I really had not begun to worry that my DD would have this sort of trouble, because obviously to reach age 9 before dx it must be mild....
I wish I had the wisdom to help you cope with all you are facing right now. I am glad you have a good doctor you can trust, who will be honest with you. I am sure she will help you to make the decisions you must make, as you come up against them. I am so sorry - this is such a Sophie's choice you are facing, how hard to push to keep him alive, when to say "enough".... I hope you find the clarity and strength you need as this progresses.
I will continue to pray for you, your DH, and James and your boys.
~*The days are long, but the years are short.*~
Last night dh had a long talk with the same kind ICU doctor who told me the "truth" about success of CPR on kids. He's cared for our children before while they've been in the ICU, and we like him a lot. He's a dad of young children, too.
He said he thinks that James has a 60 to 75% chance of recovering fully. To be honest, that's bigger than I was afraid of but still so terrifyingly low. He also said, and this one hit home, that if James was his child and he coded again...he would not step in with CPR. Today, three months from now, three years from now. The odds of damage are too great, and he feels the heart stopping is a peaceful way to pass.
Dh and I talked even more last night, and we agree. For both of our boys, James and Ian, we've decided that there will be no more bringing them back from "the brink." No more CPR. No more oxygen after minutes of being blue. That doesn't mean that we won't call paramedics when they have seizures...we will do everything in our power to keep them from being at the brink (emergency meds, calling 911, oxygen, getting to the hospital). BUT, the next time they're in need of CPR we will ask them to stop medical care.
This may never happen, of course. James could go years or even decades without another heart-stopping event like this. And in the meantime there will surely be seizures that require hospitalization. We just don't want to deny him a peaceful way to pass, while at the same time risking his quality of life to such a high degree.
This feels right. This feels like we're thinking of James and his needs, as well as his future needs and challenges. Of course it's heartbreaking, thinking about not saving him, but with or without this choice I know that someday we'll have to say goodbye to him. I'm not afraid, just sad.
I think I got to this place, this way of thinking, a little earlier than dh did. I can't say how relieved I am that we're in the same place now. Talking to that ICU doc helped my husband feel comfortable enough to make the choice. And now, with dh feeling the same and the ICU doctor saying it's the choice he'd make in our shoes, I feel much more at peace with my feelings.
And from just now...
No good news to report. In fact, just before I left the hospital this evening we got some really bad news. The EEG shows "slow" brain activity, and the movements he's been making repeatedly during the day aren't good. They're both signs of brain injury. That's especially upsetting in the case of James, because his severe TCS means that there are many areas of his brain that are non-functional, and he's already had two large pieces removed in brain surgeries. A brain injury that would be minor in another kid could be major for James.
Our neuro says to not give up hope. In 24 hours almost all the sedating drugs will be entirely out of his system, so if 24 hours from now he wakes up more we should feel better. She said that if he does return to his baseline, it will be months of work while his brain heals.
The uncertainty and the waiting are driving us mad. She's understanding of that, so she's ordered an MRI for tomorrow. It will show the level of brain injury (hopefully). She said if it looks bad, there are things she can do to help James go peacefully and not suffer.
To be honest, I'm more terrified of being stuck in the "grey" area between great and bad. In that area, it's not so easy to choose as parents what your child's outcome will be.
Poor Ian (his twin brother). Tonight he saw me come home in tears, and he's been crying. He can't know what's really going on, but I'm sure he senses how wrong this all is. I'm sure he's sad sleeping alone in their room at night.
I'll tell you one thing...my deepest regrets right now are the moments I was ever impatient with James...when I cursed under my breath, or tugged on him to get moving, or got frustrated and set him down roughly or hastily. I'm sad that in the weeks and months where I felt overwhelmed as a mom, I didn't pay much attention to him or just wanted him to be as peaceful as possible so I could do other things. I see now that I wasted a lot of my time with him, a lot more than I feel I can explain away as being "okay" or "normal" in our circumstances. I know he has had a happy, loving, love-filled life. I know I loved him and that he knew I loved him. I'm just so sad that for the past year or so I've felt more distant toward him and not as willing to put my all in. I loved him up, certainly, but I didn't click with him the way I used to. We were just getting back into that when all of this happened. We had all been getting more sleep, and behaviors were less obnoxious, and we had been going back to the little face games at feeding time (rubbing noses and stuff), but I could tell he wasn't as used to it as he once was. I could tell he'd gotten used to me not fussing over him in every little way. That makes me very sad.
We'll know more tomorrow, with the MRI. Please pray for either stellar results or a clear reason to let James go. I don't want James to be trapped in between. Of course, put extra energy toward hoping for stellar results. The thought of having our James back, though now it's starting to look unlikely, makes my heart feel tight. It's all I want.
Tricia, married to DH. 2MC's & 4 yrs ttc...finally mom to Andrew6/06 and Benjamin 10/09. Adopted bro & sis 2002. My 2 fav. words: Spay and Neuter! I'm an Ultimate Viewer, 2010!
I wish there were words that would tell you how deeply we care, words that could wash over you and give you some comfort. Know that you and your family are continually in our thoughts and prayers, and that you have reminded us that the moments are precious.
Rachelle, mommy to 8 year old boys!
My Blog-free homeschooling finds and my lesson plans and link to the new User Agreement
I think anyone of us who reads the words you wrote about staying in the moment with James will make us all appreciate the moments we do share with our own children. We never know when our everyday lives will be turned upside down by illness or someone's passing. Each moment we have with each other in this lifetime is a gift, and you have been no different than any one of the other mommas on this website. We all are imperfect. We all go to sleep at night wishing we could have done something different...better. We all wish to be the 'perfect mommie', but this is not possible. We can only hope to do better tomorrow.
I pray for peace for you tonight, and for strength as you go through tomorrow.
Blessings, -Toni : : :
Take care of yourself, too, while you take care of sweet James. He’s got some mighty amazing people looking out for him.
We've already had a dnr drawn up for Lily. Doesn't mean we have to use it, but at least it's there to stop the dr's if we just can't do that to her.
Visit Lily's site at www.caringbridge.org/visit/lilymathis1