A BAD MONDAY

OK, now that it's over, it really wasn't THAT bad but it sure seemed like it at the time. 

Tom and I went to Birmingham on Sunday because he didn't want to do the down-and-back in one day - which I totally understand.  Birmingham is about 3 hours from our house, so not a bad trip.  However, we didn't leave until about 4:30 so I drove most of it in the dark while Tom napped.  I made a reservation at the hotel connected to the hospital and requested a handicap room - why, why, why did they put the handicap rooms at the END of the hall??  The only thing handicap about it was a bigger bathroom (which is nice) and all the bars.  The bed and all the chairs were still pretty low to the ground and are very difficult for Tom (with extremely swollen legs) to get in and out of.

We were up early Monday, so we got ready to go have a nice breakfast together.  It was quite a struggle for me to get Tom out of the chair and I messed up his PIC line which started bleeding (a real setback for my nursing skills).  That landed us in the UAB emergency room at 7:30.  They looked it over and took Tom to get an ultrasound.  I thought we would have plenty of time to get it all fixed and make the doctors appointment on time . . . NOT!  At 10:30 they discharged us from the ER.  The PIC line was no longer bleeding but the ultrasound had not been read and they couldn't do anything until they knew the status.  They put Tom in a wheelchair and pushed him over to the clinic so he could have the necessary labs drawn before seeing the doctor.  I think we walked at least a mile to get there.  Tom got the labs done and we were over at the doctors waiting room by 11:15.  His appointment to see the doctor was at 12:15.  I walked back over to the hospital to get us something to eat.  They took Tom to the room at 12:30.  At 1:15 I opened the door and saw the nurse.  She "mentioned" that the doctor usually doesn't get over to the clinic until 1:30.  I asked her why they made us an appointment at 12:15 if the doctor didn't get there until 1:30 . . . she shrugged her shoulders.  I asked about getting the PIC line fixed - she knew nothing about that either.  (The ER doc supposedly talked to the clinic and arranged for the PIC to be fixed either at the clinic or back at the hospital after Tom's appointment). 

When Dr. Alkurdi came in, he recognized us from our previous stay and was very nice.  The first question out of Tom's mouth was - how do I get a liver because this isn't working for me (referring to the now 50 lbs of extra fluid).  Dr. Alkurdi reviewed all that has happened since we were last at UAB and mentioned a procedure called a Denver Shunt which is like a pump to help get rid of the fluid.  It sounds good and is a simple procedure but any foreign object in the body becomes a source of infection so Dr. Alkurdi is going to talk to the transplant team to see what they think.  I don't know when that will be or when we will know if it's an option.  Since the team meets every Monday afternoon, they might have discussed it yesterday - or, it may have to be added to the agenda ahead of time - who knows?  No, I didn't think to ask. 

The other "benefit" of the Denver Shunt is that it will increase Tom's INR - which is the lack of blood clotting abilities.  Now, this is not exactly a good thing but a higher INR will move him back up the transplant list.  The biggest factor on moving up the list is kidney function and Tom's kidney function is great (which we want).  So this might be a way to get him back up the list and get a liver sooner.  We'll pray about it and wait to hear what they say.

We made it home about 5:30 pm.  Once we got unloaded, settled, chased the dogs (I forgot to close the gate), got a couple of new Rx's filled and picked up dinner, it was late which is why you didn't get a post last night.  One of the new meds is a different diuretic that Dr. Rutland prescribed.  It had to be ordered and did not come in until yesterday.  The second Rx is a different med to hopefully help with the nerve pain and numbness Tom still has in his hands and feet - it would be so wonderful to get this issue resolved.

Tom is contacting Dr. Rutland today to see about getting the PIC line fixed and also getting the fluid pulled out of his abdomen.  They will have to put him in the hospital for this.  He would like to wait a couple of days to see how the new diuretic works - I prefer that he go ahead and get it done so he can get in and out of the hospital sooner.  We'll see what the doctor recommends.  In the meantime, I am not giving Tom any IV meds. 

So, keep checking to find out what happens next!