September 20-27, 2014
I spent the week with Steven at the NIH. The week started with a case of diarrhea that nearly put my sweet son back into the ICU. He had frequent episodes of passing out on Sunday. The thoughts on Sunday and Monday were that these episodes were subsequent to the diarrhea and the lack of hydration. Liquid was given through the IVs, and it seemed to help at first.
Steven's blood sugar on Monday night dipped dangerously low into the 30s. That too was treated with some sort of IV therapy.
On Tuesday morning the amazing neurosurgical assistant came to Steven's room to help us sort out the various parts of his being that seemed to be crashing at this point. She questioned the involvement of VHL in Steven's abdominal organs, looking for a reason for the fainting and crashing blood sugars. There were no obvious answers.
The dietician and occupational therapist also visited on Tuesday. Occupational therapy offered some ideas for working on the numbness in Steven's left hand, and they gave us resources to use at home to help with moving around safely considering the numbness in the left leg and foot. The dietician came at my request. I did not want the liquid diet to be pushed rapidly through the feeding tube. My mother's instinct told me that this was the reason for the diarrhea on Sunday and Monday. I wanted the feeding back on drip. The dietician and I went back and forth on this issue. (She is NOT my favorite person at the NIH!!!). Steven was placed back on the "drip" method of feeding, and his poor stomach finally began settling down.
The episodes of fainting, however, did not.
We waited until Friday to have a test done at the NIH that involved strapping Steven to a flat table, tilting him upright rapidly, and seeing how his blood pressure reacted. He was a funny fellow on that table. Some parts of the test were very particular...it involved something with holding your breath and releasing it slowly for exactly 20 seconds, or something like that. I can't remember the particulars. The nurses practiced this with Steven and then warned him that the doctor (a neuro-cardiologist, I believe) is never satisfied that it is done correctly and makes the patient repeat the test several times. They told him not to worry if this happens.
When the doctor performed this part of the test, Steven was spot on perfect the first time that he did it! The nurses looked at me and smiled! The doctor checked his watch and the computer several times. He then looked at Steven and said, "Well, lets do it one more time, just to be sure." Haha!
The actual "tilt" part of the "tilt test" was a total failure, however, and the doctor only left Steven upright for less than ten seconds.
The bottom line of all of this testing is that the fainting was not a result of dehydration from the diarrhea, as we had all hoped. The fainting was the result of a faulty autonomic nervous system caused by the brain stem surgery.
My poor sweet son.