Table of Contents
Late to Go To The Hospital and Have My T-tube Placed
I’m supposed to be getting my T-tube placed at Mass General Hospital today, so I was already anxious before I went to bed, then I started waking up every few hours to make sure I didn’t oversleep.
I finally woke up at 6:45 in a complete panic, neither of my nurses were in the room, I wasn’t dressed, I hadn’t had any meds, the Hoyer Lift was in the other room, and I was running two hours behind.
I called my mom and she realized that she had messed up on the schedule. My nurse Grace was supposed to work until 8 PM, and have me all ready to roll right into the wheelchair van for 8:15 to 8:30 AM. My mom never put that on the schedule, so Grace worked her normal night and didn’t do anything extra.
By the time Grace and Jaimie arrived, it was already 8:00 AM. They sprang into action and somehow Jaime managed to get me to the hospital on time.
How to Run IV Bags In The Car On The Way To The Hospital
The one issue we were worried about was my intravenous bag of seizure medicine. It runs on a stationary pump that is huge. It never leaves the IV pole. But Jaimie came up with a brilliant idea on how to run the Keppra in the van. Take a look!
Extreme Pain Triggering Me to Call 911 On Myself
You will not believe what is going on with me. I had my T-tube placed, but they put it in the wrong spot and all it drained was blood. I was also pooping blood, and there was blood in my catheter bag and g-tube bag. In addition, I was in severe pain and couldn’t stop crying and screaming from the pain.
On Saturday night I called 911 on myself. This is something I never do, because I hate my local hospital, but I was in so much pain that I couldn’t stand another second of it. At the hospital, they did a CT scan and I could barely tolerate laying on the bed. They said that nothing was wrong and sent me home. I didn’t believe them. I was in too much pain to believe them.
Carl Drove Me To The Hospital on Christmas Day
Christmas morning Carl drove me up to Mass General Hospital to get evaluated. He knew if I had called 911 on myself there was something seriously wrong with me. Even though it was Christmas, he was worried about losing me. If the pain was so bad that I had called 911 on myself there was obviously something wrong. The ride down to Mass General Hospital was excruciating, but they got me in a room pretty quickly and drew my blood. My blood counts were dropping dramatically. They immediately CT scanned me again.
The results did show that the T-tube was in the wrong place and was the source of the bleeding. The GI surgeon team immediately recommended that I get the whole tube removed and that I get my gallbladder removed as an open surgery so they could see if there were any other issues going on internally.
What Happens If You Code In the Recovery Room of the Hospital and You Are DNR/DNI?
I am officially DNR/ DNI (Do Not Resuscitate/Do Not Intubate). The results of resuscitation are too painful, and I figure I probably wouldn’t live through them under normal circumstances. However, surgeons won’t operate on someone who is DNR/DNI, especially because you have to intubate (put a breathing tube in them) to do surgery. So I sigh a paper saying I am suspending my DNR/DNI status before every surgery.
Well, I signed that paper and went into surgery. Surgery went well, but then in the PACU (Post Anesthesia Care Unit) I stopped breathing and my heart stopped. It was a gray area. I was between surgery and the unit. Should they resuscitate me or not? What was the most ethical thing to do?
They Called My Mom From The Hospital After I Had a Cardiac Arrest In the Recovery Room
They had to call my mom who is my health care proxy and ask her what to do. My mom told them to intubate me again and do everything they could to get my heartbeat back. I am so relieved. They got me back.
I was transferred to the ICU for a while. Now I am on a regular floor but I have received 4 units of blood between now and the ICU and am still putting out lots of bloody stools even though they saw nothing on the endoscopy.
I am in a whole lot of pain despite getting over an mg of Dilaudid every three hours and IV Tylenol in between. Every time I try to move at all my whole torso hurts so badly. This is such a miserable experience.
The Hospital Loaded Me Up With Blood Transfusions and IV Fluids
I thought you guys might want an update. I have been moved out of the ICU, and now it’s all about healing. We are trying to minimize my pain so that my body can restore itself, but at the same time we are trying to decrease my pain meds so that I can get closer to where I need to be to go home.
So far I have had a total of 4 to 5 units of blood this hospital stay and huge volumes of fluid. They were hearing crackles in my lungs. I gained 10 kg from when I came into the hospital until I got to this floor. That’s 22 pounds. So they have been giving me mega doses of IV Lasix to get the fluid off. I only have four more pounds to lose to get back to my baseline weight, although my baseline weight was severely underweight. However, all I am losing is the fluid weight that wasn’t supposed to be there in the first place.
They think the internal bleeding stopped and that the only reason I am still having bloody stools is because my motility is so slow it is just getting the rest of the old blood out. The endoscopy showed no issues.
What a Way to Roll In The New Year At The Hospital
As far as pain control goes, originally I was on 1.5 mg of IV Dilaudid every three hours but we are slowly reducing it until I get to 0.8 mg IV Dilaudid every three hours which is the equivalent of what I am on at home. Today was my first day of 1 mg of IV Dilaudid every three hours and it was really rough, but I am trying to tough it out.
My mom has been an amazing support and I am so grateful to have her help, I never would be able to handle this without her.
What a way to roll in the New Year though.
Showing Some Signs of Progress
We’ve gotten my Dilaudid dose down to 1 mg every 3 hours, my blood counts are improving, and I haven’t had any more seizures. This is all great news that shows that I am headed in the right direction.
I just wish I wasn’t so sick and didn’t have to deal with all this stuff, but God gave me this burden for a reason and I have to remember that.
He wants me to use my writing talent to share my story with the world to break down stigma, spread awareness, validate others going through similar situations, instill hope in the hopeless, and inspire everyone that they can push through almost anything and still get to the other side with a smile on their face.
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Partial Hospitalization Program and Trauma
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Going Downhill In The Hospital Again
Things aren’t going that great for me. They were going to discharge me last week, but I was in severe pain. I’ve learned that when I am in severe pain there is usually a reason for it. I tried to speak up but no one was listening to me.
Finally, while my mom was visiting she helped me speak up for myself.
They listened.
They compromised with me saying that they would order labs and if the labs were out of whack they would order a scan.
My Liver and Lungs Are Filled With Fluid
My liver labs were awful and my inflammation labs sky high.
They ordered a CT scan and it showed fluid around my liver, a stuck gallstone and fluid around my lungs. They upped my pain meds and contacted the liver team. I just had an MRI today.
They had to put me under anesthesia because otherwise I wouldn’t have tolerate lying on a hard bed inside a scanner for 45 minutes. I had a lot of trouble coming out of the anesthesia.
My condition has taken a turn for the worse. My liver is not doing too well, and neither are my lungs.
Here’s an update. I got two drains placed and now am in incapacitating pain. The complex care team increased my Dilaudid to 1.2 mg every 3 hours but refuses to increase it any further.
There is blood draining out of my biliary drain tubes and there is so much of it that I may need a blood transfusion soon. Right now my hemoglobin is 7 and my hematocrit is 20. Depending on what it is tomorrow morning when they draw my blood, we will see what they decide to do. They already have my blood typed and cross-matched just in case.
We are waiting for the results of the cultures they took from the blood draining out of my biliary drainage tube. The fluid draining out of my biliary drainage tube is the fluid around my liver that they saw on both my CT scan and my MRI.
The cultures will tell them what kind of infection I have and what IV antibiotics they need to treat it.
I finally got that blood transfusion. My hemoglobin dropped to 5.9 and my hematocrit to 16. Normal hemoglobin is 12 to 16 and normal hematocrit is 35 to 45.
They also finally upped my pain meds to 1.3 mg every three hours for a few days but now we are trying to back down on them even though I am still in severe pain.
Turns out that I was on the right antibiotics, my white blood cell count came back down and my inflammation labs are retreating. Plus I am putting out less drainage in my drains. I am not out of the woods yet though.
Interventional radiology wanted me to keep my drains in for another three weeks and eventually go home with them, but Complex Care is trying to explain to them that that is a really bad idea because I live three hours from the hospital, and if something happens things can go down fast on my way down here and I still can’t get here any faster in my wheelchair van.
Instead, we are hoping to do a CT scan and see if the fluid is gone from around my liver and if it is possible, remove the drains so that I am also closer to going home.
Complex Care also wants to change out my suprapubic catheter under anesthesia as I have a fungal infection in my bladder.
I am just completely exhausted and part of me keeps saying that all this isn’t worth it and I should just choose hospice. The other part of me needs to see “Changing Destiny’s Destiny” get published too badly.
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I’m finally supposed to go home tomorrow, as long as my body doesn’t throw any more curveballs. We had a slight one today, some fluid around my lungs, but the Complex Care doctor ordered IV Lasix for 3 PM and that should take care of that. Now we just have to hope that it doesn’t pull down my potassium levels too low for New England Life Care to approve my discharge.
I think that as long as the Complex Care team approves it, then I’m good to go anyways.
Since I last wrote a lot has happened. I got my last drain removed Friday of last week (yes they changed their minds). They decided it was just sitting in a blood clot that would reabsorb itself as time went on. Then. Saturday my liver labs spiked and they spiked so high they couldn’t safely let me go home. Later on that day, I developed a fever of over 103. My white blood cell count shot up as well. Suddenly they were rushing in doing blood cultures and sending me down for a CT scan.
The CT scan showed that the reason the drain they had just removed hadn’t been draining much wasn’t because I just had a blood clot left. No. It was because it had been in the wrong location. I had a whole bunch of infected blood pushing on my liver. I was immediately scheduled for surgery to have a new drain placed.
This new drain immediately drained out 350 ml of infected blood, then kept draining. I am going home with the drain in place for two to three weeks and will be on IV antibiotics for another week and a half at home. I have lost even more weight.
I can ‘t wait to see Carl and Grace when they come pick me up to bring me home in my wheelchair van tomorrow! Plus when I go home I get to see all my bears!
A Botched Surgery
As many of you are wondering, this is how my appointment at the hospital went yesterday. They did the CT scan and it showed that the fluid collection around my liver is now only measuring 3.0 x 1.8 cm. Before it was measuring 8.3 x 7.6 cm. So then I got the okay to go into surgery and get the drain removed and get my GJ tube changed.
Now a week earlier I had spoken with pre op on the phone and explicitly told them that I needed an MIC GJ tube, not a Mic-Key button, but an MIC tube. She thanked me for telling her a week in advance and told me they would order one in a size 22 gauge with a 7 to 10 ml balloon.
Well, it took me 4.5 hours to wake up from the anesthesia and when I did wake up I was still really groggy as the recovery room nurse explained to my charge nurse how to use the tube. It did register to me that the tube wasn’t a MIC tube but I figured as long as it worked I’d be okay.
It wasn’t until I was in my wheelchair van on the way home, when my nurse pulled over to give me meds that I discovered that my tube was actually a Mic-Key button. Mic-Key buttons are notoriously bad for draining. My tube has a kink in it and barely ever drains if I drink because there is a kink in it. All of my meds need to be crushed up extra fine, the site is killing me and keeps leaking, its a whole big mess. I can’t stand it. And interventional radiology says I can’t get it changed this week. I just want to bury my face in my pillow and cry.
About Me
Freelance Author and Professional Patient
Despite my terminal illness and childhood onset schizoaffective disorder, I have earned a BA in writing from Elms College and published two full length young adult novels designed to validate, inspire and instill hope in the world of chronic physical and mental illness and the entire community that supports us
Chronically Alive Blog Posts
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