Bronchoscopy Results

Hey friends,

This morning they took Judah in for his bronchoscopy (for details on what they did, please read yesterdays blog post) and he tolerated everything well. The hope was that they would find nothing physically wrong with his airways and would actually extubate him today. But sadly, that was not the case. Judah has something called “Bronchomalacia.” This means he has weak cartilage in the walls in one of his bronchial tubes. This is something that’s completely separate from his heart condition. Basically, we all have cartilage rings that help keep our bronchial tubes open and round. In Judah’s case, some of the rings are weak. When he takes a breath, the tube collapses and he can’t get enough air. Think of a damaged drinking straw. When you suck in too hard, the weak spot collapses.

The solution to this is a Tracheotomy with a tube attached and a portable machine that provides positive pressure to keep his airways open. This significantly changes what the immediate and semi-long term future looks like for both us and Judah. In the immediate future, Judah will remain on the breathing tube until they do the tracheotomy. Judah needs his second heart surgery in the next 4-5 months, and because of how close the trachea would be to his chest incision, it might be easier to do the surgery earlier than anticipated because the trachea could interfere in a variety of ways. The problem is he needs the tracheotomy now. They don’t want to leave the breathing tube in for too long because it has the potential to  damage his vocal chords. Judah could need to have the trachea tube in for as little as 8 months or as long as 2-3 years, depending on his growth rate. Thankfully, it’s not forever. Over time he will grow and eventually the airway will be bigger and strong enough to hold itself open.

Each Thursday morning, all of the heart surgeons and cardiologists from Strong, Buffalo and Syracuse have a conference call to discuss any upcoming surgeries for the week. So tomorrow morning, they will discuss Judah’s case to see what the best way to proceed is. It’s possible they may move up his heart surgery and do it before the tracheotomy, provided his body is ready for it.

Please pray God will give the doctors wisdom in deciding what to do and when.

Today was a difficult day for us. Our lives have changed all over again and our immediate future is unclear. We still believe that God can do anything. We still believe God can heal Judah’s body, including this new discovery. Please keep us in your prayers as we continue to seek His grace and strength, and peace as we continue on in this season. We ask that you believe with us.

With all our hearts,
Nick & Liz

Moving Today, Testing Tomorrow

Hey everyone,

Today was a busy day for Liz and me. We’ve been so blessed to have been able to stay at the Ronald McDonald House inside the hospital these past 8 weeks, but the time came for us to move on to the other “house” today. We ended up staying much longer than the average family. Normally, the length of stay is about a week so staying as long as we did was really amazing. It’s less than a mile away from the hospital, which we are very thankful for. It isn’t nearly as convenient as being only one floor away from Judah, but still very nice.

Judah had a very good day today. Tomorrow will be a very important day. Late morning they will take him down the hall to the “Procedure Room” to do a bronchoscopy to try and figure out why he’s having a hard time breathing on his own. They will be inserting a small camera through his existing breathing tube (so they won’t have to be putting anything extra down his throat). Then, they will back the breathing tube out, little by little, until he is actually breathing on his own while leaving the camera in to see if there could be a “mechanical” problem in his airways. He seems to do fine in all the testing while the tube is still in, (and he’s doing all of the work) but as soon as they remove it, he struggles. If they don’t find anything wrong, they will actually try to extubate again right then. They’ve been weaning him back down throughout the day and have been doing pressure support trials (just like they did this past Friday) and he has been doing great. If they do find something wrong, then they will re-intubate and come up with a new plan.

Our hope is that they find nothing wrong, extubate him, and that he does well and we never have to look back.

Please pray that they find nothing wrong and he’ll finally succeed at extubation. But, if there happens to be something this is keeping him from breathing on his own, please pray that they find it and it’s nothing serious.

We still feel so amazed and blessed to have you all standing with us in prayer!

Much love,
Nick and Liz

G-Tube Surgery Today

Hey friends,

Judah will be having a G-Tube put into his stomach his morning/afternoon. He was originally scheduled for next Tuesday but because of a surgery cancelation, both the surgeon and the cardiac anesthesiologist that are both necessary are available. They will take him down to the OR around 11:30 and he should be back in his room by 1:30. This will be a short and “easy” surgery compared to what he’s already been through.

Judah has been doing very well since they had to re-intubate him early Sunday morning. They still aren’t sure why he wasn’t able breathe on his own. As we said yesterday, some people who specialize in pulmonary (lung) medicine are helping with Judah’s case. They will be going over all of his history and on Wednesday or Thursday actually looking into his airways with a camera to try and get a better understanding of why he’s been unable to get enough air on his own.

The thought at this point is either that he just needs more time to grow and get stronger or it may be something “mechanical” with his lungs that makes it so difficult. We should know more by the end of the week.

Please pray that his G-Tube surgery will go smoothly with zero complications. Also, please pray they will be able to figure out what, if any, the problem(s) are with his lungs.

We’ll update you post-surgery.

Thanks!!

Much love,
Nick & Liz

Saturday Night Update

Saturday Night Judah Update:

Judah is hanging in there! He’s still working very hard to breathe on his own but his levels and numbers are all still good. Part of the problem is that he’s easily upset and once he’s upset, everything just snowballs. We’re finally heading to bed after a very long day that started at 5:30 AM.

Please pray for peace over Judah and that he will be able to breathe calmly and deeply without any problems.

We are believing that he will be able to adjust and not need to be re-intubated. Please believe with us!

Thank you! Your prayers mean so, so much to us!

With all our hearts,
Nick & Liz

Bumpy Morning

Hey everyone,

Judah was extubated this morning around 6:30. He initially did well but around 9:30 or so that was no longer the case. The doctors are unsure exactly how things will go today but it is a possibility that they will need to re-intubate him. They’ll be watching carefully as the day goes on.

Liz and I are leaving shortly to shoot a wedding here in Rochester. We’d love to be in two places at once but that isn’t possible.  : )  Liz’s mom will be with Judah for the day and we have complete faith in the doctors and nurses here at Strong.

Please pray that Judah’s lungs would be able to take deep, strong breaths and that re-intubating him won’t be needed. Please also pray that God would give the doctors and nurses wisdom as to what the best thing is for Judah.

What can we do but trust God?

“In you, Lord my God, I put my trust. I trust in you; do not let me be put to shame, nor let my enemies triumph over me. No one who hopes in you will ever be put to shame…” Psalm 26:1-3

Great Day!

Hey everyone,

The last few days have been great! On Wednesday morning, the doctors guessed it would take until Friday to get Judah’s levels to balance out; it only took until that Wednesday afternoon! They then thought it would probably be early next week before he would be ready to be extubated, (take the breathing tube out) but that isn’t the case either. It’s happening tomorrow! Judah has done remarkably well during the weaning process and is now doing the “pressure support trials” and tolerating it very well. This is where they let him do all the work of breathing but provide positive pressure to offset the fact that he’s still breathing through a very small tube. (Imagine breathing through a drinking straw.) The plan is to extubate him first thing tomorrow morning. We’re very excited about this! We’ve been waiting for this for the past three weeks, and overall since a his first surgery. This is a very big step and we are so glad he is finally ready.

I’ll update you all after it’s done tomorrow morning. Please pray that he continues to do well overnight, that the extubation process goes smoothly, and that he is able to breath well on his own.

Thanks!

Much love,
Nick & Liz

Another Good Day!

Hey everyone,

Judah has had a very good day! Yesterday, the goal was to get his levels balanced. This was achieved overnight. Since then, they have been weaning his ventilator slowly. Each time they turn down the rate, they wait to see if his body responds by keeping his carbon dioxide levels (and other important levels) in a good place. So far, Judah has done this well  each time! We’re now looking at the beginning of next week for extubating Judah.

On another note, Judah is tentatively on the schedule to have a G-Tube put in on January 15th. If all other things go well, typical recovery time is at least a week. Once we get to that point we’ll begin to look at going home!

Please pray that Judah’s body continues to adjust as they lower his rate on the ventilator.

Thank you all so much for caring for us and praying for our family!!

Much love,
Nick & Liz

Slowly But Surely

Judah loving his mobile

Hey friends,

Judah tolerated being at a low rate on the breathing tube fairly well by outward appearances, (which is good) but his carbon dioxide level was not so good. Not bad or dangerous, just not exactly where it should be. Basically, he’s breathing in well but not breathing out so well.

We’re still trying to grasp this concept ourselves, so please bear with us as we try our best to convey it clearly. Up until a few days ago, Judah was having one of his heels pricked to draw blood each time they needed to measure his blood gases (which is daily). This doesn’t always give them an accurate read. A few days ago, they put in an arterial line in his foot. With this, they are able to get a much better idea of how his body is handling each adjustment they make with the ventilator.

Judah’s blood and lungs are retaining a little too much carbon dioxide, and there are a few ways to help that. The solution they are choosing to try is bringing him back to square one, which means getting his levels balanced by increasing his rate on the ventilator. (When the ventilator is doing all the work, his numbers are perfectly balanced.)

Once his levels balance, they will begin to (gradually) wean him back down. The hope is that as they change his breathing rate on the ventilator, his body will be able to adjust little by little while keeping his levels balanced. They’ll keep doing this until he is doing most of the breathing on his own and (hopefully) his levels will continue to be balanced.

We know that’s a lot to swallow, so if you don’t have a great understanding just know that he’s not quite ready to be extubated yet. :)

Although we were a little disappointed that Judah wasn’t extubated today, we do want it to happen the right way, at the right time, and to not have to go back. So we’re happy that the staff is doing such a thorough job with it.

Please pray that his body can learn to get more carbon dioxide out, and that the doctors and nurses will continue to make wise and careful decisions.

We knew this road would be bumpy when we started. We continue to believe for God to do a miracle in Judah’s body despite not moving forward today.

Thanks for standing with us!
Liz and Nick

Tonight’s A Big Night!

Judah smiling while sleeping!

Hey everyone,

Judah has had a good day. They have been weaning him off the breathing tube, and once again we’re now at the lowest level before they do a “pressure support trial”. With this trial, the tube is still in but he does all the breathing. Because it’s like breathing through a straw, they offset that by providing positive pressure to support each breath he takes. The goal is to make it as close as possible to him breathing on his own but with the tube still in. We got to this point a little over a week ago and Judah just wasn’t ready yet. By morning he will have been at this level for longer than he was last week, and we should know if he’s ready to move on to the pressure support trial.

Please pray that Judah will have a good night and be ready for a day of trials tomorrow. Pray that his lungs will be strong and he is able to go through the testing and get the tube out.

Judah breathing on his own has been one of the biggest battles he has had. Just to put it in perspective, his breathing issues have extended his hospital stay by about a month. We’re eager to get him over this hurdle and move on to the next goal!

Thanks for believing with us!

Much love,
Nick & Liz