Saving Grace: CH 8 (4/26/24)

[LGGrace]

Thanks for the comment dmavn.

[LGGrace]

Chapter 5

              Looking at my parents,  I said, “Yes, it’s me.”

              Pausing momentarily, my mom said, “What happened to your beard?  And why do you look like you are back in high school again?”

              “I’m not sure,  after taking a shower this morning, I noticed that my beard was thin and patchy, so I shaved the rest of it off,” I said.

              My dad then spoke up, “What did the doctor say today, are they doing anything to help you?”

              I said, “Well, he thinks maybe it's an autoimmune disease.  He took a bunch of blood samples to run tests on, and also a urine and stool sample.  I also had a bunch of CT scans and X-rays taken today. He is also double-checking for infection but thinks that it is unlikely.  As of right now, they have just been giving me fluids and pain meds.”

              After taking in all of the information, my mom said, “When will the results be back and when will the doctor see you again?”

              “He said most of the results will be back by tomorrow and he plans on seeing me tomorrow to go over the results.  The rest of the results should be back on Sunday.” I said.

              Before my parents could grill me more, Rachael walked in carrying a large clear I.V. bag with two different compartments.

              Looking at my parents, she said, “You must be Will’s parents.”

              With my mom having the same hazel eyes and facial features as me but with lighter brown hair and my dad having the same hair color and before today beard, but turning gray due to middle age and blue eyes, it is easy to tell that I am a product of the two.

              Without missing a beat, my mom said, “Yes, I am Will’s mother Elaina, and this is Will’s father George.”

              “It’s nice to you all,” she said.

              My dad then said, “Hopefully, my son has not been causing any trouble.”

              I glare at my dad, knowing what he is trying to do.

              Rachael said, “Not at all.”  Looking at me she then said, “OK Will, with you having issues again today with eating, the doctor ordered to give you what is called a TPN.  You can think of it like I.V. fluids but with more nutrition in it.”

              She then burst open the two compartments within the bag and shook it up.  Placing it on the I.V. pole, she disconnected me from the regular fluids and then connected the new bag of fluids to my I.V. port.

              “Is there anything else I can do for you, Will?” Rachael said.

              I said, “I’m good for right now, thanks.”

              Chiming in, my mom said, “Thank you, Rachael.”

              With a smile, Rachael said, “Certainly, press the call button if you need me later on.”  Rachael then walked out of the room.

              I looked at my dad and said, “DAD, not the time!”

              With a smile, he said, “What, she is very pretty and looks to be about your age, and I didn’t see a ring on her finger.”

              With a groan, I said, “Right now I don’t even look my age.”

              With some concern returning to his face, he said, “Alright son, I won’t try setting you up with the nurses … for now.”

              My mom then said, “I’m with Will on this, I don’t think dating should be on the agenda right now.”

My mom took my backpack and set it down on the floor, then took a seat in the chair next to the bed and my dad took the chair from the other corner and moved it beside my mom and took a seat.  I grabbed the remote and handed it to my mom and and said, “Here, you or Dad can pick something to watch, I’ll probably just fall asleep.”

She said, “OK,” then flipped through some channels and she settled on a network news channel.

As I was watching the talking heads drone on about news stories that affect no one, but somehow get people outraged, I fell asleep.

I wake up to the need to poop again, I throw the covers off and get out of bed.  Before I can get the I.V. pump unplugged, my dad is beside me helping me.  Standing up beside him, the new height difference is now apparent.  With my dad being 6 foot 1 inches, there was not a big difference between the two of us before; but now it looks like I am closer to my mom’s height of 5 foot 6 inches.  With no time to dwell on that thought, I make it to the bathroom with little time to spare.  After emptying my bowels and washing my hands, I open the door to the bathroom to see both my parents standing outside the door.

Looking at my parents, I can see that they are a little shocked by my height loss and this is the first time that they saw me standing.  I can now tell that I am probably only a couple of inches, at most, taller than my mom right now.

My mom said, “Will, how tall are you now?”

“5 foot 8 and ½ inches was how tall I was this morning,” I said.

My mom, not knowing how to respond, said, “Oh, we should probably get you back in bed.”

After getting back in bed and my dad plugging back in the I.V. pump, I asked, “Where are y’all staying tonight?”

My dad said, “We booked a hotel room not far from here for the night, we dropped off our bags there before coming here.”

Grabbing my keys off the table beside my bed, I said, “Y’all can use my car while I’m in the hospital, there is no point in getting charged for parking for the whole weekend and y’all paying for Ubers.”

My dad nodded and as I was handing him the keys I said, “The parking stub is in the front pocket of my backpack and I parked on the second floor of the parking garage that is next to the ER. If you want to, y’all can stay at my apartment until I get out of the hospital.”

My dad said, “We will keep that in mind, but don’t worry about us, just focus on getting better.”

“I will try,” I said.

“With traveling today and the time change, we are going to head to the hotel to get some sleep, but we will be back here first thing in the morning.” my mom said.

I said, “OK.”

My mom, leaning down to hug me said, “Get some rest, I love you and will see you first thing in the morning.”

With a quick kiss on my cheek, she stood back up then my dad leaned down and said, “I love you, son.” As he was hugging me.

“I love y’all too,” I said.

They then walked out of the room leaving me to fall back asleep again.

I woke to the feeling of all my joints throbbing in pain.  Reaching over to the table, I grab the remote and hit the call button.  A few minutes later, Isoline walks in and asks, “Hey Will, what can I do for you?”

“Can I get some more pain medicine, I’m in a lot of pain right now,” I said.

She said, “Certainly, I will be right back.”

She walked out of the room to get the morphine and was back within a minute.  With the syringe in hand, she quickly pushed the morphine into my I.V. line.

With a sigh of relief, I said, “Thank you.”

“No problem, is there anything else I can do for you?” She said.

“No, I think I am going to go back to sleep,” I said.

She said, “OK, get some rest.” Then walked back out of the room.  A few minutes later, I succumbed to sleep.

I awoke the next morning thinking about the close call last night with the bathroom.  With no time to ponder my midnight bathroom escapades, I’m hit with the immediate throbbing pain in all my joints.  I immediately hit the call button.  I look to my right and see that my parents are already here sitting beside me.

With a worried face, my mom asked, “Is there something wrong?”

Gritting my teeth, I said, “I need pain medicine.”

“OK, if a nurse isn’t here soon, I will go find one.” She said.

Luckily, a couple of minutes later, Rachael walks in. Guessing that she knew what I would be asking for, she already had a syringe in hand. 

She asked, “Do you need morphine?”

I nodded and she quickly pushed the medicine into my I.V.

Looking at me, she said, “I figured that you would be asking for pain medicine since you have not had any since late last night.”

Taking in a deep breath, I said, “Thanks.”

She then said, “Alright, with that out of the way, let’s go and get you weighed and measured.”

With relieved joints, I slowly get out of bed.  With my parents standing on either side of me, I can tell I am definitely closer to my mom’s height.  Pushing my I.V. poll, all four of us make it down to the nurse’s station.  Rachael weighs and measures me and before I could even ask, my dad said, “How much does he weigh and how tall is he?”

“He weighs a 123 pounds and is 5 foot 7 inches tall,” Rachael said.

With frustration in my dad’s voice, he said, “When will the doctor see him today?”

With a slight nervousness in her voice, probably not wanting to deal with an angry, protective parent, she said, “The doctor should see him in about an hour.”

Walking back to my room in silence, I could feel the tension on either side of me.  But either being lucky or unlucky depending on how you look at it, as soon as I passed the threshold of my room, I was hit with the need to poop.  With a quick, “I’m going to the bathroom.” to my parents, I detoured into the bathroom.  After another ungodly bowel movement with some pee, I wash my hands, brush my teeth, and comb my hair.  Exiting the bathroom, I see that my parents are in their ‘assigned’ seating, with my dad watching Sports Center on TV.  Settling back in bed, we wait in nervous silence for the doctor.

Nodding in and out of sleep, I open my eyes to my mom gently shaking my shoulder.

“The doctor is here to see you, Will.” My mom said.

Sure enough, at the foot of my bed is Dr. Wilson.

“Good morning Will, how do you feel this morning?” Dr. Wilson said.

I said, “I’m just tired right now.”

Dr. Wilson responded, “I'm sorry to hear that, have you been having any new or worse symptoms?”

“No new symptoms, I just have been having worse joint pain and needing more pain medicine,” I said.

“We will keep giving you morphine as needed to keep you comfortable.  I do have the majority of your test results back.  Starting first with your urine and stool sample results show high levels of calcium.  Looking at your blood panel results, it is the same as before with high levels of calcium and creatine kinase.  We did get the results back from testing for the most common autoimmune diseases and your results were negative for Addison disease, Celiac, Dermatomyositis, Graves, Hashimoto thyroiditis, Crohn, MS, Myasthenia gravis, Pernicious, Sjogren syndrome, Lupus and both Reactive and Rheumatoid arthritis.” He said.

Before I could even respond, my mom asked, “What did his CT and X-ray show?”

He said, “The X-ray didn’t show anything abnormal and the CT scan did not reveal anything new to us.  It is still showing that all of his joints are inflamed, but since we ruled out arthritis, we know it is not that.”

My dad asked, “What else could it be?”

“Well, I am still waiting on the test results to come back for the more uncommon types of autoimmune diseases, I should have them by tomorrow.  Also, the blood culture results should be back by tomorrow, but since he is not running a fever and I am not seeing any other signs of an infection, I expect it to be negative,” Dr. Wilson said.

My dad said, “What are you going to do for him in the meantime?  He lost 5 inches in height and a little over 30 lbs this week.  I’m literally looking at the teenage version of my 27-year-old son.”

“I was hoping it would not come to this, but with his extreme weight loss, I will be giving him a nasogastric tube or feeding tube soon.  It will bypass his stomach and give him nutrition at his duodenum or the lower stomach that connects to his small intestines.  This should allow him to get nutrition without vomiting.  I will set him on a feeding schedule of three times a day and will switch him back to regular fluids in his I.V.” He said.

My mom said, “How is he losing weight and shrinking?”

Dr. Wilson said, “To be honest, with how his symptoms are presenting, I have never seen something like this.  It seems that his body is using itself to sustain itself.  But instead of getting emaciated, his skeletal system is shrinking to compensate.  That is why there is a high level of both creatine kinase and calcium in his blood, but only high levels of calcium in his urine and stool.  The body only needs so much calcium to sustain itself and expels the rest.”

Before my parents could interject, I asked, “When will you be putting in the feeding tube?”

“I will be going to get the necessary supplies and a nurse to help now.  I should be back soon.” He said.

Before he could get bombarded with more questions from my parents, he walked out of the room.

With a concerned look, my mom said, “I think we should get you into a better hospital.”

“I think we should at least wait to see what the results are tomorrow.  With it being the weekend, I doubt that another hospital will do much for me until Monday.” I said.

My mom said, “That is probably true, but as soon as the doctor tells us the results tomorrow, I would like to get you transferred to the Mayo Clinic in Phoenix.”

A few minutes later, Dr. Wilson and Rachael walked in carrying some supplies on a tray.  After setting the tray tray down on the table beside me, Dr. Wilson said, “Alright Will, with your I.V. in your left arm, I am going to insert the tube in your left nostril.  It is probably going to be a little uncomfortable when I insert it and will probably feel a little strange having it in afterward, but it shouldn’t bother you too much.”

I said, “OK.”

After both he and Rachael put on some gloves, he grabbed one end of the feeding tube while Rachael held the rest, which included some ports.

Dr. Wilson said, “I am going to start putting the tube up your nose and when I tell you to swallow, swallow so that we make sure that it goes down your esophagus.”

I nodded, then Dr. Wilson started pushing the tube up my nose and when I felt it in the back of my throat, I heard Dr. Wilson say, “Swallow Will.”  I swallowed and Dr. Wilson pushed more and more of the tube up my nose as Rachael fed it to him.  All the while, I did my best not to gag as it ran down my throat.  When he was done, he taped it to my cheek and put the loose end with the port behind my ear.  As soon as I was over trying not to gag, I was hit with the sensation of having a weird continuous sinus drain.  It wasn’t a bad feeling, but it was a strange feeling to have constantly.

Dr. Wilson then asked, “How does it feel?”

“It feels strange but not bad,” I said.

“Good, with it already close to lunchtime, I am going to get Rachael to start you on your first feeding.  It will basically be the adult version of formula.  And to avoid any complication with the feeding tube, always keep your bed at least slightly elevated, never lay down completely flat.” He said.

I said, “OK, that shouldn’t be a problem.”

“I will see you tomorrow morning to go over the rest of the results, please let someone know if you have any issue with your feeding tube.”

I said, ”OK.” then both Dr. Wilson and Rachael with the tray walked out of the room.  A moment later Rachael walked back in with a new bag of regular fluids and another smaller bag full of an off-white milky liquid.

“I'm going to get you started on your feeding and switch you to regular fluids,” She said.

I nodded, and then she hung both bags from my I.V. poll, disconnected the TPN bag, then threw both the old,  almost empty, bag of fluids and the TPN bag away.  She then connected the new bag of fluids to my I.V. and then connected the other bag for feeding to one of the ports on the end of my feeding tube.

“Alright, you are all set, let me know if you need anything else or if you are having any trouble with the feeding tube,” Rachael said.

I said, “Thanks, I will.”

As Rachael was walking out of my room, I turned to my parents and said, “I’m pretty tired, I think I am going to go back to sleep.”

My mom said, “That is OK, get some rest, we will be here when you wake up.”

On that note, I shut my eyes and fell asleep.

I woke to both the throbbing pain in my joints and the need to poop.  I turned to my mom and dad, and said, “I need pain meds and I also have to go to the bathroom.”

I got out of bed as my dad was getting up to help me with unplugging the I.V.  I made my way into the bathroom with my dad behind me and him shutting the door for me.  As I am emptying my bowels on the toilet, my joints start to really cry out in pain.  By the time I finished wiping and flushed the toilet, I was in too much pain to get off the toilet.  I then hear a knock on the door.

“Will, is everything alright in there?” I hear my dad’s voice from the other side of the door.

I said, “I need pain medicine, but my joints hurt too bad to get off the toilet.”

With a short pause, I hear my dad say, “OK, Rachael and I are coming in.”

The door opens and in walks, my dad with a concerned face, followed by Rachael.  I can tell, they are trying their best not to react to the smell that I just created in the bathroom.  Rachael immediately pushed a syringe of morphine into my I.V. line as my dad stood on the other side of me to help me get up.

After a few moments, my dad asked, “Are you OK enough for me to help you get up?”

After taking a deep breath, I said, “Yes.”

My dad then put a hand under each of my armpits and as he was helping me up, with very little effort on my part, I pulled up my sweatpants and underwear.

Rachael said, “While your dad helps you back in bed, I am going to go get some saline to flush out your feed tube.”

Rachael walks out as my dad hovers behind me as I wash my hands and make my way back into bed.  As soon as I am back under the covers, Rachael walks in with another syringe.  She walks up to my I.V. pole and disconnects the feeding bag from my feeding tube, then connects the syringe and slowly pushes the saline into my feeding tube, forcing the rest of the milky white liquid to go down the tube. 

After throwing the empty feeding bag and syringe away, she turned to me and said, “Will, I am going to start checking on you when you are scheduled to be able to have another dose of morphine so that you don’t end up in that situation again.  I will also make a note in your chart so other nurses will know too.”

I said, “Thanks, that wasn’t fun.”

“I bet not, you're scheduled to be able to have another dose around the same time as your last feeding of the day, so I will double check with you then and if you need anything else, let me know,” she said.

I said, “OK.”

As Rachael was walking out of the room, my mom turned to me and said, “I talked to your brother earlier and he wanted to Facetime you if you were up to it.”

“Sure, I feel better now with the pain meds kicking in,” I said.

A second later, my mom was handing me her phone while it was calling my brother on Facetime.  10 seconds later, I see both my brother and sister-in-law on the screen.  While my brother has the same eyes and hair color as our mom, he has the same facial features as our dad and surprisingly, has a more stockier frame than both of us.  Sitting beside him is his wife, with blue eyes, wavy blonde hair that hangs a few inches past her shoulders, and a button nose. 

I said, “Hi Stanley, Hi Katie.”

They seemed shocked, but not too shocked. I guess my mom prepared them and probably sent them a picture of me when I wasn’t looking or sleeping.

“Hey Will, Mom told me what was going on.  How are you feeling?” He said.

“I’m feeling OK right now, but that is probably because I was just given morphine a few minutes ago,” I said.

“Ah, the good stuff, I imagine you would be feeling pretty good right now,” he said with a chuckle.

Katie, speaking up, said, “We just wanted to check in and see how you were doing and if there was anything we could do for you.”

I said, “Not much you can do for me right now, I’m just waiting to see what the doctor will say tomorrow morning.”

Before either of them could respond and as if waiting on her cue, I heard a small voice off-screen say, “Uncle Will, Uncle Will!”  A second later I see a 2-year-old miniature version of her mom with short curly hair climb into my brother’s lap to look at who is on the screen.

“Hey Ellie, what have you been up to?” I said.

She looked at me and said, “Uncle Will, play?”

Before I could respond, Katie said, “Uncle Will is not feeling good, he can’t right now.”

I smiled to myself, thinking that I am probably the only person in the world that has played with a toddler multiple times through Facetime in her play kitchen.  The only drawback is that she will forget we are on Facetime and set the phone down and run off to play with other things. 

And with all the social graces and attention span of a toddler, Ellie slides out of my brother's lap to most likely scatter more toys throughout the house.

“Thanks, Katie, As entertaining as our little Facetime play dates are, I will probably just fall asleep on her,” thinking for a moment, I ask, “Where is little Charlie?”

Katie said, “He is sleeping in his crib right now, but hopefully, he will be awake the next time we Facetime you.”

“OK, well speaking of sleeping the pain meds are kicking in pretty good, so I think I am going to go back to sleep,” I said.

Stanley said, “Alright get some rest, we love you and will talk to you later.”

“Love y’all too,” I said.

I then handed the phone to my mom and as I was falling asleep, I could overhear my mom and dad talking to Stanley and Katie.

[BabySofia]

Good that he has his parents there. I have a feeling the Mayo Clinic is a necessity coming down the line, even as the medical freakishness of his symptoms becomes even more known. I'm curious what the results of the feeding tube nutrients will have. I was half expecting more vomit to be an issue. 

I have a feeling Ellie is going to have a new her-sized playmate here very soon!

Keep up the great tale! 🙂

[LGGrace]

Thanks for the comment.

As Will gets sicker, his parents are going to be big advocates for his care.  The feeding tube effects will be known in the next chapter. 

Ellie is going to both help Will and be an emotional sticking point for him. I based her character off of one of 7, soon to be 8, nieces and newphews I have in real life.  

I do have a few M. Night Shyamalan twist in this story that will hopefully keep y'all entertained. 

[Jayme]

I've noticed a unique spelling for the IV pole and alcohol swab, is that intentional or just a random typo?

 

I'm really getting into the story and am interested in seeing where it goes from here, my mind keeps bouncing to several different scenarios as to what could be happening but I can wait to see what happens next...

Thank you for sharing this wonderful story with us here.

[Kaiko-chan]

On 3/31/2024 at 1:49 AM, LGGrace said:

I don't imagine it would. Surprisingly that is one of the few things I have not had to do despite all of the GI problems I had.  I'm just glad I don't plan on writing a colonoscopy in this story.

They give you this little tray to put on the toilet seat so at least you don't have to try and hold a container under your butt

[LGGrace]

3 hours ago, Jayme said:

I've noticed a unique spelling for the IV pole and alcohol swab, is that intentional or just a random typo?

 

I'm really getting into the story and am interested in seeing where it goes from here, my mind keeps bouncing to several different scenarios as to what could be happening but I can wait to see what happens next...

Thank you for sharing this wonderful story with us here.

That is just a typo, I plan on going through all my posted chapters later this week to see what I missed.

Hopefully, I can keep you on your toes.

Thanks, this is a story that I have written and rewritten in my head for over a year now.  Hopefully, I do the story in my head justice when I type it out and it gives me more time to work on this other story that I have about 60% of it written in my head that has been collecting dust in my head for a year now.

2 hours ago, Kaiko-chan said:

They give you this little tray to put on the toilet seat so at least you don't have to try and hold a container under your butt

I wasn't sure how I wanted to handle the stool sample, I vaguely remember one of my brothers having to poop in tinfoil that was laid over the toilet seat in elementary school.

[LGGrace]

Sorry for the delay in getting the next chapter out, I wrote half of the chapter last Friday, but life got in the way and I could not find the time to finish it until now.  Hopefully, y'all are still okay with the slow burn, but I think it will pay off in the end (I'm at 22K words right now).  Even though I love AR virus and similar type stories, it still always seemed like magic to me.  Hopefully, my plan for Will's physical regression will be plausible to the reader and I do a decent job of explaining the mechanics of how it could happen. I imagine that the process of going from an adult to a toddler or infant would be painful and ugly.

I think I may be getting a little too caught up in details in some aspects too.  I debated on having a different nurse in this chapter since nurses typically work 4 12s and 3 days off, but I decided against it since these are one-off characters.  I am also thinking of going back and adding that after the nurse injects medicine into Will's I.V. they need to then flush it with some saline to make sure all the medicine goes into Will.  But I may just be splitting hairs here.

I plan to have Chapter 7 posted Monday night and Chapter 8 either Friday or Saturday of next week. For at least the next couple of weeks, I see myself being able to post 2 chapters a week.

Chapter 6

I woke up to my mom shaking my shoulder and saying, “Will, Racheal is here to start your feeding tube, do you need any more morphine?”

Groggily, I took stock of my body.  Noticing that the pain meds were starting to wear off, I looked at Racheal and said, “I could probably use some more pain medicine now or I will be in trouble soon.”

Racheal said, “Certainly, Will.”  Then she injected a syringe of morphine into my I.V., and with the feeding bag already hanging from the I.V. pole, she connected the bag to the port on my feeding tube.  Before she could finish cleaning up and asking if I needed anything else, I was back asleep. 

I woke again to the need to poop, getting out of bed, I grabbed my I.V. pole and went straight to the bathroom.  Sitting on the toilet pooping my brains out for either the 3rd or 4th time today, I was feeling a little queasy.  Seeing that the feeding bag was empty, I hoped that this was helping.  I wiped, flushed, and washed my hands.  I get back into bed to see my dad looking up from his magazine and my mom looking up from her phone.

“How are you feeling, Will?” My dad asked.

I said, “I feel OK, just a little nausea.”

“Let's get the nurse and let her know.” He said.  Wasting no time he reached over and grabbed the remote off the table and hit the call button.  A few minutes later Isoline walks in.

“Good evening Will, what can I do for you?” Isoline said.

Before I could respond, my dad said, “Will is feeling nauseous, could it be from the feeding tube?”

Isoline said, “That is a possibility.  The doctor did prescribe him medicine for nausea that I can give him in his I.V. and it looks like he needs another bag of fluids soon and I need to flush out his feeding tube.  I will be back in a minute.”

True to Isoline’s word she was back with the needed supplies a few minutes later.  She then flushed my feeding tube, switched out the fluids, injected the nausea medicine into my I.V., and threw all old medical supplies away. Turning to me, Isoline said, “Let me know if you need anything else tonight, I will wake you up around 1 am tonight to ask if you need any more morphine.”

I said, “Thank you,” and then Isoline walked out of the room.

My mom then said, “Will, it is getting late and we want to be here first thing in the morning to wait on the doctor.  Your father and I plan on staying at your apartment tonight, is there anything that you need that we can get for you?”

“I probably could use a few extra pairs of my smallest sweatpants or pajama bottoms and underwear.  I would like to take a shower sometime tomorrow and as funny as it would be to moon y’all, I don’t care to have my butt hanging out the back of a hospital gown all the time,” I said.

With a smile, she said, “Anything else?”

I said, “Could you pack me a toiletry bag and you can take the pair of sweatpants by my backpack to be washed.”

“Sure, how are your underwear and sweatpants fitting you with all the weight and height loss?” She said.

“Uhh … very baggy and loose.  Luckily, I can tie the drawstrings tight on this pair,” I said.

She said, “We will just pick you up some smaller-sized clothes on our way to your apartment tonight.”

With a sigh, I said, “Yeah, that is probably the best option right now.”  After a moment of thinking, I said, “Could you bring me my ODE homework so that I can email it to my professor?”

My dad interjected, “Son, you don’t need to worry about school right now.  Did you let them know that you are in the hospital?”

“Yes, and I told them to plan for the possibility that I may not be back next week too, just in case,” I said.

He said, “That settles that, and either your mother or I will call the department office Monday to update them on you.”

Reluctantly, I said, “OK.”

“Will, get some rest tonight, we love you, and will be back first thing in the morning,” my mom said.

I said, “ I love y’all too.”

After both my parents hugged me, they walked out of the room.  Flipping on the TV, I settled on watching reruns of Ancient Aliens.  In less than an hour, I was back to sleep.

I woke up the next morning to Rachael gently shaking my shoulder.  “Good morning Will, do you need any more morphine?” she said.

After a few seconds to fully wake up and internally access my body, I nodded yes to Rachael.  Rachael then pushed two different syringes into my I.V., one I could tell was Morphine and the other I assumed was the nausea medicine.  I then saw her hang up another bag for my feeding tube then connected it to the port of my feeding tube.

After throwing away all the medical trash, she said, “Will, are you feeling up to getting weighed and measured this morning?”

I said, “Sure.”

Getting out of bed, I see that my parents are already here and are getting up to help me get my I.V. pole situated.  As all four of us were heading to the nurse’s station, my mom asked, “How did you sleep last night and how do you feel this morning?”

“I slept OK, I only woke up once to get more morphine and another time to go to the bathroom.  I feel worn out, but OK,” I said.

My mom said, “That’s good to hear as far as spending the night in the hospital.  We have new clothes for you to change into after you take a shower today.”

I nodded to my mom as we were walking behind the nurse’s station.  I let Rachael weigh and measure me and like yesterday my dad asked, “How much does he weigh and how tall is he?”

Rachael said, “He weighs 117 pounds and is 5 foot 5 and ¾ inches tall.”  After a short pause, she added, “The doctor should see him in about an hour.”

With tension in the air, my parents and I walked back to my room. I thought to myself ‘Now I’m shorter than Mom.’  Once back inside the room, I asked my mom, “Can I have one of those new pairs of sweatpants and underwear?  I may as well take a shower while we wait on the doctor.”

My mom said, “Sure.” Walked over to the chair by my bed reached into a plastic shopping bag and pulled out a pair of sweatpants and a pack of underwear.  She then ripped open the pack, pulled out a pair, and handed them both to me.  She then walked back over and grabbed the toiletry bag that she packed for me. 

“Will, I’m going to go set your toiletry bag on the counter in the bathroom for you,” she said.

I said, “OK, can you ask Rachael to get me a clean gown and socks for when I get out of the shower?”

“Sure, sweetheart,” my mom said.

I nodded and walked into the bathroom, shutting the door behind me.  I turned on the water to the shower and started to strip out of my clothes.  After checking the water temperature, I step into the shower.  I let the water run down my body while trying my best to not let the tape holding my feeding tube in place get wet.  After washing my hair and carefully rinsing it out, I started washing my body.  This time I noticed that most of my body hair was gone.  I have some hair on my legs and arms, but I now have no hair on my chest and armpits.  I also am missing almost all of my pubic hair.

I finish rinsing off, then turn off the water to dry off.  Stepping out of the tub, I slowly get dressed in the new pair of sweatpants and underwear.  Looking at the size shows that it is a men’s small.  Thinking back to the last time that I wore this size made me realize that I started wearing this size in 8th grade.  Looking into the bathroom mirror, I see a version of myself that I have not seen since 8th or 9th grade.  Looking at my face, I can tell I am years away from needing to shave.  Not knowing what to do about this, I just brush my teeth and comb my hair.

I walk out of the bathroom, pushing the I.V. pole with me.  I see my parents are sitting down watching the news and there is a new gown and socks on the foot of the bed.  I put the gown on and before I could start trying to tie the back together, my mom was up, tying it for me.  I sat on the bed, then pulled the socks up my feet.  I swung my legs into the bed and laid back in bed.

As my mom was sitting back down, she said, “Rachael should be back soon to flush your feeding tube out.”

I said, “OK,” and then we sat in silence for a few minutes watching the news on TV. 

Rachael entered my room with a syringe in hand walked over to my I.V. pole to disconnect the feeding tube bag and used the syringe of saline to flush my feeding tube.  After throwing the empty feeding bag in the trash, she turned to me and said, “I'm going to fix the tape that is holding your feeding tube in place since the tape got wet when you took a shower. 

I nodded and she carefully pulled the tape off my face.  She reached into her pocket and pulled out a roll of medical tape and after tearing off a few strips, she re-taped my feeding tube back in place on my left cheek. 

    “You're all set, Will, the doctor should be here soon.  I will be back around noon to set you up with another feeding and to see if you need more pain medicine.  Of course, let me know in the meantime if you need anything before then,” Rachael said.

    I said, “Thank you,” and Rachael walked out of the room.

    My mom turned to me and said, “Hopefully, the doctor will have some answers today.”

“I hope so, when I was taking a shower, I noticed that most of my body hair has fallen out now,” I said.

With a look of concern, my mom said, “Well, your father and I were talking last night and regardless of what the doctor tells us today, we are going to ask for you to be transferred to the Mayo Clinic as soon as possible.”

I said, “OK, I hope I have better luck there and they can find out what is going on.”

Before we could get any further in our conversation, there was a knock on the door, and in walked Dr. Wilson.

“Good morning Will, how do you feel this morning?” He said.

I said, “Tired and run down, not much different than yesterday.”

Dr. Wilson said, “I was hoping the feeding tube would give you more energy, but I am glad that you seem to be handling it well.  Have you been having any worse or new symptoms?”

“I felt nauseous yesterday evening after being fed from the feeding tube, but the nausea medicine helped and I noticed this morning while taking a shower, that most of my body hair has now fallen out now,” I said.

“The nausea medicine should continue to help. There is still a chance that you could vomit, but if you do vomit, it should not affect the feeding tube.  If you do have issues with the feeding tube, let someone know immediately.  A nurse may have to take the feeding tube out and put a new one in,” Dr. Wilson said.

My dad interjected, “Do you think this is even helping him?”

Dr. Wilson said, “It is too early to tell right now, I did see in his chart this morning that he lost a quarter of an inch less than yesterday.  But what we perceive as a nonlinear loss in height could be linear for his body since as he gets shorter, it takes less to sustain him.  A 185 pound person that loses 10 pounds is not as concerning as a 95 pound person that loses 10 pounds.”

“That makes sense, what are his test results?” My dad asked.

“As expected, his blood cultures came back negative.  We did test for more rare diseases that could affect his skeletal muscle system.  We tested for Osteogenesis imperfecta, Achondroplasia, Hypophosphatasia, Multiple osteochondromas, Fibrous dysplasia, Pseudohypoparathyroidism, and Fibrodysplasia ossificans progressiva.  All tests have come back negative.  It does not seem to be a condition that I know of that could fit the symptoms that he has.  Most diseases that affect the skeletal muscle system can take years to cause noticeable changes and to cause a decrease in height like Will would have gross skeletal deformities.  His scans show a normal skeletal system and for all intended purposes, he is healthy besides his symptoms,” Dr. Wilson said.

“How could this even be happening?” My mom said in frustration.

Dr. Wilson said, “Honestly, I am not sure how something like this could be happening.  I have talked to some colleagues and they agree that something of this nature is unheard of.  We all agree that this is probably a genetic disease in nature, but without further testing, we do not know.”

In a worried voice, my mom said, “Will’s father and I have been talking and we want to have Will transferred to the Mayo Clinic.”

Pausing for a second, Dr. Wilson responded, “That is the second half of what I wanted to discuss with Will on.”

Before I could respond, I was hit with the immediate need to go to the bathroom.  As I was getting out of bed, I said to Dr. Wilson and my parents, “I have to go to the bathroom.”  My dad jumped up out of his chair and before I could reach over to unplug my I.V. pump, he was already unplugging it and helping me to the bathroom.  As I walk into the bathroom, my dad shuts the door behind me.

    After what has become my new normal in the past few days, as far as bathroom visits are concerned, I stepped out of the bathroom and made my way back to my bed.  As I was settling back in bed, Dr. Wilson turned to me and said, “I have already gone over this with your parents but I want to go over what to expect over the next 24 hours.

    “OK,” I said.

    “I have already put in the request for you to be transferred to the Mayo Clinic this morning.  We will keep you here for the rest of the day and tonight, but early tomorrow morning an ambulance will be transporting you to the Mayo Clinic.  I have already transferred all of your medical records and results to the Mayo Clinic and have been bringing a team of doctors at the hospital up to speed on what has been going on with you.  Do you have any questions?” Dr. Wilson said.

    Thinking for a second, I said, “No, I just hope they can figure out what is going on.”

“The team of doctors that will see you are some of the best in the world and they specialize in genetic, autoimmune, and diagnostics medicine.  If anyone can solve this enigma, it would be them.  I will also be following up with your case and offering my help as they take over,” Dr. Wilson said.

Feeling a little more at ease with my situation, I said, “Thanks, Dr. Wilson.”

“I'm going to let you get some rest, let the staff know if anything changes for you between now and being transferred tomorrow morning,” Dr. Wilson said.

    After Dr. Wilson left, my mom said, “I’m glad we didn’t have to fight with the doctor on getting you transferred.”

    “Me too, there is enough drama going on already,” I said.

    Turning my attention to the TV, I see that my dad has the weather channel on.  After spending a few minutes watching the weather forecast across the country, my eyes felt heavy and I fell asleep. 

    I awoke to my I.V. pump beeping.  I look over and see that my fluid bag is empty and groan at the beeping waking me up.  As I am turning to look at my parents, I hear my mom say, “I already pressed the call button, Rachael should be here soon.”

    I groggily said, “OK.”

    A minute later Racheal walked in and heard the beeping from the I.V. pump, walked straight to it, and pressed a few buttons to turn it off.  She turned to me and said, “I’ll be right back with a new bag of fluids.”

    She walked out and was back a moment later.  She disconnected my I.V. bag.  She then hung a new bag of fluids up and connected it to my I.V.  She said, “Alright Will, you're all set now, I will be back later for your mid-day feeding and pain medicine.”

    I nodded and as she was walking out of the room, my mom spoke up and said, “I have been talking to Marley and she wants to Facetime you if you are up to it.”

    I said, “Sure.”

    Wasting no time, she hands me her phone that is already calling my sister.  A few seconds later, I see my little sister's face pop up on the phone.  While our older brother favors our dad, both she and I favor our mom.  If it wasn’t for the two-year age gap, most people would think that we were twins growing up. 

    With a look of shock, Marley said, “Hey Will, how are you feeling?”

    “I mainly just tried and wore out,” I said.

    “Wow Will, you look like you are back in middle school or at the most 9th grade,” pausing for a second I can see a devilish grin form on her face, “looks like I’m not the baby of the family anymore,” Marley said.

    Before I could respond back, I heard my dad speak up in a playful voice saying, “No matter what Will looks like, you will always be the baby of the family and my little princess.”

    Smiling, I said, “You heard Dad Princess, I hope I am not holding you up from your tea party?”

    Groaning, she said, “I guess I am never going to live it down that I had tea parties until I was 12.”

    “Nope, and you are the only one of us who still has a stuffed teddy bear,” I said.

    In mock shock, she said, “Don’t bring Mr. Biggles into this.”

    “Well, I have to punch below the belt since you are bigger than me now,” I said.

    With concern, she said, “What are the doctors doing for you, have they figured anything out?”

    “They figured out what it is not so far.  I’m being transferred to the Mayo Clinic tomorrow morning and a team of some of the best doctors in the world are supposed to be trying to figure this out.  Hopefully, I get some answers in the next few days,” I said.

    She said, “I hope so too. I was just wanting to check in on you, I will let you get some rest since mom said that you pretty much sleep all the time right now.”

    I said, “Yeah, the only reason I’m awake right now is because the I.V. pump was beeping earlier and woke me up.”

    “Well, I love you, Will, get some rest,” she said.

    I responded, “I love you too, Marley.”

    After talking to my sister, I spend the rest of the day sleeping and only walking up to either go to the bathroom or get more pain medicine. When my parents left to go back to my apartment for the night, I went to bed that night hopeful that the doctors at the Mayo Clinic could find out what was going on with me.

[BabySofia]

Glad to see an update to this, with promises of more soon! Still going strong as far as I'm concerned here! 🙂

[zzzz50]

Very good story, the only thing that strikes me as strange is that no one from work has visited, you would think his boss would at least check-in to evaluate how ill he is and to arrange to pick up the test. 

[LGGrace]

2 hours ago, BabySofia said:

Glad to see an update to this, with promises of more soon! Still going strong as far as I'm concerned here! 🙂

Thanks!

1 hour ago, zzzz50 said:

Very good story, the only thing that strikes me as strange is that no one from work has visited, you would think his boss would at least check-in to evaluate how ill he is and to arrange to pick up the test. 

Thanks for the comment. 

I imagine Will's experience at ASU would be similar to my experience at a similar university that I am currently at. Will's boss is technically not his boss. Dr. Lau would be called the instructor of record and Will could work under a different one each semester depending on his own class schedule as long as he grades in a timely manner and writes and gives out quizzes regularly, there would be little to no interaction between the two. Ph.d students are really just clogs to help push as many students as possible through the series of calculus classes.

The quizzes that Will hasn't grade yet are in his office desk. If need be, Dr. Lau would get the department chair to open his office to get them.

In my experience, the only people who visit you in the hospital is family and very close friends. Will just moving to Arizona over a year ago, I don't see him forming those close friendships in that amount of time.

 

[howiebabe]

Love the story and am looking forward to the continuation. You are doing an excellent job of making these people seem real.

One minor point. When people are talking about weight they don't say lbs, they say pounds. When talking about height they say things like five feet and five and three-quarters inches or you could write 5 feet and 5 3/4 inches. The single and double quote for feet and inches is fine if you are displaying his chart, but people don't talk in abbreviations.

You are not the only author who forgets this, but given that discussions of height and weight are sort of central to the tale, I thought I would mention this.

 

[LGGrace]

Thanks, one of my biggest fears with writing this story was making relatable characters and realistic conversations. 

Thanks for the catch, I'll fix it today along with other minor issues that were pointed out in earlier comments that I haven't had time to fix yet.

[zzzz50]

6 hours ago, LGGrace said:

Thanks!

Thanks for the comment. 

I imagine Will's experience at ASU would be similar to my experience at a similar university that I am currently at. Will's boss is technically not his boss. Dr. Lau would be called the instructor of record and Will could work under a different one each semester depending on his own class schedule as long as he grades in a timely manner and writes and gives out quizzes regularly, there would be little to no interaction between the two. Ph.d students are really just clogs to help push as many students as possible through the series of calculus classes.

The quizzes that Will hasn't grade yet are in his office desk. If need be, Dr. Lau would get the department chair to open his office to get them.

In my experience, the only people who visit you in the hospital is family and very close friends. Will just moving to Arizona over a year ago, I don't see him forming those close friendships in that amount of time.

 

My experience was a little different, when I was in the hospital years ago it seemed like half the office visited over a couple of days! Maybe academia is different from an office job.

[LGGrace]

11 minutes ago, zzzz50 said:

My experience was a little different, when I was in the hospital years ago it seemed like half the office visited over a couple of days! Maybe academia is different from an office job.

In my experience, they are totally different worlds.  I worked as a PM in construction management/engineering for 6 years while working on my master's part-time.  If I had to stay in the hospital during that time, I could almost guarantee, that half the office would have visited me. 

[LGGrace]

Sorry for the delay again.  I guess I should not write checks that I can't cash when it comes to self-imposed deadlines on posting chapters that I have not even begun to write yet. 

I probably should have said in my first post for this story that there will be some strong language in this story at times.  If I had to give this story a TV rating overall, it would be TV-M for language. Other than that, I would consider it SFW.

Chapter 7

  I woke the next morning to Rachael asking if I needed more morphine.  Rubbing the sleep out of my eyes, I nod yes.  Rachael injected me with the syringe of morphine, and another syringe of the nausea medicine, and started my feeding tube.  I turn to my left to see that both my parents are already here. My attention snaps back to Rachael saying, “Will, you have a busy day ahead of you, let’s go ahead and get you weighed and measured.”

    “OK,” I said.

I started to slowly get out of bed and my dad was already by my side to get my I.V. situated and helped me to my feet.  I felt a weakness in my legs and was struggling to move this morning more than in the past few days.  My mom, seeing me struggle, asked, “Will, how do you feel this morning?”

I said, “I just feel really tired and weak.”

“I'm sorry you feel so bad, hopefully, the doctors at the Mayo Clinic will help you get better soon,” my Mom said.

“I hope so too,” I said.

We made our way to the nurse station and Rachael weighed and measured me.  Before my dad could ask Rachael said, “Alright Will, you weigh a 112 pounds and are 5 foot 4 and ½ inches tall this morning;” pausing for a second, she said, “We should be getting you ready for transport in the next hour or two.  I will come check on you in a little bit to flush your feeding tube and get you ready.”

I slowly make it to my room with my parents on either side of me. I gingerly get back into bed as my mom plugs my I.V. pump back in for me.  My mom turned to me and asked, “I was going to pack up all your belongings to bring to the Mayo Clinic with us so you don’t have to worry about it while being transported there.  Is there anything other than your backpack and toiletries that I am missing?”

“Besides my stuff on the table, that is everything,” I said.

She said, “OK, I will make sure I have everything to bring to the other hospital for you.”

I said, “Thanks, I'm going to go ahead and brush my teeth before you pack everything up.”

I got back out of bed as my mom unplugged the I.V. pump again for me and slowly made my way into the bathroom.  I quickly brushed my teeth and as I was brushing my teeth, I noticed that my nails were very long.  Looking in my toiletry bag, I found my nail clippers and was able to get my nails down to a manageable length.  I sat on the toilet seat, pulled my socks out, and saw that my toenails were in need of trimming too, and decided to trim them while I was at it.  I came back out of the bathroom to my mom waiting to help me back into bed. Once getting settled in bed I watched as my mom started packing all my belongings up.  My dad then spoke up saying, “Will, is there anything in particular that you want to watch on TV?”

“No, not really,” I said.

My dad then said, “Sports Center it is then.”

I lay in bed half-heartedly watching TV and dozing in and out of consciousness.  Sometime later, I was alerted to Rachael walking into the room.  “Alright Will, I’m going to flush your feeding tube and disconnect your I.V. to make it easier for being transported to the Mayo Clinic,” Rachael said.

I nodded and watched her flush my feeding tube, disconnect my I.V., and throw everything away.

Rachael then said, “Someone should be here soon to bring you downstairs to an ambulance for transport.”

I said, “OK”

“Will, I hope they find out what is going on and you get better soon,” Rachael said.

“Me too, sorry about the whole bathroom and pain medicine incident the other day,” I said.

In a serious voice, Rachael said, “Will, that was nothing to be embarrassed about, I have to deal with a lot worse and would not be a nurse if I could not handle it.”

I said, “OK, thanks for looking after me.”

“Certainly Will,” Rachael said with a smile.

My mom then chimed in, ”Thank you, Rachael.”

“No problem, I hope you all have a better week this week than last,” Rachael said.

Around 15 minutes after Rachael left, an orderly came into my room pushing a wheelchair.  He asked, “Are you William Gauss?”

I said, “Yes.”

“OK, I’m here to bring you downstairs for transport,” he said.

I nodded and slowly started getting out of bed.  My parents were already up and by my side.  My dad hugged me and said, “We should be at the Mayo Clinic shortly after you get there.  I love you.”

My mom then hugged me and with a kiss on the cheek said, “I love you, sweetheart, we will see you in a little bit.”

As I was sitting down in the wheelchair I said, “I love y’all too.”

My parents both waved to me as I was being wheeled out of the room.  The orderly wheeled to the elevator and we rode it down to the ground floor.  He then pushed through the back of the emergency department to what looked like an exit.  Waiting for me at the exit was a stretcher and a tall paramedic wearing a dark blue uniform with EMS patches on the shoulders of his sleeves.  As the wheelchair came to a stop he said, “You must be William Gauss, my name is Matt and I will be your ride to the Mayo Clinic.”

I nodded and he and the orderly helped me out of the wheelchair and onto the stretcher.  As the orderly was leaving, Matt turned to me and said, “I’m going to strap you down so we don’t have to worry about you falling off the stretcher during transport.”

I nodded and Matt processed to run a strap over my sternum, my waist, and then my thighs.  Matt then said, “You're all set, let's get you loaded up for transport.”

He pushed me through the double doors and out into the bright Arizona sun.  As my eyes adjust to the harsh light, I see the ambulance parked about 30 feet from the doors and a short Latino man also wearing a paramedic uniform walking towards us.  As he met up with us he said, “My name is Ernesto and I will be your driver today.”

They both loaded the stretcher into the back of the ambulance and as it was pushed all the way in I could hear and feel what must have been it locking into place.  As Matt was getting into the back to sit beside me, Ernesto said, “We should have you at the Mayo Clinic in about 30 minutes, if you need anything let Matt know.”

He closed the back doors and a few seconds later I could hear what must have been the front driver door opening and closing.  Moments later I could feel the ambulance start moving forward.  Matt turned to me and said, “Do you prefer to go by William or Will?”

I said, “Will is fine.”

“Alright Will, just relax and we will have you there in no time,” he said.

Nodding, I relaxed my body against the restraints and let my mind wander as I felt the movement of the ambulance and the sound of the tires against the road.  Sometime later, I felt the one thing that I didn’t want to feel on this trip, I had to poop.  Thinking to myself ‘CRAP!’ as I turned my head to Matt.  I asked, “How much longer until we get to the Mayo Clinic?”

Matt said, “About 10 more minutes, is there something wrong?”

“I have to go to the bathroom really bad,” I said.

Matt then said, “Try and hold it if you can but if you have an accident it will be OK.”

I nodded but turned my full attention to holding back my bowels.  The minutes seemed to drag on as I put all of my energy into clenching my butt cheeks together.  I felt the ambulance turn and with that motion, some poop slipped out; moments later the battle was lost as I felt my body force the rest of my bowels out.  I could feel it spread out all over my bottom, moving up my lower back, forward in my underwear covering my genitals, and down my thighs.  I turned to Matt with flushed cheeks and said, “I’m sorry, I couldn’t hold it.”

Matt gently placed his hand on my shoulder and with a look of concern and pity, he said, “It’s OK Will, as soon as we get to the hospital, we will help you get cleaned up.”

I nodded but looked away in shame, as I lay in what felt like a gallon of pluff mud and smelled like a paper mill.  A couple of minutes later, I felt the ambulance come to a stop, and moments later, Ernesto was opening the back doors.  Matt hopped out the back and they both pulled the stretcher out of the back of the ambulance.  Matt took over and quickly pushed me into what I imagine is the ambulance entrance to the emergency room at the Mayo Clinic.  As we make our way through the double doors into a hallway, we are met with an average-height Latino woman with shoulder-length hair,  in gray scrubs.

With a smile, she approached us and said, “You must be William, my name is Rosie and I will be your nurse.”

I just nodded and looked down at my lap.  Out of the corner of my eye, I could see Matt gesture to Rosie and they both stepped away to have a quiet conversation.  A few moments later, Rosie walked back up to me and said, “OK Will, Matt, and I are going to take you straight to your room on the stretcher, once there, I will help you out of your clothes so you can take a shower.”

I just nodded and continued to look at my lap.  A second later, Matt was pushing the stretcher and following Rosie down the hallways.  After a few turns and trying my best to avoid eye contact with passers-by, we arrived at an elevator.  We got on the elevator and luckily it was only the three of us, but in the enclosed space, the smell was back with a vengeance.  A minute later we were off the elevator and going down another hallway.  After passing what I assume is a nurse’s station, I was wheeled into a room.  Matt immediately started undoing the straps, while I saw Rosie place what looked to be a large incontinence bed pad on the floor beside the stretcher.  Rosie and Matt then helped me off the stretcher to stand on top of the pad.

Rosie said, “Matt, at the nurse’s station, is cleaning supplies and you can throw the fitted sheet away there.”

Matt said, “OK, Will, I hope you feel better soon.”

Matt rolled the stretcher back out of the room and shut the door behind him.  Rosie then turned to me and said, “Will, your clothes are a lost cause so I’m going to cut them off of you and then help with a rough cleanup before letting you take a shower.”

In a quiet voice, I said, “OK.”

Rosie took some scissors out of her pocket and then cut the pants leg of my sweatpants from the waistband all the way down to the cuff.  My pants were discarded in a pile between my legs and then she did the same with my underwear.  She grabbed a bunch of large wet wipes and then began to wipe down my back, butt, legs, and embarrassingly my genitals too.  She let my hospital gown fall back to my knees again and then said, “Let's go into the bathroom so that you can get into the shower.”

I followed Rosie into the bathroom with flushed cheeks and she started the shower, then said, “Alright Will, there is soap and shampoo in the shower already, towels and washcloths are right here,” pointing to the towel rack beside the shower, “you can leave your gown on the floor and I will have another gown and socks for you on the counter waiting for you by the time you are done.”

I nodded with my cheek still flushed from what was one of the most embarrassing moments of my adult life.  Rosie walked out of the bathroom, shutting the door behind her.  I immediately stripped out of the gown and threw it on the floor, then pulled my socks off and threw them on top of the gown.  Testing the water with my right hand, I stepped into the shower once the temperature was warm enough.  I let the water cascade down my body as I watch as slightly brown water goes down the drain.  Once the water was relatively clear, I took a washcloth and soap and scrubbed my body thoroughly from the neck down.  Once the soap was rinsed off, I turned the water off and grabbed a towel to dry off.  Stepping out of the shower, I see that Rosie has left the new gown and socks on the counter.  I put the gown on and struggled to tie the ties in the back.  After finally getting the gown on right, I sit on the toilet seat lid to put on my socks.  I stepped out of the bathroom to see that my parents made it here.

My dad walked up to me with a pair of folded pajama bottoms and underwear, and said, “Well, I always said you were full of crap when you were a teenager, but I never meant literally.”

My mom quickly shouted, “George!”

Smiling at my dad trying to make light of an embarrassing situation, I said, “I'm surprised that my eyes haven’t turned brown yet.”

With a chuckle, he handed me the pajamas and underwear, and I turned back around to head into the bathroom.  Closing the door, I slipped on the underwear and as I was trying to guide my feet into the pajamas, I lost my balance.  Like a sack of potatoes, I landed straight on my left shoulder and yelled out in pain, “MOTHERFUCKER!” 

As I am lying on the floor in pain, my dad comes rushing into the bathroom. “Will, are you alright!” my dad said in a scared voice.

In an angry voice, I said, “Yeah, I just lost my damn balance trying to get dressed.”

“Let me help you and get you into bed,” my dad said.

My dad then put a hand under each of my armpits and lifted me from the floor to my feet.  He then helped me pull my pajama bottoms up to my waist.  We walked out of the bathroom with my dad having one of his arms wrapped around my torso, guiding me to the bed.  Looking at the bed, I see that the covers are pulled back and there is an incontinence pad lying over the fitted sheet.  Thinking to myself, ‘I guess they don’t want to chance it after my grand entrance,’ I get into bed and pull the covers over me, hearing a slight crinkle from the pad as I shift around to get comfortable.  I looked around the hospital room and saw that it was not much different than the room at St. Luke’s.  The room is a little bigger, and there is a couch that is up against the windows to my left, a recliner directly to my left that my mom is sitting in, and a straight-back chair to my right.

As my dad was taking a seat on the couch, my mom said to me, “Will, I know you are not having a good day today. I just wanted to let you know that I called the math department and spoke to someone named Amy.  I let her know what was going on and that you were at the Mayo Clinic.  She said that she would talk to all your professors and let them know.  She also told me not to worry about your assistantship either.  Depending on how long it takes for you to get better, she said that we could do a medical withdrawal and you can return either this summer or fall if need be.”

With a sigh of relief, I said, “OK,” pausing for a second, I asked, “What are you doing about work?”

“I’m taking PTO right now, but if I have to, I can file for FMLA and get up to 12 weeks off.  But don’t worry about me and since your father retired early last year, we plan on staying here until you are better.  I already got Stanley to check on the house for us and get the mail.  Just worry about you right now.  OK,” my mom said.

“OK,” I said.

A few minutes later, Rosie walked in carrying a bag of fluids, a bag for my feeding tube, and a couple of syringes.  Setting everything down on a small table to my left, she said, “Will, I’m going to start your noon feeding and start you back on fluids.  How are your pain levels right now?”

“The morphine is starting to wear off and it probably doesn’t help that I fell on my shoulder early,” I said.

With a look of concern, she said, “You fell, what were you doing to fall?”

I said, “I was trying to get dressed and lost my balance.”

She then said, “I will be right back,” and walked out of the room.  A minute later, Rosie was walking back in.  “Will, with you falling earlier, I am going to have to classify you as a fall-risk patient.  Can I see your left hand?”

I held out my left hand and Rosie put a bright yellow plastic bracelet around my wrist with the words ‘FALL RISK’ written boldly on it.  Rosie then said, “Please make sure someone is with you anytime you need to get out of bed.  If your parents are not here, please press the call button and someone will be here as soon as possible.”

I said, “OK.”

Rosie then turned to my parents and said, “Please make sure you help Will with getting dressed, or me or another nurse could help.  We do not want him to get hurt.”

My mom responded, “Of course, his father will help from now on.”

Rosie turned her attention back to the table of supplies and started to hang the I.V. fluid bag and feeding bag.  She hooked the fluids to my I.V. and connected the feeding bag to my feeding tube.  She then took the two syringes and injected them into my I.V.  After throwing the two empty syringes away, Rosie said, “Your team of doctors should be seeing you in a couple of hours.  Let me know if you need anything in the meantime.”

On that note she walked out of the room and with the morphine taking full effect, I fell asleep.  I woke up to my mom lightly shaking my shoulder and saying, “The doctors are here to see you.”

I look at the foot of my bed and see three doctors.  The first one is a woman who looks to be in her late thirties with long blonde hair and blue eyes.  The second doctor is a tall man in his early forties, that looks to be Indian with short black hair and brown eyes.  The third doctor is a short man with balding brown hair and brown eyes, that looks to be in his fifties.  The Indian doctor spoke first and said, “I’m Dr. Kutner and I specialize in diagnostic medicine.”  Pointing to the woman on his right, he said, “This is Dr. Cameron and she specializes in autoimmune diseases.”  Pointing to the man on his left, he said, “And this is Dr. Taub and he specializes in genetics.”

Dr. Cameron then asked, “Will, we have been reviewing your case and would like for you to go over your symptoms with us again.”

I then spend the next ten minutes going over all my symptoms and what has happened to me over the past week.  Dr. Kutner then said, “I'm going to do a physical exam of you, is that alright?”

I said, “Sure.”

He proceeded to listen to my heart and lungs and poke and prod all over my body.  At the same time, Dr. Taub turned to my parents and said, “You all must be Will’s parents?”

My mom responded, “Yes I’m Elana, and this is his father, George.”

Dr. Taub said, “I wish we could be meeting under better circumstances, but it is nice to meet you all.”

Dr. Kutner, now finishing his exam, stepped back and said, “Will, I not seeing anything abnormal in your physical exam and your lymph nodes feel normal which confirms that we are still most likely not dealing with an infection.”

My dad asked, “What is the plan for figuring this out?”

Dr. Kutner said, “We plan on drawing some blood samples today to begin running tests.  Tomorrow is going to be a busy day for Will.  He will have a full body CT scan and X-ray done, to see if anything changed since his last.  He will also have an MRI of some key areas of his body and I will be performing a biopsy on a few of his joints tomorrow afternoon.”

Dr. Cameron followed up with, “With the blood samples, I will start looking at other types of autoimmune diseases that Dr. Wilson could have missed and with tomorrow's tests, could shed light on which direction we should be looking in.”

“With one of the blood samples, I will start sequencing Will’s DNA, and see if there are any genetic abnormalities that pop up.  Hopefully, if there is anything to find, we can find it quickly, but with how large the human genome is, it could take some time,” Dr Taub said.

“I will be supporting both Dr. Cameron and Dr. Taub, but I also will be exploring other avenues in trying to diagnose what is causing your symptoms.  Do you have any questions?” Dr. Kutner said.

I said, “No.”

“Get some rest, Will, we will see you tomorrow,” Dr. Kutner replied.

As they were walking out of my room, my mom said, “I feel better already after meeting the doctors.”

My dad then said, “Yeah, it seems like they have a game plan together and are attacking this from all angles.  How do you feel, Will?”

I said, “Better, I still hope they figure this out quickly.”

A moment later Rosie walked in carrying a caddy of empty vials, and what looked to be a needle and tourniquet.  Walking over to the right side of my bed, she sat the caddy on the bed beside me and said, “Will, it seems that the doctors want a lot of blood samples, I’m going to draw blood from your right arm, OK.”

I nodded and held out my arm and Rosie tied the tourniquet around my upper arm and began to draw vial after vial until the whole caddy was full of blood samples.  After throwing the used needle and tourniquet away, Rosie said, “That should be the last of the blood samples that they would need today.  I will be back at 6 to start the last of your feeding for the day and give you more morphine if you need it.  Let me know if you need anything else before then.”

Rosie walked out of my room with the caddy in hand and it did not take me long to fall back asleep.  I woke up twice before the night, one to go to the bathroom with the help of my dad, and the other to get more morphine and the last feeding of the day.  I fell back to sleep shortly after getting the morphine.

I woke up to it being dark outside and my joints screaming in agony.

[BabySofia]

Understand completely about the schedule not working sometimes! Glad to see an update! Great chapter! 🙂

[little won]

Truly enjoying your story. Thank you for sharing your time and talent.

[Kaiko-chan]

Secret fanfiction

[LGGrace]

12 hours ago, BabySofia said:

Understand completely about the schedule not working sometimes! Glad to see an update! Great chapter! 🙂

Thanks!

1 hour ago, little won said:

Truly enjoying your story. Thank you for sharing your time and talent.

Thank you.

43 minutes ago, Kaiko-chan said:

Secret fanfiction

I was wondering how long I could get away with naming doctors from House MD (Wilson, Cameron, Taub, Kutner) before someone noticed. Sadly, House will not make an appearance.  It is my favorite medical drama TV show and is a big influence on the first 1/3 of this story.  I do plan on hiding more pop culture Easter eggs throughout the story.

[Kaiko-chan]

4 hours ago, LGGrace said:

Thanks!

Thank you.

I was wondering how long I could get away with naming doctors from House MD (Wilson, Cameron, Taub, Kutner) before someone noticed. Sadly, House will not make an appearance.  It is my favorite medical drama TV show and is a big influence on the first 1/3 of this story.  I do plan on hiding more pop culture Easter eggs throughout the story.

Wilson and Cameron are easy to miss as they aren't uncommon names. Taub and Kutner however were kinda giveaways. As for other references grays anatomy maybe? 

[LGGrace]

3 hours ago, Kaiko-chan said:

Wilson and Cameron are easy to miss as they aren't uncommon names. Taub and Kutner however were kinda giveaways. As for other references grays anatomy maybe? 

I do have another show in mind when Will eventually goes home, but I don't want to ruin the fun of the Easter egg hunt.😁

[Craisler]

Now that he’s a fall risk and shouldn’t be getting out of bed by himself, they typically arm the bed alarm that senses a reduction of the weight on the bed.  So, if he tries to get to the bathroom on his own, the alarm goes off letting everyone in the vicinity that he’s not complying with the staff’s instructions. 

[LGGrace]

6 hours ago, Craisler said:

Now that he’s a fall risk and shouldn’t be getting out of bed by himself, they typically arm the bed alarm that senses a reduction of the weight on the bed.  So, if he tries to get to the bathroom on his own, the alarm goes off letting everyone in the vicinity that he’s not complying with the staff’s instructions. 

You are correct.  I spent a lot of my late teens and early twenties in and out of the hospital and was only labeled a fall risk once.  They didn't tell me, but the bed had an alarm that would go off at the nurse's station.  It took me a few times getting out of bed and a nurse barging in a minute later to realize it.

[LGGrace]

 

I was hoping to get this chapter posted a little earlier, but went down a rabbit hole when researching biopsies.  No promises, but I will try to have chapter 9 posted Sunday night.

Chapter 8

With the intense pain waking me up, I look frantically for the remote to press the call button. Taking deep shaky breaths, I find the remote in the dark and hit the call button. As I waited for the nurse, I gripped the covers so tight that my knuckles were probably white if I could see them. Each second seemed to drag on as I waited for the nurse. After the longest 2 minutes of my life, a nurse walks in and cuts on the lights. She said, “What can I do for you, Will?”

Between breaths, I was able to muster out, “I need more pain medicine!”

“You’re not scheduled to have another dose for another 2 hours, can you wait until then?” she said.

“NO!” I almost shouted at her.

She responded, “I’m going to go get the attending doctor and will be right back.”

As she was walking out of the room, I heard in a groggy voice, “Will, what’s wrong?”

I look to my left to see my mom tossing off a blanket and getting off the couch. She rushed to my bedside as I said, “I. Need. Pain. Meds.”

“Was that the nurse that just left?” she asked.

I nodded and my mom said, “Hopefully, she will be back soon.”

She looked at me with concern and grabbed my hand which was clutching the sheets. I held her hand in a death grip as I stared at the ceiling tile directly above my head and kept taking deep breaths in and out to keep from screaming out in pain. Five long minutes later, the nurse rushed back into my room. “Will, I spoke with the attending doctor and he prescribed you a more powerful medicine called Dilaudid,” she said.

Injecting the syringe into my I.V., I felt a rush to my head and my peripheral vision blurred for a few moments. Then relief washed over me as my hands lost their tight grip on my mom and the sheets. With a sigh, I said, “Thank you.”

The nurse said, “Certainly, Dilaudid is about 10 times stronger than morphine and lasts longer too. You shouldn’t need anymore until tomorrow morning.”

I said, “OK.”

On that note, the nurse walked out and my mom placed a hand on my cheek and said, “Get some rest and wake me up if you need to go to the bathroom,” then kissed me on the forehead.

I nodded, then turned onto my side to let sleep overtake me again.

I woke up to Rosie gently shaking my shoulder, “Good morning Will, do you need any more pain medicine?”

Wiping the sleep from my eyes, I shake my head yes as I can now feel my joints start to ache again. Rosie injected my I.V. with Dilaudid and another syringe of nausea medicine. She then connected the feeding bag that was already hanging from my I.V. pole to my feeding tube. Unplugging my I.V. pump, she turned to me and said, “Let’s go get you weighed and measured this morning.”

I slowly got out of bed with Rosie’s helping hand. As soon as I put all of my weight onto my legs, I lost my balance and immediately grabbed Rosie to keep from collapsing onto the floor. “Will, are you alright?” Rosie asked.

As she was helping hold me up, I said, “I just feel very weak.”

“Are you able to walk to the nurse station?” she asked.

“I should be able to with some help,” I responded.

My dad stepped in and wrapped an arm around my torso to support most of my weight as I leaned against him. My mom then took the I.V. pole to push alongside me. Taking shaky steps, we all made the short trip to the nurse’s station not too far outside my room. My dad helped me step up onto the scale and kept a hand on me to keep me steady and only briefly letting go so that Rosie could get an accurate weight. Rosie said, “Will, you are 5 foot 3 and 105 pounds.”

With it being Groundhog Day with that information, all my parents and I could do was just nod. We slowly made our way back to my room and halfway there I was hit with the need to poop. Looking up at my dad I said, “I need to go to the bathroom.”

“Alright, we will head straight there,” he said.

As all three of us walked into the bathroom, my bowels were ready to erupt. Standing in front of the I yanked my pajama bottoms down and as soon as my butt touched the toilet seat, I unleashed a torrential mudslide into the toilet bowl. I didn’t even care at the moment that I had an audience and was using the bathroom like a preschooler. At that moment I just felt relief. My parents quickly exited the bathroom to give me privacy. On the way out my dad said, “Will, let me know when you are done and I will help you to bed,” as he left the door slightly ajar.

After a couple more waves of poop were evicted from my body, I wiped and flushed the toilet. I called out, “I’m done.”

My dad walked back into the bathroom, placed his hands under my armpits, and lifted me to my feet as I pulled up my underwear and pajama bottoms. Wrapping one arm around me and taking my I.V. pole with the other, we stopped by the sink to wash my hands, then made our way back to my bed for me to collapse into it. Already exhausted, it didn’t take me long to fall back to sleep.

I woke up to Rosie flushing my feeding tube and replacing my bag of fluids. She then said, “Will, someone will be here in a few minutes to take you to get your x-rays, CT scan, and MRI scan.”

I nodded and a minute later an orderly came into my room pushing a wheelchair. He asked, “William Gauss?”

I nodded yes and he said, “I'm going to be taking you downstairs to radiology.”

My dad walked over and helped me out of bed and in the wheelchair. The orderly took my I.V. pump and bag of fluids and placed them on the I.V. pole that was attached to the back of the wheelchair. A few minutes later, I was left outside of radiology for an x-ray. The technician took me back into the room and after 15 minutes of getting a full body x-ray, I was sitting back in the wheelchair outside of the room to get my CT scan. Another technician wheeled me into the room and I had full body scans taken with and without contrast. The process took about 45 minutes and I found myself falling asleep then being awakened by the technician over the intercom instructing me to hold my breath during certain aspects of the scan. After the CT scan was complete, I, again, found myself waiting outside of a different room to get my MRI.

After a few minutes of waiting, a technician walked out and asked, “Are you William Gauss?”

Looking up, I see a man of average height and build with short brown hair and blue eyes wearing light gray scrubs. I responded, “Yes.”

“My name is Chuck and I will be taking your MRI today, have you ever had an MRI before?” he asked.

Shaking my head, I said, “No.”

He said, “That’s OK, we use a strong magnet to help take an internal picture of you. It can be very loud.”

“Yeah, the strong magnet causes all of the dipoles of the nuclei in the atoms of my body to align with the magnetic field. Based on how long it takes for the nuclei to return to their original orientation after the magnet is turned off, it tells the detectors what type of tissue it is. The reason why the boundaries between different types of tissue are blurry is because of the Gibbs effect and is a natural consequence of the solution along the boundaries of the partial differential equation used to construct the image.” Pausing for a second, I then sheepishly said, “Sorry, I'm kind of a big nerd and sometimes can’t help myself.”

Smiling, he said, “That’s OK, it’s nice to know a patient who has a good understanding of what I do.”

After verifying my medical history to make sure that I didn’t have any magnetic material in my body, he disconnected my I.V. and helped me into a pushchair that was nonmagnetic to wheel me into the room. Chuck helped me onto the sliding table of the MRI machine and connected my I.V. to a line while explaining, “This is so I can inject you with contrast during the MRI.”

Before placing headphones on me, he said, “This is to protect your hearing from the loud noises and so that I can give you instructions from the control room. Since this will take a while, we usually play music to help keep you calm while being in such a tight space. Do you have anything in particular that you would like to listen to?”

Thinking for a second and deciding to keep it simple, I said, “90s alternative rock would be fine.”

After spending nearly an hour in the small tube of the MRI while listening to the loud blaring music of Pearl Jam, Alice in Chains, Mazzy Star, Gin Blossoms, 4 Nonblondes, Local H, and the periodic loud mechanical whirring and banging of the MRI machine; Chuck had finished all the imaging and brought me back out into the hallway to wait for an orderly to bring me back to my room. Roughly 10 minutes later, I was back in my room and as soon as I was back in bed, exhaustion sent me back to sleep.

I woke up to Rosie shaking my shoulder and asking, “It’s about time for another dose of pain medicine. Do you need any?”

After a few moments of taking stock of my body, I said, “Yes, the last dose is starting to wear off.”

As she was injecting the Dilaudid into my I.V., I asked, “What time is it?”

“It is a little after 2:30,” she said.

I asked, “Wasn’t I supposed to get fed from my feeding tube at lunch?”

She responded, “You did. You slept through both, me connecting your feeding bag, and then an hour later flushing your feeding tube.”

I said, “Oh, I must have been really tired.”

She said, “Must have, but I say when in the hospital, it is always good to get as much rest as possible. Especially, since it is hard to get quality sleep here. One of your doctors should be here soon to perform the biosis.”

I said, “OK,” and she walked back out of my room. I turned to see my mom on the couch and my dad in the recliner with the remote watching TV. Deciding to try and stay awake while waiting for the doctor, I watched reruns of The Office with my parents. About 30 minutes later, Dr. Kutner walked in holding a tray.

“Good afternoon Will, how do you feel today?” he asked, as he set the tray down on the table next to me.

I said, “I'm just exhausted.”

“This biopsy should not take too long and you can get some rest for the rest of the day. I hear that you had a rough night; has the Dilaudid been helping?” he asked.

“Yes, it seems to keep the pain at a minimum between doses,” I responded.

He said, “That’s good to hear, we will do our best to keep you comfortable. I’m going to perform what is called a Synovial Biopsy on your left elbow and right knee. I will inject a numbing agent into both joints, then I will use a special needle to pull a small tissue sample from the joint. Do you have any questions?”

I said, “No.”

He then said, “Alright, let’s get started.”

Dr. Kutner pulled back the cover that was over my right leg and pulled up the pants leg of my pajama bottoms past my knee. He took some alcohol swabs off the tray and began to wipe down both my knee and elbow. Taking a syringe off the tray, he injected it into my knee and then took another one to inject into my elbow. “We are going to need to wait a few minutes for the numbing agent to take full effect,” he said.

My dad then asked, “How is this going to help in finding out what is going on with Will?”

Dr. Kutner responded, “This is a useful tool in diagnosing many different types of diseases, but what Dr. Cameron and I will be looking for, in particular, is autoimmune diseases and I will also be looking for mycobacterial inflections where a Synovial Biopsy is the only way to properly diagnose them.”

“Elaina and I felt a lot better after meeting y’all yesterday and this just confirms to me that y’all are doing all you can to figure this out,” my dad said.

With a small smile, Dr. Kutner said, “Thank you, my passion is helping patients like Will get the proper diagnosis so that they receive the care that they need.” Turning to me he said, “Are you ready?”

I nodded and said, “Yes.”

Taking a large needle off of the tray, he turned to me and said, “I’m going to start with your right knee. I’m going to need you to stay as still as possible.”

I nodded, then watched as Dr. Kutner plunged the needle into my knee. It was odd that I felt no pain but just pressure from the force of the needle going in. He then pulled the plunger back and I watched as the syringe filled with what looked like bloody pus. He set the needle back onto the tray and grabbed a cotton ball and tape to cover the puncher wound from the needle. He took another needle and repeated the same process on my left elbow.

As he was pulling down my pajama pants leg and pulling up the covers for me, he asked, “That was too bad, was it, Will?”

I said, “No, it didn’t hurt at all.”

He said, “Dr. Cameron, Dr. Taub, and I will see you in the morning to go over some of the primary results from yesterday’s blood work and today’s scans. I should have the results back from today’s biopsy either Thursday or Friday.”

I said, “OK.”

My mom then said, “Thank you, Dr. Kutner.”

Not long after Dr. Kutner left; I fell asleep. I woke back up to the intense need to vomit.