There is a first for everything…
There is a first for everything…
Lucas was released from the hospital on Tuesday evening. With every passing day, his breathing is getting better and his cough is subsiding. He’s almost completely back to our normal busy toddler. Just a bit more sleepy. Thank you for all the prayers & support!
Upon being released, Dr. Saloman (the lead doctor at Phoenix Children’s Hospital) kept telling his fellow doctors how impressed he was that Lucas is such a happy and smiling toddler even after 26 surgeries. He was amazed at Lucas’ positive disposition and overall health. Very nice compliment.
Melissa, the respiratory specialist who delivered our home CPT vest, was in awe of Lucas’ weight and playful personality. She works with numerous children who have severe tracheomalacia. Melissa said Lucas sounded and looked great! In fact, Lucas was in the best condition out of all the tracheomalacia toddlers she’s seen in her career! Wow!!! Lucas truly is our miracle baby.
Sunday was an emotional day. During the morning, Lucas had a 2 hour period of time when no matter how high they turned up the nasal oxygen level, Lucas’ oxygen level was staying in the low 80’s and at the lowest point hit 77%. We were grateful for PCH’s quick response. Within a few short minutes, our room was filled with doctors, the respiratory support team, and nurses who quickly assessed the situation. They started Lucas on chest percussion therapy (CPT) using a vest which utilizes a vacuum to rapidly fill & deflate the vest while compressing and releasing the chest wall. CPT’s goal is to loosen up the mucus. At the same time, we gave breathing treatments with a nebulizer machine and medicine. Then, a nurse suctioned out the mucus by placing a small tube down each of Lucas’ nostrils. Lucas doesn’t mind the vest CPT. Sadly, he cries and yells “no, no more” during the suctioning. So heartbreaking to hear! Of course, I shed some tears when Lucas wasn’t looking at me. The CPT made a huge positive impact. So, we have a recurring CPT appointment every 4 hours.
On Monday & today, Lucas has been doing great! They told us he is actually progressing at the rate of a “normal” toddler with rhino/enterovirus (i.e. not a toddler with a compromised airway or weak immune system). He is also now off supplemental oxygen and just on room air… AND… wait for it…. after not wanting to eat or drink anything on Sunday… he is getting his appetite back!
The number of miracles God is working with Lucas is simply amazing. Breaking all the rules. Go Lucas go!
Here are pictures of my boys sleeping from this morning.
Overnight, Lucas was admitted to Phoenix Children’s Hospital. He came in with a fever at 102.7, chest congestion, coughing, runny nose, & the biggest issue is his oxygen level was at 88%. Now, Lucas is on nasal cannula oxygen which is bringing him up to 96%. The 1st round of labs show a viral infection with possible pneumonia. Waiting for a 2nd round xray review by the day time radiologist to confirm pneumonia.
The night on call immune deficiency doctor from Boston Children’s Hospital called PCH when we arrived at 11:30pm on Saturday evening. Boston’s doctor told Phoenix what labs & imaging needed to be performed. Plus Boston told Phoenix what medicines Lucas should be started on. Basically, Boston is taking the lead with managing Lucas’ care.
Please say a prayer that Lucas quickly beats this & starts to feel better. Never easy watching your little one be sick in a hospital.
On Thursday, Lucas turned 2 years old. Wow! When did Lucas become such a big boy??? We already miss our preemie baby who couldn’t even hold up his head on his own. Now, Lucas is a bundle of energy who is constantly running around the house while laughing and smiling. Lucas’ happiness is infectious. BTW – Lucas gives the world’s best hugs & kisses!
After Lucas was born and it was confirmed he had EA/TEF, all of our doctors kept telling us the first 2 years of Lucas’ life would be the hardest. After the 2 year mark, Lucas’ medical issues would be somewhat treated and less difficult to handle. I wish there was a quick way to explain all of the numerous highs and lows we have experienced with Lucas. Thinking about the hard road we have traveled over the last 2 years just brought tears to my eyes. Even though I have never felt so much pain and fear before, every time Lucas has a medical breakthrough or just smiles at us, Lucas makes it all worth it. We wouldn’t give Lucas up for anything. He is our world.
Thank you Lord for giving us Lucas. You are always walking this road with us. Your unyielding strength and love has given us the ability to never give up. We know you have something big planned for Lucas. We feel so blessed to call Lucas our son!!!
Below are some of Lucas’ favorite things at 2 years old.
– Words = Bye Bye, Dada, Mama, & dog.
– Color = Blue
– Play Buddies = Gigi, Nani, Papa Bob, Papa Lou, Jackie, Zoe, Logan, Ronan, & Liam.
– Favorite Place To Be = Anywhere outside.
– Outdoor Activities= Running, walking, stroller/wagon ride, running through the sprinklers, swinging, & playing with the sandbox.
– Indoor Activities = Dancing, singing, reading, playing peak a boo, & throwing/kicking the ball.
– Vacation Spot = Boston… Lucas is Boston strong!
– Sports Team = Boston Red Sox…Lucas has already attended 2 games.
– Movies = Frozen, Cars 2, Tangled, & Madagascar.
– TV Shows – Mickey Mouse, Curious George, & Clifford The Big Red Dog.
– Songs = Mickey Mouse Club House, Wheels On The Bus, Row Row Row Your Boat, No More Monkeys Jumping On The Beds, Happy by Pharrell, Sugar by Maroon 5, & Uptown Funk by Bruno Mars.
– Food = Chicken nuggets, bacon, french/sweet potato fries, cornbread, raspberries, blackberries, & bananas.
– Drinks = Water & Elecare Jr (unflavored)
– Wake Up Time = Sometime between 6am – 8:30am.
– Bed Time = Sometime between 8:45am – 9:30am…Yes, Lucas is a night owl!
– Nap Time = 12pm to 2pm
Here are some pictures from Lucas’ 2 year old birthday party.
Dr. Manfredi was going to discharge Lucas on Thursday right after surgery. Lucas woke up better than ever from anesthesia. Normally he wakes up screaming & crying which wasn’t the case this time around. But, we did give Lucas the midazolam medicine 20 minutes before the surgery to slowly get Lucas’ body sleepy for anesthesia and the drug is proven to help patients forget the anesthesia experience. So far, Lucas has not experienced any night terrors so the midazolam drug may have worked.
Unfortunately, for the 1st time ever after a surgery, it actually hurt for Lucas to even drink water. Plus, Lucas sounded hoarse, his tracheomalacia was more noticable due to a loud honking noise when breathing in, and he was very close to throwing up 3 times. So, we all agreed it would be best for Lucas to stay the night to get pain medicine via IV. It is never fun to see your little one in pain.
By Friday morning, Lucas was drinking a little bit of formula but still avoiding water. The surgical team decided Lucas was well enough for us to be released.
We flew home on Saturday morning. We received a very warm welcome from our family! Lucas ran around the house nonstop for 3 hours straight playing with Gigi & Papa Lou. He loved being home.
With each passing day, Lucas is consuming more food via mouth and is just starting to drink more water. We started with soft foods and are slowly reintroducing solid food. This time around, Lucas is taking longer than normal to bounce back.
One item of concern is Lucas still sounds extremely hoarse. His little voice has not returned to normal after Thursday’s surgery which is very odd. We have a call out to Dr. Manfredi to see if there are any home remedies we can do to get Lucas’ voice back to normal. Please keep Lucas in your prayers that his voice quickly returns. Thanks!
Below is an adorable picture of Lucas after bath time last night. He is the happiest baby on earth!!!
Happy Mother’s Day to the 2 most amazing Mothers in the world! Thank you for the endless unconditional love & support. We would have never made it through the last 2 years without both of you lifting us up during some of Lucas’ most trying & rewarding times. We love you!!! The Lord blessed us beyond measure by making us your children.
Lucas is out of surgery. He did great! Dr. Manfredi said the lower stricture looked awesome. He was easily able to get the 12mm scope through the lower stricture area. In fact, Dr. Manfredi said the lower stricture area looked even larger than after the last dilation in November. So, the food Lucas is eating by mouth is helping the esophagus to naturally grow larger. Dr. Manfredi dilated the lower stricture up to 15mm which is a first.
The upper stricture needed some fine tuning. He was able to expand the upper stricture from 15mm to 18mm which is a huge first for Lucas. Dr. Manfredi wants us to start doubling Lucas’ food size. Very exciting!
Now, Lucas is sleeping. Depending on how Lucas wakes up and his pain level we may even be able to go back to the Yawkey House tonight rather than stay the night at the hospital. But we need to wait & see how Lucas wakes up.
Dr. Manfredi wants us to come back in 4 – 6 weeks to have some more fine tuning on the top stricture. But it should only be a quick in & out surgery where we can fly in the day before. Then, we should go back to having a few/many months between surgeries.
BTW – I thought I was relaxed & calm about today’s surgery. But once I left Lucas asleep in the surgery room with anesthesia, I lost it & had a big cry in Bryan’s arms. I forgot all of the emotions which come over you since we haven’t had a surgery in 5 months.
Lucas’ surgery is scheduled for 10am ET on Thursday. This will be Lucas 25th surgery. We greatly appreciate prayers for Lucas to have another successful surgery.
Bryan & I are 99% confident Dr. Manfredi will tell us Lucas’ esophagus is holding its shape and doing well. We will be in shock if we hear otherwise. No whammies!
Here are some quick pics from our meet & greet and batting practice event with Mike Napoli. Plus, Pablo Sandoval told Lucas to come further into the field to pick up a batting ball. Lucas was shy. So, Mama eventually walked Lucas over to Sandoval who handed Lucas the ball. Super cute & sweet! As soon as Sandoval turned around, Lucas threw the ball at him. As if to say, “come on, let’s play ball”!
We thought our friends & family members might like to see our schedule for the week. Now, you can feel like you’re with us in Boston.
In the morning, we see the speech therapist who will evaluate Lucas’ knowledge for his age. She always gives us many helpful tips to keep Lucas brain active & constantly learning. In the afternoon, we are going to a Red Sox game with free tickets from Boston Children’s Hospital courtesy of Mike Napoli (Red Sox catcher). Exciting! We will arrive at 3:30pm to view the batting practice. Next, we will attend a special meet & greet event with Mike Napoli. The game starts at 7pm. Can’t wait to see where our seats will be. Crazy excited for another awesome Red Sox experience!!!
We have genetics & endocrinology appointments.
We have our immunologist & then EA surgical team appointments.
The big surgery day! We would greatly appreciate extra prayers on this day.
We should be released from the hospital by early afternoon.
We fly home!
Seriously jammed packed itinerary. We have a rental car through Tuesday since our appointments are all in different cities. Should be an eventful week.
Lucas did great in the airplane. He stayed in our row & never had a melt down moment like other nearby kiddos. Success!
After we landed, Lucas got to taste McDonald’s chicken nuggets for the very 1st time. He enjoyed every bite.
Before leaving on our trip, I put together a list of fast food items Lucas can consume which are free of dairy & soy which he is allergic to. The list has already proven helpful.
Today, Lucas ate Lay’s classic chips for the very 1st time! We decided to let him go for it since we could always take a brief walk to Boston Children’s Hospital if a chip got stuck. Ha. Lucas didn’t have a single choking issue. In fact, we gave him whole chips & he ate just the right size bites to not cause an issue. He ate an entire bag of 160 calories in less than 15 minutes! This was a big food accomplishment.