Tonight was my night to sleep at the hotel. I don’t mind staying at the hospital, but I have to admit, that hotel bed is pretty inviting at the end of a long day. In the early afternoon, Zack started crying that he did not want me to leave him tonight. He insisted that he wanted me at the hospital and daddy at the hotel. Daddy played it cool, but I know he was looking forward to spending time with Z. They have lots of fun together. After lots of tears and pleading and big blue eye batting, we told Zack that I would stay with him because really, he has been through a lot.
Zack’s day started with a visit from our surgeon. Zack’s stoma had been working a little too well yesterday and we had a pretty high output day with a total of 1025 ml. We have seen that before and we had not yet started back on Zack’s Imodium, so we were not overly concerned. Z’s surgeon wanted to see how his body responded without Imodium and also wanted to get a urine sodium level 24 hours after discontinuing IV supplementation. We discussed various options and decided to hang out here in the hospital for another day.
Zack’s sodium levels have always been a little low. We have spent the past year pumping him full of gatorade and allowing him to eat salty foods. We know things are bad when he licks the salt off his fingers AFTER eating potato chips. Ewww. Last Friday his GI at Walter Reed did a urine sodium test on Z which came back extremely low at less than 10. Numbers less than 20 are considered low. His urine sodium level indicated that his kidneys were really conserving sodium so his whole body levels were low. His blood sodium levels were borderline low, but I guess the sodium in his urine gives the doctors a better picture of how things are really going in his body.
After surgery Zack was pumped full of sodium through his IV fluids. His urine sodium level rose to 74, but that was an artificial reading. His surgeon wanted to see what his levels were today and they were 15. Zack was started on sodium pills around lunch time today. I guess when kids are low in sodium their output can be very thin. We have struggled with thin, watery output all year. Sometimes adding sodium can thicken things up. At the same time, Zack was started back on his Imodium. Sadly, his output went from 1025 yesterday to 1565 today. A typical day for Z on two doses of Imodium ranges from 300 ml to 700 ml.
Further exasperating everyone, Zack’s urine output was super low today. By 10 p.m. this evening he had only had 200 ml of urine out. A bladder scan was done which showed no urine in his bladder. The staff assumed the machine was broken and ordered another one to be sent to the floor. When the second machine showed basically the same thing, the surgical resident was called. Zack is now receiving a second bolus of IV fluids in addition to replacing his output at a predetermined rate that would make no sense unless you know medical stuff. If you know medical stuff, please excuse my rough attempt at explaining this.
What all of this really means is that we were here another day. I have no idea if we will get to leave tomorrow because his output is way too high and needs to be under control before we take a dehydrated kid on a 500 mile road trip. We are hoping his Imodium and the sodium will kick in over night. We are hoping the IV fluids will make him have to go to the bathroom. And that is all I know.
I put this picture on the blog tonight so you can see Zack’s eyes. We can always tell when something is going kaflooey when his eyes look like this:
Oh, he is still handsome and all, but those eyes begin to look a little sunken. He was not thrilled to be hooked back up to the IV. He met a new friend here and that friend got his IV out today. That meant he could play the Wii with both hands and Z could only use one. The injustice of it all.
Don’t worry about poor little Zack. As you can see here, he is both watching Nick Jr. and playing on the Kindle Fire. He’s got it good.
OK, so maybe not “good”, but things are going alright for him around here. We have been meeting lots of nice people and learning our way around. It will make our next visit in two weeks even easier….if we ever get out of here!