Another night in the ER, the second time in as many weeks due to surgical complications.
As noted in previous diaries:
Friday, Nov. 18 My wife is very ill - Emergency pooties requested.
Wednesday, Nov. 23 Hospital Wristband for the Holidays
To our mutual surprise considering she had a rough night where I had to pull a Steel Magnolias to get pain meds and a muscle relaxant for a back spasm, the hospital actually did release her the next morning - Thanksgiving day.
Her surgeon came into the room in the morning, did a brief exam, talked with Mrs. Hive. Then, to the shock of the nurses in the room, helped put on her hospital socks, and escorted her up and down the hall. He then asked if she'd like to go home that day.
After being in the hospital that time for 8 days, 4 of which she was intubated, she just wanted to get the hell out of there. So of course she said "yes".
I was already on my way up to the hospital to visit when she called me that they were discharging her. I nearly drove off the road.
The discharge took a few hours, and by the time they had all the paperwork done it was nearly 3 in the afternoon. Of course, since it was Thanksgiving, the hospital pharmacy was closed, and I knew for a fact that all the pharmacies in our town (2 hours away) were already closed. This didn't seem to cause much concern to the staff, but at least they told us there was a 24 hour CVS somewhere nearby where we'd just have to hope they would have all 7 RX in stock, and would not have a long wait, and would allow me to pick up the order because I was the only one who had identification (while waiting, I witnessed a middle-aged lady who was waiting for her meds get turned away because she didn't have a government issued ID).
Fortunately they did, and it was only a 30 minute wait, and they accepted my ID for pickup.
That was on the 24th. Last night, the 27th, she started oozing around the stomach tube in much greater quantities than before. The discharge rapidly changed consistency and volume within a couple of hours, soaking through the initial gauze, then through 3 doggie diapers (thanks, Chester!) in rapid succession.
I called the hospital and finally was put in contact with an on-call surgeon, who was pretty much saying that some discharge was to be expected, and that the volume could vary through the day.
I could see where he was leading this conversation, that we should see how it goes through the night, but I was through with these shenanigans and told him that I'm a layman and this just does not look right. I'm bringing her in. He was pretty non-committal as to where I should go - I said that we weren't going to risk the 2 hour drive with shit coming out of the tube incision and we're going to the nearest ER 20 minutes away.
Within 15 minutes of checking into the local ER, we were in an exam room with a nurse cleaning and changing the dressing. The discharge at this time was now looking and smelling like baby poo, and every movement spilled out more and more fluid.
30 minutes at the ER, and they were pulling a blood panel and wheeling her into the xray.
The ER doc says that this is not his area of expertise, but was not liking what he was seeing. He wants her back at the original hospital ASAP, and gets the ball rolling with contacting the other hospital, making sure she is directly admitted and arranging an ambulance transport.
So now, the missus is back at the hospital ER for the second time following her original gastric bypass getting tests done for the next few hours.
I'm doing some emergency laundry and housecleaning because in my 2 hour absence, the dogs somehow got into the refrigerator did some panic eating (2 pounds of meatloaf, a gallon container of baked ziti, and some other random snarfing. Darwin and Rufus are all bloated, left me some diarrea throughout the house and puked and peed in various spots.
Meanwhile my father-in-law, who we live with, has COPD and herniated discs, so he requires a lot of day to day support and cannot handle the dog situation, and Rufus is still a "red-flag" case, where he cannot be trusted with strangers, so all the dogs have to stay inside while I go out. Which I'm going to do as soon as the dryer finishes the load, I set up my F-I-Law with breakfast, lunch, dinner, ensure he has extra O2 tanks in case the power goes out, try to get the dogs to go out and evacuate some more of the horrorshow that must be brewing in their guts, then gas up the car and drive the 2 hours all on a 45 minute cat-nap fueled only by 2 quadruple espressos and cigarettes.
This time, she's not going to be left alone for a minute while they're doing something more than an MRI, as this facility has a real problem with communication and coordinating a medical plan continuum of care. I'm going to be a very vocal and demanding healthcare advocate to counter the haphazard care we've experienced at UVA Medical Center.
I'm more scared and freaking out (I'm subject to anxiety attacks that is resistant to the usual meds and my ADD causes me to focus on inconsequentialities while my PTSD can freeze me in my track or rev me up to a point where I have to consciously with great effort, sublimate inappropriate social interactions.
Sorry, just needed to get this out of my system so I can function to the best of my abilities and put objectivity as my default state of interaction.
But I am so confused, scared, angry and worried with this on top of my stress and lack of sleep aggravating my chronic pain (which on a side note, had received the wrong Rx at the pharmacy, and the pharmacist has been hounding me to come in and exchange the meds so he can cover his ass for his screw up. But only on his schedule, without much sympathy for my situation of not being able to take the time to come in for the exchange.) It's not much of an objective difference - he gave me short lasting Oxycodone instead of my usual timed-release. Same strength, just longer lasting.
rant over, must get dressed and hit the road. Thanks for your prior support through this,and a reminder that everytime you have a loved one or a friend going through a hospital stay - they need to have a healthcare advocate on their side to act as a second pair of eyes, and to ensure that they are receiving the absolute best performance from the medical team - to be the patient's voice and will when they are in a vulnerable state.
Thank you kossaks. Please comment, email or message or tweet if you have any suggestions as to what more I can do to ensure the best outcome.
UPDATE (sort of):
First of all, thank you for allowing me to vent and your kind thoughtful responses.
Right now Jen (Mrs.Hive) is with the angio consultant to get a PIC line after they take her for an MRI. Seems like there are a lot of pockets of edema exerting painful pressure all over. Will start on the game plan once they go and do their thing - getting a better idea of what's going on inside.
Unfortunately, our situation is a bit confusing. We're in South Central Virginia, fairly isolated, and of all relatives available:
Aunt: Somewhere in Paris on vacay. Not that she'd be very useful anyway
Mother-in-law: In New Jersey/NYC, Has huge home commitments and despite best intentions, will only add chaos and stress.
My Dad: Kansas City - unavailable due to medical reason
My Mom: Jonesport ME. - she also has myriad health problems, and though she'd throw herself on a fire for us, would do so as a detriment to her own health.
Cousin James: San Francisco area, has young child, but might be the best for a quick respite.
We really don't have neighbors or friends, and the home situation mechanics are lamentably difficult with the dog situation - this is not for amateurs to handle 4 dogs, 3 cats (one of which is absolutely determined to escape into the woods).
This is doable, it's just one of those things where you dig in and do what is required.
One of the major demands we are making in terms of patient directed care, is that under no circumstance will Jen be intubated for a prolonged period while she is fully aware of the tube. She's fine with getting knocked out, have them do their stuff, and then be extubated ASAP, and no nasal to stomach tube under anything short of life saving measures.
Basically, have them do what they absolutely need, as fast as they can, and get out of there.
8:56 PM PT: The big problem is fluid buildup around one lung which makes it hurt to breathe - a plural effusion.
Most of the problems are due to pockets of fluid and seepage from the epigastric tube. There is a possibility of a recurrence of sepsis, but seems far less likely as they are proactively addressing potential problems.
The game plan is to get rid of the excess fluid over the next few days either by sucking it out or peeing it out. The baby poo seepage from around the stomach tube has decreased in volume, and they're now going to focus on the various areas of excess fluid.
They're giving her many different drugs for pain, working for an ideal balance of effectiveness and proper dosage, but she is getting the good stuff now for sure. I'm still going to push hard for an actual pain management consult, and I was able to convince her surgeon to use the Duragesic (fentanyl) patch on her. This was the same stuff I used to take, and it is great for providing a steady base level of pain relief, so that she doesn't have to take pills every couple of hours through the night just to stay ahead of the pain.
The patch also has the benefit of bypassing her compromised digestive system, as it goes directly into the bloodstream and doesn't need the GI tract to metabolize and be effective. Plus she'll still have access to adjunct meds for pain, but all should be subsiding as the swelling goes down.
I've also had to sit on them to make sure that her glucose levels are being monitored and modified since a pseudo-diabetic state can set in as the body fights a long-term infection. Once again, they seemed to have let that sort of slip by without due consideration. Additionally, I had to remind them of prober adrenal functions and levels for the same reason.
So, that's pretty much it in a nutshell. She's going to be in for a few days at least, and there's no way in hell that I'm going to let them discharge her without some serious guarantees.
Ok, I've been up 40 hours, I'm going to hit the bed - nothing big is going down tomorrow, so I'm going to try to chill for a few hours before going back up to the hospital.