a new surgeon named Dr. McOmber will lead the way with Dr. Egan (our normal surgeon) taking the secondary position. Lucas will have a new stretching esophagus surgery technique called strictureplasty. Since this is a more invasive surgery, there is a high likelihood Lucas will need to stay the night at Phoenix Children’s Hospital for observation to ensure no leaks. Please Lord place your healing & protective hands on Lucas.