Sunday, May 3, 2009


When we talked about the recovery from surgery with the doctors, the plan was for a night in the Pediatric Intensive Care Unit as a precaution, then we would be to a regular floor the next morning. Things haven't quite gone as planned, and we're still in the PICU, and will be for at least one more night. As part of their monitoring, they monitor his sodium levels. Sodium regulation is a function of the pituitary gland, and low sodium levels can lead to problems with seizures, etc. Normal sodium is above 135- he has fluctuated from 130-134, never quite reaching 135. Yesterday at noon we had transfer orders written, and then pulled when they realized he was only at 134.

After further testing yesterday they found out he has something called "syndrome of inappropriate antidiuretic hormone." Yeah, I can't say it either. (Neither can some of the Docs and nurses. That's really quite funny!) According to Wiki, SAIDH is:

The syndrome of inappropriate antidiuretic hormone (SIADH) is a condition commonly found in the hospital population, especially in patients being hospitalized for central nervous system (CNS) injury. This is a syndrome characterized by excessive release of antidiuretic hormone (ADH or vasopressin) from the posterior pituitary gland or another source. The result is hyponatremia, and sometimes fluid overload.

Clear as mud? Yeah, me too. Basically what we're doing is restricting his intake to force his body to release the extra fluid. And waiting, waiting, waiting for his body to correct itself. Initially, we thought it might be a quick process, and kept waiting for word that we would be released from the PICU, but it seems like it may be a longer process. We're told its a rare complication (Somehow, that doesn't surprise me!) but that its not threatening, just something that they have to keep close watch on. Thus, another night's stay in the PICU. We're not sure what that does to our overall hospital stay time. Originally, we were hoping to be discharged tomorrow, but there's no way that will happen now.

Max is super swollen today. His body seems to be doing better, in fact, everything except his face is back to normal, which is fantastic. His eyes have swollen shut, which we expected, and they are starting to look black and blue. He's super irritated today, and frustrated that he can't open his eyes, plus I think he's hungry because he can only have just over two ounces of breastmilk every four hours. Luckily, we're keeping on top of his pain meds, and I'm hoping he'll keep sleeping peacefully as long as possible. Everyone that I've talked to whose kids have had this surgery says that once the swelling peaks, it starts going down pretty fast. I'm hoping we're reached the peak- I can't imagine his poor face being more swollen than it is now.

They did remove his turban bandage today, which is exciting. I teared up to see his new forehead- its completely flat! The swelling is distorting his new look, but we can already tell a difference in the way his eyes look.

There's no way to describe what its like here. Never in my wildest dreams did I think I would be here with a child- its very surreal. The PICU is an open pod, with curtains to offer an illusion of privacy. But there's so much going on, so many doctors, nurses, technicians and procedures, that everyone immediately around knows everything that's going on with the kids. To the left of us is an almost 2 year old with unexplained seizures. To the right of me is another 5 month old baby that just had open heart surgery. Its a place of big stimulation: alarms, wires, bells, babies crying, pages over the intercom, etc. I have a rocking chair to sit by his bed, and there's "sleeping rooms" which are basically small closets with a bed that we request each night. There's a nurse for each patient, so he's monitored very closely. Lortab every four hours, feeding every three to four hours, sodium levels every four hours. Breastpumping every 6 hours or so. And waiting. Lots of waiting.


  1. Ahh!! Just thinking about the PICU brings back memories. It's so frustrating to be stuck there. I know you will think this is crazy but some people actually LOVE having their children in the PICU! They think it's like the greatest thing EVER that they don't have to stick around. SO SAD!! I'm sure you've noticed all the kids around you who's parents are MIA. UGH! Don't worry, once you get to the floor, nothing seems as urgent and you don't have to leave your baby to get some sleep. Hopefully once you get to the floor you will only stay overnight and be able to go home. So sorry that things haven't gone "as planned" but it sounds like you are used to that!

  2. I never dealt with the PICU but it sounds a lot like the NICU! I'll be thinking of you--it will end eventually--hang in there!


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