Post Scope

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Judah disregarding the “no heavy lifting” request by the doctors

Hey everyone,

Thank you so much for your prayers today! Overall, Judah is doing very well. He’s already back to the mischievous ways his 20 months of age would suggest.

Judah was in the operating room for about 2 1/2 hours this morning. First, he had the circumcision, which went great. Second, he had a bronchoscopy. We were hoping they would find that Judah’s airways were open, but, unfortunately, that’s not what they found. Back in April, they dilated (or stretched) the area that was narrowed by scar tissue. Today, they found that area to, again, be narrowed. Bottom line, the stretched part didn’t stay stretched. That means that the trach stays in until he has surgery to remove the scar tissue.

The surgery is called an LTR (Laryngotracheal Reconstruction). They take a piece of cartilage from the ribs and place it in the airway to make it wider and stronger. We knew this was a good possibility. However, what we weren’t prepared for was that the area around his trach (below where the narrowing is) has begun to soften. Our doctor said this was because of the trach being in for so long. The surgery was planned for September, but now they want to wait until the spring. The main reason for this is that (after today’s discovery) the area that would need to be strengthened is now bigger and would require more cartilage. So we’re not sure if his ribs would be mature enough by the fall to harvest the necessary cartilage.

Needless to say, it was disappointing and frustrating. We’re feeling a lot of emotions right now and have lots of questions for the doctors that we’ll be following up with.

Although we’re frustrated we still choose God. It’s hard, but we know He is good and we choose to trust Him through this. Judah is His and we will rest in the fact that He holds Judah in the palm of His hand.

We ask for your prayers for us and Judah during this recovery time. Thank you so much for caring for us over these past 20 months!

Much love,
Nick & Liz

The Summer So Far

Like a boss

Eating like a boss

Hey everyone, I know it’s been a long time since we’ve posted anything but life has been great since getting back from vacation. Judah has been doing so well! He has been eating – which is a HUGE step for him. Right now, he takes in about half of the calories he needs by mouth. He’s also been taking all of his medication orally as well. He’s been growing and gaining weight at a great pace. He has also completely stopped throwing up – another HUGE thing! With the trach (tracheostomy tube), it’s difficult for him to make a lot of sounds but he’s been signing and slowly learning more words. All in all, we’re so happy and blessed that Judah is doing so well!

One of the biggest and hardest things we’ve had to deal with since bringing Judah home has been having people in and out of our home. Thankfully, we’ve been blessed to have some really great nurses and therapists help us care for him since we left the hospital 15 months ago. Since the spring, Judah has become much easier to care for. When we went on vacation in April, we realized how much we loved just being able to be together as a family. So, after many conversations, we decided to let go of all overnight nursing, leaving us with a few hours during the week. Although it’s been a big change, we absolutely love it. We are so grateful that Judah has come so far and we can be in the place that we are.

As many of you know, a few months ago Judah had a scope done. They wanted to see if there were any obstructions in his upper airways. They found some scar tissue that would inhibit his breathing if the trach were not there. While they did the scope, they also stretched the area where there was scar tissue. On Monday, we will go back to Strong and they will do another scope to see if the area has remained stretched or not. If it has, they will most likely remove the trach and we would stay a few days for observation. If it hasn’t remained stretched, Judah will have surgery in September to remove the scar tissue and then the trach would come out. Obviously, our hope and prayer is that we will bring him home next week, trach free.

Since they will be putting him under anesthesia for the scope, they will also circumsize him right after the scope. This would have been done at birth but since there were so many issues right away, this wasn’t important.

We ask you all to stand with us and believe for the scar tissue to not be an issue and we will be able to bring Judah home without a trach.  And more than that, we are believing God for a new heart. He is able. Please also pray that everything will go smoothly and there wouldn’t be any complications.

Thank you all so much for following our story and standing with us over the past year and a half. It means the world to us!

Much love,
Nick & Liz