A Sad Day for Natalie
April 10 - Morning - Joshua and Natalie Update
FYI... there is a reason for the reason for the Artemis 2 picture, but you'll have to read further to get to that...
Yesterday started with a call from Joshua's nurse who then told me the doctor would like to talk with me. Based on the night before, I knew what was coming. I was a bit surprised to hear Dr. Rosenthal, their pulmonologist on the other end of the line. I was both surprised and relieved because I know she knows Joshua.
The news was that Joshua had to be intubated and that the tube would be pulled after he had a trach inserted. Sue and I had already been planning on both of us being in the hospital yesterday so we could be there for Natalie early, as she was adjusting to her trach being inserted. This just changed our approach a bit. For the most part, Sue and I had been staying together when we were visiting Natalie and Joshua. We made the decision to divide and take turns in each room. We would see each other as we passed through the hallways.
When I arrived to Joshua's room, the doctors were doing rounds and they happened to be in front of his room. Dr. Rosenthal took a moment to show me Joshua's most recent X-ray. Looking at the X-ray, it was obvious something was very wrong. One lung was mostly black and one lung was mostly white. I don't know how to read an X-ray, but logic says each lung should look similar. It was explained to me the white I saw in Joshua's left lung was because of all the secretions which were making that lung ineffective. This was the reason he had to be intubated.
The job for Joshua for the day was to prepare him for what was to oome. He has had a trach before, but it is not something we talk about. With surgery coming (not until Monday at 2:00), I had to prepare Joshua for what to expect.
I spoke with Joshua about the surgery. It is a quick and common surgery. He will be taken out of his room with a tube in his lungs that goes through his mouth. He will be brought back to his room with a trach in his throat. The ENT doctor told me the trach will be inserted through the scar he already has and she isn't concerned about healing when he no longer needs the trach and it can be removed.
I told Joshua about how the trach was going to impact his communication. This is where I brought up the Artemis 2. Josh didn't realize the rocket even existed, after all, he has been in the hospital and the world around you can easily get lost. I explained how when the Artemis 2 was on the other side of the moon, the astronauts weren't able to talk with earth. They were quiet. I used that to illustrate that he was currently like the astronauts on the other side of the moon. With the tube in his mouth he couldn't talk. When he comes back from surgery, the way things are with the trach, he will not be able to talk. After he heals from the surgery, they will begin working with him so he can talk with the trach in his neck. Eventually, he will have full use of his voice even with the trach in his neck.
For those who are curious, this is the progression and a layman's understanding of the trach details. If someone knows more than me and can clarify any misstatements, please use the comments. Initially, when the trach is inserted, it will have an inflated cuff which creates a seal. This is what allows the ventilator to help with expanding the lungs. The ventilator can create additional pressure which with the cuff deflated would come out Joshua's mouth, but with the cuff inflated, it will help expand his lungs. Once the healing begins, there will be moments where Joshua is taken off of the ventilator (the hose is disconnected at the trach), and the cuff is deflated, which will allow Joshua to exhale through his mouth. With the air going over his goal chords, Joshua will be able to speak (same is true for Natalie, but she will have more words to say). In time, a different trach will be inserted which will include a valve that can be pushed so that even with the cuff expanded, the valve will allow air to go through the mouth allowing speach.
After hearing that explanation, Joshua used the letter board to spell out 'Dark side of the moon' to indicate his understanding of where the astronauts were when they couldn't communicate back to earth.
The rest of yesterday was spent going between the rooms and helping keep both kids calm and comfortable. At one point Joshua grabbed my hand and I asked him if he wanted me to pray. He nodded. By the end o the day, I could see Joshua was much more calm. I believe he understood what would be happening. He was accepting the repeated statements from his mom and dad that he is safe. He was comfortable in what was a very calm day (after the tube was inserted).
Natalie had her own progression. If you have been following along, you know about Natalie's disappointment with the Mountain Dew. She just wasn't happy for most of the day. I would ask her if she was sad. She would nod. I asked her if she was angry with me. She would not. I would try to hold her hand, she would push it away. She wasn't happy, and she wanted to make sure we understood that she wasn't happy.
We tried to encourage her to be distracted by her normal distractions, music, Little House on the Prairie, HGTV, Youtube, etc. She didn't want any of those. She wanted to sit in a quiet room, looking at the wall and having her mom and dad look back at her. Finally, towards the end of the day, we got a message from Joshua to her about some Disney programming. She was disappointed that she missed a show last night but was looking forward to seeing the next show this evening. I asked her if she wanted to watch the show she missed on her computer. She said yes, and for the first time all day, Natalie had a distraction.
While our desire for both kids was to not have the trach, as the doctor put it when I first saw her in the morning. Up until now the goal was 'heal without a trach'. The new goal now is use the trach to get back to health and then get rid of it as soon as possible. That is our goal and our prayer, that the trach will serve as the tool which speeds Natalie and Joshua's recovery and that it can be removed quickly.