We’ve learned that it is a common thing for families in the burn center to count the days. At first, the days all seemed to run together and if it weren’t for the fact that life goes on and we have another child at home in school, I think we would truly lose track. Today is day 11 for us, and after the better part of two weeks, the stress has begun taking its toll. I never thought it was possible to be so tired while at the same time being unable to sleep. And even after we do sleep, the fatigue is still there — a type of fatigue that is indescribable.
For days now we have been praying that P.J. would wake up from his coma. I’ve heard of families going through this sort of thing, but had never really understood all they were experiencing. Did you know that sometimes insurance will refuse to pay for surgeries and treatments for patients who are considered brain dead? So then the next of kin has to make the decision as to whether or not it is “worth” paying for additional surgeries and procedures that the patient needs. Some of the surgeries that P.J. is facing still are ones that are critical to his survival. It sounds ludicrous to expect someone to make a decision as to whether their child’s life is worth any amount of money. For us, this was not even open to discussion.
The drive from Braithwaite to Baton Rouge takes a little over two hours if we avoid traffic. We’ve made this trip many times over the last couple of weeks and usually we talk the whole way. This morning, our car was like a tomb. My husband was quiet. I was quiet. Neither one of us said anything for the first half hour and then I finally admitted to A.J.: “I am so sad.” Other than the obvious, I didn’t know why it was hitting me so hard at the moment. I couldn’t explain it, but he understood. He seemed to feel the same way, although he reminded me that we had to stay positive. I called the hospital at that point and P.J.’s nurse, Shannon, said “Ms. Tina, he’s awake!” My immediate reaction was disbelief. I asked her “What do you mean by that?” We’d seen him with his eyes open, but there was no recognition, little response, etc. She said “He’s awake. He’s nodding his head, blinking his eyes, and responding to other commands.” She went on to tell us that she had to restrain and sedate him due to his anxiety and agitation. We understand that this is typical of people who have been in a coma. They are confused and disoriented when they wake up, not knowing where they are or how long they’ve been there, feeling pain and having many tubes connected to them.
When we arrived at the hospital for the first visit, P.J. was sleeping and then got a little overly anxious when he heard our voices, but we quickly softened our tones and calmed him down. We left a short time later (we’re only allowed 20 minutes at a time), and went to church. We were so overjoyed to be able to report to everyone at St. Paul Lutheran here in Baton Rouge that their prayers and the prayers of countless others, are being answered and that P.J. was awake. This afternoon, we returned for the 1:00 visit and our joy quickly turned to sadness as the sedation was wearing off and we were seeing the signs of anxiety, confusion, and excruciating pain on his face. It is agonizing for us. When I shared the experience with Danielle, P.J.’s older sister, she said it made her think of God, the Father, watching the crucifixion of his only Son. We’ve had many struggles over the years, and some have suggested that it was to strengthen us for this difficult journey. As I mentioned in my previous post, we believe God has been speaking to P.J. during his sleep, and I am comforted today by the feeling that God is still talking to and strengthening him, and maybe using us to help with that.
God’s word has always been a source of great comfort for us, but never so much as it has over these past 11 days. We’ve read scriptures to P.J. during many of our visits and repeated over and over again that God is faithful and true, and his mercy endures forever. We needed to hear these things as much as we needed to say them to him. As we continue this most difficult journey of our lifetime, we are trusting in Psalm 30, and are continually reminding ourselves that “His joy will come in the morning.”
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