The nurses at UCSF were able to completely wean him off of the nitric oxide, when he was at 7ppm yesterday and 15ppm the day before that. This was great news for us. The problem was that there were 2-3 times during the day when Roscoe woke from sleep and could not focus his eyes (they darted back and forth) and was very difficult to console. At first the doctors thought it was withdrawls from the painkiller or sedative (they had tried weaning those by 10% too), so they put the painkiller and sedative back up to the full amount. At one point his heart rate reached the 190's, which it hasn't done in a while. The common response from UCSF when Roscoe's heart rate raised was to give him more painkillers or sedatives, which Alisha and I protested.
A good picture of how we felt today is this:
The picture above is a photo I took of something I stepped on when I stood by his bed today. Rather than it being a gum wrapper or hair clip like you might expect to step on, this is an old IV that was in Roscoe's arm with Roscoe's blood spattered around it on the floor. Not a very comforting sight to see, and today wasn't a very comforting day. While UCSF may have a greater amount of technical expertise, small "oversights" like this are one of the reasons we strongly prefer the treatment at Kaiser.
As I walked around outside to clear my head during a break, Psalm 23 came to mind:
The Lord is my shepherd,
I shall not want.
He makes me lie down in green pastures;
He leads me beside quiet waters.
He restores my soul;
He guides me in the paths of righteousness
For His name’s sake.
Even though I walk through the valley of the shadow of death,
I fear no evil, for You are with me;
Your rod and Your staff, they comfort me.
You prepare a table before me in the presence of my enemies;
You have anointed my head with oil;
My cup overflows.
Surely goodness and lovingkindness will follow me all the days of my life,
And I will dwell in the house of the Lord forever.
"All Scripture is inspired by God and profitable for teaching, for reproof, for correction, for training in righteousness; so that the man of God may be adequate, equipped for every good work".
- 2 Timothy 3:16-17
- 2 Timothy 3:16-17
Our hearts break with you all, going through these ups and downs.
ReplyDeleteWe will all pray overtime today and every day and plead with our magnificent God in heaven for total healing for precious Roscoe!
Roscoe is such a treasure and he is so blessed to have you and Alisha as his daddy and mommy.
We will pray for blessings for you two, also.
I wish there were more we all could do for you all.
Love, Mom
We also felt some of the same when Kelli was so sick and came so close several times...won't.say more here but her Jewish Doctor at UCD said...some day you will look back and this will seem like a dream. We all feel like we are there with you through the blog and I can imagine our Lord nearer than us saying...try not to doubt. Hang in there! We are praying and fasting often in petition for Roscoe. Germ free virtual hugs from the sidelines from the Mcguffin's ;)
ReplyDeleteAllow God's Word to guide you and Alisha and give you all strength during these challenging times. Last Monday, I whispered in Roscoe's ear to get better and stay strong; he has been such a strong little man and has won my heart. We cannot do anything on our own, so I will continue to pray that our Lord sends his healing powers to little Roscoe, courage and strength to you and Alisha.
ReplyDelete