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
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
