First, Jackson had a urologist appointment. This was because about 3 months after he got sick a doctor noticed one testicle was missing. It had been there but apparently went back up. The theory was that when his tube became displaced he was in so much pain that it went back up. Or I guess it could have been during the initial brain injury but no one noticed it was gone until he went back to Children's for the tube displacement.
Well, the urologist looked everywhere for it and could not find it. He said he did feel something very small in there but nothing like a normal testicle. He said it could have been a torsion which means it became twisted and died. But we never noticed any swelling and a torsion is usually accompanied by swelling. However, that was during a time when a lot of life and death stuff was happening so maybe we just missed it. He wants us to get an ultrasound to see if it can be located.
Since everything just got way more complicated than I thought it was going to be, I really wanted to see a pediatric urologist (this guy sees mostly adults) and would feel more comfortable in a good children's hospital rather than the hospital system Jackson's pediatrician referred us to.
Yesterday we had a GI appointment. For once it was a good GI appointment, the GI is usually not very helpful at all and we are probably going to get a new one. This was our first appointment with him in about 6 months. We told him that we decided to start feeding Jackson through the G-tube and that he is doing very well with it for the most part. We also told him that we would like to start moving toward a more food-based diet for Jackson rather than just formula. I have done a lot of research on this and believe it will be much better for him. With just the small amount of baby food he now gets with his formula he has improved a lot.
We met with the dietitian about our ideas for this and told her what we needed from this diet: vegetarian but dairy is ok, about 800 calories (because Jackson barely moves he can gain and grow on very little), as low volume as possible, and must go through the pump. She is looking over what we brought in and running it through her nutrition software to make sure it will provide all the micro nutrients needed and she is going to call us back next week. Then when we get our Vitamix blender (we are waiting for the settlement for that) we will be all set to start.
We need a very good commercial blender like a Vitamix for this because everything has to be ground very fine to fit through the tube, but especially so if we are sending it through the pump. A normal blender would not grind everything finely enough and the motor would burn out very quickly. The Vitamix is very expensive but they do have a program where families can get refurbished blenders for half the cost if they are using them for medical purposes.
Our guy is now 51.5 lbs and 3'8.5" tall. His BMI is improving since he is getting taller but not gaining much weight.
We also asked him about the testicle situation and he said he should skip the urologist and go straight to a surgeon because wherever the testicle went he is probably going to need a surgery anyway. So he gave us the name and number of a surgeon there at CHW who I will call soon.
