Olivia update

So this week Olivia did all her pre-op tests for her operation in two weeks. She did great. We have been doing stuff like this for a while and this time around I had all sorts of epiphanies. For instance, Stan is an Olivia hog when it comes to hospital stuff. Every time she gets put under only one parent can be with the child, and Stan always goes. I think this time I let him go because he was getting so emotional and sensitive. He always gets teary eyed/ cries when she goes asleep. I say things like "hurry she's only out for 10 minutes lets go get some food" (Because we always have to be at the hospital so early and we never eat breakfast), then Stan will say something like "that is so insensitive, YOUR daughter is under and you want to run to the hospital cafeteria." It is true, all the other couples who's kids have been sedated are crying and holding each other and talking about feelings. I am not going to lie, it is sad... I think I would be sadder if I actually got to see it for once but on my end I say "see you soon" and then wait and then Stan comes out and that is it.

Olivia and I before she goes in to get put out

You know Stan is getting too sensitive when he goes down to the gift shop and buys books like "butterfly kisses" to read to Olivia when she comes out...this of course will only make him cry MORE.

Waiting....

Not going to lie, cool hats, and just about ready to go!

When Olivia started to come "out" the nurses started calling her the squirmer, because she kept inching off to the edge of the bed (a lot like a caterpillar), Stan seeing an opportunity for injury climbed into the bed to stop the wriggling and held her until she was coherent.

Olivia, NOT excited about he Vegemite sandwich option, but she had to eat and wee before she could leave so she ate it!

So a quick summary, Olivia had a VCUG done (we do these about once a year ) Here is a good explanation in case you are curious: http://en.wikipedia.org/wiki/Voiding_cystourethrogram , and she also had a 3mm camera go up her bladder and urethra's to investigate the scarring and what the walls looked like and to see the size of the openings of her urethra's. The picture results and VCUG grade merited a procedure called a urethra re-implantation: http://www.ucsfchildrenshospital.org/education/ureteral_reimplant_surgery/index.html

Last year (in England) we had a sting operation, which was successful but the fluid was reabsorbed into her body and her reflux came back. Anyway, we have been meeting with urologists a lot, thinking this was the problem and that we were treating the cause but a week ago we had some exciting news after meeting with a gastroentologist and Olivia's "failure to thrive" (grow). He discovered that she is missing an enzyme to correctly break down poo and that her intestines are packed full (up to her stomach) which is why she doesn't eat (she feels full all the time). The gastroentologist also suggested that since her intestines are so full they may be pressing on her urethra's (behind her intestines) thereby making in difficult for her urine to drain, possibly even pushing it back up to her Kidneys.

It makes sense.... Breast milk has this enzyme and I nursed Olivia until she was 6 months old. Between 6-12 months she was on formula and baby food and was probably getting all clogged up. At her 12 mo apt she dropped in weight and 3 months later had her first urinary tract infection. The gastroentologist put her on a laxative for life (she takes about 1/8th of a full child's laxative/ day) and she can't eat certain food that are difficult to break down like potatoes, bananas etc... we meet back with the gastro guy in 4 months to look at her intestines and see how she is doing with weight gain. From this discovery Olivia has a good chance of developing bowl cancer (which we will be looking into) but overall the discovery is good news and we are excited to see her progress.

If you are thinking, "does she still need the operation on her urethra's if she clears out her intestines?" the answer is yes. This is what we were looking at while at the pre-op and due to the damage on her kidneys she needs something NOW to save her kidneys (because we don't want to get on a kidney transplant list) and it is going to take time to nurse her intestines back to normal. If you have questions email me, especially all my dr. friends.

Ps. Sorry it took so long to write the blog update I have had NO time. In fact while writing this Thomas took a green fabric marker to two rooms of the house and got the walls, windows, bedding, so consider this a special treat!