New Words

Cutest new words out of Lucas’ mouth?… “More booty bop!” Lucas says this while laughing to get me to keep spanking his wet booty during bath time. The words are so clear. He never wants it to stop. LOL!

Breakfast

Lucas defies the odds! Born without his esophagus and stomach attached, yet at 28 months old he is eatting this big plate of food for breakfast (2 pieces of bacon, 1/4 of a waffle, 1/4 of a corn muffin, raspberries, & watermelon). We are so proud of him!

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Getting Back to Normal

So we did end up flying home late night on Tuesday, September 8th. The go no-go decision was not clear cut. The x-rays of Lucas’ lungs we good enough for us to leave, but his oxygen (O2) sats were pretty low (about 92). The concern was that since high altitude in the plane (cabin pressure is about 8000 ft) lowers everyone’s oxygen even more, that Lucas might have a major issue if his O2 dipped into the 80s. In the end, we got a not-to-reassuring “I think you’ll be fine” from the doctor, and the ultimate decision was ours.

We decided to make the trip, primarily because at home we had access to Lucas’ airway clearance vest and nebulizer – two items we knew he needed, but we were having a difficult time locating as out-patient in Boston on a holiday weekend.

The flight started out OK. Lucas actually fell asleep as Jill and I monitored for grey-blue color and bluish fingertips. I watched the moving map on the JetBlue monitor in front of us making mental notes of the nearest children’s hospital we were flying over. The biggest issue of the flight came when Lucas woke up from reflux with uncontrolled coughing. At one point, Lucas gave me his terrified look. It’s the look in his eyes he gets when he can’t breathe, and scares me like I can’t explain. Normally, we only see that look after a surgery and an occasional post-surgery night terror. I remember telling Jill that the flight might be one of the dumbest decisions we had ever made, and I can attest to you that at that moment, I almost made them land the plane in Chicago!

Instead, we got a quick answer to our prayers and Lucas was able to calm down just enough to take some breathing meds. The rest of the flight had a couple more scary spells, and lots more coughing, but nothing like that first one. I continued to watch the map the entire flight and was so happy to finally start our descent into Phoenix. Ironically, when our plane pulled into the gate, the flight attendant asked everyone to remain seated because an emergency medical crew would be boarding the plane. Gigi asked me if someone had called for Lucas. They hadn’t, and we were very glad to be headed home and not straight to the Phoenix Children’s emergency room.

Lucas was so excited to get home. He immediately went for his toys and starting playing. Over the last week, the CPT vest and hypertonic saline have been a crucial part of Lucas’ recovery, and in the last few days, Lucas is eating again, starting to feel better, and getting back to normal. I’m still not sure if we made the right decision to fly home, but it sure is good to be here. We even went swimming for a few minutes today.

Below is a picture of Lucas from June while he was at our Nanny’s house. Does he have the best smile or what! Love, love, love this photo of our little miracle boy!

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Lucas Has The Best Smile Ever

We’re Home

We’re home! Lucas ran to play with his toys as soon as we walked in the door (even though it was 1am ET). Being home is exactly what Lucas needs to get better.

We hope to make a more detailed blog post soon.

Flying Home (maybe)

Respiratory distress in a kid like Lucas is pretty complicated. The last few days have been a roller coaster, but generally speaking, Lucas is doing a bit worse instead of better. It’s the opposite of what we were hoping and expecting. Now, the question is, is Lucas well enough to get on a plane and fly home, or put another way, can we be away from emergency access to a hospital for about 10 hours?

We are speaking with the doctors in a few minutes to talk about this very question. Lucas’ O2 sats are still much lower than normal. The good news is that whenever we do get home, we’ll have access to his nebulizer and CPT vest – two things we could really use right now.

Released From The Hospital

Over the night, Lucas’ oxygen levels went back up to the 96% plus range without supplemental oxygen. Lucas no longer has a fever or is lethargic, tested negative for viral infections, and his white blood cells went down from 17 on Saturday morning to 7 on Sunday morning. Lucas still has an intermittent cough. But he is showing many signs of improvement. So the hospital released Lucas around 2pm! Lucas will remain on the meds until all symptoms are gone. With each passing day Lucas’ lungs should become more open.

We moved our flight home from this evening to Tuesday evening. Jet Blue waved the rebooking fees of $80 per person. The flight cost was even $40 per person cheaper. So now we have travel funds available with Jet Blue for future flights.

Gigi worked her magic with the Yawkey House (Boston Children’s Hospital housing) for us to have the same room through Tuesday morning. Gigi has been such a big help for all of us!

Thank you for the many prayers! We know the Lord is watching over Lucas & giving all of us an abundance of strength.

Admitted to Boston Children’s Hospital

I’m not even sure where to start. The last 48 hours have been filled with highs and lows.

On Thursday, Lucas was discharged after surgery because he was doing so well. Then, on Friday, at 2pm Lucas started to have a light/infrequent cough. By 6:30pm, his cough became more frequent & he threw up lightly while eating a small piece of chicken nugget. At 7:30pm, we spoke with the on call surgeon who recommended we try to get Lucas to sleep in his own bed over the night then come to BCH to get an x-ray performed on Saturday to ensure he didn’t have a leak from the dilation.  By 10pm, Lucas was moaning from pain, coughing frequently, had a light fever, making throw up noises, had a hoarse voice, and couldn’t fall asleep. At 12am, we threw in the towel and headed to BCH’s emergency room.

We were impressed with how quickly BCH moved Lucas along from being admitted (we didn’t even sit in the ER waiting room for a second), to an ER room, to an actual room on the pulmonary floor.

On a positive note, Lucas’ x-ray showed no leak in his esophagus! On a negative note, it took 3 IV teams, 7 needle pokes, & 2 hours to finally get Lucas’ IV in around 3:30am. Since there was originally a fear of a leak, we weren’t allowed to give Lucas any water or food. With a fever and no water, Lucas became dehydrated. So, even when Lucas was crying, no tears were coming out. Poor baby boy.

While we were sitting in the ER room, we said many prayers. The one prayer we never expected to say was asking for the Lord to please ensure Lucas had a virus. The alternative, an esophageal leak, also matched his symptoms and is critically serious. So instead, we we prayed for the doctors to diagnose a virus. Never in my wildest dreams did I think I would be praying for a virus. Crazy!

Currently, the doctors think Lucas has “Atelectasis” which is a complete or partially collapsed lung due to the way his lungs may not have fully reinflated after anesthesia. Plus, he “may” have an undiagnosed airway disease which makes it difficult for him to fully refill his lungs after anesthesia.

http://www.mayoclinic.org/diseases-conditions/atelectasis/basics/definition/con-20034847

At this point we have no idea when Lucas will get well enough for us to be released or even to fly home. We plan on taking it hour by hour and would prefer to stay at BCH until Lucas is doing extremely well. Our flight home is scheduled for Sunday at 6pm. I doubt we’ll make that flight.

Still resting comfortably

Lucas is doing well post-op. He is still resting comfortably in mom’s arms and hasn’t yet needed any narcotics or even oxygen. This is pretty rare for him. If his pain is under control when he wakes up, and he is willing to drink some fluids, we may not even have to spend the night in the hospital.

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Another Successful Dilation

Dr. Manfredi was “very pleased” today with how Lucas’ esophagus looked. It’s always totally awesome when Dr. Manfredi uses the phrase “very pleased.” Today was no exception.

Lucas’ top stricture looked “a lot better than last time.” He said that he almost decided to just leave it alone, but then went ahead and did some work on the  shelf of scar tissue that we’ve been battling for a while now anyway. However, he didn’t need to do as much work as in May.

The lower stricture still looks great, and again, didn’t need any work at all. So awesome!

The best news is that Dr. Manfredi thinks we might be able to go all the way until January before doing a contrast study locally in Phoenix! In other words, this very well could be Lucas’ longest break between surgeries ever! It will also mark the first time in his life that his age in months will be greater than his number of surgeries. A silly milestone, I know, but one I’ve been looking forward to for a long time.

Today is another huge bunch of answered prayers for our little miracle. So thankful that Lucas keeps defying the odds.