Since Friday Oliver has been in a terrible mood. He dissolves into tears for no reason. He winces seemingly in pain. He can't tell us where or what hurts and it is
SO
maddening!
If we ever get to a point that he can communicate what hurts I will do cart wheels for a full day. It is terribly difficult to be a parent of a sick child who can't communicate!
We have been in communication with our pediatrician (he is awesome!) and our Boston team. Dr. Thiele said that some of her other patients that are on Banzel have issues similar to this after going under anesthesia. We have cut his Banzel dose considerably and so far have seen less fatigue.
Yesterday at school he slept for 5 hours. He was there 6 1/2 hours!
So at this point we are waiting on phone calls. It is exhausting to be this stressed about your child so frequently. It isn't the seizures this time...at least that feels more familiar!
I spoke to David (Andrew's brother and an ER doctor) and he talked all this through with me. Mainly he just said how sorry he was that we can't communicate with Ollie and agreed this might be one of the hardest things. ever.
So, hopefully we can figure out how to help our sweet man. At this rate everyone feels like he is having pain in his head area. He is also excessively sleepy and off balance. Since he was fine until Friday night it is unlikely this is due to the VNS. It is possible it is still the drug interaction with the Banzel, or a headache, or God-forbid change in the tumors/spinal fluid in his brain. The only way to check his brain (without radiation) would be to put him under again and take him to Duke or Boston for an MRI. Last one was mid-May and stable. Now that he has the VNS in he has to have the MRI done at a place that has coils to protect him from the metal in the VNS. Sigh.
I am just worn down from the worry. I'm praying we aren't missing something serious and feeling in my mama gut that something is really off with this little guy. Prayers would be a blessing. We feel so helpless!
Lanier Landing
3 comments:
Wishing you a mighty, mighty miracle!!
Hug
Claudia and Brian
Oh Stephanie, I will be praying for you and for sweet little Oliver. I can not imagine how heartbreaking it is to have a sick child and wish you could ease his pain. I know the Lord has given you great strength and will continue to do so.
Blessings and love to you all,
Linda
Stephanie, I am so sorry Oliver is having such difficulty. I know the Lord will continue to give you strength, and will continue to pray for all of you.
Hugs and prayers,
Linda
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