Stewing

I never thought in a million years I would be mad or even upset with Riley...but that day has came. The more I think about things the more upset I get. Not with Riley in general and especially the NICU, but I feel like the ball was dropped in the developmental peds department. We have seen them a total of three times in the past 16 months since Luke was discharged from the NICU. We've changed doctors after a cruddy first visit. After Luke's G-tube placement I was the one to call about an appointment since it was never mentioned or scheduled. Each time I fill out a paper asking me what my concerns are and they are always the same three things: 1. Developmental delays 2. Feeding issues 3. Diet. They give me suggestions about feeding and diet and I even speak to a dietician on occasion, but we never really get answers for the delays. Now I find that they knew all a long why he had the delays and I was never informed.

I have Luke's full report from the NICU while he was a patient there. It is broken down to birth and all the main systems of the body. In bold letters it says: RIGHT IVH GRADE 1. Now to a person that doesn't have any background of medical studies you might not know what this means. It means there is a right interventricular hemorrhage grade 1 AKA: brain bleed. This is something that we were never in formed of that we can remember. This can cause some of our problems we have been experiencing. That isn't all I found. It also says that on an ultrasound on 6/23/11 it showed possible periventricular leukomalacia and that it is recommended to follow clinically! It says it right there that it should have been watched, yet I was never informed. Now I know I could/should have seen this before since I do have a copy, but really should that be my job. There are some many other things that could have been done before now. I can't say things would be different, but we could have had the chance.

The more I think and wonder about things the more upset I get. I have since called our regular pediatrician to discuss it with him next week. I think we need to see a neurologist just to clarify everything. I know if I call Riley myself it will be a couple months. I might be able to get Luke into a neurologist around our area. I think that sometimes doctors don't want to diagnose children right away, but in the long run it is better to have these diagnoses. Then I wonder if I should have looked at the report closer myself and picked it apart. So as it stands Luke's therapists know where we are, and have changed a few things to help up. Luke is wearing his shoes more, especially in his exersaucer. This will help with stability.  Hopefully we can get answers and some clarification.