Yesterday was a hard day. Sleep the night before was difficult for Jody, then the morning brought some outside distractions and it just went downhill from there. It seemed there was never a break from the constant flow of people in and out of the room. Pulmonary doctors, pain doctors, infectious disease doctors, nurse practitioners, nurses, nurses aides, respiratory therapy, physical therapy, social work, transplant coordinator, housekeeping, and more. Many of the people even came for multiple visits, and sometimes they were here all at once, fighting for Jody’s attention. After so many hospitalizations through the years, we’ve become pretty accustomed to this, but yesterday seemed excessive. I could tell early on that Jody was exhausted and just needed a break. He felt completely wiped out, attributing it to the fact that he had not had anything to eat or drink since Sunday (five days prior). He was looking forward to his repeat swallowing study and the food which would (hopefully) come after.
They took Jody down for his repeat swallowing study in the afternoon. I wish you could see how he needs to be transported because of all the equipment attached to him that must to go along. I felt certain that he would come back able to eat, even if it were only thick substances, like applesauce. I was wrong. Apparently when Jody got there, they moved him and all this tubes and equipment from his bed to a chair for him to sit for the test. After the first attempt swallowing the liquid given to him, the speech pathologist, loudly, and almost rudely, declared, “No,” indicating it had been an instant failure. She then said that he needed to stand for this test. Because of the way he was feeling, it was difficult for him to do that. He soon became light-headed and had to be laid down on the table. After being told so unsympathetically that he had failed, and feeling such pain and exhaustion for so long, defeat took over and he had a breakdown. I wasn’t there but was told he kept asking for me (how I wish I could have been there for him). He came back to the room even more exhausted if that was even possible. Shortly after that he needed to use the restroom and in there all but passed out. When he stood up his eyes glazed over and he wasn’t responding to me. I threw him back on the toilet, pants on, and hit the emergency bell, to which the entire floor staff responded immediately. Back in bed, he was told he wasn’t allowed to get up anymore. I should also mention that they have been weaning him off of the medication he was on to keep his blood pressure up. I think the activity of the day, combined with the decreasing blood pressure medicine, and Jody’s sheer exhaustion just got the best of him. He really needed a break from all the activity and just to be left alone so he could rest. It’s super important for him to walk and do breathing exercises to expand his new lungs but he just couldn’t on this day.
By now you should know that Jody is a man of faith and without meaning to sound too crazy, and without going into detail it was clear that in addition to his physical body, Jody’s spirit was being attacked yesterday as well. It was very real. We proclaimed truth over him and cited verses from the Bible of deliverance and protection. We know people were praying and God heard our prayers and brought Jody peace. Please remember to pray not just for Jody’s physical body but for his spirit was well.
Finally, after about 30-45 minutes of rest yesterday afternoon Jody was told the difficult news, he was going to need to have a feeding tube surgically inserted for long-term nutrition. You probably remember me talking about how Jody’s vagus nerve was cut, purposefully, for the transplant. This means that Jody no longer feels the need to cough and wouldn’t know if he aspirated food or drink into his new lungs. Think about a time when you drank something and it “Went down the wrong pipe,” as we say, and you began to cough. Jody would not know if this happened and food or drink in his lungs could lead to an infection. His swallowing muscles are weak and need time and therapy to strengthen them. Until then, he will need to use a feeding tube. This could mean no food or drink for months!!! We’re pretty devastated about this, but understand that in the scheme of life, this is nothing but a small bump in the road. I know that friends are planning to set up a meal schedule for us after discharge and we were (are) really looking forward to this. This is going to be so very helpful for us, me in particular, but now I wonder the impact it will have on Jody. It’s one thing for him to walk away and not see us eating, but what about the smells of deliciousness that will fill our home? Will the cups of water our girls carry around bother him? He is already thinking about the implications of this on the upcoming holiday season. We hope that if Jody gives it his all through speech therapy, and works hard at exercises to strengthen those muscles he’ll be back to eating in a matter of weeks instead of months. When that happens the feeding tube will be able to be removed, leaving just one small scar as a reminder of its existence. Because Jody won’t be getting the feeding tube until Monday, they started him on PPN (Peripheral Parenteral Nutrition) in the meantime. This is basically all the nutrition he needs mixed together in one bag and administered intravenously. While he doesn’t get the taste of a pizza, tacos, or an Italian sub like he might like, Jody’s now getting the nutrition his body has been craving over the last five days. I hope this will help his strength to return so he can get back on the road to recovery.
Many of you probably saw the post I made last night on our Jody Needs Lungs Facebook page asking for prayers for a restful night of sleep for Jody. I can’t even begin to describe to you how completely and totally exhausted he was physically, emotionally, and spiritually. Thank you to each and every one of you who took that post seriously and sent petitions to God that he would rest well. He did! We both did! And he’s been sleeping a lot this morning too since it’s a weekend and the interruptions are minimal. At some point he really does need to get moving again, but he’s still dealing with lower blood pressure and dizziness, which are hindering that. Pray that this improves as well. He also still has the two painful chest tubes which are draining too much fluid to be removed yet.
Since Jody is still having issues with his vision he hasn’t been able to read all the wonderful comments you left for him on my blog. I was hoping to let him read them by himself when he’s ready to because I know they will evoke lots of emotion. I think he needs some encouragement so I will probably start sitting beside him and reading through them aloud. Since yesterday was so hard for him, and I think he wanted to give up, I ask that you would keep leaving comments that will uplift, encourage, and push him through this. He truly is my hero, and even though it’s not the life I would have dreamt for us, it is an honor to walk this journey with him.