May 15-25 Compilation Post

Hey everyone, with so much going on in the last few weeks, it’s been difficult to post both here and on Facebook, so I’ve just been doing the latter. This post is a compilation of all the posts, in chronological order, from May 15-25.

Tuesday, May 15

Overall he’s doing well and progressing. He’s miserable but every kid going through what he is feels that way. Our big goals are going for walks, managing pain, and getting him to eat soon.

Here’s Judah taking a rest in the middle of a walk (above photo). Poor guy is worn out but it’s good for him to be moving.

Wednesday Morning, May 16

Please be praying in the next hour for Judah. They need to put in a new IV type line (PICC). It’s usually fairly traumatic and not easy to do but he really needs it. Thanks!

Wednesday Afternoon – May 16

New IV line didn’t work and chest-tube likely has blockage.

Earlier today they tried to put a new IV type line (PICC) but they were unsuccessful. While that’s not good there’s a new, more pressing issue. Judah has a large amount of fluid in his chest. He already has two drainage tubes to get rid of the it but the left side isn’t draining and it’s just building up. They think there’s some kind of blockage in the tube. They just gave him a med to help clear out the blockage. (Think “Draino” in a bathroom drain.) We’ll have to wait over the next hour to see if it worked. If it doesn’t work, the other option is going back the OR to put another tube in. We really don’t want that. Please pray that the fluid will be able to drain out quickly. Thanks!

*Also, his heart is doing very well so we’re grateful for that.

**UPDATE: It worked! He’s draining beautifully! (80cc in the last hour!) Thank you all so much!

Wednesday Evening, May 16

Thanks for all the prayers today! It’s been a long day with lots of ups and downs. We’re so glad he’s doing so much better. After we were all able to catch our breath from today’s craziness, we got Judah up for a walk (which helps everything drain), and he wanted to go to the farthest point we’ve taken him so far (about a football field) and back. (Since about 7pm he’s drained about 180cc’s for those who are interested.) We’re also happy to see some of his personality coming back. (Up until now, he mostly just grunted at everything.)

Tomorrow has more challenges, but for now, we’re celebrating a win. Thanks again to you all! And we thank God for His continued care, strength, and grace. We believe He’s a God that cares, hears, and heals. Thanks for standing with us!

Please be praying that:
– Everything continues to drain.
– His lungs (specifically his left) get stronger and fill back up with air (they’re pretty saturated with fluid).
– They can find a lasting solution for an IV type line (PICC) and that the current line holds up. (This will be dealt with tomorrow.)
– He doesn’t get any infections (he’s a high risk).
– His skin begins and continues to heal (he’s very raw in many areas because of all the bandage changes).
– God would relieve him of his anxiety – this has been a pretty big problem. He gets tense and worked up very easily because he’s just been through so many painful things in the past week. Also that there’s no lasting emotional trauma.

Thursday, May 17

Good day today! Nothing medical happened – which is great!

Friday Afternoon, May 18

Things aren’t going well today. Two big things are (1) his drainage tube is clogged again. Trying to unclog it in the next hour. (2) He also needs a new central line (PICC) put in today but the specialist is booked up. Getting it done today would be great. Would have to wait till Monday otherwise. Had a good day yesterday but today is a few steps back. Please be praying for Judah today.

Friday Evening, May 18

Not the Best Day

Fair warning – Below is what happened today. Some might get a little grossed out, so feel free to skip down or not read at all.

Earlier today I posted that his drainage tubes were clogged again. The same clot dissolving medication we used earlier this week didn’t work as well today, and the drainage from his chest began to come through his chest incision. Because of this, they decided it would be best to open his chest back up to let the drainage out. They put something on called a wound-vac, and it’s working well! It will also help his wound heal more naturally (from the inside out). On the down side, it will probably need to stay on for 2 weeks, so we may have added a week to our stay here in the hospital.

The procedure was not too big of a deal medically (they could do it in his room and they didn’t need a surgeon), but for us emotionally, it was tough. He’s 5 now and is very aware of everything that’s going on, so that makes all of this harder this time around.

They also noticed during the procedure that one of the wires that keeps his rib cage stay together while it heals (they cut down through the sternum for the surgery) pulled through the bone. It’s not a huge deal and they probably won’t do anything to fix it, but it’s just one more thing that causes pain and discomfort. One large contributor to that happening (and the drainage coming through the incision) is that his sternum and the surrounding skin are of somewhat poor quality, just from having 3 heart surgeries. The second contributor is lack of nutrition during this recovery, which they are remedying with formula through his g-tube. He is drinking well, but still does not have hardly any appetite.

He looks a lot better than he did this morning and we even went for a walk this evening. We hope tomorrow will be a better day and we can start to stack good days together and continue the recovery.

That’s all the big stuff. There’s honestly too much going on to list, so if you pray, pray for the things above and God knows the rest.

We continue to lean into the grace of God and trust Him through this difficult season. We choose not to ask “why?” but rather to believe in the goodness of Jesus and His promises to us.

Thank you all for following our story and standing with us. It means so, so much to us!

Much love,
Nick & Liz

Saturday Evening, May 19

Better Day Today

Nothing happened and that’s good! He really needs to gain strength and have a good day tomorrow.

Sunday Morning, May 20

Tough Morning

Although we had a “nothing” day yesterday, there are still some ongoing problems that need to be addressed. The main one being that his lungs haven’t fully expanded since his surgery and his left lung is full of fluid. He is also having a really hard time coughing the “junk“ out of his lungs because of chest pain and soreness. The solution to that is intubation (breathing tube and vent). Although it will just be short-term to get him healthy, it’s definitely something we didn’t think we would have to do again. He also has a mild fever which probably means infection somewhere. There’s a lot going on, too much to get into. Please be praying for healing for Judah today as well as us and the doctors as we make a lot of decisions.

Sunday Evening, May 20 – 8:53pm

Infection, Please Pray Now!

He’s intubated but he has an infection. His body is trying to fight but it’s getting to a dangerous place. Please believe with us for healing!

Also, wisdom for doctors as they decide what to do.

Sunday Evening, May 20 – 9:45pm

The doctors feel like the best option for Judah is an ECMO Machine (google it). We agree. It’s pretty serious. Happening shortly. Please pray!

Sunday Evening, May 20 – 10:41pm

Procedure happening now.

Monday Early Morning, May 21 – 1:49am

He made it through! Praise God!

The procedure went perfectly, he is stable and resting comfortably. He has a serious infection (MRSA) but they feel like they caught it early. Hopefully it’s the only infection.

Thank you, thank you, thank you for praying and standing with us!

Monday Morning, May 21

New Fight

First, we just want to thank all of you for liking, sharing, and even writing your own posts about Judah. We’ve been blown away by the outpouring of care and support for Judah and for us, too. I believe your prayers have worked. Last night got very serious, very quickly. Had they waited any longer to put him on ECMO support, things may not have gone the same way.

New Fight
Today, Judah is resting comfortably, but is still in a serious fight. His body is very infected with MRSA and technically in sepsis (infection of the blood). He’s currently getting antibiotics to fight the infection. They believe that was what made him deteriorate so quickly. (As of Friday, no one was aware of any infection.) His doctors feel like they caught it early enough that he still has a good shot at recovery. The ECMO machine is currently doing all the work of his heart and lungs, which gives his body a break, as well as a better ability to fight. The largest concern is the infection. They’ll be talking later today about what, if anything, they can do to help him beyond the antibiotics.

Another big issue that was discovered last night was that all of the wires holding his sternum together have pulled through the sternum. For heart surgery, they cut through the sternum/breastbone (vertical bone going down the center of your rib cage) to gain access to the heart. After, they use titanium wires like twist ties to bring your ribs and sternum back together to heal. Because of weak blood-flow, not enough oxygen, poor nutrition, and a lot of previous scar tissue, the sternum was brittle enough to give out. The doctors are still unsure of what solution they’ll be able to find to help this problem or how it might affect him in the future.

His body is also still holding on to fluid in the chest. There are pockets of fluid that are “walled off” from the rest of his chest, which is why he’s been unable drain them. They are also discussing ways to get that fluid out.

Good News
Thankfully, his heart and other vital organs seem to be recovering well with the help of the ECMO machine. Many times, people need to go on ECMO support because their heart is failing. Thankfully, this is not the case for Judah. The goal of putting him on the support is to just let him rest.

Please be praying for (1) the infection to leave, (2) wisdom for our doctors and nurses as they make decisions (especially about finding a way to close his rib cage, (3) his organs to recover quickly.

Us
Many of you have asked how we’re doing – we’re okay. Last night was the first night we were both able to leave Judah’s room, as he’s unconscious and wouldn’t be aware enough to need us. It was nice to be together and get some decent sleep. We were beyond exhausted and needed the break. You don’t realize the toll that stress takes on you physically until you are able to recover.

We’ve experienced the peace and grace of God in the midst of this. We feel your prayers and we can rest in the fact that you are all carrying us when we don’t have the strength to walk. Thank you all so much!

We know God is with us and we confess our need for Him. He’s been so good to us. A friend shared this verse with us: “So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.” Isaiah 41:10

Much love,
Nick & Liz

Monday Evening 5/21

He’s Improving

Judah had a good day today, thank God! His organs continue to respond. He’s doing well enough that they started giving him a diuretic medication to help him get rid of all the fluid in his body. (They gave him over 3 liters (picture that!) yesterday to accommodate his body during the intubation and ECMO procedures. Overall, it was a good and boring day!

The main focus is still this infection – MRSA (Methicillin-resistant Staphylococcus aureus – pronounced “Mer-sa”). I know many of you pray – when you do, pray that the power of God would chase out every bit of MRSA in Judah’s body.

I’m reminded of these words of Jesus: “Again, I tell you that if two of you on earth agree about anything they ask for, it will be done for them by my Father in heaven. For where two or three gather in My name, there am I with them.” Matt 18:19-20

Let’s believe together for complete healing in Judah’s body!

Tuesday, May 22

Continuing To Do Well

Judah had a good night and morning. He is continuing to diurese (peeing off extra fluid), which is really good. They are planning to start him on Pedialyte today, and if he tolerates that well, they’ll start giving him formula via his g-tube. This is another step in the right direction.

Later today, a doctor from Interventional Radiology (IR) will come to look at a few isolated pockets of fluid in his chest. The hope is that he’ll be able drain them right at the bedside.

Infection
To fully test for infections, they take cultures and wait to see what grows in the lab over 48 hours. It doesn’t necessarily take a full 48 hours to start growing something. Cultures from Sunday grew MRSA (pronounced “Mer-sa”), cultures from yesterday didn’t grow anything. Since it hasn’t been 48 hours for either, it doesn’t really mean anything yet. But, it may be a good sign. It could mean the antibiotics are working quickly. The Infectious Disease (ID) doctor is “cautiously optimistic”. We’ll have to wait and see to know for sure.

Praying
We have a known opponent. It’s name is MRSA. I think about the story of Jesus speaking to a fig tree. He basically cursed it. He said, “May you never bear fruit again.” It immediately withered. Jesus said, “Truly I tell you, if you have faith and do not doubt, not only can you do what was done to the fig tree, but also you can say to this mountain, ‘Go, throw yourself into the sea,’ and it will be done. If you believe, you will receive whatever you ask for in prayer.” Matthew 21:18-21

Jesus spoke directly to the tree and it obeyed. He goes on to tell us that we can do the same and even more. Today we speak to MRSA and curse it in the name of Jesus, just like He did to the tree. By doing that, we simply join Jesus in what He did and do what He said we could do. The power doesn’t come from us but from the Holy Spirit.

I would rather die still believing and not seeing, than to live a life without faith. We encourage you to join us in believing.

Wisdom
Please also continue to pray for our doctors and nurses. It’s incredible to watch them discuss all the things going on with Judah. There’s such a wealth of knowledge and experience here. It’s truly a team effort. We’re so grateful for them and ask God to give them wisdom, discernment, and a perfect plan for Judah.

Thank you all so much! We’re continually blown away by the outpouring of support. It means so much to us!

Much love,
Nick & Liz

Wednesday, May 23

Ok Day

Judah at a Dr. Appointment – August 2017

Hey everyone, Judah had a pretty good day as far as getting rest and nothing really happening. But while some of the bacteria cultures are taking longer to grow (which means the infection is slowing down), they found some in other places in his body – his chest drainage tubes and most concerning, his heart. These discoveries aren’t necessarily new, they just hadn’t tested or looked in these other places until today. Thankfully, it’s all the same thing (MRSA). It’s not a big surprise, but obviously, it would have been better if they hadn’t found it.

During an ultrasound today, they could see bacteria attached to one of his heart valves. As I said earlier, this is concerning. It’s possible that the antibiotics will take care of it, but it’s also possible that the bacteria could damage the valve enough that he would need another heart surgery to replace it.

Please continue to pray and believe with us that this infection will be completely gone soon, and that it will leave no lasting negative effects.

On the positive side, a doctor from IR (see yesterday’s post) came to drain some fluid from an isolated pocket in his chest. He was able to do so and, so far, it has not tested positive for infection. He’s also peeing like a champ. This is important because he’s still really puffy from all the fluid they gave him on Sunday.

To the family that recognized us while we were out with our daughters tonight and told us you were praying for us, and to the rest of you that have shown such incredible care for us – THANK YOU! It’s SO encouraging to know there are so many of you standing and fighting with us! Let’s continue to believe until he’s well.

Much love,
Nick & Liz

Thursday, May 24

Low-Key Day

Not much happened today, which is generally good. There is still A LOT of infection in his body so please keep praying!

They backed off some of the sedation he’s been on–not much, but enough for him to try and open his eyes when he heard our voices. It was a beautiful moment. We miss our boy. We miss his laugh, his smile, his questions, and his need to entertain whenever he has the chance. This has been so hard but we’re so glad to know he could hear us and know we were there. Liz read him a few books and I talked about all the stuff we would do when we get home. He loves to “help” me cut the lawn. I can’t wait to do it with him again.

Please keep Liz and I and our two girls (ages 3 and 1, who aren’t able to be with us) in your prayers as we walk this road.

Much love,
Nick & Liz

Friday, May 25

Better Heart Function, MRSA Holding On

Hey friends, Judah has remained steady. His organs are functioning well and his heart function has actually improved. On Wednesday, they noticed that his Tricuspid Valve was regurgitating (leaking), which isn’t good. After today’s echo, it’s regurgitating less, which is great news. He is doing well except for the infection. While it does seem to be slowing, it’s holding on and is still very active in his body.

They also found a new type of bacteria that was growing in one of his chest drainage tubes. This one isn’t as serious as MRSA, but is still concerning. His doctors have added a fourth antibiotic to his course to cover this new bacteria. It’s tough to know all the details about it because it was taken from a secondary source (the drainage tube) rather than the primary source (his chest). We’ll have to wait until they change his chest dressing to get a better sample.

Please continue to pray for Judah. The longer he is on ECMO support, the higher the chance of a complication. We need God to bring healing to every part of the infection, quickly. Also keep us in prayer. We’re used to being able to do something and right now it’s just a lot of waiting around for the infection to clear. It’s not the easiest thing to do as parents.

We love you all so much. Thanks for standing with us!

Much love,
Nick & Liz

May 12, 2018

Post Fontan Surgery

Hey friends, things have been going well since Judah’s surgery this past Thursday. I’ll catch up those of you that haven’t seen my Facebook posts. If you just want the latest news you can skip down to the break.

After about a 7 hour surgery, we talked to the surgeon, who had a great report–everything went as planned. That night, Judah was extubated (the breathing tube was removed that went through his mouth, needed during surgery) without any problems. His first words were, “I was so brave.” Then he tried to flex his muscles –– perfect! It was great to see a tiny bit of personality.

The first night Judah hardly slept. He didn’t seem to be in a lot of pain, he was just awake most of the night. Yesterday, Friday, was a pretty calm day. Medically, he’s doing well, but he’s uncomfortable and cranky most of the day (which is to be expected). They removed an IV line, so that made things a little easier.

Last night he slept well (which is great) and today he’s back on a normal wake/sleep schedule. It’s been a similar day today, and we’re still seeing medical progress. He’s been weaning off a few medicines and is able to eat and drink. They took out his arterial IV line from his wrist and we saw a HUGE change in Judah. He’s talking, asking questions, playing a little, and overall much more himself. We’re VERY happy about that. We miss our goofy little guy. He was also able to be helped out of bed and into a chair for a few minutes. It’s amazing what he’s able to do only 48 hours after major open-heart surgery.

Tomorrow, we hope to get him up walking around a bit and Monday we’ll continue getting more mobile.

Our biggest concern at this point is that he has some fluid in his lungs. He has a really hard time coughing due to the pain his chest and torso are in. It’s important that he is able to clear all the “junk” out so that it doesn’t settle in his lungs.

We SO appreciate the support from you all. Whether it’s thoughts, vibes, or prayers, it means so much to us! We always ask for prayer because it’s what we believe in. We’ve seen it and felt it in action. We’ve lived it. It’s a unique feeling when you can feel the prayers of others, actually holding you up in times like these. We’re grateful to God for His grace and strength over the past few days. He’s been so good to us and to Judah.

Looking forward to reporting more good news!

Much love,
Nick & Liz

May 8, 2018

Spring 2018 Heart Surgery – The Fontan

Selfie family photos always look great, right?

Hey friends! We’ve known this day would be coming since we first learned of Judah’s condition in November 2012. The Fontan is the third in the series of three heart surgeries required to “bridge” Judah to a transplant later in life. The first surgery was done 5 days after he was born and the second at one year.

This Thursday, we’ll bring Judah in for the surgery. It will last 6-8 hours and, if all goes well, he’ll be groggy but awake Thursday evening. In-hospital recovery time is 2-4 weeks and we’ll be staying at the Ronald McDonald house since we live about an hour away from Strong.

This is completely new territory for us since we haven’t had other kids with us during a major surgery or hospital stay. Now, our girls are 3 and 1, and Liz is 4 months pregnant with our second boy. We’re not sure how things will go and how we’ll balance everything yet. A lot of it will depend on how Judah is doing.

It’s going to be a difficult week, so please keep us in prayer. Specifically, for Judah and the doctors on Thursday (surgery at 9AM). For Liz and I during the surgery as it’s one of the hardest times as parents. For our girls as their lives will be flipped upside-down.

On one hand, we know it will help him and he’ll be able to do more, but it’s never easy to go through a surgery day and recovery time. We wish he didn’t need the surgery, but he does and it’s something we can’t go around—we have to go through. God has been so faithful to us with each step, we know He will continue to be who He is: A faithful and good God.

Thank you for standing with us during this time. I’ll be updating here and on Facebook. If you want updates sent via email, you can subscribe on the right side of this page.

Much love,
Nick & Liz

Here’s a page that describes Judah’s condition and has a few short (animated) videos of the three surgeries.

September 27, 2017September 27, 2017

Fall 2017 Update

Hey everyone! I know it’s been a really long time (over a year!) since we last posted but that’s because Judah has been doing great!

Life Update
In case you didn’t know, we’ve been a family of 5 for about 5 months now. We welcomed Ava Jane on May 1st. She’s the perfect addition to our family. Both Judah and Giana love her immensely and they (usually) love being Momma’s helpers. Judah sings a song he made up for her that goes, “Lit-tle, tiny Ava, lit-tle tiny Ava”. It’s cute and reminds us of his sweetness.

Judah was chosen as one of this year’s “Miracle Kids” for Golisano Children’s Hospital in Rochester. This included a news interview (to air this fall) that Judah “hammed” it up for. :) My photography business continues to grow and expand, for which we’re grateful for. Liz now leads our local MOPS (Mothers of Preschoolers) group at our church and I couldn’t be more proud of her.

Trach Tube
In July 2016, they removed Judah’s trach tube – something we’d been waiting years for. Since then, he has done really well. The place where the tube was still remains partially open. We hoped it would have closed on it’s own by now but it still has a bit to go. Since it’s very low maintenance and it doesn’t seem to bother Judah, we’ve agreed with the doctors to continue to let it close on it’s own.

His Heart
The reason this page exists is because of Judah’s heart condition. He was born with HLHS, a serious heart defect. (You can go back to November 2012 if you’d like to read our story from the beginning.) There is currently no “fix” for his condition, only a series of three surgeries to bridge him to a heart transplant. Judah has had two of those surgeries so far, the Norwood at 5 days old, and the Glenn at 1 year. Next would be the Fontan around age 5. Since he will be 5 in November we’ve begun to talk about the Fontan.

Before I get to where we are now, I want to go back to March of 2015 when Judah was hospitalized with pneumonia. It was a scary time. He’d been fighting a cold for months and it finally landed us in the hospital for a few weeks. The sickness did a bit of damage to his already weak heart. Whether his heart already beginning to fail allowed him to get sick or the sickness did the damage, no one was sure. I’ll never forget when one of the cardiologists told me he did not believe Judah’s heart would recover, and that Judah would probably not be a candidate for the next surgery (the Fontan), and that he may need a transplant much sooner than originally thought. It was hard to hear. We would just have to wait and see.

After 3 weeks in the hospital, Judah was healthy enough to go home but his heart still wasn’t working the way the doctors hoped. As the months went by, Judah continued to grow and do well. Truthfully, if you didn’t know who he was, you wouldn’t know he was functioning with only half of a heart and stood at the doorstep of death more than once. It’s amazing.

About every six months Judah would have an echocardiogram (sonogram of the heart) and after each one the report was the same: his heart function is improving. Each time, it was incredible news! Last month, Judah had another echo, blood work, and a cardiac catheterization (an in-depth look at the heart function). All of the tests showed that he has improved dramatically and some (blood) levels and numbers are that of a “normal” kid. He’s doing so well, that, after the tests, the doctors talked together and all agreed that he is healthy enough for the next surgery! We consider this a miracle!

Judah will be scheduled to have the Fontan next Spring. Although surgeries and hospital stays are always difficult, we are grateful to God for bringing Judah so far. He is good and faithful!

Thank you all so much for your faithful prayers over the years. In the darkest of days, we felt not only God’s presence but the prayers of many holding us up. When we were too weak to stand, you stood for us. For that, we will be forever grateful.

Please be praying for Judah’s health from now until the surgery in the Spring and that the opening that the trach tube left would close completely. From the beginning we have been praying and believing God for complete healing in Judah’s body. Please believe with us!

Thank you for following our story over the years, it means the world to us!

Much love,
Nick & Liz

Judah and I after his cardiac cath a few weeks ago

June 30, 2016

Today’s the Day!

A few weeks ago, Judah had an overnight sleep study done that went well. This morning, we’re taking Judah up to Strong Memorial Hospital. They’ll do a scope to look at his airways and as long as nothing has changed, they’ll take out his trach. The removal itself is nothing more than just pulling it out. They will bandage it up and we will stay the night for observation. The hole should close on its own over the next few weeks and months.

Please be praying that all goes well and we are able to bring home a trach-free kid!

June 3, 2016

Welp, that went well…

J & G — Judah waiting with me for Liz and Gigi to pick us up // Back home, playing in the yard

Hey everyone! In case you missed on Facebook, Judah does not need the surgery and we are back home after just an overnight stay!

After looking at Judah’s airways, the doctors saw that his airway is much more open than they thought or expected. They concluded that his airway is only 10% smaller than the average kid his age! In our mind, this is a miracle! They decided to use a laser to cut away some “webbed” scarring in a few spots, and also used a balloon to stretch it out as well. They kept him overnight, just for observation.

In a few weeks, we’ll go in for a sleep study where they’ll monitor Judah as he sleeps with his trach “capped” (plugged, forcing him to move all the air around (instead of through) his trach in his airway). If all goes well, we’ll go back into the hospital soon after that, and they’ll take out his trach (takes one second, we switch it out every two weeks), put a bandage over the stoma (hole where the trach was) and we’ll stay overnight for observation. It is the doctor’s expectation that this will all be done before the end of this summer!

This result is far better than we expected! We’re grateful to serve a God that exceeds our expectations! A few days ago, we felt we needed to stretch our faith to believe for more…and God went even further than that!

Thank you all for your prayers! If we could thank you all personally, we would. We’ll let you know how things progress from here!

Much love,
Nick & Liz

May 27, 2016

Big Things Are Coming

Hey everyone! It’s been a loooong time since we’ve posted anything, but it’s been for good reason–everything has been great! The doctors, Liz, and I were moderately concerned about Judah’s ability to make it through the winter without getting very sick and needing another hospital stay. Thankfully, his health was great all winter. He had a few colds but was able to bounce back in a normal time frame, just like any other kid!

Short Version
Judah is scheduled for LTR (Laryngotracheal Reconstruction) Surgery on June 2nd. There’s now a possibility that Judah’s airway is close enough to the size it should be for his size and age. If that is the case, they will use a balloon and try to stretch his airway to the right size. We would then go home (the same day) with the trach, and be able to take some small steps later on to remove the trach without surgery. If they determine his airway is still too narrow, we will proceed with the reconstruction. This would include taking cartilage from one of his ribs and grafting it into his airway to make it wider, and removing the trach tube. He would remain sedated for about a week to allow for healing. The total hospital stay would be about 2-3 weeks. Scroll down to see prayer requests.

More Details

His Heart
In March of 2015, Judah was very sick and ended up being hospitalized for a few weeks. During that time, the doctors noticed his heart wasn’t pumping as strong as it should. He was put on some medications to help that. They weren’t sure if his heart wasn’t pumping well because it was getting weaker on it’s own, or if it was a result of him being so sick. In the fall of 2015, they found that his heart was pumping about 50% better, but it has not improved since then. We’re very grateful that his heart is in better shape than a year ago, we weren’t sure that it would improve at all. Now that it’s stable, he’s ready for his trach tube to come out.

LTR (Laryngotracheal Reconstruction) Surgery

Trach Tube — Where Judah’s airway is narrowed

Judah has had two major problems, his heart and his lungs. While his heart is in moderate condition, his lungs are doing great. He still has a trach (tracheotomy) tube because there is scar tissue from when he was intubated (breathing tube through mouth to lungs) for the first few months of his life. Having the trach requires frequent care and maintenance from us, and is also restricting on parts of his life–mainly, his ability to speak with more endurance, full strength and volume. Now, I’ll be honest, having a 3-year-old that’s about 40% quieter than he should be hasn’t been the worst thing in the world. ;) But we want him to be 100%! The LTR surgery will do just that.

We’ve been waiting for this surgery for over two years. Since April of 2014, it’s been delayed for one reason or another on four occasions. At times, it’s been very difficult for us. I’m happy to say, we are less than two weeks away from this big step!

LTR surgery is a pretty major one. They will remove the trach tube, take a piece of cartilage from his ribs, shape it, and graft it into his trachea, to widen and strengthen it. After the surgery, he’ll be sedated for about a week while it heals. which might be the hardest part for us. Not having our crazy 3-year-old around won’t be easy, but it will be worth it. Hopefully, after a few weeks, we’ll be on our way home with a brand new (and much louder) kid, without a trach! There is also the possibility that the graft won’t “take” and we’ll have to wait until next year to do the whole thing over again.

So, we’ll go in next Thursday not knowing if he’ll have major surgery and be sedated for a week, or if we’ll be bringing him back home. Either way, we are moving towards removing the trach tube!

Prayer Requests
Please be praying that:
– Judah will remain healthy and that nothing will deter the surgery
– His airway will be large enough that he won’t need the surgery
– If he does need the surgery, that it would go perfectly and the graft would “take”

Thank you all so much for your thoughts and prayers over the years and through this next phase! We’re continually blessed by your heart for Judah and for us. I’ll leave you all with some photos and videos from the past year or so.

Dantonio Family Photos_Fall 2015-76 — Fall photo session

Dantonio Family Photos_Fall 2015-22 — Judah’s favorite toy

Dantonio Family Photos_Fall 2015-184 — Judah with Giana (Gigi), now 16 months

Dantonio Family Photos_Fall 2015-229 — After I told him it was time to come in #meltdown

Judah singing the theme song to his favorite show…Paw Patrol
“Paw Patrol, Paw Patrol, we’ll be there on the double…”

April 3, 2015

Home!

Hey friends, we’re home and doing great! Full blog post tomorrow.

Much love!

April 2, 2015

Ready To Go Home!

Hey everyone,

Judah has continued to do very well. So much so that (as long as everything stays the same overnight) they will discharge Judah tomorrow!

Overall, he’s been doing incredibly well. His lungs are in great shape and his body has adjusted to being off Milrinone. They did another echo today and his heart looks about the same as it did last week. Although it’s better than when he first came in, it’s not back to his normal. It’s possible that it could still go back but it’s also possible that it won’t. It’s hard to say at this point what will happen. Even if it doesn’t get better, he could go for years in the condition he’s in. Our cardiologist has said, “You don’t treat the echo, you treat the patient.” So, as long as he’s in good shape and happy, nothing really needs to be done. At this point, having the LTR surgery and getting the trach out is still on the table. We’re scheduled for mid-May but that may need to be pushed out to sometime this summer.

He’s been doing great off the vent during the day (about 12-14 hours) and only goes back on at night. This is how we’ll go home. Thankfully, it’s only for a few weeks while he continues to recover. Since he’s been sleeping so well during the night, Liz and I will be able to handle it without having overnight nurses again.

We are so happy to be going home! We give God glory for Judah’s quick and smooth recovery! Thank you all so much for all your thoughts and prayers. It really means so much to us!

Much love,
Nick & Liz

March 30, 2015

Great News Should Be Shared!

Judah on a walk with Grandma without the IV pole

Hey friends,

No news is good news but great news should be shared. Tonight, we have lots of great news!

1) This morning, Judah had an X-ray and it looks amazing! When we first came in, his lungs were full of fluid, but today, they look very clear!

(Left) Judah’s lungs when we first came in, (Right) Judah’s lungs today (Black = air, grey = fluid)

2) He did great over the weekend with only a half dose of Milrinone, so today they took him off completely. As a result, they were able to disconnect him from his IV line which gives him much more freedom to move around. Our hope is that he’ll do well without the Milrinone over the next few days so that we’ll be done with it.

3) From when he was his sickest, the size of his heart has gone down and the valve that was leaking isn’t leaking as much. These are both very good things! If his heart continues to do well, we may be able to still have his trach removed in the coming months.

If he continues to do well, we will start trying to get him off the vent. Our hope is to start that on Wednesday. Hopefully, he’ll do well enough to go home without the vent at all.

Please be praying that his body and heart will be fine without Milrinone and that he will be able to come off the vent before we come home. Also, that God would give our doctors wisdom, and that Giana, Liz and I would stay healthy while we’re here in the hospital.

We serve a great God and we are so thankful for Judah’s quick turnaround! Thank you all for following our story!

Much love,
Nick & Liz