Amazing Employers

Bryan & I are so blessed to work for two amazing employers who have been extremely understanding & supportive of us taking time off to be with Lucas in Boston. Bryan works for Element Payment Services. I work for Bank of America. Our managers truly care about us and Lucas on a personal level!

For the last 7 weeks, Bryan has been taking unpaid time off. Just last week, I ran out of vacation & sick time. So now, I am also taking unpaid time off. Now that the surgeries are starting to have more days in between, Bryan & I are figuring out a schedule so both of us can go back to work part-time. If only money grew on trees. Ha! Lucky for us, we both love what we do.

BTW – Even though I’ve been away on vacation for weeks, Marie Manha (my phenomenal boss) informed me of an Executive Recruiter opening on another team. She knew I would love to be considered for the outstanding career opportunity. So, I completed 3 phone interviews. Last week, I received the great news that out of the many internal/external applicants, I was chosen to fill the Executive Recruiter role! Stephanie Davidson will be my new boss and she is fully aware of and supportive of me doing whatever I need to do for Lucas. Wow! The Lord is so good!!!

Thank You Lord

Dear Lord,

Thank you for all of the many blessings you have shown us over the last 18 months. From protecting Lucas when he was in my tummy for 8 weeks of hospital bed rest to the last 16 months of putting gifted surgeons in our path for Lucas to have the best care, you are always showing us your amazing grace and healing power. We give you thanks for today’s amazing news! Even in the gravest moments, your love did not forsake us. Thank you Father.

Good News

Progress! Lucas’ esophagus stayed open to about 10 mm. Then, Dr. Manfredi dilated the area back up to 15 mm. This time, the dilation was much easier to stretch which is a good sign. Dr. Manfredi was “really pleased”. For now, the resection option is not being considered. This could always change in the future if the esophagus starts to shrink back too rapidly between dilations. But Dr. Manfredi feels like we have a strong chance that just the balloon dilations are all Lucas will need.

The next surgery is Friday 9 days from now. If his esophagus looks good and holds its shape like today, then the timelines will start to be stretched out a bit. Probably 4-5 dilations more. But as timelines get stretched to 3-4 weeks, we may be able to fly back to AZ in between surgeries. We can’t wait to go home!!!

The colon looked visually good! Biopsies results will be back next week. Due to time constraints they decided to do a sigmoidoscopy rather than a colonoscopy. They were able to see about 1/3 of the colon. In the future we will most likely complete a full colonoscopy to rule out further issues.

Big Surgery on Wednesday

Tomorrow is Lucas’ big surgery when the surgeons will determine if the dilations are working OR we need to switch gears & move to the dreaded complete resection. Plus a colonoscopy to rule out any other big issues. Prayers are so appreciated.

Red Sox Game Pictures

The seats were amazing! 1st row directly behind home base. Even better, Lucas was an angel for the entire game which lasted until 11pm. He was in awe of all the people, noises, and constantly changing batters.

At the bottom of the 4th inning, a coach was passing by us on the field and right at that moment a ball landed on the ground in front of home base. So, I stood up with Lucas in my arms and yelled to the coach, “can I have that ball?” while smiling. Then, the coach smiled back, picked up the ball, handed it to the 1st person outside of the protective net and said “pass the ball to the baby”. Yippee!!! Bryan swears the coach said “pass the ball to the pretty lady”. Ha!

There was an 8 year old boy named Kyle and his father from Boston Children’s Hospital sitting directly behind us. For the rest of the game, I chatted with Kyle about how I would try my best to get him a ball. At the top of the 9th inning, I walked over to a security guard and mentioned that the child behind us was from Boston Children’s Hospital and he would love to have a ball from the game. Ten minutes later the security guard came over with a ball which had been used during the game for Kyle to have. Kyle was so excited!!!…Yes, that means I was able to score 2 balls during the game!!!

Maybe this means Lucas will be a Diamondbacks & Red Sox fan. Such a memorable night!

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Pictures of the game from a friend’s TV. We are sitting directly above the aetna sign.
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Lucas loved to stare up at the Red Sox blimp.
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Some Bigger Feeds

On Sunday evening, we started to think the C. Diff medicine was kicking in and Lucas got his appetite back. Lucas finally had 2 bigger feeds. One was 210 mls (the entire bottle!) and the other was 180 mls. Before this, Lucas has been averaging 110 mls. We feel like the bigger feeds may be a good sign that Lucas’ last dilation could be keeping it’s shape & not shrinking. That would be amazing!

On Wednesday, Dr. Manfredi will look at the esophagus and let us know if the last stretch held which means we may be done soon! Or, it didn’t hold which means we would switch gears and start over with a complete resection. For a resection, we may get to go home for a few weeks while we wait for a surgery spot and then come back to Boston for a few more months. Having real hope that the stretching held put Bryan & I back in good spirits.

Lord…We thank you for giving us a little sign that the last dilation may have held. We continue to ask for strength and that you take away the worry. Thank you father!

Test Results

On Thursday, we received the news that Lucas tested positive for C. Diff. Urgh. So, we’re back to taking vencomycin (antibiotic) 4 times a day. This time, we will wait until all of the dilations are completed before we have another FMT. Due to the C. Diff, Lucas has even less of an appetite than normal. So, my job of feeding Lucas 7 plus bottles a day is fairly stressful. On top of everything, he is having 5 plus diapers a day of diarrhea. His tummy just started to hurt as of yesterday. Good times.

On Friday, we learned Lucas’ blood test results came back as being allergic to milk with a score of 2.09. A score of .35 would mean no allergy. Lucas is in the moderate allergy rating of class 2. For some reason this news hit me hard. I’m always positive and don’t let things phase me. This time, my response was sadness. I love milk, cheese, butter, chocolate, and anything with dairy. I can’t imagine Lucas not enjoying all of these foods. For now, Bryan and I are starting to cut milk out of our diet to be prepared to make foods at home for Lucas that we can all enjoy as a family. Plus, we will work with an allergist to figure out when & how we can try to test Lucas’ gut with dairy. I’m sure it won’t be for a few years.

Soon, I want some really good news. No more positive tests for another issue. I appreciate that Lucas is a happy, bright, and loving baby. We are truly blessed to have such a loving child. I just need some good medical news again soon to lift my spirits. Having good news after Wednesday’s surgery would be the best blessing yet. Praying for some good news & more strength.

Red Sox Game

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This is what the 1st row behind home plate looks like at the Boston Red Sox game vs. LA! Literally the best seats in the house. We got the tickets for free from Boston Children’s Hospital.

Happiest Baby In The World

Yesterday, when Lucas woke up from surgery he was absolutely adorable. As he 1st opened his eyes, he saw my face and smiled. Then, he started to clap with an even bigger smile!

So, just when I was ready to feel nervous and sad about the uncertainty of the esophagus repair, Lucas wakes up and reminds me that all that matters is his happiness. Thank you Lord for bringing us the most perfect child in the world! He has brought an abundance of happiness that well exceeds the stress from his medical issues. We are eternally grateful that you chose us to be the parents of this very special baby boy. We will spend the rest of our lives ensuring he has the best life and feels all of our unconditional love. We love you, Lucas!!!

Controlled Leak

Today’s procedure itself did not go exactly as we had hoped. More details later but…

1. The lower stricture had closed down to 8 mm again. In other words, no progress the last two times. If this continues, they will abort the entire plan and move to resection. I think that this discussion will happen if there is no progress next week.

2. Biopsies taken last week from the lower stricture showed mostly fibromuscular thickening but also very small pieces of tracheobronchial remnants. We are hoping this will not stop the dilatations from being successful, but we don’t yet know, this is uncharted territory.

3. Dr Manfredi was more aggressive this time because of the lack of progress. This caused what he called a “controlled leak.” This is not ideal, but is better than a full blown perforation. It means that his esophagus and inner muscular layer are cut through and leaking, but it did not perforate the outer muscular layer or connective tissue, so it does not leak into his chest. However, Lucas is on antibiotics now and we will be watching for fevers and pneumonia etc. The antibiotics pretty much destroy any benefits of the FMT (ie. Stool transplant to cure the C. Diff infection). Lucas is not allowed to eat today. May be allowed to eat tomorrow depending on how he’s doing, and will have a swallow study on Wednesday to check the status of the controlled leak. He could get discharged after that if everything goes well.

4. Next surgery is the end of next week if everything goes well.

So let’s end this blog with some good news…

1. The upper stricture looked really good. Was very open and needed very little work. He did do some stuff on it, but it wasn’t critical. He dilated the upper to 17 mm.

2. He dilated the lower to 15 mm which is what caused the “out pouching” and controlled leak. The good news is that Dr Manfredi thinks this may have been NECESSARY to make the progress we want to make. It is what happened with all the other kids with this issue, and with Lucas he may have just been “too careful.” The controlled leak could/should force his lower stricture to heal more open.

3. I think the antibiotics could put us on the fast track for another FMT, which I think Lucas needs.

4. We did allergy testing bloodwork today – so those results will be interesting.

Driving Back to Boston

Once again, we perfectly timed our drive in the rental car back to Boston  with one of Lucas’ daily naps. Lucas has this wonderful ability to take a longer than normal nap whenever he’s in a car. Yippee!

The entire drive back, every 20 minutes, there is a sign on the side of the road that says “KEEP CALM AND DRIVE ON”. I’m starting to wonder if NY & MA has a big road rage issue. Ha! Actually, we just hit some painfully slow traffic. So, we think the signs are there to encourage people to not go crazy. It is doing the opposite for me. Every time I see the sign, I find it even more annoying than the same sign 20 minutes ago. LOL!

We are eager for tomorrow’s surgery. With every completed surgery, we are one step closer to going home to AZ.

Our hotel room is probably 10 feet by 11 feet. We have a double bed, pack ‘n play, stroller, car seat, 4 suitcases, and 3 backpacks crammed into the room. When we go home, we won’t know what do with all of the space in our house!

Starting to really miss Skyler (our dog). Poor boy. Of course, we miss seeing our parents, family, and friends. We used to take for granted seeing our parents every week. Lucas is going to be in heaven when he can sleep in his own crib again. Can you tell I’m really starting to miss home???

5th Surgery at BCH on Monday

We just received final confirmation that Lucas will have a 5th surgery on Monday. Once again, they will stretch the upper & lower esophagus. After the surgery, the surgeon should have a better idea as to how many more surgeries Lucas will need. Praying for only 1 or 2 more.

We’ve been away from home since July 14. So, we’re really starting to miss our normal daily lives. Still, we know Lucas is worth it! The Lord has big plans for Lucas. This trip will just be a small blip on the amazing path Lucas’ life will take.

P.S. We’ve been in Clifton Park, NY with relatives since Tuesday. Lucas loves the fresh outdoor air! Plus, he’s starting to eat more solids.

Improvements Over the Last Month

Since coming to Boston Children’s Hospital, we have worked with top notch doctors to complete the following:
– Stretched the lower esophagus stricture which means we have avoided the need to have a painful & lengthy resectioning surgery.
– Stretched the top stricture. So now the esophagus almost has the shape of a normal esophagus. So pleased with the results!
– Had the 1st ever Fecal Microbiata Transplant (FMT) at Boston Children”s Hospital which appears to have eliminated the C. Diff infection which Lucas was infected with since January.
– Now that the esophagus is larger, he can eat stage 2 baby foods. In a few weeks he can start to eat table foods like a normal 15 month old. Yippee! Plus, he is drinking every 3 hours vs. 2 hours. So he is drinking more formula during each feed.
– Switched from the expensive, terrible tasting, & difficult to get Neocate to over the counter PediaSure. This formula taste significantly better than Neocate.
– Close to resolving the rickets condition. The endocrinologist keeps changing up the medicines and running blood work. Hoping to have a big improvement by the end of the year.
– Before arriving in Boston, Lucas took 14 doses of medicine a day. Now, we are down to 5 doses of medicine a day.

4th Surgery Update

Yesterday’s surgery went well with no leaks. Praise the Lord! Dr. Manfredi completed a significant amount of cutting and balloon dilations on the upper and lower strictures. He was extremely pleased with the results. This morning, we were released from the hospital.

We have the next 2 weeks off for the esophagus to heal. Then, another 1 or a few more dilations before we can go home. 😦 We had our hopes up that we would be going home next week. In the long run, it is probably better to get Lucas perfect before going home. Still, we’re a bit down and missing our AZ family.

We may check out of the hotel for a week or so to drive up to Clifton Park, NY to spend time again with our relatives. Trying to make the best out of our long time away from home.