Friday, May 16, 2008

Still in the hospital...

7:30am UPDATE

Well, the normal docs that know us rounded earlier and asked why she wasn't fed overnight. Ugh. The doc never showed up last night to talk to me. I will definitely have to take that to a higher level. Later.

Anyway, they said to start slow feeds, and milk of magnesia (finally!). I was very happy to hear they are going to try to help her instead of just standing around. I'll let you know how it goes.


Well, things didn’t improve over night. I suppose the positive is that things didn’t get worse, either. Although I find that hardly comforting at this point. I did manage to get a few hours of sleep. But was awakened before 4am to very bright lights and a lot of people around Harlie. They tried to start IV fluids since they don’t want anything else going in through her g-tube. Some say they hear no bowel sounds at all (which is not good) and some say they hear some faint ones. It is always very hard to tell what you’re listening to with her.

Anyway, the vein shut down, so now they have to find another one to start the IV fluids. I really can’t express just how difficult a task this is. They waited till she was asleep before surgery till they started one and still had to stick her multiple times. She came back with several bruises in both arms and legs. So, they tried again this morning, several different people, several different times each. Finally, the last one said, “no more torture”. So I guess they will try again in a few hours.

Her belly doesn’t seem to be getting worse, but if things don’t start moving the in right direction soon, I am going to really start to get worried. I think they are going to take some x-rays this morning to make sure there’s no obstruction. I keep on asking what we can do to help her, but the only thing they say is time. I will try to get her up and walking today to see if that helps at all.


I am so disappointed. Unfortunately, in the late afternoon, Harlie’s belly became distended (very bloated) and they wouldn’t let us take her home. Of course I find this out after we made arrangements to get Murphy taken care of and Tom dropped off at the hospital so we could all ride home together. So, at 8pm Tom and I had to go home, let me get an overnight bag and then I drove back to the hospital to spend the night. To make matters worse, they moved Harlie to the step down unit (which is a big room with a bunch of beds separated by curtains). Last year my older brother visited us when we were here and he said going from the PICU to the PCU was like going from a really nice hotel to sleeping at the bus station. That is so true. I will say that we got lucky and got the corner bed, so it has two walls AND a window.

So, her belly is distended because she had anesthesia, abdominal surgery (and they filled her belly with air), she’s been on strong pain meds, and the formula they have here doesn’t have fiber (like we have at home). All of those things have not helped her GI motility, AT ALL! So, now we wait until things start moving and her belly goes back to normal. They had worked her up to full feeds, but after her belly started looking bad, I asked them not to feed her the 5pm feeding. I just gave her water periodically and they tried some meds to see if they would help (they didn’t). All the docs agreed that we could start her night feeding at 9pm at one ounce per hour and I would bring my food from home so she would get the fiber. Now that she’s in the step down unit, they don’t want to give her anything at all. The orders are for her normal feeding of 48 mls an hour (which is a little more than an ounce), but the doc in charge (who isn’t here) said no, she can’t have anything. Ugh.

This is when hospital life outside an ICU is FRUSTRATING!!! It is now after 11pm and she’s had nothing but some water and meds since 1pm. The doc that’s making this decision isn’t here and hasn’t even seen Harlie. All the other docs that know her agreed that 30 mls an hour would be fine. But since this isn’t an ICU, the doc doesn’t have to be here. Of course I had to get assertive, so the nurse said that the doc will come and see me to talk about it. We’ll see how long it takes him to get here, if he ever does. So, it’s late, so I’m going to try to get some rest. They are now cleaning the bed space next door and causing all kinds of ruckus. Lovely. Hopefully things will change over night and we’ll be able to take her home in the morning.

Take care,

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