Busy Days

Wednesday’s doctor appointments started at 9am and didn’t finish until 6:30pm. Such a busy day. Lucas did really well considering from 9am until 12:30pm we were stuck in the same small exam room.

Lucas did awesome at the feeding specialist appointment. On Monday, Lucas was cleared to eat leave 2 foods. Plus, yesterday, we were cleared to give the Gerber puffs to see how Lucas does with the chewing action. He was a pro!!! He had no issues or gaging due to the harder texture. He broke each piece in half with his teeth and then continued to chew the puff until he swallowed. It brought tears to our eyes to see the huge feeding progression. Word got back to Dr. Manfredi that Lucas was doing well. So he stopped by to see Lucas in action. Very big day!

We were asked to be a part of a Boston Children’s Hospital study to run genetics blood testing on Lucas, Bryan, & me to see if there is any way doctors could predict the esophageal atresia in the future. We gladly agreed. In time, we will receive our own results. The study is starting out with 10 families. The end goal may be 40 families for the entire study. We feel blessed to be a part of the study. It would be great to help find a way for other families to avoid this medical issue in the future.

Craving Milk Products

During Lucas’ surgery on Friday, I will be Lucas’ stool provider for the Fecal Microbiota Transplant (FMT) to solve his C. Diff infection. Since Lucas may be allergic to milk, the doctor requested for me to avoid milk for the last 2 weeks. If you know me well, you know I eat cheese & chocolate everyday! It has been painful to go out to restaurants and see amazing cheesy meals, butter, ice cream, and/or scrumptious desserts on the menu. Seriously, it has been so much more difficult than I imaged to completely avoid milk. I can’t wait to give my stool donation on Friday and then I will be eating a big cheesy bowl of Fettuccini Alfredo and peanut butter cups for lunch. Yummy!!!

Seeing the Town

The last 2 days out of the hospital have been filled with fun moments & sightseeing. We visited the harbor, New England Aquarium, Quincy Market, walked the freedom travel, road the subway to get around, and ate out many times a day. Lucas has been such a trooper. He naps in his stroller as we wander the town.

Tomorrow Papa & Nani leave to go back to Albany. We have loved every second with them! I’m a bit nervous to see how we survive each day without them. They have been so much fun and extremely helpful. We are blessed to have had 2 fun days out of the hospital together.

Released From The Hospital!

On Saturday at 9:35pm, Lucas was released from Boston Children’s Hospital!!! The release was a long drawn out process which took over 12 hours. Never the less, we were ecstatic to have Lucas out of the hospital & back to the hotel with us! At the hospital, a nurse came into his room every 2 – 3 hours to check vitals or give medicine throughout the day & night. Bryan, Lucas, Bob, Peggy, & I had such a good night sleep in our hotel room on Saturday night. Just heavenly. Yes, all 5 of us stayed in the same room. Ha! More humorous details to come.

Once again, thank you for all of the prayers. We are blessed to have so many friends & family members who truly care about our beautiful baby boy!

Eminent Discharge

Lucas is doing so great with his recovery, that we’ve received news that we may be discharged tonight! In fact, we just received training on how to care for Lucas’ PICC line when out of the hospital. This means that we should get the much needed chance to get out and about in Boston and enjoy a few fun days with Papa and Nani before they have to leave. We still have several appointments to attend in the coming weeks (endocrinology, genetics, esophageal atresia clinic, pre-op, etc), and at least one more surgery this upcoming Friday, but life will be a lot better not confined by the hospital room – even though we are in a brand new super nice wing of Boston Children’s.   🙂

Surgery Update

In some ways, yesterday could have been called a non-surgery. Although Lucas was under anesthesia for almost 3 hours again, so I think we’ll go ahead and count it. Dr. Manfredi removed the stint and examined Lucas’ esophagus both visually and under fluoroscopy. He said that he was very pleased with what he saw. So pleased, in fact, that he choose to not even do any further cutting or dilating! In other words, the first surgery went so well and the condition of Lucas’ esophagus was so encouraging, that all Dr. Manfredi ended up doing yesterday was remove the stint and look around. Another reason he just just looked was because the esophagus was still pretty “raw” as he described it and he wants to see how it heals up before proceeding. Dr. Manfredi mentioned that there were a couple of small finishing items he thought about addressing, but that sometimes it’s better to just leave a good thing alone instead of risking inadvertently making it worse.

The surgery ended up taking so long because our little bundle of energy managed to pull on his PICC line enough over the past week to make it no longer central. They replaced it with a new line “just in case” that we’ll have all week, and the replacement didn’t go quite as smoothly or as quickly as it could have.

In any case, how these esophagus results hold up will be very telling for Lucas’ future. We hope to find out a decent answer to that question during the next surgery on Friday, August 1st, but as it stands right now, we are very, very encouraged and hopeful. In fact, Lucas may take his first bite of food very soon!
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Ready for Surgery

For the first time since his surgeries a week ago today, Lucas went through the entire night last night without needing oxygen! The next surgery is currently scheduled for 11:30 am EST, but they’ve told us that we may go down a bit earlier. Praying for the same great therapeutic results as last week without the airway/breathing issues.

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Lucas feeling good this morning

Tomorrow’s Surgery

On Friday @ 11:30am (maybe earlier), Lucas will have the second dilation (and third surgery) in his series of surgeries at Boston Children’s. Dr. Manfredi foresees the surgery will take an hour & a half. He will use interventional cutting with the needle knife, steroids, and the EGD balloon to progress both the upper & lower strictures. If Lucas’ esophagus and healing looks good, Dr. Manfredi may also choose to remove the lower esophageal stint that is responsible for the pain, breathing, and emesis issues Lucas has had this week. We are nervous that Lucas’ tracheomalacia will once again pose a significant and dangerous problem. Last week, when we expressed to an ICU doctor our displeasure that we were not brought to Lucas’ post-op bedside sooner, he retorted that he wanted to bring us back, but he also didn’t want us to have to see Lucas being resuscitated either (Lucas never did have to be resuscitated). The response was a bit uncouth, but underscored the seriousness of the breathing challenges Lucas had after his first surgery last week.

This week we will once again find peace and comfort by giving up our worries & fears to the Lord.

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Wednesday – Day 6

Today, two endocrinologists stopped by our room. The endocrinologist team reviewed the packet we created with Lucas’ rickets history. They determined Lucas does NOT have a genetics form of rickets. Praise the Lord! Instead, he has nutritional rickets. We may never know the real reason why. The two endocrinologists have never seen rickets due to C. Diff. But that could be the cause. Or Lucas could be allergic to the Neocate formula which could mean his body doesn’t absorb all of the nutrients. It doesn’t matter the cause. All that matters is his rickets are improving and in time it should be eliminated. Lastly, they believe Lucas’ body will eventually catch up in height and weight. Phew! We are elated with the great news. Everything is coming together perfectly in Boston!

Tomorrow we may get to try a new formula that will have more calories & taste better named Pediatric Compleat. This will be a dream come true for Lucas to finally have a formula that tastes better than dead fish which is what Neocate tastes like.

Remember Friday is Lucas’ next surgery. Praying his breathing is better this time as he’s coming out of anesthesia.

Behind the Scenes – Papa & Nani

Whenever I watch movie credits, I’m always amazed at how many people it takes to make the film possible. And in many ways, taking care of Lucas is no different. I’m not talking about the nearly 30 people who were in the operating room when Lucas was born and I’m not talking about the 11 people bedside (18 people total) it took to stabilize Lucas and give him a protected airway before his second emergency surgery on Friday. I’m talking about my mom and dad (aka Papa & Nani).

In all honestly, I really can’t imagine how we would have been able to do this past week without their assistance. In yet another of the hundreds of God’s little “coincidences” we experienced over the last 16 months, Papa and Nani just so happened to have a preplanned vacation to visit extended family in upstate NY, just 3 hours from Boston, at the same time Lucas got scheduled to come here. They arrived on Thursday, the night before Lucas’ first surgery, and are still with us now. They get up about 7 am and don’t leave us until late at night. They are doing all the important little things that make an extended stay in the hospital comfortable and easy. They have been doing our laundry, washing bottles, getting us food, and keeping Lucas happy and entertained while we are talking to the doctors. They allow us to focus on Lucas’ care while they handle everything else.

They are also doing the great things that Papas and Nanis do. Yesterday, Nani showed up with an Elmo DVD. I’ve never seen Lucas so excited about TV before. He absolutely instantly loved Elmo. He was laughing , smiling, bouncing , and pointing at the TV. A few hours after that, Nani showed up with Elmo himself – or at least the stuffed animal version she found in the hospital gift shop. She held Elmo next to the TV and had him jumped out of the TV into Lucas’ arms. He loved that even more. I have a funny feeling that Elmo will be by Lucas’ side for a long time to come.

Thanks Papa and Nani for all your love, prayers, encouragement, and support.

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Lucas and Elmo watching Elmo on DVD

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Lucas and Elmo looking out the hospital room window