Making my first Thanksgiving meal

During my first year attending college, I decided not to come home for Thanksgiving. I only had a four-day weekend, and it would take two full days to travel home. Additionally, it was near the end of the term. In three weeks, I would be home for semester break. Not wanting to spend hundreds of dollars on travel to enjoy just two days with my family, I opted to stay on campus.

Not having anywhere to go for Thanksgiving, I asked the residence hall association for my dorm if I could cook Thanksgiving dinner for the hall (and have them foot the bill). They gleefully agreed. The association did not mind spending money on food if I was willing to cook the meal. At this moment in time, I had not cooked much. I could make instant mac and cheese, Ramen noodles and heat up hot dogs in the microwave. How much more difficult would it be to make a Thanksgiving Day meal? You just had to put the turkey in the oven, open some cans of veggies and heat them in the microwave and throw some brown and serve rolls in the oven for a few minutes. This should be a breeze! What could possibly go wrong?

I go the day before Thanksgiving to the grocery store to buy the necessary food items. I buy a fresh turkey because I did not want to deal with thawing a turkey. When I arrive back at my dorm, I store the refrigerated items in my resident hall director's room since he is the only person in the dorm who has a full size refrigerator. I tell the hall director I will be back the next morning at 9 a.m. to retrieve the food to begin making Thanksgiving dinner.

The next morning, I arrive at the residence hall director's room. He does not answer. I knock and knock. I wait and wait. Finally an hour later, he answers the door. He had been sleeping and then got up to take a shower. He did not hear me knock. When I get the turkey out of his refrigerator, I am horrified! The hall director stored the turkey in the back of his refrigerator next to the wall. This caused the fridge to run cold and partially froze the turkey!!! I grab all the food and run downstairs to the shared communal kitchen to begin making the meal.

I do not know what to do with a partially froze turkey. I turn on the oven and attempt to check the turkey for any giblets inside its cavity. However, the turkey has metal wiring which ties the legs together and makes accessing the turkey cavity nearly impossible. Since the turkey is partially frozen, I can not loosen the metal wire. I visually scan the turkey cavity for giblets. Not seeings any, I throw the turkey in the oven and hope it would get done quickly.

A resident assistant (RA) helps me prepare part of the meal. She knows how to make mashed potatoes. She prepares the potatoes. She then uses a metal potato masher to mash the potatoes. As she is mashing the spuds, she notices there are black flecks in the potatoes. She thinks it is odd as she did not add any pepper. She continues mashing and more and more "pepper" seems to magically be added to her dish.

Two hours after we were supposed to have had Thanksgiving dinner, the turkey is still in the oven. I am exhausted, and the dinner guests are very hungry and crabby. I take the turkey out and hope at least part of it is edible. When the RA empties the pot of her mashed potatoes, she realizes what the "pepper" is. It is flecks of Teflon from the cooking pot the metal potato masher scraped off as she was mashing the spuds. The RA asks me what she should do. I reply, "It's late. We do not have any more potatoes. Just add some pepper to them. No one will know the difference." The RA takes my suggestion and adds some pepper to the dish.

When we serve the meal, I am in charge of carving the meat. Thankfully, the basement has very dim lighting. People cannot see the turkey is very under cooked. I carve a little ways into the breast, and the meat is raw! I then start cutting from a different area of the bird.

I do not remember if anyone actually liked the meal. Everyone was very tired waiting so long for the turkey to cook. I ate only a little bit.

When the food is returned back to the kitchen area, the RA and I start cleaning the dishes and putting away the food. Since the turkey is now thawed, I can finally remove the metal wire holding the legs together. When the wire is removed, to my shock, there inside the bird is a bag of giblets!!! I remove the bag and place them in the pan along with the turkey. I place the turkey back in the oven for several more hours to finish cooking.

At the end of the experience, I learned many things. First, and foremost, give praise and thanks to those folks who prepare Thanksgiving dinner. It may seem like an easy feat, but many, MANY things go wrong. Also, never give up. Although this was my first time preparing a meal for a gathering of people, it was not my last. I have since made many meals for others and enjoy the challenge of making a large quantity of food. And lastly, laugh! Whenever I prepare a chicken or turkey, I ALWAYS check for giblets. If I cannot access them due to metal, plastic or string tying up the legs, I always get rid of these hindrances and put my hand into the bird to feel for any surprises inside.

May this day be blessed and be filled with lots of love, laughter and properly cooked food. Happy Thanksgiving!

Part Seven: People come, people go. I don’t want a scan.

After my traumatic health crash in the emergency department (ED), the rest of the night is rather uneventful. I have several roommates float in and out of the bed next to mine. A woman arrives via ambulance who had several seizures during the day. Although she was conscious in triage, she now is unresponsive. Eventually, she retains her faculties. As her body recovers from the seizures and seizure medication, the woman becomes frantic. She does not want to be in the ED.

“Get me out of here! I can’t be around sick people. Where’s my neurologist? He has been contacted that I am here. Why hasn’t he come to visit me?” The woman grows more and more agitated by the minute. When the female is told she is going to be moved into the hallway to make room for another patient, my roommate grows belligerent. The woman is rolled into the hallway. She subsequently leaves against medical advice.

Very shortly thereafter, another woman is rolled into my room. She has been stabbed in the leg. She was stabilized at another hospital and transported to this facility as it is a level one trauma center. A medical team surrounds the woman and quickly takes her medical history. A physician views the imaging done at the other hostpial. In a very short time, the woman is told she needs surgery. A nurse collects the patient’s jewelry. And in the blink of an eye, the woman is rolled out of the ED and into an operating theater.

My next roommate is a man who fell and broke a vertebra. The man has dementia. He cannot remember what the medical team tells him. He constantly cries out, “Help! Someone help!” When a nurse answers his pleas, she has to over and over again explain he has a broken vertebra. The patient complains he has to urinate. The nurse reminds him he has a catheter. He doesn’t need to go to the bathroom. Over and over again, this situation plays out throughout the night. The man constantly tries to sit up and tries to escape his bed. The bed alarm sounds; a nurse runs in to get him back in bed. Through this all, I am amazed at the patience of the entire medical team. They are kind and repeat themselves numerous times to the patient. Through all this chaos, I am able to sleep very little.

Around 4 a.m., I am taken to radiology to have a CT scan of my abdomen. I have objected to having the scan done for the last five hours. I am not feeling well, and I don’t want to be exposed to any more radiation. The overnight ED physician gets fed up with my excuses. She tells me I am going to have the scan. I am given a small dose of Ativan (a sedative) and am rolled just three doors down to the CT scanner. (I am shocked there’s a CT scanner in the ED!) A medical team slides me from my gurney to the CT bed. The scan is completed in a jiffy. I am soon back in my room.

Although I was very against having the scan, in the end, it was extremely useful. The CT scan of my abdomen included my lungs. The CT revealed I had diffuse infiltrates in my right middle lobe and both lower lobes of my lungs. The CT scan showed my pneumonia was much more severe and extensive than what could be seen on the chest X-ray. Again, I knew God was directing my care.


(Link to Part Eight, click here)

Part Six: Happy thoughts...please happy thoughts come to me

I sit in the emergency department (ED) shaking in pain, struggling to breathe and wishing someone would come soon! I can’t breathe. The pain! Oh! Everything is exploding in pain! Please someone help me!

My nurse had been in to visit me previously...how long ago was that? She informed me there was a shift change. The doctor would be in to see me shortly. The minutes tick by. No one comes. Oh please, someone come!

 

Finally, over an hour after shift change has occurred, a nurse in the hallway sees me through the open door to my shared ED room. She asks what is wrong. I can’t communicate. I point to my tracheostomy. The nurse asks, “You can’t breathe?” I shake my head yes. The nurse runs for help.

In an instant there are far too many people in my room. Fentanyl is ordered. My blood pressure is low. The doctor orders more fluids. A respiratory therapist suction’s my lungs. A doctor does an ultrasound on my abdomen and heart. A nurse puts a thermometer into my mouth. It reads 102.3 degrees. The pain is raging. I think I am going to die. My nurse gives me 50 of fentanyl. After a short while, my breathing starts calming down as my pain decreases. The medical personnel vacate my room.

As I sit in the bed, I can feel the fentanyl wear off. Oh the pain! It’s coming back! My breathing is growing ragged. My body starts back trembling again. Even though antibiotics are being administered, I can feel the infection raging out of control! I have a very elevated white blood cell count. The chest X-ray shows pneumonia.

“How long, LORD? How much more? Please send healing my way.” I attempt to read the Bible through pain. The book of Ezekiel is where I last left off my Bible reading. God chastens Israel for their disobedience. I allow the sorrow which wells up in my heart as I mourn for Israel’s lack of faith in God to melt with the pain radiating throughout my body. “Thank You, LORD, for your precious word. Amen.”


(For the link to Part Seven click here)

Part Five: Admit One: Pneumonia

As I wait for the emergency department (ED) physician to return with a treatment plan, I login to my online patient portal account. I click on my lab results page. Some of my blood work has been resulted. I scroll down to my white blood cell count. It reads 20.8 (A normal white blood cell count is between 4 and 10.). I am surprised my white blood cell count is so high, but I am also grateful that the blood work shows I am quite ill.

A short while later, the ED physician returns. He bluntly says, “You are going to be admitted.” In a feigned shocked expression, I exclaim, “Why? What’s wrong with me?” The doctor says, “Your chest X-ray shows you have pneumonia.” (I silently congratulate myself on correclty reading my chest X-ray. I also am relieved I will soon be on the path to better health.) The physician orders some more blood work. He tells me he noticed I look dehydrated. He is going to order some fluids. He also asks about my mitochondrial disease. “Do fluids help with mitochondrial disease?” I answer, “Yes.” He then asks, “Does sugar in the IV fluids also help?” I nearly fall off my gurney. This is the first time anyone has ever asked about giving me fluids and fluids with dextrose while hospitalized! I again answer, “Yes.” He says after he gives me some IV fluids, he will then switch me over to IV fluids with sugar. He then leaves and disappears into the ED chaos.

(Side note: The mitochondrial disease protocol for being in the ED/hospital is IV fluids and preferably IV fluids with dextrose (either D5 or D10 normal saline). Due to the stress of illness/injury, folks with mito need the extra support of IV fluids. Moreover, the dextrose helps maintain a constant blood sugar and helps the mitochondria produce energy while under stress.

When I first became severely ill, if I was not automatically placed on IV fluids, I would always ask for them. Usually the request was granted. One time I was even able to get D5 normal saline. As time has progressed, hospitals no longer place all patients on IV fluids. If you can swallow and are conscious, IV fluids are usually not ordered. Since this new protocol has taken effect, it has been very hard to convince doctors of my need for IV fluids while hospitalized. This is the first doctor I have ever had ask if I needed IV fluids or IV fluids with dextrose. The joy and relief that I will not have to force myself to eat and drink to maintain hydration and blood sugar levels makes my heart swell with gratitude. It is just another sign that God is directing my care.)



(For the link to Part Six click here)

Part Four: At the ED. Am I sick or will I be dismissed home?

After a few moments, the man at the emergency department (ED) check-in counter acknowledges me. He asks why I am here. I decide to not be straight forward. I don’t want to say I am having trouble breathing. My pulmonologist said I was not sick. If I indeed have a respiratory infection, I want to ED physician to make that call without being prompted. I am having abdominal pain. My pancreas is hurting. I know if I present as if I might have a panceratitis attack, I can get pain medication. If I say I have breathing problems, there is little chance of getting strong narcotics to help with my throbbing headache, stiff neck and generalized pain throughout my body. I tell the gentleman, “Abdominal pain.” He asks for my identification. He gives me a patient wristband and wheels me over to an outlet. He plugs in my ventilator and heater/humidifier.

I look around the waiting room and am relieved to see there are not a lot of people. I thank God that this means I will not have a long wait. A nurse calls my name. When she sees I am on a ventilator, she mumbles she cannot take me back to triage. She tells me to remain where I am. I wait about 30 minutes. In the meantime, other people are called back to triage. I notice that instead of using the front triage area, they are being taken down a long hallway to a far away room.

When my name is called again, the nurse triages me at the front station. She ask why I am here. I gasp for breath and state I have abdominal pain. Speaking causes me to cough. The nurse takes my vitals. The only reading I am concerned with is my temperature. I see the reading on the machine is 98.5 degrees. The nurse then sticks the thermometer into my mouth. It beeps. The screen on the machine never changes. It continues to read 98.5 degrees. I am fairly confident the machine did not take my temperature. I do not say anything as I know a fever with rapid heart rate and fast breathing will signal I am in distress. I will be pushed back immediately to the ED. I know God is directing everything. If the thermometer is not supposed to record I have a fever, it is God’s doing. The nurse scans her computer. The only open room is in the trauma center. She calls back to tell them I am coming on a home ventilator.

A medical assistant wheels me to the trauma center. As I enter the ED, I hear someone say, “What is she hear for?” Another voice answers, “Abdominal pain and shortness of breath.” The first voice says, “Not another medicine case. Why do they keep sending us medical cases?” The second voice responds, “She’s on a home ventilator. This was the only place available. We can’t leave her in the waiting room on a home ventilator.”

My ED cubicle does not have a bed. I am left in the hall while a gurney is commandeered. I sit in my wheelchair and cough up lots of thick yellow sputum. Medical personnel fly around me as they race from bed to bed. A male physician looks at me and asks the medical assistant, “What is she here for?” The medical assistant says, “Abdominal pain...” And before she can say anything else, the doctor interjects, “And shortness of breath.” (My rapid breathing is quite evident to the doctor.)

A bed swiftly arrives in the ED cubicle. I am wheeled into the shared double room and helped into the bed. (Before coming to the ED, I hid my PICC line under an Ace bandage. I did not want my PICC line to arouse any questions. My efforts were useless.) As soon as I take off my jacket, the nurse sees the Ace bandage. She asks, “Is there a PICC line under there?” Knowing God is directing everything, I say, “Yes.” She takes the bandage off and immediately collects blood from it. I am thrilled she is using my PICC line instead of poking me with a needle.

An ED physician starts asking me about my abdominal pain, but he is immediately concerned with my breathing. He asks me about my respiratory issues. He orders a chest X-ray, blood cultures, abdominal CT scan and fentanyl for the pain. I am in disbelief that I am going to be getting fentanyl. No one EVER gives me fentanyl, or I have to be screaming in pain for 12 hours before a tiny dose is given. This doctor is giving fentanyl without me asking or begging for it! Oh happy day!

I am given the fentanyl and am shocked I do not feel anything. Usually there is some sensation of the drug entering my system, but this time I feel nothing. The pain remains the same. Very quickly two radiology technicians are at my side preparing me for a chest X-ray. An X-ray machine attached to the ceiling is swung into place. A technician yells, “X-ray in use.” The machine hums and then beeps. My chest X-ray appears on a computer screen. I quickly scan the X-ray. It looks as though there is diffuse cloudiness in my right lung. Although I am a novice at reading X-rays, it looks like pneumonia.



(For the link to Part Five, click here)

Part Three: To go or to stay? What does the thermometer say?

When we arrived at the hotel, I am grateful to be away from the medical center. I eat a few bits of food, but I am very nauseous. My mom leaves to get supper and have her computer fixed. I collapse on the couch and prop my legs up on the wall. Oh how glorious it is to have the blood, which has pooled in my legs from sitting up for many hours, now return back to the rest of my body.

As I lie there, I ponder the doctor's appointment. My heart is broken. I feel so defeated. I am sick...so sick. But my physician said I was fine. Moreover, she said this would be a normal state for me as long as I have pseudomonas. I want to burst forth into sobs, but I am too tired to cry. I tell myself I will not go to the emergency department (ED). Furthermore, I will not stay to attend my infectious disease doctor’s appointment in two days. No, I will just sleep through the night and go home in the morning. There is no use seeking further medical treatment. My pulmonologist made it clear I was not sick.

I try to read the Bible to push away the thoughts raging in my head, but I cannot concentrate. My head throbs in pain. My neck is sore. I feel disoriented. I close my eyes, but sleep never comes. I feel as though my fever has broke. I have shed my winter parka and am now only wearing a fleece jacket. I tell myself I must be feeling better.

Around 7 p.m. I get up. I tell myself if I have a temperature of less than 101 degrees, I will not go to the ED. The thermometer beeps. It reads 101 degrees. I silently moan. “Oh, this is not good. I still have a fever. I need to seek medical treatment.” I decide I am too sick to not do anything. I resolve to go to the ED. I lie back down on the couch.

Fifteen minutes later, my mom calls. She informs me she is on her way back to the hotel. I know I should gather some items together for my trip to the ED, but I am too tired and too defeated to move. A short time later, my mom arrives back at the hotel. I reluctantly get up and start the process of packing for the ED and probable stay at the hospital. My mom and I drive to the ED. She wheels me to the check-in desk and leaves. All too soon, it is time to face the medical world. After five glorious months away from the hospital, it is now time to re-enter a place of sleep deprivation and constant vigilance.


(For the link to Part Four, click here)

Part Two: 102.6 degree fever. You are not sick.

We arrive at my doctor’s appointment a few minutes ahead of time. I see an odd sight: the waiting room is packed with people. I know the physician must be running behind. As I sit and allow my heater/humidifier on my ventilator to moisten my lungs, I can feel the thick, sticky sputum in my lungs spring back to life.

(My heater/humidifier requires an electrical source for power as it does not have a battery. This means, while traveling, my lungs are filled with cold, dry air. This causes my airways to become ridgid. My sputum becomes too thick to cough up or move around my lungs. Once my lungs are rehydrated, my airways open up, and my sputum thins out, allowing it to move around my lungs. This causes me to cough. And soon, my lungs are free and clear from the accumulation of sputum, and my breathing returns back to normal.)

As my lungs absorb moisture, lots and lots of mucus begins rumbling around my lungs. Soon, I am violently coughing, and coughing up lots and lots of “junk”. Thankfully, the wait to be called back to a room is only about 40 minutes. I am grateful to be leaving the crowded waiting room. A medical assistant takes my vitals. My blood pressure is normal. My heart rate is 109 beats per minute. The medical assistant notices I feel warm. She takes my temperature using a forehead thermometer. It reads 96.8 degrees. I tell the woman it is not an accurate reading. She finds an oral thermometer. This device reads 102.1 degrees. The assistant copies down my vitals to my medical form and leaves.

A short while later, one of my pulmonologist’s fellows enters the room. I have had this fellow before. She is rather rude. I tell her of my recent health decline. She tells me it’s nothing to be concerned about. She listens to my lungs. She tells me there is nothing wrong. She leaves. A short while later, the medical assistant returns to take another set of vitals. This time the oral thermometer reads 102.6 degrees. My blood pressure is 142/83, and my heart rate is 136 beats per minute. She leaves. The medical assistant returns with the forehead thermometer. This device reads 98.3 degrees. Clearly there is an issue with the forehead thermometer. The medical assistant reports both temperature readings to the fellow.

After what seems to be an unusually long delay between seeing the fellow and seeing the pulmonologist, my doctor finally enters the room. She seems to be tired and in a negative mood. She tells me all my symptoms are due to my chronic pseudomonas infection. I am just going to have to live with it. My mom interjects, “But she has a fever of 102.6 degrees!” The physician says I have a temperature because I am wearing a thick jacket. She continues to state when my temperature was taken without my jacket it was 98.3 degrees. I tell the doctor the readings were taken at the exact same time. One was using the forehead thermometer, and the other was using the oral thermometer. Obviously there is an issue with the forehead thermometer. I go on to say I also took my temperature using my own thermometer. It gave me a reading of 102.1 degrees. I have a fever. The doctor dismisses the information.

The pulmonologist goes on to say she briefly reviewed the notes from the infectious disease doctor. She also called the doctor. They both were in agreement my symptoms were due to me being colonized with pseudomonas. Despite coughing my head off, coughing up lots and lots of sputum and fighting so hard to breathe I can barely say more than a word or two without gasping for my next breath, my doctor tells me I am not sick.

At the end of the appointment, she finally says, “Well, if you think you are sick, you are free to roll across the street (to the emergency department).” I am against going to the emergency department (ED) because my physician, who knows me and my medical case, says I am not ill. My mom, on the other hand, insists I go. By this time, my head is spinning and is throbbing, my body is screaming in pain and I am becoming extremely confused. I tell my doctor and mom I need to go to the hotel and lie down. Then maybe later I will go to the ED. My physician says she will have the fellow call over to the ED and let them know I will be coming. We part ways. My mom and I head for the hotel.


(For the link to Part Three, click here)

Part One: When minor symptoms become worrisome

For the last several weeks, I have felt very ill. I have had a cough which has progressively gotten worse, fatigue, horrible headaches, neck pain and confusion spells. I go to my infectious disease (ID) doctor searching for answers. When a chest X-ray comes back as normal, I am assured I will be contacted when my sputum culture results come back from the lab. I wait and wait. The doctor never calls.

I am not terribly worried. I have a follow-up appointment with my pulmonologist in a few weeks. Two days after that appointment, I have an appointment to see my ID doctor. I know everything will be figured out. My pulmonologist and ID doctor know each and work together. They will have a plan to help me.

The night before my appointment with my pulmonologist, I attend Bible study. I feel very off-balanced. I cannot focus or recall facts to mind. I get lost in the middle of my sentences. I want to scream; I want to shout, “I am so lost and confused. Someone help me!!!” I do my best to get through the session.

When I get home, I need to finish packing for my doctor’s appointment. I roam around the house, lost in a fog. I know I need to make food for the trip. I know I need to place my bags in the car. The tasks seem so difficult. I manage to do the best I can and collapse into bed. Despite being completely exhausted, I cannot sleep. Finally around 2:30 a.m., I fall asleep. A few short hours, my alarm startles me awake. It’s time to get up and get on the road.

I am surprised when I sleepily move about the house I feel ok. I don’t feel great, but I feel better than I did the night before. When we begin our journey, I can feel my body is starting to act up. My airways feel tight. I start coughing. I continue to tell myself I am feeling fine. As the trip continues, my head aches. I become nauseas. I become extremely cold. I put on my thick winter parka and winter gloves. My body begins to warm up. Soon, I am in a cycle of being very hot and then profoundly cold. I think to myself, “Well, if I am going to be sick, at least I am going to see my doctor. She will be able to help me out.” An hour before my appointment, I find a thermometer. It reads 100.8 degrees. My heart sinks. I don’t run fevers unless I am extremely sick. I dread my day may not end in a relaxing night at the hotel.


(For the link to Part Two, click here)