Wednesday, July 8

The Hardest Things To Think About

As I've said in earlier posts, these last few days have been very hard. Bryce is needing continually more and more lung support and the doctors are running out of options to help him sufficiently oxygenate his lungs. Additionally, his renal function over the last couple of days has been concerning and we simply aren't sure why. It's possible that all of the medications he has to run through his system are just too much and spreading their doses out may help. It's also possible that his poor little body is just getting tired.

The doctor today has expressed his deep concern for Bryce. As much hope as we have for Bryce we have been forced in these last days to consider all possible outcomes for him. This is absolutely the hardest thing we have ever been through and it seems so unjust, so unfair that as much as I fight it anger fills me when I think I might have to live my life without Bryce in it.

Just moments ago the nurse practitioner came in to speak with me about Bryce and his future. The doctors, nurses and nurse practitioners here are wonderful people, better than we could ever have asked for. But they have the awful job of approaching us in all situations, good and bad.

She wanted to talk to me about two things.

The first is the possibility of another, much stronger and longer, dose of steroids. The vent settings are maxed out and the nitric oxide has had little to no effect. He's been given a paralytic medicine over the last two days to paralyze his little body from fighting the ventilator. But this medicine also keeps him from being able to move at all, so we have no idea if he is in pain or uncomfortable or even aware that we are here. His xrays now show haze over both of his lungs and a collapsed right upper lobe in addition to the left, which has never opened back up for more than six hours. The plan is to possibly try putting Bryce back on the traditional ventilator to see if this helps, though there are many risks involved with that. He could develop another pneumothorax, whole in his lung, or need higher pressures than they are able to give with that ventilator. If that doesn't work than the only option left to try to save Bryce is another dose of steroids. Of course, the steroids have their own full set of evils that we've talked about before. Only now the dose would be higher and last longer - and have greater chances of long term developmental effects on Bryce. How are parents to make decisions like these?

Secondly, the nurse practioner wanted to talk to me about a DNR. They feel it's time that we start thinking about what we want thme to do if Bryce "codes, or if his little body tells us he has had enough." Her words. Do we want them to do chest compressions and go to more miraculous lengths to save him or do we let him go? I can't even believe that I have to type this, I can't even believe that we have to think about this! Why can't we just have our little boy be healthy? Why can't we just take him home with us to love him him and care for him and watch him grow into the amazing little person we see when we look into his eyes? We would do anything. I would trade my life for his if I could. I would take all of his pain and illness into my own body with no compaint.

But those are not the cards that we have been dealt. God has given us this and we will do our best with it. We will continue to pray for strength and guidance, to ask for prayers from all of you and to try to find hope in each new day. Today we hope that Bryce will respond to the conventional ventilator better than the doctors expect and won't need us to decide if another round of steroids is the right thing to do.

12 comments :

  1. No matter what happens, now or later, Bryce has been and will be unconditionally loved every hour & day of his life. If his time is short, how very much love he will have received from you & Caleb and all who know him. If his time is long, as we hope, he will continue to receive - and no doubt give back - the same, because it's what he will know. We are with the 3 of you, always and in any way possible, no matter what happens - you have already proven to be the very best of parents. G2 & GF

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  2. Bless your hearts, you shouldn't have to make such decisions. I wish with all my heart that I could take away all of your pain and suffering so that you could enjoy the love and happiness of being with your baby. We pray to god that Bryce will again respond favorably to the conventional ventilator and start to improve immediately. He's a strong little man with a powerful god overseeing him and I'm sure he will once again amaze everyone with his stamina and determination. You and your family are in our thoughts and prayers daily.

    Love,
    Jackie, Dennis, Noah, Jacob and Grandma Pulley

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  3. Trina and Caleb,

    We love all of you and hope and pray for the best. I wish I could take away your pain. Bryce, we think about you every minute and send our love. We are always with you.

    Love,
    Aunt Gene Uncle Lolo Andrea and Timothy

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  4. I've tried to type a comment several times and erased all of them. I was in hopes that I could find the perfect words to say to maybe give you hope and take away your pain. The unfortunate thing is I can't. What I can offer you is a hand to hold, a body to scream at, and shoulder to cry on. I'll even throw in some really bad jokes, if you'd like. What Im trying to say is, I'll be there for you all no matter what happens. I love you all!

    Jen

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  5. Praying, praying, praying. C'mon little Bryce, don't stop fighting!

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  6. Hello kids, I just wanted to send our support and encouragement. Everyone at the Pantry asks each week how Bryce and his parents are doing. You three are in unnumerable prayers and are not alone and I wanted you to know that. Steady on, Mary, Grace Food Pantry

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  7. My heart simply aches for you. I really can't come up with anything to say that doesn't sound trite or cliche.

    My thoughts and prayers are with you and your sweet boy.

    Lisa

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  8. Everyday I pray for you guys. You have been so optimistic and strong. These next couple of months are going to continue to be an uphill battle. You just have to keep being strong. Being a parent faces you with all sorts of obstacles that are not always easy to overcome. All you can do is make decisions that you feel are the best for Bryce. We love you guys. I will continue to pray for you and all of your family.

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  9. Never give up, the little ones are stronger than you can ever imagine. He will grow up to be the little boy of your dreams.

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  10. Still praying for for little Bryce.

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  11. I will continue to pray my hardest for him as I have done every night. I know its hard to hear "options", just try to focus on the good ones. He has definitely come a long way. Please try to stay strong, confide in one another and allow others to help you. Doctors like to describe this type of situation as a rollercoaster, when it is more like a violent off-road ride! None the less, I will continue to keep the faith for your family and especially for little Bryce. Take care, and please don't lose faith just yet. You and your family have come way too far. God Bless.

    Imani A.

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  12. Please Bryce, don't give in. Your mommy and daddy need you more than you know. You are so very loved. I know you are tired, sweet baby Bryce. Always thinking of you and your family.

    Love, The Manettas Family

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