It's been a good day. We are still working on pain control, and the legs are about the same as they were yesterday.... however a big breakthrough is that shea can now for the most part sit up without vertigo. It happened like a switch. We had been playing a ball game while he was in a kid cart laying on his side. It involved a lot of arm movement for about 20 minutes. He even tolerated laying on his back for a few mintues. Suddenly Shea said - mom, my head feels different... i think i want to try to sit up.... AND WITH HELP HE DID..... NO VERTIGO!!!!
I am over the moon. I feel like discharge could be within the next day or two now. We do still have consistant vertigo when he sits up and then looks down, from neutral head into any cervical flexion... but it is so much improvement. Answered prayers...!!
He is getting more comfortable in bed as well, and a few times over the last day and a half has taken tylenol instead of hycet. Nights are still rough... and i hope that improves for him soon. Waking up trapped in his brace and disoriented bc of sleepiness doesn't help much, and sometimes i think it's anxiety, or frustration as much as pain when he struggles at night.
It looks like he has a bit of a UTI growing... and he has a low grade fever tonight on tylenol... but that is something we're staying on top of and hopefully wouldn't prolong a hospital stay.
I'm hoping now that his pain with sitting up will lessen that the improvement in vertigo would make this possible.
Since there has been a significant improvement today with the vertigo for the first time since june 8th...I am feeling like we may not move forward with the csf imaging tomorrow. It involves contrast being inserted through the shunt and watching flow in various positions, and also sedation of some level. I don't know that i want to put him through this.... and now i wonder if we really had more of a dural / cord tension / stretch issue...that affected his chiari...rather then the chiari being affected by a low csf pressure issue. Dr mom has a new specific diagnosis...that wouldn't require any serious intervention. (But i won't go into it in case i am totally wrong!) Whatever the reason he is feeling much better and I am so thankful and blessed.
Do pray that shea's anxiety about sitting up without support will decrease. Even though he doesn't get the vertigo today unless he looks down, he was still very traumatized / fearful about sitting up,. We also need his little neck to strengthen. He's been in non gravity positions for so long that he looks a bit like a bobble head doll currently.
Tomorrow brings morning meds, and personal medical routines for a few hours in the am, then we'll see ortho, and probably neurosurg.... testing is up in the air...and we will watch this uti and pain control...
I would say there is a possibility that we could be sleeping in our own bed by monday night. I sure hope so. Shea has a long journey of physical and spirit rehabiliation on his horizon.. We need to close the vertigo chapter, so that we can get on to a new phase of life, where shea learns to function and mobilize himself with a totally new funtional level of his ...