GI appt: He got a new button placed it, there was lots of blood when they pulled the Mic Tube though, there is lots and lots of irritation as well. They are having me give a double dose of Nexium for 5 days to see if we can help with the healing of all the tissue that is irritated and angry. I also have to go by the pharmacy and pick up a cream, it appears that inside the stoma he has a yeast infection, how that happened I do not know. We are also going to be doing some clean out today, I know not the best thing to be doing but if it keeps us out of the hospital then I will do it.
Neurology: This appt is one that has no answers really... It was a hard appt for me and one that I wish that I didn't have to go to. Although I know that it could be worse and that many others have situations that are worse, this is my son and it is hard on me. We talked about his legs turning in and about the braces that we can't seem to figure out what to do to help him. I was told that it is very very very common for mito individuals to have this, that anything we do is going to be a temporary thing. So we are getting 1 new specialist.... an Ortho. They want Zach's hips and spine to be looked out, just to make sure there is nothing wrong with them. If there isn't there is nothing that we can do for his leg/foot turning in everything is a temp fix. Kinda glad to know just heartbreaking in a way.
We talked about Zach's low grade temperatures and she looked back at his blood work and all and so we are getting our 2 new speicalist an Immunigiolost. I don't know what this will entail and I am amazed that we are getting 2 more doctors.
She also said that I needed to look at getting a new wheelchair for him (his old one is only 6 months old). I am going to look to see if I can get his chair modified, I am not willing to accept this yet. The reason why is that his muscle tone in is chest has decrease so much that he has chunks of time that he needs to recline, our chair has now tilt at all. He is struggling even with the harness to sit in it at times. I didn't know that he would need it and they didn't either till now. As hard as that is they also are putting me in contact with a social worker (she says I never should have been doing all this alone). We have to get the whole deeming waiver thing started. Sigh, my heart is crumbling. Needless to say I didn't sleep well last night, with thoughts of medicine that we need to buy but can't afford, new doctors, etc. My mind needs an off switch.
So prayer for those of yall that pray, which please don't stop praying for us:
- Zach's medication, we need to figure this out so we can start it and not push his MITO appt back.
- Aden, please pray that his birthday doesn't get over looked with all the things for Zach, his birthday is Oct 1.
- All the new appts and that I can get it all together
- That the resources will come available and clear so we can provide all the things and support that we can do the boys.