Judah had an okay day. Early this morning around 5AM, he had another “episode” where he had trouble breathing. Thankfully, they didn’t have to go through all they did last night with bagging and changing the trach. They just turned up his oxygen and he eventually recovered. By 9AM he was full of smiles and being his happy self. Throughout the day he did pretty well although he didn’t quite seem himself. After the incident last night, they gave him fluids through an IV instead of feeding him until about noon today. He did good most of the day but tonight he threw up most of his 9 o’clock feeds. We’re not really sure why he didn’t keep his food down, hopefully it doesn’t become a trend.
At this point no one is really sure why he is having some respiratory issues. They did put a PICC line in him today. This allows quick access for IV fluids (if and when needed) and also an easy place to draw blood for testing.
Please be praying that his respiratory issues are diagnosed and resolved quickly without any harm to him. We are believing God for a quick end to these issues. Also, please pray we’re able to find the right combination of calories and volume of formula so that he gets what he needs, but also doesn’t throw it up.
Thank you all so much for following our story and praying for our Judah!
The last 24 hours have been more up and down than we’ve had in a while. Last night, Liz and I spent most of the night with Judah because he was having a lot of thick mucus-y spit ups. As the night went on, his spit ups lessened to the point where we felt comfortable leaving around 6AM. We got some sleep and checked in on him around noon and he had been doing well since we left. Once we got back to the hospital, we played with him, gave him a bath and dressed him. Around 6:30 this evening I was holding him and he was pretty inconsolable – this isn’t too uncommon for him. Many times he has gas or the trach is sitting funny or he’s teething. We noticed that his lips were looking blue-ish and he wasn’t just upset. He was visibly having a hard time breathing. The first thing we did was look at his numbers on the monitor, mainly his blood oxygen level. That was good so it was strange that he was having such a hard time. We asked a nurse to come in a take a look and she also thought it was strange. After examining him for a few minutes she felt it was time to call for another nurse’s opinion. She came in and took one look at him and called for help. She wasn’t “buying” the numbers, they just didn’t match how he looked. Within 20 seconds we had about 10 people in the room ranging from attending doctors to respiratory therapists to nurses and a few resident doctors.
Their first thought was that the trach was plugged again. After this was ruled out they tried changing the trach and bagging him. (See yesterday’s post for a little more clarity on plugged trachs and bagging.) We could see that none of these things were really working. They gave him some Fentanyl which is used as a pain reliever and anesthetic. This, along with some fluids, seemed to have helped him calm down. Eventually, Judah settled down and has been doing good since then.
At this point, there is no obvious reason for what happened. They are currently running tests and cultures on everything. We won’t get results back for another 24-48 hours. The answer could be as simple as he was in pain and worked himself in a hyperventilating mess or it could be he has a virus or something else “brewing”.
Please be praying that Judah doesn’t have any more “episodes” and that what happened today (1) isn’t anything serious and (2) doesn’t happen again. Pray that if there is anything behind this, that it’s found and dealt with quickly.
We have found that one of the keys to getting through a situation like ours is finding the positives in everything. Today we learned that we do know when he’s alright and when he’s not. And although we hope we never have to deal with a situation like this while we’re home, we’re glad we got to see how it should be handled while we’re still in the safety of the hospital.
We are still in the middle of packing/painting/moving into our new home, interviewing nurses and working with many different people on insurance details and home care supplies. All this on top of taking care of Judah’s needs. Please keep us in prayer as this is all a lot to be doing at the same time. Honestly, we’re doing well. God has given us the peace and grace to be able to handle all of these things. He is still good!
We continue to believe for complete healing for Judah. We believe God is able! Thanks for praying and believing with us!
I planned on giving you a detailed update from the past week but instead I’m just going to ask you to pray for Judah tonight. He’s had a rough few days. Over the weekend he had a lot of trouble keeping his food down. This could be because of a few reasons. The most likely reason is because we changed his formula a bit last week. This afternoon and tonight he seemed to do better with Pregestimil, which is very easy for babies to digest. Also this afternoon, Judah had a very thick plug (of mucus) in his trach which caused his blood oxygen levels to drop and the nurse had to “bag” him. (This allows the nurse to manually give him breaths. This gives the nurse the ability to actually feel if there is any resistance when she squeezes the bag. For more info on “bagging”, click here: Ambu Bag.) Thankfully, his airways were clear and the nurse was able to put him back on the ventilator. At this point, (now that his airways are clear), his oxygen saturation levels should have come back up right away. They did not. Because they didn’t, they had to put an IV line in and put heart monitor leads on his chest. After about 30 mins his sats come back up and have been good since then. They would like for him to bounce back right away after a plug like that so we’re hoping the next time is better.
Although he has been able to keep his food down, he has had tons of extremely think mucus. So thick that he can’t cough it up so he ends up gagging and throwing it up. It’s possible that he’s starting to get a cold and that’s the source of the extra mucus. They did take an x-ray this afternoon and, thankfully, that looked clear.
On top of all of this, he’s starting to teethe.
Please pray that Judah is able to continue to keep his food down and that the mucus thins out and is able to be dealt with normally. Also, please pray that he does not have a cold or any other sickness. Something as simple as a cold can be very dangerous for Judah. Let’s believe for a good night and no sickness for him!
We thank God for his grace and peace through this season. He has truely kept us during this time. We continue to put our trust in Him and hope that you do as well.
Many of you know there was a fundraiser for our family today in Warsaw. We just wanted to say thank you to all the vendors, volunteers and attendees for coming out to be a part of the event. We appreciate it so much!
We want to especially thank Tasha Northrup and Ashley Milliken for organizing the event and for all your hours of hard work. Thank you so much! You guys are amazing!
We’re home this weekend packing and getting ready for the move to our new place in the coming weeks. Judah is doing great and smiling a lot. Nothing in the world is better than when your child smiles at you!
Thanks for following our story and caring for our family. Please keep praying for Judah!
It’s been a busy few days so we’re pretty tired out, but everything has remained pretty steady with Judah. Yesterday I was gone from 9AM to 1AM to shoot a wedding in Buffalo and Liz’s mom spent the day with her. Today, we decided to go to The Fathers House for church and we met some friends from home for dinner this evening. Our home church is in Warsaw but we didn’t want to be away for so long two days in a row. We are very grateful to have such a good church so close to us. We felt encouraged and blessed to join them in worship.
I’ve learned a lot of valuable things throughout life but none was more important than the lesson I learned from my mom when I was 14. My dad had just passed away. We decided we wanted to have worship songs at the funeral. My mom normally sang on the worship team, but for this day, she stood with my sister and I in the front row. Half way through, my mom walked on stage, picked up a mic, and began to worship God with the rest of the team. It was a statement. It was something she had to do. She was going to worship God and declare that He, in the midst of tremendous and devastating loss, was still worthy to be praised. I carried this lesson from that day to this day. I learned that no matter what, you worship. Always.
Today we had a chance to worship with other believers. We did. We sang, “Through the storm, He is Lord, Lord of all.” This does something inside of you. It changes everything. When the evil of sickness and disease and tragedy comes at you like a tidal wave, and you stand in the face of it and declare that our God is worthy, everything shifts. Something inside you stirs and faith rises up. Liz and I hoped from the first day we heard the news of Judah’s heart, that even in all of this, God would use us to encourage others and point to Jesus. So today, even with our hearts still so tender and fragile, and while in the midst of this storm, we declare that God is worthy and that we will worship Him. Always.
There hasn’t been much change or news over the past few days. Like we’ve said, no news is good news. He has been pretty stable and we are still on track to have his surgery on Tuesday.
Tomorrow we will talk to the doctors about possibly putting in a “G-Tube” (gastrostomy tube) at the same time they operate on his diaphragm. This was brought up last week and had been something we had decided against, but now some of the doctors think it might be a good idea. So, we will talk it through tomorrow. It was our hope that he would not need one at all, but right now it looks like this might be the best option. If we decide to do it, I will fill you all in on the pros and cons tomorrow.
Please pray that Judah continues to hold down the new formula (Enfaport) as it can be harsh on the stomach the first few days. Also, that God would give us and the doctors wisdom for the decisions that need to be made tomorrow about the G-Tube. We still pray and ask God to heal Judah from all of these things. We believe He is able!
Thank you all for you constant support and prayers. It means so much to us!