We took Joel to Children’s Hospital today, and it was so good just to be able to ask all our questions and get solid, directional answers. Not knowing what the declines we were seeing in Joel meant or how to handle them was becoming pretty stressful. Our wonderful nurse who we have known for over four years now, asked us about our time in San Francisco, and how Joel was doing, and then she told us that to her it was pretty obvious that Joel was really uncomfortable. She watched the way he hit his head with his hand and how he moaned and fidgeted, and told us she thought he really needed to be on continuous iv pain medication. Honestly this is a pretty big jump for us, it skips oral morphine and other oral pain medications altogether. She said that for the first 12-24 hours the iv pain meds, which are both sedatives, might make him groggy but that after that he should perk up and be more himself.
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She told us we could take out the ng tube and not give Joel any more feeds through the tube. She said that usually when people stop swallowing it is to protect them from food their bodies can no longer tolerate. She said if he seems to want something we can give it to him and if he drools it out or coughs it up that’s fine. She said we could come off the steroids over the next few days, because at most the steroids would give Joel two or three extra days, but that they are toxic, painful and cause aggravation so the extra days aren’t worth it when he could be more comfortable instead.
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She told us we could take him off the oxygen, and stop monitoring his heart rate and oxygen saturation levels but just watch him and give him oxygen for comfort, or if he seems to need it, but that it’s ok for him to be breathing less.
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We pulled out the ng tube and we agreed to the iv meds, but we stopped short of taking him off the oxygen. It was just a tough leap for us. We want Joel to be as comfortable as possible, and it’s hard to imagine that he doesn’t need the oxygen. We took him off for a few minutes and walked him around the room, but his lips turned blue pretty quickly, so we put him right back on.
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We aren’t sure about the ng tube either, even though we pulled it. We are fine with not giving him feeds anymore, but we are worried about him staying hydrated. Hospice told us they don’t usually do iv fluids, and we don’t think Joel will be able to drink enough fluids to stay hydrated on his own. Our goal isn’t to try to keep him from dying, we know that, in the end, only God can give Joel the kind of life we would want him to have, but at the same time we worry about accelerating anything by letting Joel become dehydrated.
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We asked our nurse how long she thought Joel had left, based on what she had seen and we had described, and she told us a week. We are not surprised. His decline has felt pretty rapid to us in this last week. We have talked to the children more about why we want to help Joel be as comfortable as possible, and that we know we can’t do anything now that would bring back the Joel we have enjoyed so much for the past five years, but that God could not only restore Joel to what he was, but also give him the life he has never had yet, a life that would let him run and play with his brothers, talking to them and learning to read like other 5-year-olds. We told them they can ask us any questions they have at all, even though we may not know the answers to some of them, we will always tell them the truth. They cried a little, asked a few questions, and tonight they roller-bladed and razor-scootered through the house in costumes, pulling along an inflatable t-rex. They are taking things in stride, probably better than we are.
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I wrote everything up to this point a couple hours ago, and then waited to make a few phone calls to family. In the meantime, Isaac brought Joel some water and thought he might want it. Sure enough, Joel seemed really interested. I made Isaac get him a very small cup and fill it with very little water. After Isaac left I let Joel have some and he took a few minutes but eventually drank it with interest. When he finished drinking he began gasping and choking and coughing and gurgling and it was truly terrible. I called Ryan down and we held him together and prayed that he would stop choking and be able to breathe. Eventually the choking stopped and Joel fell asleep. All of this to say, we definitely will not give Joel any more water, even if he seems to want it. As he was recovering from his choking fit Ryan and I talked more about whether or not we would give him IV fluids, and we did not come to an agreement. We will talk with our hospice nurse about it more, and hopefully come to a conclusion together.
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We know that nothing we give Joel now can bring to us the life he had, but that God can, with a word, give Joel a life he has never yet experienced. Right now, things can not go back to being ok anymore, but there is a possibility still, nearer than it has ever been, that things can be unbelievably amazing. For at least three years now I have suspected that if God was going to give us the giant, crazy miracle that I have longed for, it would be right at the very end, on Joel’s death bed. Since I have felt this way for so long, the things I see now do not make me any less hopeful than I have ever been that Joel will be healed. These hard things we are facing are not accompanied by despair. They are sad, but not horrifying, and that already feels pretty miraculous. We can’t lose more than we are losing already, but we stand to gain a great deal, in a very short amount of time, if God moves on Joel’s behalf now.

Comments

There are 15 comments for this post.

  1. Jim Rutherford on March 12, 2014 1:08 am

    BELIEVING!

  2. Kelly on March 12, 2014 6:08 am

    Praying for your sweet boy….

  3. Beth on March 12, 2014 10:00 am

    I have been a silent reader for a month or so now but I wanted you to know that your family is the first thing I think about in the morning & the last thing I think about before I go to bed. I’ve never been one to pray but please know that your family is being loved here in Ohio.

  4. Tara on March 12, 2014 11:20 am

    Standing with you in belief and prayer today!

  5. Carol Smith on March 12, 2014 12:57 pm

    I will keep praying for Joel and your whole family.

  6. Ann on March 12, 2014 1:10 pm

    My prayers are with you all.

  7. Kristina on March 12, 2014 2:33 pm

    Sending you all so much love

  8. Chris Skaggs on March 12, 2014 5:54 pm

    Praying with you all.

  9. kim on March 12, 2014 7:35 pm

    You have more faith than I could ever have, I am truly blessed to get to know Joel from all of this. He has touched so many hearts and sooo many lives!

  10. Dee Brady on March 12, 2014 11:56 pm

    I continue to pray for all of you and most especially for Joel’s miraculous healing.

  11. K on March 13, 2014 12:11 am

    My thoughts and prayers are with your family at this tender time. I care for my grandmother at the end of her life, which, though sad, was normal after living a long time. I know that watching your son slip away from you is a lot different. It’s so hard to hard to know what to do. With my heart in my hand, may I gently suggest an idea if your son should seem interested in drinking something? Perhaps soaking a cloth, sponge or piece of gauze in water or juice for him to moisten his mouth with would be enough for him? Be prepared for your son to be inconsistent and just do what you’re doing, follow what feels right at the time.

  12. NM on March 13, 2014 1:10 am

    Amy, I’m not a christian, I’m a muslim but I check your blog almost everyday and have probably watched the soulpancake video of Joel 30x + times. I’ve been really touched by you and Ryan’s strong faith and belief in God and Jesus. I’m praying for Joel to be healed and also for you guys to remain strong whichever way God’s decree is … He’s the master planner and throughout these years all this test has done is bring you guys all closer to Him which is the most valuable thing in life. God tests the people He loves the most, with the hardest of test, and I’m seeing both of shine … God bless <3

  13. John on March 13, 2014 3:43 am

    I have followed Joel and your family’s story for some time now, usually with a tear in my eye at what you are are all going through and the strength and love you display in coping with the situation. Whilst I identify as an atheist I sincerely hope I am wrong on that one, and that your faith brings Joel and your family through this. My thoughts, and (something I’ve not done for a long time) my prayers are with you.

  14. Keith Mitchell on March 13, 2014 6:52 pm

    As a father of two I can’t imagine the pain and grief that the Green family must be in. You’ll be in my heart and prayers and even though I’ve never met you I feel your pain and started to cry after finding out what happened to Joel.

    Stay strong!

  15. Kermit Smith on March 13, 2014 9:00 pm

    Thank you so much for sharing this journey. I first learned about Joel in the Kotaku article about the video game. It is a story that still brings tears to my eyes. It is a story that awakens a deep appreciation for all the blessings I have in my life. Thank you. There is a quote I read once by a man who was facing a similar situation that comforts me. I don’t know the exact origin. “I have loved the stars for too long to ever fear the night”. Joel is shining down on us all now, and I feel the night is that much less dark and scary. God bless you.

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