This blog title was a direct quote from today's day nurse, Nicole. This Sunday was truly a day of rest and healing. This has been the longest week of my life. This update is an anthology of e-mail, photos and text messages (in italics) from the past seven days that were sent to immediate friends and family.
Sunday, March 6 recap sent to friends:
Steve has been an inpatient since 2/21 for (suspected then confirmed) graft versus host disease of the gut, a very very common complication of stem cell transplant. His general demeanor changed as last weekend approached. Sunday afternoon he took a turn downward in Prentice and the Rapid Response Team was called in. His blood pressure was 72/35. After assessment, he was very quickly transported to Feinberg via the tunnel system to Medical ICU. I held up okay until I saw the defib paddles and was told "we don't wait for Transport, we're going now."
As always, we were very well informed when we arrived at the ICU. They needed more lines to access his circulatory system in addition to all his PICC access. We were told that a ventilator was an option, and probably a good one in order to rest his body from all the shock of "freaking out." They attempted to insert a neck port for more line access, it didn't go well (vomiting, blood, etc.) so they made a move at 2 a.m. Monday to vent him and then put in the neck line. He had 4 IV stands/3 were doubles, and 10 pumps going.
It was at this time that I was asked by the staff if I wanted to speak to a pastor.
We are to believe it is septic shock. It's been a whirlwind. They have done massive testing and today we are seeing improvement. He has been on a respirator since that time.
We are VERY hopeful that he will come out of the sedative and be able to recover without major organ damage.
I am HOPEFUL.
Tuesday, March 8, 2011 9:20:36 AM CST
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| Ventilator monitor |
I just spoke with Steve's nurse Katie in MICU.
It seems the way they manage a lot of their patients is to take them off a drug and see what happens, or dial it down a notch at a time and see. She told me they have taken him *off sedation* and she's monitoring him closely to see what happens, but that he is still pretty out of it.
The "pressors" (drugs that artificially elevate blood pressure) are down to ONE from three. That is a HUGE, HUGE deal!! When I was there last night, he was still on two drugs, and the night nurse was tweaking one down. So now he is only on one at level 13 out of a possible 20, so they are certainly moving along!!!!
I got home around 4 yesterday and was back on the road at 6:30? From the time I got home at 4 until the time I got in the car to go back downtown, I had received a call from a Radiologist about Steve's gall bladder image from yesterday afternoon's CT scan, description of a procedure they wanted to do immediately, and verbal authorization to begin shortly. My friend Karen and I went directly to Interventional Radiology when we arrived and Steve was already in the procedure. So now he has a drain, and by the time we left the retrieval bag was full of what appeared to be maple syrup or perhaps a nice beef au jus. A LOT of liquid.
God bless these wonderful nurses!!!!!! They are keeping him very clean and very organized, he has a LOT of lines. When he arrived, one of the things that jumped out at me was a comment like this, "oh my gosh, no way do we have enough lines for him." Mind you, he had a triple lumen PICC line, and they can connect branches to each of those.
The PICC was removed yesterday, snipped and sent to the lab for assessment for infection. So he has a port now in his neck, and there is a network of amazing lines and connections coming out of that. In addition, I think he has 4? IV lines in his right arm and wrist, all with branches.
His arms are both swollen, they did ultrasound imaging to see if he had any clots. He is taking a LOT of fluids, so some of that may be due to the IVs. His ankles and feet are great. They removed the TPN (food bag) and lipid bag. I was told 3 different times since Sunday that often the TPN can introduce infection. That would explain, at least to me, why Steve was never given liquid nourishment during chemo or post-transplant, seeing as he was neutropenic to begin with!
Katie also said they have "room" to give him more IV fluids if needed, as that also boosts the blood pressure.
Let's hope for some more great improvements today!
Tuesday, March 8, 2011
Was here for rounding and also spoke to GI guy. Dr Kamp, Attending, said today is a good day for Steve. Going to give him platelets to stay ahead of the bleed. GI guy told me the GvHD is stomach, duodenum and intestine which was Dx on 2/28 and I never heard that about the upper parts! So basically they are going to restart the TPN (food) tonight in his new PICC line, antibiotics are working, taking a pass on scoping as there isn't anything that could be fixed by that. Could be a day or two before the GI bleed stops. Did hear a bit of talk about surgery down the road....
breathing over the vent here and there, larger volume too
Norovirus positive
Wednesday, March 9, 2011 12:06:51 AM CST
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| Bile draining from gallbladder |
Good lord, so much to report, I'm resorting to a bulleted list. First and most important of all, NO bad news.
Blood pressure meds, pressors, reduced from 3 to 1 hanging. The one still hanging (max value of 20) dialed down from 13 to 10 to 6 today. That is hugely good.
B/P was 105/55 when I left. His normal B/P is 120/60 or so.
Body temp was a tad elevated at 99
Both arms and hands swollen, but not cause for concern. He does have a clot in the left arm but again, no big deal according to his nurse.
Urine output good, hanging more IV fluids. They discontined his Desferal (that iron overload drug) so he no longer has red pee. (Note: Were told later that Desferal could contribute to low blood pressure) Oh yes, wasn't that lovely.
Hung IVIG and Albumin (look it up)
Steve's WBC (white blood cell count) had shot up to 29 (hellooo, infection anyone?) yesterday (?) and was back to 10 today, which is normal for a normal person. That's good, right?
He was breathing consistently OVER the vent, with good full volumes of air.
They took his sedation away this morning, it is not unusual for it to take 24 hours or more for them to gain consciousness. He lifted his arms a bit and tossed his head to the side and back. They do not want him waking too quickly, and want him to just rest tonight. He DID respond to Nurse Mariah's command to wiggle his toes :) Bob will stay in the room with Steve tonight and be there for him if he gets restless.
Tomorrow they will do some vent testing to see if he can wean off the vent. I was a bit baffled at the explanation, it is ALL new to me. Sounds like they do this n that, watch the monitor, see if he can sustain himself, test some more, bla bla, then remove some of the airway assistance. Dr. Altman (called me tonight) said she noticed this morning that he was trying to breathe through his nose, which is very good.
Now, the source of all this trouble. So far we do know this: He was positive for GVHD of the gut, negative for GVHD of the liver. He does have Norovirus (common cold). The source of this infection causing the event of Septic Shock, is believed to be from an infection in his gallbladder. It is a type of bacteria called G-Neg or Gram Negative. I came home and did some quick reading, and a lot of things start making sense. His PICC line tubing tip tested positive for G-Neg bacteria, which would make sense if that was has been running systemically in his body. The gallbladder infection culture was G-Neg positive. How the gallbladder got like this is a mystery, but I think it must be similar to my sewer situation. You close down the main pipe (splenic artery) to 20% from 100%, and all that shit can't get to the sewer (spleen). So it backs up into the shower, the tub, and makes everything possibly toxic. LOVELY ANALOGY, SUE. The GVHD must also come into play, and I feel that all this inflamation and immune system responses just ramped up his medical situation. These are all my opinions. Dr. Altman feels that the gallbladder is the "source" yet it is a chicken or the egg scenario. Have I lost you yet?
I personally think Steve has been plotting to throw us off the trail of removing the spleen by blaming the gallbladder. He is playing possum on the vent and hoping we forget about his spleen.
Now. THE DRAIN. I'm a bit interested in what is coming out of the gall bladder. Bob, thank you for humoring me. A "normal" gallbladder is 8cm (about 3") x 4 cm, with 50ml of bile inside. Steve has already put out 300ml TWICE since last night at 7. They told Bob that Steve's gallbladder was greatly extended and thinly walled. (YIKES, almost blew out??!!).
He is VERY VERY well taken care of by the staff. They bathe him daily, keep the bed at a 30% up angle (got to hear about scientific, supportive data), and cleanse/suction his mouth and airway at *least* every 4 hours. The room is immaculate, orderly, and supplied with all he needs.
Thursday, March 10
Generally a day of gains or evens. His vent test went exceptionally well, he was breathing unassisted for at least an hour. Note: It was really more like 3 hours, I was getting nuts. They plan on testing/strengthening again tomorrow. He is more attentive, opening his eyes and looking around. Nodding and squeezing hands. Fidgety. BP is around 120/65, hemoglobin went up during the day without transfusion. Some GI bleeding still but not cause for major concern. Giving Amicar to ward off bleeding and platelets. Started TPN nourishment. I think his right hand is much less swollen. We are all taking the night off at hospital. Staff diplomatically said that less stimulation would be a good thing overnight.
Friday, March 11
Steve passes a second breathing trial and I get a cell call on my way down that his "extubation" will be within hours. As Megan and I arrive at his door, two Respiratory Therapists wave at us and go WOOOO! out it comes! Steve is in a sitting position in his hospital bed, and speaks for the first time since Sunday. He mentions cows, and rather loudly. We have been schooled in delirium since then, "it's called ICU."
Saturday, March 12
He mentions cows again.
Just checked in with Steve's night nurse. He is very comfortable and is sleeping. His vitals are GREAT and the mild diuretic is really cranking out the excess fluids. Plan is no plan, just rest.
Here is a view of his right hand on Saturday, weeping from fluid overload. The yellow tint is from elevated bilirubin.
Sunday, March 13
I am pleased to see the swelling in his arms and hands is GREATLY reduced. His urine output is 75-100ml per hour. Bilirubin (total) is 23.5 and holding fairly steady. No one seems alarmed by that. He is yacking up his old cold with a productive cough, as they say. He has a magic phlegm-ball wand/Swiffer/Dyson thingy that makes a sound that even I cannot tolerate.
What a difference 24 hours makes with diuretics.
Tomorrow he will have a swallow evaluation that will determine if he can take clear liquids, like broth, popsicles, etc. After that, we are hopeful he leaves the ICU for a less acute care area.
I leave you tonight with one of many good things that came from this wild week. Molly and I made a late night run on Wednesday to a local 7-11 in pursuit of "tiny wines" as my sister calls them. We didn't find them, but a suitable substitute. After requisitioning a few plastic glasses from the hospital cafeteria, we settled into the MICU Family Room Lounge for a great talk and some cheap wine. Then we rearranged the furniture.
