HOLDING ON TO HOPE

First of all, THANK YOU, everyone for visiting with us, bringing us food and chocolate, mowing our lawn, opening your homes for Sarah, checking in with us at all hours of the day. As challenging as this last week has been for all four of us, we always feel your love and support.

After one week, Jacob's edema is better but not back to baseline. He's still receiving lasix every day to help get the fluids off his body. The fluids in his lungs still make it challenging for him to breathe. He passed his high flow nasal cannula trials yesterday, which is a good thing. He still has oxygen desaturations with repositions and deep suctioning.

Jacob also got moved out of the ICU yesterday, and he is now on the 9th floor. That always feels like a good step in the right direction.

The biggest thing is that Jacob is so very sleepy. He is awake for short periods of time during the day. The big worry being that Jacob's overall disease has progressed. On Friday, we decided to schedule a brain MRI for Monday and give him the weekend to improve. I was not very hopeful, and thoughts of this being the end for Jacob was on my mind constantly. It eats the inside of my body and soul.

Out of the blue, we got some hope yesterday morning. Jacob is on a seizure medication that can make you very sleepy. The level of this medication is extremely high in his blood right now, and this in itself can explain his sleepiness. This morning, the level of this medication is even higher than yesterday. You and I would not be breathing on our own, if we had this level in our blood. Jacob being Jacob is sleepy, but is hanging on with the support of his bipap and his high flow nasal cannula.

With the news of his elevated medication, we are holding off on the brain MRI tomorrow. We want to see how Jacob looks when this medication has stabilized in his blood. Our hope and prayers are that he will then start to look his normal Jacob again. We're holding on to hope.

Jacob did this exact thing a few years back. We never got an explanation on why this medication suddenly was so high in his blood to the point of sedating Jacob. The one theory we got from his metabolic doctor is that his liver was busy metabolizing other things, and therefore was holding on to this medication rather than metabolizing it correctly.

I don't think Jacob is out of the woods just yet, but we will continue to fight side by side with Jacob until he tells us otherwise. He is currently watching his Minions movie for the hundreds time on nasal cannula, and we can only hope that Jacob will start to feel better.

We're all exhausted from this being a very challenging stay for Jacob with questions being asked that we were hoping we wouldn't have to face for our boy just now. On this beautiful Sunday morning, I am still holding on to hope.

Much love,
Maria.