[Sorry, I accidentally published the post before I finished it. Here's the completed post.]
I posted on Facebook yesterday that we had been discharged mid-afternoon. I apologize if some of you that only read the blog didn’t know until now.
We made it home and have been enjoying being here so much! As soon as we walked through the door, Judah seemed to realize he was home and perked up a bit. Here’s a photo taken last night in his own jumper.
Thank you to everyone that has been following us and praying for us! It really means so much to us!
We will continue to update you as news arises.
Nick & Liz
From one of Judah’s favorite nurses
Well, it’s been a very up and down couple of days for us. His fever would come and go without any explanation as to what was causing it. He had been on antibiotics since Friday and getting regular doses of Tylenol and Motrin, and the fever would still spike through. Because all of his tests and cultures kept coming back negative, everyone has been at a loss. Today, we decieded to stop the antibiotics and the fever has been gone since late morning. Whether it’s a coincidence or a direct result, no one’s sure yet. We just hope it doesn’t return.
In other good news, Judah turned one yesterday! It’s been an unbelievable year for the three of us. One year ago today they gave us the news of Judah’s heart defect. Needless to say, it completely wrecked us. We’re so grateful that he has made it through so many hardships. Just the fact that he was able to sit on our laps tonight and watch a movie with us fills our hearts with joy.
More good news
- His drainage was low enough over the weekend that they removed the chest tube yesterday morning. He’s happy about that!
- He passed his swallow test (pharyngogram) with flying colors! He’s also started drinking (a very small amount of) water from a sippy cup and baby food from a spoon! This is a HUGE step that we didn’t expect to happen until winter-spring. He’s not taking a lot yet but the fact that he wants it is amazing!
- The amount of times he throws up during the day has dramatically dropped since surgery and since switching formulas.
Even though we’re still here we have a lot to be grateful for. Please continue to pray that the fever does not return and Judah has a good night. If that happens, we start to talk about going home.
Thank you all so much for sticking with us through this past year. Your words, prayers and gifts have blessed us beyond what our words can say. We’re so grateful for what God has brought us through and that He has never left our side.
Much, much love,
Nick & Liz
“Reading” a birthday card
From Aunt Alicia and Alex
A drum to beat on (or eat) from Grandma
Bouncing in is jumper with his trademark lips
On Tuesday Judah wasn’t feeling great and had a fever. They ran tons of tests and cultures, but none of them came back with anything to speak of. He was put on two broad spectrum antibiotics and he turned around pretty quick. He was doing well so they took him off the meds. This morning Judah had a fever again and he’s been pretty cranky all day. Despite getting Motrin and Tylenol, his fever hasn’t broken all day. They’re currently running more tests and cultures but we won’t know much until tomorrow. His white blood cell count is normal, which is strange, because if he had an infection that number would be high. Right now, no one is really sure what the issue is so we are putting him back on the broad spectrum antibiotics.
We were looking at the very real possibility of going home on Monday, (which happens to be Judah’s 1st birthday) but now that’s in jeopardy. Above all, we want him to be well but we would also like to bring him back home.
Please be praying that his temperature would drop and that whatever is causing the fever would be healed.
Thanks so much!
Nick & Liz
Just a brief update. Judah was pretty crabby throughout the day and it now looks like he may have an infection. This comes as no surprise because of the close proximity of the trach and the incision site on his chest. Antibiotics were started this evening and they have taken all kinds of blood work and samples. We should know more details over the next few days. At this point they fully expect him to respond quickly to the antibiotics and be back to normal by Thursday. He’s also been very itchy. He had a bad rash at the end of last week that has largely cleared up but he’s been itching around his drainage tube site and trach area a lot. We’re not really sure why but we would love it if it wasn’t an issue.
Please be praying for the infection to be healed and his itchiness to subside. Our God is able.
Nick & Liz
If you were following our blog last year, you might remember this blog post about Enfaport. The problem then is the same problem now: a chylothorax. Basically, until this heals (in about 6 weeks), his body can’t handle a diet that has fat in it. We know this is a problem because the drainage from his chest tube is cloudy instead of a yellowish-clear. Yesterday, we switched him to Enfaport, a nonfat formula, and we are already seeing an improvement. This really isn’t a big deal and it shouldn’t keep us here much longer than we already expected.
At this point, our largest obstacle in getting home is his chest tube. The color needs to pretty much be clear and the amount that comes out needs to be consistently very low. He has been decreasing pretty steadily so we are grateful for that! Our other big concern is infection. So far, it’s been good but the risk is high for someone that has a trach so close to the incision. We, along with our nurses, have been extremely vigilant about his chest dressing but it doesn’t take much to cause a problem.
Please be praying for a clearing up (in color) and a drastic decrease in the amount of drainage from his chest. Also that there would be no infection or any other complications.
Judah is very much back to his happy self. We’re so happy about this! We stopped his round-the-clock doses of tylenol and he has done great. We thought it would be weeks until he was back to himself but it’s only taken a week! We’re very grateful for such a happy baby.
Thank you all so much for your prayers! They mean the world to us!
Nick & Liz
Judah is doing well. Yesterday they took his art (arterial) line out and today they took the internal jugular line out that was in his neck. That just leaves his chest drainage tube and an IV line that’s in his arm.
He is progressing very well. Each day the swelling (which is normal) goes down and he seems to be (slowly) returning to himself. Today we had him out of bed and playing on a mat on the floor. He didn’t like it very much but it’s good for him. :)
We started feeding him through his g-tube as well today. Not very much to start but we will continue to work up to full feeds over the next few days.
The only issue we’re having is he seems to be having an allergic reaction to something. He has a pretty angry rash around the areas where they’ve either cleaned with a medical solution (like Betadine) or used some sort of tape or adhesive. We all agree it’s not something from a medication. Right now he’s getting Benadryl regularly but it doesn’t seem to be getting rid of it. We will talk with the team in the morning and hopefully figure something out.
I would say we’re actually ahead of schedule in terms of when we’re going home. We know nothing is guaranteed here but we’re very grateful to God for where we are.
- That Judah would continue to progress and be able to handle the increase in food
- That his allergic reaction would subside
- That the doctors would have wisdom in what to do at every step with Judah
- That there would be no complications and we would be able to bring Judah home soon
Thank you all so much for your thoughts and prayers. They mean so much to us!
Nick & Liz
Judah is doing very well! He’s been mostly sleeping (thanks to some meds) since he came up from surgery yesterday. He opened his eyes a few times this afternoon but not for long. Everything is going well. We removed the breathing tube and put him back on his regular trach. Other than that there isn’t much to report. Things are progressing normally for what he’s been through.
Please continue to pray for a quick recovery, no complications, no infections and wisdom for our doctors and nurses.
Liz and I are doing great. Since he’s been asleep since yesterday, we have been able to catch up on sleep ourselves and we’re feeling good. Thanks for your prayers!
Nick & Liz
Here’s a photo from yesterday morning that I thought I’d share:
Judah getting ready for surgery!
Hey everyone, Judah is out of surgery and things went very well! Not a lot of details right now but we will be able to be with him soon. If I can, I’ll update more tonight. We’re pretty exhausted so it might not be until tomorrow.
Thanks for all the prayers!
Nick & Liz
Early tomorrow morning will be heading to Strong Memorial Hospital for Judah’s second open heart surgery called the “Glenn“. This is the second of three heart surgeries he needs by the age of five. We will bring him in at 6:30AM and by 7:30AM they will have begun the procedure. They expect it to take up to 5 hours with the heart surgery itself only taking 30 minutes.
At this point the biggest concern is infection. As most of you know, he has a trach and has been on a vent since he was born. The issue is that the hole for the trach is only an inch above where his chest incision will be. It’s very important that drainage from one area doesn’t get to the other. There is also some concern with some extra veins that have grown, but we are hoping that will correct itself after surgery. (Read this post for more info about that.) That’s all on top of recovering from major heart surgery. Because of all these reasons, they expect our stay to be about three weeks. This is about a week longer than most kids with this surgery.
Even though Judah is now off the vent for 12-14 hours a day, they have no intention of removing the trach while we’re in the hospital. They would like to see him fully recover with the help of the vent and then discuss removing the trach. Full recovery is about 4-6 weeks.
This last year has been crazy for us. One year ago we were expecting a completely health baby boy. The biggest thing that has gotten us through is our faith in God. His grace and peace has touched us in the realest way imaginable. If you’re willing, we ask you to keep us and Judah in your prayers tomorrow and in the coming days and weeks.
Here are a few requests:
- We believe God is still able to do miracles. We will never stop hoping and believing for a miracle in Judah’s body.
- A complete success in surgery.
- A quick recovery without complications or infections.
- Grace, peace and strength for Liz and I.
Thank you all for praying, believing and standing with us this past year! We are so grateful for you all!
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Below are more details on what HLHS is and what they will be doing tomorrow.
Nick & Liz
What is HLHS?
Judah’s first surgery last November called the “Norwood”
What they will do tomorrow (the “Glenn”)