Since yesterday, they have done 2 CAT scans, numerous blood tests, and monitoring his heart rate, pressures, kidney level, urine output, and responses to commands. Last night they woke him up every hour to test his brain function with a bright flashlight in his eyes and ole 'watch-my-finger' tests. It is tough to see your kid getting more weak and puffy. Right now he is positive 1500 ml, meaning he has retained a lot of fluid. They said his kidney function is starting to improve, so he should start peeing off some of his fluid with the help of some IV lasix.
So the goals for the day are to get him up, into a chair and on a very small walk (maybe around his bed), get his kidney's to pee off some of this 1500 extra ml of fluid. Take the folie out, take the big IV line out of his neck, and monitor his brain function with more of the flashlight and 'watch-my-finger' tests (I would have tried the 'pull-my-finger' test to get a smile). With a drop in the retained fluid, his heart pressures should drop to levels they would like to see.
Bottom line, it was a very rough afternoon. Seeing your child have seizures with the risk of brain damage, then to see his health decline it a tough thing to watch. Many times last night I had to go for long walks because I just couldn't be in there to watch the doctors and nurses work on Gage. You could see seriousness as the staff was trying to get him to respond. Then there is Stacy, just sitting in there, cool as a cucumber. She is one tough cookie. During on of the CAT scans, Stacy looked at me and started laughing. What is up with that?? I could have used a good stiff drink.
On a lighter note, I got to listen to his heart with a stethoscope. NO JOKE, it sounds like an irrigation pump. His chest is humming. You faintly hear breathing and heart beats but mostly the hum of the electric titanium motor.
That is it for now. Thank you for your prayers, love, concern and support.
He will make it through this... Lindsey did, Sierra did, and so will Gage Aurelius.
Getting him up to wipe him down.
Smiling for the camera. He is trying to open his eyes.
CAT scans from last night
Yesterday morning, before the seizures.
He is ready
Taking the breathing tube out.
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15 comments:
Can't imagine how tough last night must have been. Thank you for keeping us all updated. Gage and you two are much in my thoughts and prayers.
Oh that is not what I was hoping to read. We will keep praying and fasting for all of you.
Oh that is not what I was hoping to read. We will keep praying and fasting for all of you.
Stacy and Jason,
Our thoughts and prays are with all of you always. We think of you constantly and can see the fear, the hope, the love, and the pain in each and every picture. I wish there was a way to reach out and hold you, a way to ease the challenges faced in the hospital, but know all to well that there is not. Your presence with your children always has been and always will be inspiring. It is the greatest gift you can give. Your love surrounds them during their most difficult times and gives them comfort when there is little to be found.
Just remember that those rooms can warp time. Take some walks, get some food, and get a little rest. And believe me, we have had many inappropriate bouts of laughter. There comes a point where I either have to laugh or cry; laughing is less exhausting.
Big hugs all around.
These are very difficult days...but you are doing an incredible job! You mentioned that the VAD is a new language for you. I wanted to let you know that there are amazing LVAD support groups in Facebook. You can ask any question at any time and receive a lot of answers from people that are going through the same issues. Doctors know a lot about the medical side of VADs, but they know less about living with one. These are two excellent pages: LVAD Conversations and LVAD Friends 2.
Although your post a heart breaking you and your family never cease to amaze me with your strength and courage. I like to see occasional jokes as well. Keep your heads up we are all praying for you.
Hi Binghams... I have been reading your blog for the last 2 years. I have a son who at 13 went into
Heart Failure and was put on HeartWare until transplant. It was a hard recovery from the HeartWare
and there were some scary times during the first few weeks after the LVAD surgery. He was on The LVAD for 5 months before
he received a heart. During The 5 months he gained weight, could walk for miles ( he walked 7
Miles 2 days before transplant) and he had a good attitude. The transplant was a much easier recovery
Gage's pictures are all too familiar to me and they bring back some difficult memories
that I am sure you all know well. I am happy to report that my son is 2 years post transplant &
doing great .... I know you are aware of that feeling too and how unbelievable it is !
Love to Gage and his beautiful family.
Also , It's awesome that you keep laughing. Xo
Great comments. Thank you!!
Gage Aurelius, strong, courageous, and loved!! He WILL make it through this!! Prayers continue!!
Thinking of you and praying from AZ
Cheryl
Thinking of you and praying from AZ
Cheryl
Praying hard for little Gage in Illinois!
Praying hard for your little Gage (and the rest of your family). There are simply no words to describe what you're going through, but you sure do a great job of it. Thank you for letting us into your world so that we can think about you and pray for you.
Keeping your strong, courageous little man in our hearts and prayers. (And the rest of your family, as well).
Lord, please bless this amazing family. Prayers for that sweet strong boy to have a speedy return to his energetic self.
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