John's tracheostomy has just been successfully completed. He still has a little extra sedation from the procedure but he looks comfortable and his breathing looks more regular and less labored. The medical staff say a trach is more comfortable than intubation and he certainly does look more relaxed.
The long term goal will be weaning from the vent. This is most likely a multi-week process that may be finished at a special weaning facility outside the hospital once some of his other underlying issues are stabilized. The medical staff say weaning off the trach is easier and less anxiety producing than weaning off the intubation tube and let's all hope and pray that's right in John's case.
The immediate short term goals are getting John off the blood pressure supporting med (levofed is the pressor he has been on) and moving from continuous dialysis to intermittent dialysis several times a week. Once he can maintain his own blood pressure continuously without medication support, renal can begin working on transitioning him to intermittent dialysis.
One reason John needs blood pressure support is the depressing effect pain medication and sedation have on his blood pressure. The sedation and pain meds should be able to be reduced and eventually discontinued on the trach. Without the sedation and pain meds, he should be better able to maintain his own pressures.
John has tremendous edema. He gets lots of fluids as meds, pretreatments, and tube feedings. He gets extra fluids sometimes to help him maintain his blood pressure. If he can start maintaining his own blood pressure without those extra fluids, some of that the fluid causing his edema can be drawn off through dialysis. That would help very much with his comfort. He has a skin tear on his right arm where the skin just tore open because it was so distended. Both of his arms are leaking substantial amounts of fluid through the skin - they are supported on absorbent pads which are changed regularly.
John's rash has cleared up so his steroid dose has been reduced by half. Instead of 50 hydrocortisone IV, he will be getting 8 mg methylprednisolone three times a day. This will reduce his immunosuppression and help him fight the pneumonia but it also can make him more susceptible to a reoccurrence of the gvhd.
His CMV numbers are still higher than they should be so treatment with foscarnet continues. That drug is kidney toxic. Hopefully, the reduction in steroids will help his own immune system assist the foscarnet in getting that infection under control.
John is on a very strong antibiotic but two of his other antibiotics - vancomycin and merepenum - have been discontinued. He is still tremendously susceptible to infection but his current wbc count is about 7 so that should help. Tacrolimus, the immunosuppressant drug required to keep his new immune system from causing a full blown case of gvhd, lowers his ability to fight infection. The good news is that only one infectious agent ever grew out of all the blood and bronchial tree testing he has had. The bad news is that was fusarium - a very difficult to treat fungal infection. Anyway, that is being treated and hopefully he will not develop any new infections. It is good for him to get off meds as soon as it is safe. They all have side effects that are not good for him.
These are the major issues that have to be addressed one step at a time but the tracheostomy should help get this process underway. Now we will be waiting to see what kind of progress he can make in the next several days.
As always, thank you for following along and for your good thoughts and prayers for John.
For the first time in a long time, the sun is shining and the temperatures are mild on this first day of spring in Philadelphia.
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