Penny remains in the hospital. Yesterday was consultation day with visits from palliative, wound, nutrition, oncology, internal medicine, interventional radiology, even a chaplin. Several of these folks (as well as the nurses and techs) are familiar faces from previous hospitalizations. In fact, when we arrived on the floor the white board in the room welcomed Penny “back” to the floor.
As of this morning we seem to have the micronutrients back where they should be. It’s amazing how many of these we have had to deal with: potassium, calcium, magnesium, zinc, copper, selenium, and probably a few more not coming immediately to mind. Just now she is getting infusions of magnesium and “trace elements”, which is a combo of some of the rarer things needed in small amounts.
Hemoglobin levels increased dramatically after a blood transfusion — by about double the change that is typical, perhaps because Penny is so small. But half of that gain has been lost again in less than 24 hours. So blood thinners have been held while we continue to investigate possible causes for dropping hemoglobin.
That increases the risk for more blood clots, and there is some clear swelling in her legs and feet that we continue to monitor. But it seems that other issues are more concerning at the moment.
Nutrition remains one of the biggest issues, and we will continue to experiment with amounts and types of oral feeding, different formulas for tube feeding, and possibly some non-IV supplements for some of the micronutrients that have been boosted via IV the last few days. There has also been conversation about possibly supplementing with IV nutrition. A hybrid approach to nutrition that includes oral intake, tube feeds and IV nutrition is unusual and requires some coordination among several different departments. But as one doctor put it this morning, “you are a very rare patient.”
We are still dealing with the tube site as well and are trying to figure out the best way to promote healing. Chronic malnutrition and an acidic environment add to the challenges. We discussed again this morning the option of removing the tube altogether to assist the healing process. That decision will likely depend on how things go today. The tube could potentially be temporarily replaced by a nasal tube to support nutrition.
Meanwhile, the physician hive mind is continuing to consult to figure out a plan (and back-up plans). The short summary is that it’s complicated.
Yesterday we discussed the possibility of going home today or tomorrow. So far today, no one has even mentioned a discharge scenario. So we are pretty sure it won’t be today, and it’s unclear when it might be. From experience, we know that interventional radiology is understaffed, so if removing the GJ tube is part of the plan, that could introduce several days of waiting — especially with the weekend coming.
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Susan Norman: It appears that the notifications are not being sent since I see no comments on these last 2 updates.