He looks good in Monkeys

Sweet Isaac has been sedated with a number of medications to try and give him a break from the constant screaming (It helps to leave the nurses alone with him--suddenly they get orders for meds that might help...hmmmm..) After his EEG and abdominal ultrasound we gave him a bath while he screamed (normally he loves bathtime.) We tucked him bed with his new flannel monkey blanket and his darling little monkey pillow that my aunt made for him.
And when Brennan walked in the room today to visit along with Jordan and Mark, he said "Ahhh...he looks so good in Monkeys." I think I love that line. It is so sweet how the other kids accept Isaac just as he is. Isaac had no clothes on...just a diaper because he works himself into such a sweat when he cries. But, that didn't matter. He looks good in Monkeys.
Today was a bit of a relief but we have a ways to go until we can leave the hospital with a home plan. We still need to have consultation with infectious disease, Pulmonology and Palliative care. I found some research on the internet that describes the issues with Isaac exactly. It described severely neurologically involved children who have extreme pain reactions to gastric activity (gas, bowel movements, feedings in general.)It is like Isaac is having extreme sensory dysfunction inside of his body. While so many of our kids can't handle sounds, lights, and overstimulation--Isaac's internal mechanisms cause him extreme sensory dysfunction. There is a medication that is used to help with this and it should decrease the wretching and vomiting during feeding. The med is neurontin and has been successful in many kids. I will be talking with palliative care tomorrow.
When Isaac is screaming, he oxygen levels drop dangerously low. We are using blow by oxygen to help and hoping to go home with oxygen for him as well.
But for now, he really looks good in Monkeys!

God is in control

If I don't believe this what faith do I have? God loudly proclaimed himself this morning as I arrived back at the hospital. Isaac did not sleep at all overnight--he screamed all night. As sad as that is, the fact that I was not at the hospital for 6 of those hours has helped the doctors to see how intense the issues are for Isaac. They ordered more tests and brought the neurologist in this morning. By 8:30, they added valium along with the ativan to see if that would help.
My prayer was to see Isaac's beautiful eyes and maybe a glimpse of a smile. It had been days since I felt his connection to the world. And by 9am, I was able to spend 1/2 hour of one on one connected time with my sweet boy. What a gift. Straight from God. Priceless.
The rest of the morning has been filled with end of life directives and other sobering discussions. But, I am not afraid because God continues to give me what I need exactly when I need it. I could hold my baby today and see the life in his eyes. That changes everything for me and I can face the next challenge that will head our way. The palliative care team will most likely take over and they will help us manage his pain and neurogenic irritability. He has an EEG scheduled this afternoon and we are waiting for more tests to come back. The course of treatment is to rule out any other possible source of pain. And if nothing is found, then the plan will be to help him live in this world without having his brain overreact to stimuli.
God is so good...all of the time.
Thanks for praying...they have given him Morphine to see if that will help a bit. I can not tell you how much we all feel your prayers. Last evening I felt such desperation. And this morning, I feel hope everywhere around me.

Prayer desperately needed

There are some things in life that seem unimaginable to bear. I have been through many of the things that used to be on my list...like the loss of a child. I have lived through that and learned that there is nothing that can seperate us from the love of God. These past days, I am living through what would most likely be toward the top my list of the excruciating. I am watching a baby scream in pain with no relief in sight..being tortured by his own body. Isaac is inconsolable except for the times that he is so exhausted and falls asleep. And when he wakes, the arching and screaming begins. His is at Minneapolis Children's Hospital and the doctors have run many tests and are waiting for the results of some of them. With each test that comes back with normal results, we always find ourselves back to the original suspicion...that what Isaac is experiencing is Neurological. And I am feeling like that just is a code word for that there is nothing much than can do about it.
The neurologist did not come to see him today. He is coming tomorrow. I have so many questions...and many of the questions I don't really want answers to because I am afraid to here what may lie ahead of Isaac and for us. Please pray for Isaac, for the doctors and for healing for Isaac.
Fear, Doubt and desperation have hit me hard today. I have been with him at the hospital until midnight when I could no longer listen to him scream. I had to leave so that I could catch my breath. I am so scared for the future. I am so filled with doubt that maybe we shouldn't have brought him to Minnesota--maybe the move was too much on him. I have felt anger at God or at myself...how could our kids potentially have to lose another sibling? Why didn't I protect them? How could God allow this precious child to suffer? Have we done something to make his struggles worse? I can walk away from the screaming for a minute but poor Isaac must endure it with out a chance to walk away..I am so desperate for answers, or medications, or a cure for what is torturing him right now. I am so scared...
And yet, when I walked out of that hospital room and into my car, I was flooded with praise music from a radio station I had just discovered on the way to the hospital with Isaac yesterday. Just like waves that roll over each other, the songs of praise continued to engulf me with scripture and lessons of faith that I needed just at this time. The first song made me angry at first because I wanted to feel sorry for myself..I wanted to wallow in the feelings of betrayal I felt from God. But, with each successive song, I knew that God was yet again speaking to me through his Word set to music...He was here right beside me, He is holding Isaac close to him, and His ways are so much greater than ours...He knows what He is doing.
Please pray for Isaac...please pray for us...