Wednesday, August 27, 2008

August 27, 2008

We're already back!  This was our fastest trip, yet!

We arrived at WBH in Royal Oak around 3pm yesterday and we were home in Wichita by 4pm today.  Both kiddos had their EUAs (even Kinnick with her cold).   We had super nurses and doctors.  I can never say enough good stuff about WBH.  The staff is unreal and the hospital feels like a 4 star hotel.   I took a friend with me, so there was always help and someone to visit with.  This makes the stay so much nicer.   She's a great person and a joy to be around.

We didn't get any really good or really bad news.  I'll start with Carver.  His right eye looks great.  The retina is attached with minimal scar tissue.  His left eye is starting to develop a cataract.  It's still very small, but it will eventually cause him to need his lens removed from this eye.  The fluid under this retina has reduced significantly.  This is positive.  We are hoping the fluid is gone and the retina has a chance to attach before we have to remove his lens.  If we have to remove the lens before this happens, we run into a bunch of eye pressure issues and possible cornea issues.  I talked to the doctor about him avoiding looking at anything.  His right eye is so good, but he's not using it.  He doesn't appear to be processing sight in this eye or the other eye.  She said that this does happen with some kids with severe ROP.  Some will eventually start processing while others do not.  This could be a neurological problem related to his grade 4 IVH with hydrocephalus - only time will tell.  She thinks it could also be related to his limited sensory inputs (no hearing or sight).  She thinks it is possible that his processing will improve when he gets his Cochlear implants.  Carver will need to go back to MI to be seen again in 6 months.

Kinnick's eyes have not changed since her last visit.  They are not better, nor are they any worse.  She still has a small amount of fluid under both of her retinas.  We are hoping the fluid will go away over time.   If the fluid starts to build, we will run into the issues that I mentioned above with Carver's left eye.  Right now, the pressure in her eyes is normal.  I talked to the doctor about the light sensitivity that Kinnick is experiencing.  She said that she will always be more sensitive to lights.  This is because of the removal of part of the iris.  One of the functions of the iris is to contract and retract with lights to help control the amount of light that is being let into the eye.  Since part of the iris is removed, the pupil is more exposed, so you get a reaction that is similar to having your eyes dilated.  This stinks!  She's writing a note to my eye doctor to get glasses or contacts (with sun glasses).  Kinnick has very poor vision - shadows and light perception.  However, with lenses and a lot of therapy, it is still possible to see a lot more then most people would expect.  The retina is attached to the optic nerve which is attached to the brain and we all know how the brain can rewire in these little ones.  Kinnick really works with the little vision that she has - watching her, you wouldn't even know that she doesn't see well - unless you pay a lot of attention to her 3rd and 4th eyes (her hands).  Kinnick will need to go back to MI to be seen again in 6 months.

It was a short visit, but we did get time to squeeze in a quick visit with our preemie mom friend, Stacy (Conner's mom).  She came to the hospital to visit Kinnick and Carver.  It's so nice to have friends that can relate to all of our issues.  I miss Stacy, David, and little Conner.  I wish we lived closer.

Thank you for all of your continued prayers!  They mean a lot to us.

1 comment:

Jodi said...

I'm so glad that it was a short trip. I was thinking of you guys. As Stacy put it on her blog. . .you really are a supermom and I look up to you so very much. You are doing such wonderful things with Kinnick and Carver and making sure they have every opportunity.