Here We Go Again
I spent the night at the hospital and Joey's nurse discovered that his work of breathing had increased and was concerned about his lungs. She called respiratory and they determined that the upper part of the left lung was on the way to collapse, which is crazy because we had just cleared up that right lung. By mid-morning, another x ray was taken and the left lung was clear, but now the right lung had issues. We worked on the right lung all day by sitting in the bouncer seat in an upright position, staying more elevated with the boppy, and I also held him in my lap in a more upright position. Respiratory therapy came to visit Joey every four hours to perform percussion therapy, where they basically hit certain spots of his lung with a cupped device. It doesn't hurt, but our kids do have brittle bones, so being careful during this therapy should be considered. When I called the nurse around 8, she said his right lung sounded more clear, but now his left lung sounded a little diminished. Boy oh boy, I don't even know what to think about his lung issues!
I think I'm tired of being exhausted and mentally drained. However, I know it could always be worse and there are many people who are walking a walk that is crazier than mine. I should be rejoicing that Joey is still alive and kicking, and I am rejoicing-I'm just physically tired too. Daniel has been a rock star. He has stayed at the hospital almost every night since post surgery. I gave him a break and stayed with Joey while Daniel slept at home. Of course, something crazy always happens when I'm spending the night in Joey's room. The last two times I stayed in Joey's room, his lungs crashed. It's almost kind of traumatizing. I do remind myself that God is with me through this and I need to be brave.
They also weaned him from his milrinex and removed his art line-so he has less needles in his arms and less drugs in his system. I hope his wean goes well. It takes a few hours to see the residual results from a wean, but I think he survived the milrinex wean. They are also taking his methidone down to every 12 hours as a slow wean as well. We have to take the small victories too.
I think he tounged out his OG tube (I think that's the one in his mouth) several times today. The respiratory therapist seemed to think moving one tube from his nose to his mouth would allow for a better seal on his nose with CPAP. We also went to the bipap settings instead of the cpap that they tried to wean yesterday to see if this made a difference in his respiratory crashes.
I hope tomorrow brings a better day and Joey's lungs are clear and stay clear for a while! Even with Joey's struggling lungs, his numbers looked great and he was super cute today. He was still very alert and playful. We put his Christmas outfit on with some new Christmas booties. He also loved his bouncer today and tolerated being held. Again, even the small victories are victories!
I think I'm tired of being exhausted and mentally drained. However, I know it could always be worse and there are many people who are walking a walk that is crazier than mine. I should be rejoicing that Joey is still alive and kicking, and I am rejoicing-I'm just physically tired too. Daniel has been a rock star. He has stayed at the hospital almost every night since post surgery. I gave him a break and stayed with Joey while Daniel slept at home. Of course, something crazy always happens when I'm spending the night in Joey's room. The last two times I stayed in Joey's room, his lungs crashed. It's almost kind of traumatizing. I do remind myself that God is with me through this and I need to be brave.
They also weaned him from his milrinex and removed his art line-so he has less needles in his arms and less drugs in his system. I hope his wean goes well. It takes a few hours to see the residual results from a wean, but I think he survived the milrinex wean. They are also taking his methidone down to every 12 hours as a slow wean as well. We have to take the small victories too.
I think he tounged out his OG tube (I think that's the one in his mouth) several times today. The respiratory therapist seemed to think moving one tube from his nose to his mouth would allow for a better seal on his nose with CPAP. We also went to the bipap settings instead of the cpap that they tried to wean yesterday to see if this made a difference in his respiratory crashes.
I hope tomorrow brings a better day and Joey's lungs are clear and stay clear for a while! Even with Joey's struggling lungs, his numbers looked great and he was super cute today. He was still very alert and playful. We put his Christmas outfit on with some new Christmas booties. He also loved his bouncer today and tolerated being held. Again, even the small victories are victories!
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