Joshua – Status Update

March 29, 2026

We spoke with Joshua's Dr. this morning and he was pleased with Joshua's progress. It is a little confusing he does well during the days, but at night his oxygen need drives him back up to 100%. Then in the morning he looks good and they begin to wean him down again. The plan is to continue to monitor his progress and to continue to reduce the amount of oxygen he is receiving as deemed possible. I hope one of these evenings, the daytime weaning will hold through the night.

In addition to the work they are doing on his lungs, they are working on other aspects of his care where different organs may be impeding on his lungs. For example, last night a tube was inserted into Joshua's stomach to help relieve the gasses being built up. With all the high pressure breathing he is doing, some of that air is 'infalating' his lungs, so I look at the tube as a high-tech burp.

What is it like spending time in the ICU? For much of the time, you are hoping for boredom followed by quiet signs of progress, such as having your child require less oxygen or a reduction of the sedation so you can interact with your child. That was the desire for today. Then, when we switched from Natalie's room to Joshua's room around 4:00 today, we arrived just in time for his respiratory therapy. The positive excitement is when you hear a big slimy clump of mucus get coughed into the throat and then suctioned out. Sadly, this is also when we get the excitement in the other direction, which is what happened today. After the shaking vest was finished, JOshua began to struggle with his breathing. He was clearly distressed and his oxygen levels were dropping. Everyone came in and did their job and about 15-20 minutes later, Joshua was stable again. Those brief moments of 'excitement' are terrifying. You see how fragile your child is and you are reminded of how much you are trusting the medical staff to do their job well. Thankfully, we have had a great team of medical professionals taking care of Joshua and we have been able to trust them in those moments.

Tomorrow I plan on going to work. It will be really hard knowing I won't be able to step into the middle of those moments and grab Joshua's hand and speak words of encouragement to him. Beyond trusting the medical staff, I will be trusting God to be with Joshua in those moments and to give him strength and peace.

March 28, 2026

The initial report for Joshua was generally positive this morning. He was on 60% oxygen while wearing his mask. He had a quiet night and started the morning on 100% oxygen.

When I first saw Joshua, he was uncomfortable with the mask and the cough assist treatment he was going through. It is one of those necessary difficult experiences for Joshua. The whole process is tough with a machine forcing air into his lungs to make him cough, followed by a tube going into his mouth and throat to finish suctioning what is coming up. When the mask covers his face it rests on a sore spot on his nose. When the suction goes in his mouth and through it hits tender areas. That is what we saw first thing this morning.

Throughout our day with Joshua, he was stable, but very fatigued, which is part of not having all the oxygen going through his body that is necessary. He had enough oxygen in his system, but definitely no excess. By supper time he was settling down with a mask and oxygen coming in through his ventilator. The goal is for Joshua to continue as he is with the hope of being able to lower his dependence on oxygen, something that i shappening much more slowly than I would prefer.

March 27, 2026

Today started well with Joshua. We went into his room and were pleased to see him on 60% oxygen and looking good. He had a good night and his oxygen levels were stable. The plan for the day is to continue to monitor his progress and to continue to reduce the amount of oxygen he is receiving as deemed possible.

While I was in Joshua's room, his pulmonologist showed up. We discussed how things were going and everything was agreed to be going well. The doctor used the term that Joshua had rounded a corner. Joshua's room was deemed the 'happy room' for the day.

Most of Joshua's day was uneventful, which was important since we were going through so much with Natalie. After spending a high stress several hours with Natalie, we made it across the ICU wing over to Joshua, only to arrive when they were at the end of a respiratory treatment and Joshua was struggling to get his oxygen back up. We wanted calm and quiet and we showed up to cautious and purposeful. It wasn't the 'happy room' we were hoping for. Thankfully, they were able to get things back to a reasonable state for Joshua, but it left me feeling rather uncomfortable on the drive home. The good news of the experience is that we had a nurse and respiratory therapist who were very good at working with Joshua and they were diligent in using the cough assist to get the mucus out of his lungs.

March 26, 2026

The morning started with another good report from Joshua's Dr. He had a good night and his oxygen levels were stable. The plan for the day is to begin reducing the amount of oxygen he is receiving and to continue to monitor his progress. He started the morning with a drop to receiving 80% oxygen and has responded well.

Today was hardest on dad. With less insufficient sleep the night before, I was struggling. I wanted to see fast progress, but the day was a day for stability and not progress.

March 25, 2026

We received a call from Joshua's Dr. this morning. He had a good evening and because of the good evening, a decision was made to remove Joshua's tube. When asked when the answer was 'now'. Their desire was to have as much time as possible with the day shift to support Joshua in his transition.

When Sue and I made it into the hospital, it was so nice to greet Joshua and see him without the tube. His oxygen wasn't as high as we would like and the nurse gave us feedback that it has been a bit of a challenging transition for Joshua. The hope is that the continued respiratory therapy with the benefit of the cough assist will help Joshua's lungs clear and allow him to successfully transition to independent breathing. An hour after arriving, I see some better numbers on his oxygen. It is a slow process, but we will embrace all the progress we can get. The best thing was seeing the smile on Joshua's face and knowing we can communicate without the letter board.

The day took a scary turn when Joshua had a mucus plug make it impossible for him to keep his oxygen up. When in the ICU, you want few people in your room. At one point, Joshua's room was full of people trying to help him. They were able to stabilize his oxygen in the low 80's while receiving 100% oxygen through his mask. The respiratory therapist continued giving Joshua his treatments to free up the mucus plug. His oxygen level slowly climbed. When he was climbing from 89-90, the doctor prepared us for re-intubation. We were told if he can't stabilize above 90, for his own good they would intubate him while he was stable to make it a better experience. We were so thankful to start seeing a solid 90, followed by a solid 91, followed by a solid 92. By the time he was steady at 94, I felt comfortable asking his doctor if Joshua bought himself more time. The doctor said that Joshua's progress was encouraging and that they would continue to monitor him closely. We are so thankful for the progress he has made and we are praying for continued improvement.

The rest of the night was event free fro Joshua. He even had some rest from the mask and was able to get his oxygen from the high flow nasal cannula for a couple hours before going to bed.

Our prayer for the day is that the adjustments to Joshua's treatment plan without the chest tube will prove sufficient to allow Joshua to successfully transition towards independent breathing.

March 24, 2026

Joshua remains intubated today. He is currently receiving 50% oxygen with 3 liters of flow and a PEEP of 5.0.

The ventilator is breathing for Joshua. Eventually, he will be shifting to 'supported' mode like Natalie. This future shift will be necessary to assess his readiness to be extubated.

The care team is encouraged by his progress. If his future breathing tests trend positively, the there is a possible attempt to extubate tomorrow.

We continue to pray, wait, and trust the Lord with each step forward.