Benson and Claire were born with a rare genetic disease in which their liver produces too much oxalate--called primary hyperoxaluria. Claire's condition has progressed much faster than Benson's. She was on dialysis since she was 3 months old and for much of that time, did dialysis 3 hours a day, 6 days a week. She receive a much needed kidney / liver transplant on December 18, 2009. It is expected Benson will eventually need similar transplants.


Tuesday, December 6, 2011

what a day

Today's just been one of those days. Claire and I spent 5 hours at the hospital; cleaned up Mabel's throw-up twice and stepped in it once; got pee ALL over my arm as I tried to get a urine sample for Claire without gloves on; finished Benson's 24-hour urine collection; and cleaned up liver bile that leaked from Claire's bag all over our pants one time and on the love sac later this evening! And with all that said, there's really nothing even that significant going on!!

Claire's been having unexplained head aches, so she did some urine and blood work today and meet with the doctor this afternoon. The doctor and I both feel that she's okay and will hold off on the head CT scan they had scheduled for tomorrow...and just keep our eye on her blood pressure and other things. She'll do a kidney ultrasound tomorrow. I'm really not sure why it took so long at the hospital today. Besides doing blood work / urine cultures and meeting with the doctor, we had to pick up a new bile bag and flushes at the Mayo store, throw coins into the water fountain every time we walked by, went to the wrong parking garage the second time we were there, stop and listen to the piano player/singer, made puppets out of tongue depressor and listen to funny stories from the doctor while we waited for a different doctor to page him back, look out the 16th story window because the kids were convinced we were high enough to see Colorado, and of course take about 16 potty breaks for each of the kids at different times. Ya know. Important stuff. Claire's fine. She's not 100 % herself, but she really hasn't been since she's had this drain line put in....but she's fine. Big day but not much to show for it....WHICH is good!!

Mabel is the reason for the loads of laundry we've somehow fit in between hospital visits. But she's not sick. She just is "mildly anemic" and last week the doctor prescribed her to take iron twice a day. The pharmacists said it could cause nausea and constipation and I'm pretty sure both side affects are ACTIVE in her case! She's healthy as a button but the food won't stay down. Pretty sure that negates the hope to get her iron levels up if she's chucking up everything else!! I'll be calling the doct tomorrow and see what we can do different. But as a side note, Mabel is extremely difficult to feed. She is sooooo not interested in food. She's just not hungry. Pretty much ever. And when she is, she eats like 5 bites and is done. She was 17 lbs at her 12 month check up and obviously should be a bit bigger. BUT she's NOT a big eater!! I don't know what to do different to get her to eat. Suggestions?!?! Throwing up doesn't help...

And Benson completed his 24 hour urine collection with flying colors. He asked if we could do another one tomorrow because he wanted to see if he could get the big container all the way full this time instead of just almost full. He drinks a lot and therefore pees a lot. Probably more than most adults. Seriously.

That's my life for the day! Blunt and simple. Urine, throw up, and bile. That's just how things roll in this house. Tonight I'm grateful for washing machines, soap and water, showers, coins in the purse, stain remover, and a good husband to make up difference.

4 comments:

Nathan & Michelle Watabe said...

Dang, those are the dog days of motherhood! But like you said, still so much to be grateful for!

Grandpa Terry and Diana said...

Just remember that this too shall pass.

Kids are a lot of work. But they are sooooo worth it.

They will keep you going your whole life through so remember to enjoy the journey. I enjoyed taking care of you when you were throwing up.

~adelle said...

Oh dear.

Tasha said...

Life is messy! I understand how hard it is to get Mabel to eat. Abigail was the same way. She weighed 17 pounds at a year also. Fasting, prayer, and a lot of persistence helped her to like food a little more.

I love that Benson thinks that Sister Monson is the tooth fairy!