Wisdom Heart

We have been sent to the step-down floor. Sophia is pretty uncomfortable with her ear infections. She is still on a little bit of O², but it is just minimal. Her sats are hanging in the 80s with the oxygen. Her x-ray may be showing some pneumonia, but it has been my experience at this stage of the game to not lend too much credence to chest x-rays, as there interpretation is so subjective. From what I have observed, Sophia is improving. She ate about a cup of oatmeal this morning. I am hoping we can switch from IV fluids to PO (g-tube) fluids. She has tolerated her meds and what food we have been able to give her. She has not had any wet diapers other than the normal "wow, that's full" diapers she has right after her lasix. But according to her nurse she isn't behind on her output as of yet. She has some diarrhea but hasn't had much output there either.

We talked to immunology which is one of the areas that has been overlooked with Sophia's Digeorge treatment. Because there is apossibilityy of immune dysfunctionassociatedd with her syndrome, she should have had her immune response checked as a routine precaution. This has never been done. The scary part of that is that Sophia has received some live vaccines as part of her normal vaccinations. If she has immunity issues, this could have been a serious problem. Anyway the test requires a sizeable blood draw (about 20ccs or 4 tsps). It is sent to National Jewish Medical in Colorado (..I think). Anyway it takes a while to get back. I will let you know the results when we get them (probably about a month).

The other issue we are going to get checked while we are here is an unusual one. Sophia has what is called a "sacral dimple". Based on what I have read, at least 2% of the population have them. It is a small divot just above her butt at the base of her spine. Most of these are shallow and completely harmless. But in some cases, they can be quite deep and may be an indicator of neurological or spinal issues. We do not yet know what the situation with Sophia's is, as she has never had it checked out properly. But we are concerned about it because it has developed a callus-like growth in and around it and may have some drainage. Anyway, we are going to have them do an ultrasound of the area and try to determine if it is anything we need to be concerned with.

These are just a couple of the issues that have either been overlooked or qualified as lowpriorityy while Sophia was being actively treated for her heart defect. Hopefully we will get some answers. I encourage anyone who has a child with a heart defect to get genetic testing done to rule out any underlying syndrome and make sure that someone is following your child regarding other possibleanomaliess associated with possible genetic problems. I know we have had spotty care at best in this area.

It should be noted that Sophia is also being followed by an endochrinologist, as there are issues with calcium levels in kids with Digeorge syndrome.

I will try to write more about this aspect of Sophia's health in the future. I too had prioritized it behind the immediate cardiac concerns. But it is an important subject as many CHD kids have other genetic issues that require attention.

Edit: The additional issues listed above (immunology, sacral dimple...) are issues we were going to address in upcoming clinic visits. However, since we are already in the hospital...we insisted they be checked now. In other words, these are things we decided should be checked out. They are things her doctors had overlooked.