Tuesday, July 15, 2014

The Week off?

It is probably noticeable from my lack of posts during my "relaxing week off" that it didn't work out that way! Well, that isn't entirely true. We had some great moments and we got some things done. Notably, We baked some brownies, some pound cake and some sweet cornbread cakes. I made dinner everynight and ate with the kids 2 nights this week (yeah that is pretty bad percentage!). We got homework done everyday for over half of the kids and Han can now write his name. We spent some good quality time in the pool (I love family time at the pool!) On Wednesday, Keith and I took Han and Ulysses up to Cincinnati Children's Hospital to the IAC and then Ulysses was admitted for aplanned 3 day admission to just get all of his complex issues evaluated. Without an admission it would have taken months to get everything done! I was kind of on the fence about the whole inpatient thing. We had only been home 10 days and it is scary to go to a hospital and have half of your blood volume drawn in labs over 3days and have everything imaged in 3 different ways. I was worried about things...as all mom's know that is what we do...worry! Thank God we decided to do the inpatient thing. We saw Urology, Nephrology, Orthopedics, PT, and Neurosurgery. We had Xrays, MRI's, Ultrasounds and more Xrays. There was muscle testing, catheter changes, and much cartoon watching by all. There was some expected bad news and some unexpected bad news and lots of plans were made. Basically, Ulysses kidneys suck. They have been bombarded with urine refluxing back from his sucky bladder for a long time and they are now sucking. The imaging looked awful even I could tell it was bad! He is on a low potassium diet now and the words Kidney Transplant have been uttered by Nephrology. No he is not in renal failure or needing dialysis or on the kidney transplant list...they just said he might need one in the future. However, it kind of freaked me out that it came up in the conversation at all. My little trooper spent 2 1/2 hours in the MRI on Friday night and we found several things we personally weren't expecting but the Neurosurgeon didn't seem too surprised by any of the findings and we will be doing another MRI in 3 months along with a dilated Ophtho exam in 2 weeks which will hopefully be the same week as Ulysses' first American Surgery. Happy Fourth of July to us! He will be having a vesicostomy. Basically, his suprapubic catheter will be removed and the pathway it has been sitting in between the bladder and the skin will be surgically left open..the bladder will be stitched to the skin so there will be permanent opening or communications between the bladder and the outside world. This will allow us to remove the catheter (yeah for removing apparatuses) and will allow more free flow out of his bladder which will hopefully take some pressure off of the kidneys. Hopefully we will be able to get measured and fitted for some new AFO's at that time too! He was a really, really, really good patient! Han visited the ophthalmologist who told us that there wasn't a correctable option for him..inother words....glasses would not help. After talking to some other CA mom's though I think we will get a second opinion from a low vision optometrist.

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