"So to talk more about the medical stuff going on with Bear- here is what we know so far:
Bear has Spina Bifida and everything that can come along with that (hydrocephalus and chiari). Bear will need a VP shunt placed in his brain to drain the excess fluid. He will likely have this surgery done on Thursday.
Bear has Spina Bifida and everything that can come along with that (hydrocephalus and chiari). Bear will need a VP shunt placed in his brain to drain the excess fluid. He will likely have this surgery done on Thursday.
Bear also has bilateral club feet. He will have care and surgery for this later on- he has several more urgent things going on. He is paralyzed from the spina bifida- we don't know how much- but likely he is paralyzed in his lower legs. This means that Bear- like we did with Angeline- might need to use a walker or wheelchair for mobility. He will also wear AFO orthotics on his legs to help keep his feet straight once they are repaired. (Through a combination of serial casting and surgery I would assume- his little toes are misplaced a bit- almost above the fourth toe- so I am not sure how this could affect things or if it will.)
Bear also has a neurogenic bladder and bowels. We aren't sure yet about long term CIC (clean intermittent catheterising) and such. He had his kidneys and bladder ultrasound done and has had a foley catheter (one that you leave in) for the past few days. He has a hernia in his boy parts and it is making his pee tube (real technical I know) a little "different" so they had the urologist put the catheter in. The tube is being pushed by the hernia. The hernia might be getting repaired on Thursday when they do the surgery for the VP shunt. Bear also has a thing- campo (something or another) from Haiti that is giving him terrible diarrhea. They are giving him medicine for this. Later on, when Bear doesn't have diarrhea, he will be on some sort of bowel management program that will keep his stool regular. There are several blood tests, stool samplings etc. that are still pending so we will know more soon if there is anything else going on there.
Bear has a really hard time burping (like he doesn't hardly burp at all) and was really FULL of gas the past 24 hours. So they did an xray to make sure that was all it was. But it made his belly big and his breathing harder because his diaphragm had less room to move! He also has a rash that is eczema and fairly significant on several parts of his body. This could be from dry skin or perhaps an allergy of sorts. We are putting stuff on it and keeping an eye on it.
Bear has a lot of skin breakdown on his bottom from the diarrhea so we will have to be diligent about keeping his bottom clean and dry until he can get over the diarrhea.
So for now- that's all. I am sure that there are things I have forgotten. It's a lot to think about all at one time!!"