Part of our miserable day on Tuesday was that Elizabeth's PICC line had to be removed since it stopped working. Which meant she had no access for drawing blood or giving IV meds. She is REALLY hard to draw blood on and difficult to start IVs on as well. So she has spent the past 2 days getting stuck TOO many times to count, her poor feet/fingers are bruised from trying to draw blood. And shes been stuck about 6 times trying to get IVs that will stay. So it was decided that she needs to have some sort of access, better than an IV. They were originally going to have another PICC placed today, but after some discussion she will not go into the OR tomorrow to have a broviac placed. It is basically a line that is tunneled in her chest area that has a lower infection risk than the PICC, and is something we can leave the hospital with. That way when she comes in for clinic twice a week as an outpatient, they can draw her labs from it instead of trying to stick her multiple times to get blood. Originally we were going to be leaving the hospital with no lines at all, due to the risk of infection, but its just too hard on Elizabeth the stuck so many times. So we will just have to be extra cautious.
Another new thing we are working on is her feeding issues. Most of you know that she had a gtube placed in Sept. Which means she was being fed into her stomach. When we arrived here in Dec she was having problems tolerating feeding into her stomach, so she got a gjtube and began being fed through the jtube into her intestines.The problem here is that being feed into the intestines requires that she is hooked up to the feeding pump 24 hours a day, continuously being fed a small amount of formula. In an effort to get her ready to be "a little more normal" we want to see how well she can tolerate being fed larger amounts of formula fewer times during the day into her stomach. Yesterday she tolerated being fed into her stomach for 3 feedings. But today she started throwing up after her first feeding. We will continue to work on this to try and get her to a point where she is on the feeding pump as little as possible.
The last update is that her home medical equipment was ordered today. They medical supply company will be delivering a home ventilator here to the hospital. We will work on transitioning her from the hospital to the the home vent and see how she tolerates it. We are still working on getting her off of the ventilator, but it may take a while to do that. So obviously no discharge plans yet. And honestly we are ok with that, we want to get out of the hospital but in all reality it doesn't change when we go home home. I mean after 6 months inpatient, whats a few more weeks :)
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