Tethered Spinal Cord & Helping with Understanding Blood Draws

We're always amazed to see support and stories for other mamas about their experiences with difficult medical situations.  Cindy recently emailed us about her child's diagnosis of Tethered Spinal Cord.  Have you experienced this? And can you give her some advice?

I am seeking information from your wonderful community.  I have a wonderful six year old boy (almost seven!) who has been struggling with potty training for most of his life.  We were finally referred to a Pediatric Gastroentologist about six weeks ago and found out yesterday that he likely has a Tethered Spinal Cord.  We have to confirm with a Neurosurgeon and discuss treatment options.  However, our doctor and apparently all of the information available on the internet, says that surgery is the only effective option.

I would love support on a couple of fronts.  First, has anyone gone through this surgery with their child?  We had to use General Anesthesia to do the MRI this week so I know he tolerates that anesthesia well.  The anesthesia for the surgery may be different.  I am also finding information on-line that says once nerves are damaged, there is no repairing them.  Does anyone out there know if he may, someday, have control over his bowels and bladder?

The other element I’m interested in is how to help my four year old through this chapter of our lives.  We had to have blood drawn on my six year old several weeks ago for this issue.  My four year old and I had to take him and I think the little guy was the most upset out of all of us.  He somehow has associated blood with dying and so any quantity greater than just a scratch really scares him.

Daddy's in the ICU

Communicating delicate topics to our kids is something that can be difficult.  Melissa's husband was recently in an accident, and she needs your help in explaining the situation to her son and prepare him for visiting his daddy in the ICU.  She emails:

I need some help....my husband is in the ICU and has been there for about a week in a half.  I need some book recommendations to help my 2 year old son.  His dad WILL live but he had a serious head injury.  His dad is not himself & looks different.  I need to eventually bring him to the hospital but I don't want to scare him. I tried to draw a picture of what daddy looks like, but when I do that he looks like a monster.  Trying to show a picture of a daddy with a neck brace on, one eye swollen and shut, and a scar that is like a rainbow over his head from ear to ear with staples in it that DOES NOT look like a monster is very difficult to do.  I am planning to try to draw it on a doll or a stuffed animal to take away the scare factor.  I am planning on buying a doctors kit.  It is hard to find the time to do all of this while my husband is in the ICU & hurting & not himself.  I am pulling it together for my family.  I just need some more ideas so that it is not that hard to FIND the tools I need.  Where do I get this stuff?  What do I get?