Tonight during dinner, Lucas said “I love you” back to Dada!!! He totally took us by surprise. Lucas was being really cute & babbling. So, Bryan felt compelled to say “I love you”. When Lucas repeated the amazing phrase back, we cheered & clapped with joy. Such a great moment!!!
Lucas is scheduled for surgery on November 6 & 14 at Boston Children’s Hospital. He will stay overnight in the hospital after each surgery. If all goes well, the plan is for us to go home on Sunday, 11/16. It would be such a blessing for the Boston trips to get shorter & shorter.
Sorry for the delayed update. Time quickly flew by.
On last Friday, Dr. Manfredi ended up doing a significant amount of cutting on the lower esophagus. He even removed some esophagus tissue which caused stricturing on one side. So, we ended up being admitted to the Hospital over the night for observation.
For a few hours after the surgery, we were under the impression that instead of going home over the weekend, we wouldn’t be able to go home for a few weeks. The idea of not going home made me fall apart and cry like a baby. We never showed our disappointment to Dr. Manfredi. Luckily, later in the day Dr. Manfredi visited our Hospital room and conveyed after further review he wanted to give the esophagus a break to heal & wouldn’t be scheduling another surgery for 3 weeks. Just enough time for us to go home! Now, I cried tears of joy once Dr. Manfredi left the room. Yippee!!!
We all flew home on Sunday on a 5:45am flight. Crazy early! But, getting less than 2 hours of sleep on Saturday night was well worth it. Once we landed in AZ, we were overjoyed with happiness! Like Dorothy says in The Wizard of Oz, “There is no place like home”. 🙂
The game plan is to go back to Boston for the next surgery on November 6 or 7. Most likely we’ll have another surgery the following week. Then, we should get to go home for a few weeks break and even get to spend Thanksgiving with our family. We are especially grateful for all our blessings over the last year.
Next surgery is Friday (tomorrow) at 10:30am EST. Praying it goes well & we get cleared to go home. Pretty please!!!
In between surgeries and doctor appointments, we’ve made sure to add in some fun moments. Most notably, Gigi has been extremely helpful and constantly increases the fun factor! We don’t know how we could have made it through this trip back to Boston Children’s Hospital without her.
Below are some of our favorite pictures from the trip thus far.
Walden Pond (where Thoreau wrote)
The changing of the leaves are gorgeous to see.
I love you Mom!
Family picture on the beach at Walden Pond.
Lucas’ 1st time walking on the beach. Plus, he loved drawing with the stick on the sand.
Love the lighting in the background. Lucas was having so much fun.
It was windy & a bit chilly. But that didn’t stop us from having fun!
Mr. Smiley Pants loved the beach.
Lucas looks so much like his handsome Dada!
Lucas could be a GAP model. 🙂
Big smiles with Dada.
Gigi went crazy and decide to get her feet in the freezing cold water. I love the surprised facial expression she has when the cold water 1st hit her feet. Ha!
Lucas freaked out and was nervous for Gigi when she went in the water.
Bryan wiped off the sand from Gigi’s feet. He’s such a good husband/son-in-law.
Beach time with Gigi/Mom & Lucas.
Boston Rose Garden
My Mom knew the name of every rose. I swear she is the flower whisperer!
Boston Red Sox Team Store
Could Lucas be any cuter???
Watch out ladies. Here comes handsome!
Last week’s speech evaluation went great! Even though Lucas was born as a preemie at 34 weeks, he is right on track for his speech & level of understanding as if he was born full term. Phew! Sometimes you just need to have a specialist tell you everything is going well. Plus, it was nice to leave another appointment with good news. 🙂
Today, Lucas turned 17 months old. Lucas was “solid” for the milestones between 12 – 15 months. He’s already achieved a good amount of the milestones expected of a child between 15 – 18 months old. Since Lucas is constantly having surgeries which can sometimes put a child behind, we were a bit nervous on how the evaluation would go. Of course we shouldn’t have been worried. Our miracle baby likes to constantly surprise us!!!
It’s hard to describe the emotions when you have a day like today. If I think at all about how things went, tears quickly fill up my eyes. Tears of joy.
Lucas was a little trooper yesterday not being able to eat the entire day. We gave him Senna Syrup twice to produce bowel movements and an enema in the evening. We didn’t get to bed until after 1 am, and then we had to wake at 4 am for another enema and our eventual arrival at the hospital by 5:30 am. For what its worth, waking up at 4 am to give an enema to a 16 month old will not make my “Best Ways to Start the Day” list any time soon.
The rest of the day, however, could not have gone any better. As Jill mentioned in a previous post, there were really three procedures today:
- An esophageal dilation
- A colonoscopy
- Lucas’ second Fecal Microbiota Transplant
Dr. Manfredi was “really pleased” with how Lucas’ esophagus looked. The top stricture, at the anastomosis site, is still wide open and looking great. He didn’t do any work at that site today. The bottom congenital stricture is also healing up really nicely after the extensive work done last week. The even better news was that Dr. Manfredi was able to pass a 12 mm balloon back-and-forth through the stricture without resistance. This was awesome news. It is exactly where we want his lower esophagus to be. He also cleared us to eat food again, which we are sure Lucas will be very excited about. The only thing Dr. Manfredi did at the lower site today was inject some steroids to promote healing – no dilatation. He will look at the congenital stricture again in a week or two to see how it continues to heal. My impression from Dr. Manfredi was that it looks so great, that if we can get this to heal well now, that we will be able to go a long time before our next dilation.
The biggest news of the day, however, was the colonoscopy results. Both Dr. Russell and Dr. Manfredi said that Lucas’ colon looked great. They were also able to drive up into the ileum, the final part of the small intestine, and that also looked great. They did take biopsies, but visually, there was no sign of Crohn’s Disease. This awesome news was so shocking to me, that it almost seems unreal to type. Lucas’ symptoms matched Crohn’s so well, but God has a different plan and keeps teaching us to expect miracles from the power of your prayers.
Lucas’ also had his second Fecal Microbiota Transplant (FMT) today. You may recall that a few months ago, Lucas became the first child at Boston Children’s Hospital, and one of (if not the) youngest children to ever have an FMT. Unfortunately, and despite the incredibly high success rates for FMTs, it did not succeed. Today, we did a few things differently. The biggest change was that today we used stool from the “poop bank” provided by OpenBiome. Dr. Russell’s early Crohn’s research suggests that using stool from an unrelated donor might actually yield better results. For that reason, and a few other reasons, we made the difficult decision to go with the bank this time. Like any donor product, such as blood, it is not without risk, but we felt the benefits outweighed those risks. Also, since this FMT was administered via colonoscopy instead of NJ-tube, we gave Lucas some Imodium AD and had him lie in a head down position for a while in an attempt to keep as much of the transplant intact for as long as possible.
Our mega-prayer now is that this second FMT will be completely successful, clear Lucas once-and-for-all of C. Diff, and that with C. Diff gone Lucas will make quick big strides against our two biggest remaining hurdles: rickets and immune deficiency. Yes, it’s possible. God still makes miracles happen every day.
With God, all things are possible. -Matthew 19:26
Daddy took Lucas back to the operating room. Lucas fell asleep before surgery started. So, the anesthesia mask was administered while Lucas was peacefully sleeping in Daddy’s arms. Now, the waiting begins.
Lord watch over our handsome baby boy. Protect his brain, heart, and entire body. Please let us get rid of C. Diff.
Lucas’ surgery is scheduled for 7:30am on Friday. Our arrival time at the hospital is 5:45am.
The surgeons will complete a colonoscopy, Fecal Microbiota Transplant (FMT, stool transplant to hopefully eliminate the C. Diff infection he’s battled since January), and a scope down Lucas throat to determine how last week’s dilation is healing which in turn should let us know when we can go home and/or have the next dilation.
Today, Lucas can only consume clear liquids. He tried orange jello for the 1st time and it was a big hit! Every jello cup has 90 calories. So maybe he’ll end the day with close to 600 calories. Better than nothing.
Tonight & tomorrow morning, we need to administer an enema on Lucas. So excited for that treat. Ha! We already gave Lucas the senna syrup which kick started his stooling. He has one more dose of senna this evening.
This afternoon, we took Lucas outside to get some fresh air (see below picture). Surprisingly, he’s been in fairly good spirits. Praying he gets some rest tonight in between stools. Most importantly, praying the surgeons say his colon looks perfect with no issues.
The week has been filled with many doctor appointments at Boston Children’s Hospital. Mostly with good news.
– Hearing test concluded Lucas has “robust” hearing which is not a surprise to us. Seriously, he has crazy good hearing!
– The microarray results showed no significant findings which helped us rule out one type of immune deficiency that our immunologist suspected. Very good news. Next, Dr. Nowak (genetics doctor) is working with Aetna to see if we can obtain an approval for more detailed genetic testing.
– On the down side, over the last 6 days, Lucas has gone from weighing 10.25 kgs when we arrived in Boston to now only weighing 9.98 kgs. Having Lucas on only formula is not working. He hates his formula so he isn’t even getting the minimum 800 calories per day. Back at home, most of his calories are consumed through actual food. Drinking just formula is killing him & us. Tomorrow, in preparation for Friday’s FMT & colonoscopy, he can only have clear liquids which is water & pedialyte. Poor boy.
Even though we received mainly good news this week, yesterday was a hard day for me. I felt defeated to see Lucas lose so much weight. I felt like I was failing as a Mother. Whenever Lucas pushes the bottle away and doesn’t drink, it just makes me want to cry because I know it means he’ll be losing even more weight. Bryan gave me some much needed hugs & love to bring my spirits back up. Then, Lucas gave all of us a nice gift by sleeping from 12:30am to 8:30am without waking up in the middle of the night. Yippee! During these hungry days, Lucas wakes up numerous times in the night crying uncontrollably for 30 minutes to 2 hours at a time. He won’t take a bottle since once again he hates his formula. Lucas – Thank you for giving us the blessing of one good night of sleep!!!
Lucas was released from the Hospital. Dr. Manfredi is still a bit concerned about the area of the esophagus he worked on which now looks a bit thin. Yesterday & today, Lucas had xrays taken which showed no leaks. Just to be extra careful and not cause a tear from food bulging out the thin area, we were told to avoid any food until Tuesday. Only formula, water, & liquids for now. On Tuesday, we can try soft foods like bread, avocado, butter, hummus, & peas. Then, on Wednesday we need to start the clean out directions for Friday’s colonoscopy & FMT (stool transplant) to once again try to eliminate the C. Diff infection.
The big issue is Lucas no longer enjoys the taste of his non-dairy/soy formula. So we are extremely nervous about Lucas not consuming enough calories and in turn seeing a huge decline in weight. When we started the surgeries in Boston back on July 18, Lucas weighed 10.5 kg. After weekly surgeries for almost 7 straight weeks, Lucas went back to AZ weighing only 10kg. So he lost .5 kgs. While home, Lucas was able to have a normal schedule and added .25 kgs in just 3 weeks. Bryan & I were so happy to see Lucas finally start putting on some weight! Now, we most likely will see rapid weight loss. Urgh. At minimum praying Lucas stays happy & healthy.