Alex and Maddy

Alex and Maddy

Saturday, July 16, 2011

Quick Explanation of the Past Few Days

I know I have lost some of you over the last few days (who follow on FB)....

Wednesday Alex woke up with a dry diaper from his nap. He never peed the rest of Wednesday. We had a wonderful dinner with my cousin and I didn't really think much about it. Thursday morning he again woke up with a dry diaper. Per our plan I started measuring his urine output. He did pee a very small amount that morning. By late morning I realized he was not going to hit his "goal for pee" number and started getting in touch with his doctors. After talking to the dietician who we work very closely with and Dr. K, we switched him to half strength formula. They also wanted us to run labs and try and get in with our local pediatrician. We ran the labs they wanted minus the urinalysis (because that requires pee which wasn't happening). Unfortunately our pediatrician is out of town all week and there were no appointments with anyone that day. I was also scrambling to get supplies (mainly IV fluids) from our home health with the expectation that this was going to end with Alex needing fluids. By late in the day on Thursday despite not having the labs back if was obviously that Alex was pretty dehydrated. It had been over 24 hours with only 100 cc of urine. So I was given instructions to give him a bolus of IV fluids that night. We were very happy to wake up yesterday morning to a very full diaper. The repeat labs showed a huge improvement. We have switched back to full straight formula. We have once again revamped our "fluid/dehydration protocol" with the GI and dietician.

Bug is doing ok. He obviously didn't feel great the past few days, but we saw a big improvement late yesterday. Unfortunately the lab work showed a few other past problems rearing their ugly heads after years of having things under control (ammonia and coags). So yesterday once again prompted quite a bit of communication with our fabulous doctors and their staff. The changes have me a little more concerned then normal because both issues can be independent problems or they could show a decline in his liver function. Alex's liver is our area of greatest concern. I pray that a medication change helps which will take some of the worry away.

Thanks to everyone who prayed and checked in on us over the last few days.

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