CHOP decided to block the mylittleliliana.com domain from their network, so I don’t think Mercy will be able to give you any updates tonight. I’m at home so I can go back to work tomorrow, so I’ll write a bit about what we know.
In case you heard about our previous problems with the Children’s Hospital of Pennsylvania, I can assure you that their culture of keeping patients in the dark continues.
We had surgery on… Friday. It ended around 4:30. We had a brief talk with the surgeon, Dr. Flake, afterwards. He was, as usual, professional, to the point, and knowledgeable. He was also extremely aloof and seemingly coldhearted, but I wouldn’t expect anything different from someone whose job is to cut small children open. Since then, there have been no status updates from any doctors. As usual, there seems to be a culture of “We’re taking care of a lot of sick children right now so we can’t be bothered to examine your child that is ‘stable’.” At least most of the nursing staff has been better this time. Yet I don’t see anything wrong with the expectation that a Doctor should come in and talk with us at least once a day to say, “Here’s our current plan, here’s what we expect to happen. If this doesn’t happen by this time, here is our plan b. We could also do this and that to help along. Any questions right now?”
So, like last time, we’re stuck with standing orders for two days now. The plan, as I understand it from talking with a nurse, is simply to wait for her bowel movements to start, and continue to relieve pain through the epidural and small doses of morphine.
Mercy is staying overnight down there until Liliana is discharged. A surprising amount of the responsibility of the quality of care is given to the parents. Checking the diaper to make sure that it isn’t soaking through the blanket? That’s the parent. Nagging the nurse every fifteen minutes to make the syringe pump stop beeping loudly when its done? That’s apparently the parents’ responsibility. God knows what would happen if Mercy ever did have to leave for 30 minutes. Actually, Mercy did do that before last time Liliana was in the hospital. She went to grab some food from the cafeteria and came back to find Liliana alone, with the appearance of having been crying for at least 20 minutes. We guess the nursing staff chose to ignore it. Mercy was bothered by that, but never mentions it in the blog. But its episodes like these that always make us hesitant to leave her alone in a room at CHOP for even 5 minutes. Like I’ve said previously, I suppose our expectations are just a bit high. Its far too much trouble for a nurse to figure out that a syringe pump will always start beeping 15 minutes after its given. Only one nurse has really figured that out, and oh are we grateful!
Liliana herself seems miserable most of the time, and the rest of the time she seems completely out of it. She can look around, see people, but fails to smile, and doesn’t talk much or point to much either. Of course, if people took my internal organs, cut some of them out, and then moved the rest around from side to side, I’d probably not be smiling either. Her only point of happiness is a small cat with these big feet that her Uncle Duu (my brother) gave to her recently. She clings to it ferociously when we don’t have her hand gloved. When she does fall asleep, she makes sure its within reach, and will even fall asleep with her hand still wrapped around one of its legs.
Liliana’s Jail: Basically, Liliana must feel like she’s being punished. She has things weighing down her arms and legs everywhere. On her left hand, an IV is plugged in, and its blocked from manipulation by a “tortilla” or a “no-no” as some of the nurses call it. Its heavy, and has wires attached. On her left food, there isn’t anything, so she’s often using this to lift the blanket up a little as she usually does, but it provides very little feeling of freedom. On her right foot is another IV. God only knows why she still has two needles poking her, but apparently they did use one to get blood out the other day. But from what I understand, the IV sites are made to support both intake and outtake of fluids. The IV is supported with a big block of foam which makes everything she does awkward and heavy when trying to move that foot.
Her right hand is her only free hand. Sadly though, they have a nasogastric (NG) vacuum tube running into her right nostril. The tube pokes way out off of her face and is easy to grab accidentally. This means that unless we’re holding her and are able to monitor her movements very closely, she has to wear a sock on her hand. She has gone through enough, I’d rather not force on her another NG tube down her throat. I do hope that once we take it out that it may be the last NG tube of her life. We’ll get to take it out once she has the bowel movement that signifies the normal rhythm of the digestion system has re-begun.
Then there is the g-tube. Its this large tube that I really have no idea how we’re supposed to handle. Right now, it connect to another tube that connects to a bag.
Lastly, there’s the 2 to 2 and a half inch cut down the middle of her abdomen. It, frankly, scares the life out of me. Every time that I or someone else is picking her up, changing her diaper, or moving her at all, I get stuck imagining all the different strains it must put on that delicate cut. I imagine how easily all the organs might fall out of that hole that was wide open just two days ago. I imagine a small seam in a pair of pants, just sewn together, and I imagine someone taking it and rubbing it together or twisting it even the tiniest bit. Now imagine there are also thousands of nerve points in that area of the fabric all screaming as they are brutally rubbed together. Just imagine it.
Needless to say, I think we are all looking forward to the day that Liliana will smile again. “Look daddy, no holes!”