....our lives changed. Seems like yesterday and 100 years ago at the same time. I will never get some of those visions out of my head, many are still too fresh. One in particular.....there is a back hall in Feinberg, not accessible to the public that is used for staff and patient transport. The night of April 30 he was taken from the ER through the underground tunnel system two blocks north to Prentice. I walked behind Steve and the man from Transport. It was a very quiet, solemn march. I tried to distract myself by looking at the art on the walls and reading placards next to the closed doors.....and then I saw this one, "Family Viewing Room." I realized at that moment we had a fighting chance.
Too busy to blog, yesterday was an absolute logistics nightmare and I was on meltdown pretty much from the time my feet hit the floor in the morning until I dragged my carcass to bed.
Today, however, was MUCH, MUCH better because of a lot of my pushing and goading and....may I say BADGERing of many people at many levels at many places. :-) I think I took or made 7 or 8 phone calls before we got out the door this morning for the blood center. Today we left at 11, and got back around 2. I challenge ANYONE to beat that time! That included stopping at church to switch out wheelchairs, make the mortgage payment at Harris, get to NW, park ALLLLL the way up on the 10th floor (Louis Armstrong in case you were wondering), get him in the wheelchair, motor over to the blood center, sign all the legal papers, draw a CBC, clear all 3 lumens (1 is clogged, the tech had to page hematology on that one), administer premeds, hang the platelets, validate parking, motor him back to the gargage, and drive home. Oh yes, I also called the home health nurse as we left to come after 3 to hang a "k & mag rider" (potassium and magnesium) with a pump which was delivered (please refrigerate) at 8:30 last night. And I became "the Mayor" of two more locations on FourSquare, probably lost most of you on that one.
Here's the deal. *Normally* you would not discharge a patient until their labs were "stable" or "good" and those results must be in a trend...preferably the same or better. However, that puts everyone (Blue Cross, Northwestern, the docs, and us) in a position of having Steve stay in the hospital on an inpatient basis SOLELY for daily platelets and a less frequent blood transfusion.
Yesterday we had clinic, and his hemoglobin was an Academy award-winning ELEVEN. I don't think it's been that high since I've known him. That was after just one bag o' blood on Tuesday; he normally goes up one point for one bag, so he went from 8 to 11, very impressive. His WBCs were about the same, 3-ish, but the damn platelets were at a scary 5. He got a bag yesterday and then we began the policies and procedures nightmare of getting special order "irradiated, leukocyte-reduced, WASHED platelets." He needs them EVERY day. Northwestern's blood center is closed on weekends.......you cannot get product at home.....(actually, I found out you can, but it sounded worse than what we were already dealing with, and safety is our #1 concern right now....grrrr).
Kim S. (bless you, bless you) is advocating for Advocate, ar ar ar, and has made many connections on her end at Christ Hospital with the head of their blood bank and other people with large incomes and impressive titles to help Steve transition to Christ for "fill-ups." Their transfusion center IS open on weekends and is 5 minutes from our house. That's a win-win. Of course, this takes both hospitals coordinating and communicating. I feel it will happen, and our stress level will downtrend.
Dr. Altman is pleased with Steve's progress. She and Dr. Mehta conferred twice already this week about the next step. Steve will have another CT scan on Monday at NW to assess splenic function. They keep hoping the two embolizations were enough.....a third is still in the cards as long as the platelets are being inhaled. I compare his spleen to a diabetic set loose in a candy store. Nom nom nom, thanks for the platelets! The good news is that his risk of bleeding to death from his spleen erupting is pretty much gone. He slept well last night and ate a sloppy Joe (and a pickle, please) and a small bowl of ice cream at bedtime.
Tomorrow we have a 2 p.m. appointment in the Blood Center at NW, and hope he will feel even better. He sat on the couch the entire evening tonight, watched tv, and conversed a bit with friends that stopped in to say hi. He also ate some KFC, his request. His appetite just isn't there at all, and I am hoping as his counts come back up that he will get hungry. It's very frustrating for all involved.
Today, however, was MUCH, MUCH better because of a lot of my pushing and goading and....may I say BADGERing of many people at many levels at many places. :-) I think I took or made 7 or 8 phone calls before we got out the door this morning for the blood center. Today we left at 11, and got back around 2. I challenge ANYONE to beat that time! That included stopping at church to switch out wheelchairs, make the mortgage payment at Harris, get to NW, park ALLLLL the way up on the 10th floor (Louis Armstrong in case you were wondering), get him in the wheelchair, motor over to the blood center, sign all the legal papers, draw a CBC, clear all 3 lumens (1 is clogged, the tech had to page hematology on that one), administer premeds, hang the platelets, validate parking, motor him back to the gargage, and drive home. Oh yes, I also called the home health nurse as we left to come after 3 to hang a "k & mag rider" (potassium and magnesium) with a pump which was delivered (please refrigerate) at 8:30 last night. And I became "the Mayor" of two more locations on FourSquare, probably lost most of you on that one.
Here's the deal. *Normally* you would not discharge a patient until their labs were "stable" or "good" and those results must be in a trend...preferably the same or better. However, that puts everyone (Blue Cross, Northwestern, the docs, and us) in a position of having Steve stay in the hospital on an inpatient basis SOLELY for daily platelets and a less frequent blood transfusion.
Yesterday we had clinic, and his hemoglobin was an Academy award-winning ELEVEN. I don't think it's been that high since I've known him. That was after just one bag o' blood on Tuesday; he normally goes up one point for one bag, so he went from 8 to 11, very impressive. His WBCs were about the same, 3-ish, but the damn platelets were at a scary 5. He got a bag yesterday and then we began the policies and procedures nightmare of getting special order "irradiated, leukocyte-reduced, WASHED platelets." He needs them EVERY day. Northwestern's blood center is closed on weekends.......you cannot get product at home.....(actually, I found out you can, but it sounded worse than what we were already dealing with, and safety is our #1 concern right now....grrrr).
Kim S. (bless you, bless you) is advocating for Advocate, ar ar ar, and has made many connections on her end at Christ Hospital with the head of their blood bank and other people with large incomes and impressive titles to help Steve transition to Christ for "fill-ups." Their transfusion center IS open on weekends and is 5 minutes from our house. That's a win-win. Of course, this takes both hospitals coordinating and communicating. I feel it will happen, and our stress level will downtrend.
Dr. Altman is pleased with Steve's progress. She and Dr. Mehta conferred twice already this week about the next step. Steve will have another CT scan on Monday at NW to assess splenic function. They keep hoping the two embolizations were enough.....a third is still in the cards as long as the platelets are being inhaled. I compare his spleen to a diabetic set loose in a candy store. Nom nom nom, thanks for the platelets! The good news is that his risk of bleeding to death from his spleen erupting is pretty much gone. He slept well last night and ate a sloppy Joe (and a pickle, please) and a small bowl of ice cream at bedtime.
Tomorrow we have a 2 p.m. appointment in the Blood Center at NW, and hope he will feel even better. He sat on the couch the entire evening tonight, watched tv, and conversed a bit with friends that stopped in to say hi. He also ate some KFC, his request. His appetite just isn't there at all, and I am hoping as his counts come back up that he will get hungry. It's very frustrating for all involved.
Molly came home a day early for the weekend, so he is thrilled to have her home for a few days.
Sue
Sue
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