Thursday, May 26, 2016


Jacob was hit hard last week with pneumonia, an ileus, and an elbow joint effusion (which they first thought was a fracture). He didn't look well. He was in pain. I knew Jacob was close to the edge of what his body can tolerate. 

And then the edema came. It came with the IV fluids we gave him Thursday thru Friday for his ileus. Jacob's body couldn't absorb the fluids properly, and instead the fluids started to leak out in his body. This was partly due to Jacob's albumin being extremely low. For Jacob, it caused major swelling. Not just visible swelling, but also fluids in his lungs and other places. Sunday afternoon, it was time to pack the bags and take Jacob to the ER. They diagnosed Jacob with sepsis, and the big gun IV antibiotics were once again on board. Labs and other tests were ordered. I knew that PICU was the only safe place for Jacob this time, so we were all on board to admit him.

We're tonight on our 5th day in the PICU. His edema has improved, but today the x-ray is showing more fluids in his lungs. This would explain the random oxygen desaturations he has had on both nasal cannula and bipap in the last days. Everyone was concerned about his elbow joint effusion, and was wondering if his elbow joint was septic. Tests and x-rays actually show that the swelling in the elbow is gone. His tibia bone is also nicely healing. No fractures and no septic joint are all good news, but why is Jacob still so sleepy? He has also been running a low temperature.

We're all worried. Jacob's medical team is scratching their heads, wondering if they are missing something. Dr. E. is coming by every day to check on our boy. We will give Jacob time to get his extra fluids off, and see if that will make him look better. In the back of our minds, we're all worried that Jacob's disease has progressed. We know it can happen any time. Mito never takes a break. We know that if we can't find any answers in the coming days, we will have to look at his brain. To see if something has changed. I dread it so much. I dread it because of what we went through last summer. It gave me so much grief. I know it will not come with any easy decisions. At the same time, we want to know what's going on with Jacob. We owe that to Jacob.

In the middle of a very difficult hospital stay, Sarah graduated from middle school. I can't believe we have a High Schooler in the fall! I hate that this is all happening as Sarah is just about to start her summer adventures she has so been looking forward to. 

We appreciate all the support and love for our boy so very much.

Love, Maria.

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