Finalized Plans (Hospital Day #12)

 Hi Friends!

      Last night was fairly quiet, but painful.  Very thankful for meds that provide some relief, though!  I watched a couple movies with my Momma.  They had to call IV team back because I lost my last IV that I really needed because my hickman only has 2 lumens which are used for my Benadryl and TPN.  They really wanted another access for antibiotics and bolus meds, but IV team came in around 1:30 this morning only to search and inform me I had nowhere really to put another IV.  So I’m limited to just my hickman right now and they have to stop my TPN any time they have to do antibiotics or any of my other IV meds.

Can you believe I have spent about 23 of the 30 days of September in the hospital?  September has not been my month for sure!

The GIs PA came in this morning to inform me that they still hadn’t gotten any response from the surgeons, but were hoping to finalize a plan today.

The hospitalist came and pretty much just confirmed what the GIs are wanting to do and that she was waiting on them to give her specific timeframes and such.  I asked her if she could see if radiology would swap out my G tube for a bolus style instead of a standard.  The difference is that a bolus style only has the one main port that I hook up to my drain bag whereas the standard has a little medicine port as well.  What happens is the pressure from my stomach draining pops that port open and then it just pours all over the place.  I had a bolus style in until they swapped it out during the scope when they found the balloon imbedded.  It has been very inconvenient because it just makes such a mess and I now have gauze and tape on it to avoid getting soaked again.  So...she put in orders to get it swapped out.  Oh, and the hospitalist was my favorite doctor today....she didn’t even squish my belly!!!!!  I swear some doctors think the only eyes they have are in the ends of their fingers!

I then saw respiratory just to check up and make sure my lungs are working good.  She was quite shocked at just how much air I could suck into my lungs.  I informed her that I play the trumpet and then she knew why I had such lung capacity!  That’s just one of the many perks of playing an instrument that requires a lot of hot air! ;)

Transport came to take me to radiology around 1:15 to get my G tube swapped out.  However, after waiting in radiology, we were informed that they don’t have the bolus style tube in stock.  Lovely!

After speaking with the radiologist, I was waiting on transport when the GI showed up in radiology.  He had gone to my room but had to track me down to radiology. :)  He said he was waiting on one more call from the surgeons but he wants to go in endoscopically sometime in the morning, place a DobbHoff NJ tube, exchange my defective G tube, and most likely remove my J tube.  If he doesn’t remove it while I’m in endoscopy then it’ll be removed later when I’m in my room.  He said that is his plan unless the surgery team tells him something totally different.  Then hopefully we can start my feeding back without issues!  There is a risk that surgery won’t put in another J tube in the future, but, as the GI said, if this is what they think it is (irritation and pain from the tube being there) then it will never get better without doing this.  SO, the risk of doing this is having a longer term NJ or having to try to figure out how to get a GJ to work.  Hopefully surgery won’t be that stubborn!

I had a request to tell about Ezra’s recent hospital adventures...

When my sister arrived at the hospital this morning she had a new toy for Ezra and he knew it without anyone saying anything!  He dug it out of the bag she was carrying and then planted himself when she was trying to get him to go out for a walk!  She had to practically drag him out of the room and then he couldn’t get back fast enough because he knew his new toy was awaiting him!  He then played with it for over an hour before finally taking a break!  We have had the same day nurse for the past 3 days and she used to be a vet tech before becoming a nurse.  Every time she comes in, she plays with him and he LOVES her!  It has gotten to where he recognizes her voice and perks up because he knows he’s going to get to play with her!

So, I plan to take a shower this evening, get everything ready to go for tomorrow’s procedure, and chill out watching movies til bedtime!  Sounds good to me at least! ;)

Taking Life One Hospital Day at a Time...

Allison

Just Another Day... (Hospital Day #11)

 Hello Friends!

      So, today has been pretty quiet.  Not really any

Just a girl and her service dog
chillin’ in the hospital :)

decisions made.  The GI is wanting to pull my J tube and place an NJ tube but he has to get surgery on board to make sure they’re game to do another J tube for me.  He put in a call to the surgical team today, but hadn’t heard anything yet when he came to see me.  He said usually that means they’re in surgery so hopefully they would get back with him today.  If not, he was going to contact someone else, but I don’t remember who.  So, if this plan goes down they will remove my J tube, place an NJ via endoscopy (so I won't have to be awake for it!!) , get my formula going through the NJ, and Hopefully go home while the J tube stoma heals and closes up good (tentatively a few months), and then do surgery to place another J tube.  However, this all hinges on if the surgical team has any *good* ideas left and if they’re willing to go along with that plan.  Might I add, I just love how doctors call this horrendous J tube pain “discomfort”!  I’ve been slightly tempted to tell them to get a J tube in them, make it hurt like this, and then see if they still call it “discomfort”!  Sorry, but that is a massive understatement right now!!!

Infectious Disease has officially cleared me for home from an infection standpoint.  My two antibiotics are scheduled to end on the 4th of October.  The J tube culture officially came back as pseudomonas (the very same bacteria I had the last infection battle).  The bright green drainage has stopped since starting the second antibiotic, thankfully!

After I saw all the doctors, I did a little doodling in my sketchbook and a little more decorating in my temporary humble abode.

Taking Life One Hospital Day at a Time...

Allison

Hickman Placement & Possible J-tube Plan (Hospital Day #10)

 Wow!  10 days...really?  Only 10 days?  I feel like I should be seeing the landlord by now and it may become necessary to sign a lease agreement.

So, the hickman placement went well.  I’m VERY

My new hickman

sore, but okay.  They had to insert it farther over so the nerves aren’t very happy right now.  I think it’s partly due to me being in so much pain already with the J tube that adding on the new line pain just escalated everything.

A while after getting back to my room, the GI team came in.  Unless they can concoct a different plan by tomorrow, they’re talking that the next step may be removing the J tube and placing an NJ or putting me on TPN while it heals.  They’re leaning more towards an NJ just because that would be the better of the two evils.  GI has about reached the end of their options otherwise.  There is nothing obvious on the outside and nothing obvious on the inside so they’re beginning to think it is the actual stoma that is the issue.  If they come to that conclusion, they will then have to convince their at

I survived!

least somewhat enemy.....the surgical team.  Talking about the surgical team - apparently they looked at the wrong images from when my GJs were flipping because the radiologist looked and said that the J tube isn’t flipped backwards.  SO, I may end up without a J and with an NJ for a few weeks after all.  It just depends on what everyone decides.

Thank you for your continued love, prayers, and encouragement!

Taking Life One Hospital Day at a Time...

Allison

Hickman Placement (For Real This Time)

 Howdy!

     So I’m headed down for a hickman placement now.  Also, the surgeons are wondering if my pain with feeding is due to my J tube facing the wrong direction and the formula having to flow past the balloon inside.  They want IR to see if they can flip it back into the correct direction and see if that fixes that problem.  I still feel like no one is addressing the relentless, constant horrid pain, but maybe they’re thinking that would cause that as well?  At least it’s a little different than everyone has been doing!  So, I requested they do whatever with the J tube while I’m under anesthesia for the hickman...that way I don’t have to be conscious and tortured while they manipulate it!  So hopefully they’ll do that while I’m getting my hickman placed!

Thank you in advance for your prayers!

Allison

Blessings (Hospital Day #9)

Hi Friends...

        I’ve been digging in my ER records trying to fill in some really huge memory gaps and I’ve really realized just how sick I was.  I was classified as having sepsis which is a very dangerous spot to be in.  I know I was deathly close to septic shock which can lead to death extremely quickly.  It’s mind boggling to think all this happened within a 24 hour period of time.  Not only was my consciousness almost non existent,  but I had a fever of 103, heart rate of 140, mildly fast breathing, and mild pulmonary hypertension from the infection.  It was even more serious than I originally thought.  I’m very blessed to be sitting in a regular hospital room writing this update right now instead of in an ICU bed, fighting for my life!  It really puts things in perspective!

I saw the weekend team again today.  The hospitalist was a different person than yesterday.  She literally came in, listened to my lungs, squashed my stomach and was headed out!  LOL  Not that there was really anything different to talk about.  She stopped long enough to agree to fix my IV tylenol in my chart back to where I can get it for pain instead of just for fevers, thankfully!

The GI came in and asked if there was any change and when he heard that there wasn’t, he said he’s concerned that maybe the little fistulas they’re seeing in the CT scans are causing feeds to leak into the abdominal wall, causing the pain.  He said he dove deep into my records and as far as he could see, they hadn’t determined the cause of the pain yet so he was contacting the surgery team to come see me.

I then managed to get up and make my room a little bit more cheery and homey by adding some decorative lights and pictures to my handrail.  It helps to lighten the mood a little and see some of the faces that keep me fighting!

My decorated handrail in my hospital room :)

The surgeons came and it was worse than a nightmare!  They came 2 hours before my pain meds were due and absolutely, heartlessly tortured me!  Not only did they squash all over my abdomen around my J tube, but they started wiggling the tube all over the place, moving it in and out, and then deflated the balloon and pulled the balloon shaft into the stoma to see if there was any puss....leaving me bawling my eyes out and begging for early pain meds.  Thank God for a godsend hospitalist who came to my rescue and promptly got my IV tylenol back in order and added a one time extra dose of the narcotic!  Oh, and might I add, the whole time the surgeon is torturing me he asks “does that hurt?” like DUH, I am nearly screaming and climbing out of the bed and you can’t tell if it hurts or not?!  My J tube pain is the worst it has been since the exchange on 8/19!  I think the “doctor” with the most sense today is my nurse! ;)  She’s on the same page as me just wishing they would listen, work together, and really problem solve this one!  I think at least part of the surgeons attitudes is from the fact there seems to be a feud going on between GI and the surgery team right now and I’m kinda caught in the middle.  The GIs want surgery to maybe do something surgically only surgery doesn’t want to do anything.  To beat all, you know what the surgeons were seriously thinking about doing?  Changing the tube out....again!  It’s like hello, can we please stop doing the very same thing over and over again???  The surgeon told me I’d be seeing a lot of their team which is very comforting, especially after today!....NOT!

My arm continues to be very
swollen and angry from IVs

My hickman is tentatively scheduled for tomorrow so please be in prayer for a good radiology & anesthesiology team, a smooth procedure without reactions, and a quick recovery!  I do not have a known time slot right now so I will try to let y’all know when I hear any specifics.

Taking Life One Hospital Day at a Time....

Allison

Misunderstandings, More Antibiotics, & New Findings (Hospital Day #8)

 Howdy...

     Let me first apologize for the misinformation I posted earlier.  I was told at 5:00 this morning that I was scheduled for a hickman placement at 7:00am.  So I got up and got all ready for transport to take me down only to watch the time tick away.  I asked again

Look at the size difference!

The look of an arm that says
“NO MORE IVs!”

and learned the order was put in, but it wasn’t scheduled.  After a lot of phone calls and enquiries, I was informed it’ll be Monday.  So a day and a half of IVs til I can get a hickman...an overwhelming thought right now seeing as how I have seen IV team nearly every shift the last few days because, for the most part, IVs are lasting less than 24hrs.  My arms have about had it.

All the doctors I’ve seen today were from the weekend team so anyways... 

The infectious disease doctor came by to inform me that they are starting me on a second antibiotic because the preliminary results of the culture they did of my J tube is showing signs of a gram negative bacteria (same type I had the last infection).  Thankful we caught it at the green drainage and not after it had made it into the bloodstream.

I saw the GI doctor who really wasn’t up to speed on what’s going on.  He said he was going to dig down into my records and such and see if there’s anything else they can do.  He said it may be time to contact the surgical team about it.  We’ll see what happens with that.  He did say it’s no use to keep doing the same thing over and over again with no change which is what I’ve been saying all along.

The hospitalist came in just to touch base with me, but nothing was changed from their standpoint.

As it stands, it will be at least Tuesday before I can go home and that could be stretching it because it doesn’t sound like they’re going to let me go without controlled pain and a solid nutrition plan in place.

Taking Life One Hospital Day at a Time...

Allison

Hickman Placement

 Hi!

Just a quick note to let y’all know that my hickman placement is tentatively scheduled for 7:00 this morning (Saturday)!  Please pray for a safe placement and successful line!

Allison

Nightmare Night But Better Day (Hospital Day #7)

 Hello There!

         Honestly, my night was a nightmare!  The J tube pain took a huge turn for the worse.  It surpassed excruciating and left me in tears about 75% of the night.  Apparently the GI doing the scope wasn’t my J tube’s idea of fun.  They’re still clueless as to what’s going on with my J tube, but hopefully I’ll see the GI tomorrow and come up with a reasonable plan.  IV team had to come around 1:00am because I lost my midline and another IV.  After about an hour, they finally got 2 IVs.  IV team is pushing to get my hickman placement streamlined because of my poor access.  I then lost one of those IVs later this morning.

The hospitalist came in to see me earlier than usual so she could approve an extra pain medication.  She said that she wanted to stop my PPN and try to get my feeding up.  She said of course they were going to keep me comfy with pain medicine today and then we could try to get my feeding up tomorrow... I may have to inform her she’s barking up the wrong tree if she thinks I’m going to push things.  I’m sorry, but I’m not going to keep doing this over and over without a change!  The last few days, I’ve begun having some of the bright green drainage I had been having with the previous infection so the doctor ordered a culture to see if the bacteria I had previously is growing in that stoma again.  She said she didn’t think infectious disease was going to go with streamlining the hickman placement.

I then saw the GI’s PA who confirmed the results of the scope and said they were still trying to confirm a plan and I’m supposed to see the GI I’m guessing tomorrow.  BUT they said nothing about trying to push for feeding, so I’m hoping that’s not their next step.

Infectious disease came and let me know my cultures are clear and from a blood infection standpoint, I’m ready for a hickman.  However, with the recent development of green drainage around the J tube site, she would recommend holding off unless I just get to a point where I don’t have good access and urgently need one.  The hospitalist, of course has the final say so we’ll see what she thinks.

Most of my day has been spent coloring and watching Petticoat Junction with Momma besides a bit of napping after getting some pain relief.  Hopefully my J tube at least improves back to the level of pain I was at because, as it is, just my IV tylenol alone isn’t helping as much.

Well, that’s all folks! :)  The pain is still overwhelming, but I have a little better outlook today.

Taking Life One Hospital Day at a Time...

Allison

Scream...Laugh...Cry? (Hospital Day #6)

 Hi Friends!

     So this morning was nice.  I woke up early, did a little walking around in my room to organize things some, colored a little, saw the hospitalist who was just checking in on me (and informed me my hemoglobin

My sweet Ezra soaking up some last
minute snuggles before I had to leave him.

is now 9.4!!!), and got half a shower before heading down to endoscopy.  I had just gotten my hair washed when transport came to get me so I had to jump out and get dressed super quick so they could take me.

Life was a lot greater prior to going under anesthesia.  I think my guard weakened and I allowed my hopes to get up - something I know better than to ever let happen!  My motto is *always* expect the worst, hope for the best.  I got my hopes high enough that I expected a lot different results from the scope.  Anyways.  So, the jejunum (intestine where J tube is) looks great.  Lovely!  Back to square one.  Their thoughts are now that maybe the pain is muscular and when I try to feed and the intestine starts to expand that the intestine actually starts spasming, causing the added pain.  That may be the truth for that spectrum of it, but my question for them tomorrow is “what on God’s green earth is causing the constant, relentless, overwhelming pain?”....I didn’t have this constant pain until after the tube change in August that I REALLY regret ever having.  The GI said they may try a spasm medicine for it to see if I can tolerate feeding.  He said the tricky part is going to be that I normally do around the clock feeding.  Frankly, I don’t even know what to think right now.  Just really, really bummed that they didn’t find something they could fix....and it doesn’t help that I’m one of those unfortunate people who always gets an emotional reaction to anesthesia and is a great big crab apple for hours and hours afterwards!  So I may be slightly less overwhelmed in the morning when I’ve “slept it off”! ;)  Moving on to what they then found at my chronically painful G tube that’s been hurting for months (however, not near like the J tube)... They backed the scope up to evaluate my stomach and G tube area and were shocked with what they found.  The balloon that holds the tube in was actually imbedded in the abdominal wall and when they pulled it out, there was a large ulcer and puss in the tract so the GI thinks he may have found the source of the infections.  So, they changed my G tube and secured it looser so hopefully it’ll heal up good.  Now, think about that for a minute...it kind of gives you a little perspective on this J tube pain I’m having.  I don’t know how many times I’ve told the doctors (when talking about my G tube) “but it doesn’t hold a candle to the J”...with all that happening with my G tube, my J tube pain still hurts so very much worse!  I think the hardest thing with all this is the impending gloom of knowing they’re going to want to try my feeding again.  I know it may sound like a petty thing, but when you’ve tried what feels like a million times only to experience the same horrible pain and agony over and over and over again....it becomes a task worthy of tears.  I want so bad just to give up - I’d rather starve!  You don’t know just how much I want to pull this J tube out right now and forget it.  There’s only so much a girl can take.

So, CMC Dental turned me down which means I will unfortunately be making the 3hr trek to go back to UNC Chapel Hill.  Due to all that has been happening with infections and malnutrition, I have had to postpone my October 5th OR appointment a little.

So, all said and done - I don’t even know what kind of day I would classify today.  It was both good and bad.  I need your prayers not just physically, but I’m really, really struggling emotionally.  Just really discouraged, exhausted of pain, and really have nothing left.

Allison

Best Day Yet + Big Day Ahead (Hospital Day #5)

 Hello There!

      A lot has happened and been decided today.

My morning was slower, allowing me time to change

Doing some coloring
while Ezra chilled beside
me on my bed, chewing
his antler bone :)

clothes, play with Ezra, put decorative lights on my bed, and leisurely do some coloring while listening to Christian radio.  Very relaxing!  I was then given another pint of blood so Christina and I watched some Sue Thomas F.B.Eye while that was going.

I saw the hospitalist.  Nothing new from her.  She just came to check up on things, make sure how I was doing, and let me know they were giving me another pint of blood because they want to get my hemoglobin in the 8s while I’m here.

It wasn’t long after I saw the hospitalist that they started my blood transfusion.  That went smoothly and I’m still waiting on results from follow up labs to see what number my hemoglobin is at now.

A while later, the GI came to see me.  They have decided instead of risking things with dye they are going to go down with a scope through endoscopy and try to get all the way down to where the J tube is.  If they can’t reach down far enough, they will use a tiny neonatal sized scope and go in through the J tube stoma to scope that area and see if there’s any irritation/ulcers/etc..  If that test comes back clear then they said the problem is probably in the abdominal wall and they’ll move on to investigating that farther.  That is tentatively scheduled for 1:30 tomorrow (Thursday) afternoon and they’ll probably come get me around 12:30.  They’re also going to look around my stomach/G tube to see if they can identify the issue I’ve been having for several months now with the G tube pain.  I know I haven’t said much about the G tube lately (the J tube has understandably taken priority), but essentially the medicine they put me on to try to heal up the G tube has helped greatly with reflux, but not really changed the G tube.

I saw the dentist this afternoon!  I was scheduled to see them in their office yesterday, but of course I’m in here and couldn’t go.  Thankfully, since they are here at the hospital, they came to see me!  I had scheduled with them because if they can do my dental work under anesthesia then I’d be closer to home instead of all the way in chapel hill.  Anyways, they’re going to see about them possibly taking me down to the office sometime while I’m here so they can get some X-rays and such.  It’s not too promising that they’ll actually do the dental work here, but there’s a little chance.

Another exciting thing is that they tried giving me IV magnesium and I did fine with it!!!!!  I have reacted to all magnesium I’ve ever tried, but I had never had the IV form.  Tolerating this means they can add it to my PPN (IV nutrition) and help get my magnesium levels back up!

I got a change of scenery!  I had been on the heart floor, but a heart patient really needed my room so they moved me to a different floor.  I now have a nicer, bigger room and Ezra has some extra space to move around!  He’s happy about that!

Alrighty.  I guess that’s all for today.  I’ve got a big day ahead and I’d greatly appreciate your prayers!

Taking Life One Hospital Day at a Time...

Allison

 

Interesting Day...To Say The Least (Hospital Day #4)

 Hey y’all!

     So, I didn’t have such an amazing night.  I tried bumping my rate up to 8ml an hour and ended up in rough pain so I cut it off and took an IV tylenol.  I was really nauseous so I took some IV Zofran to calm that down.  I waited a few hours before restarting my formula at 7ml an hour, but that didn’t work either so they let me take another IV tylenol a little early and then I stopped my feeding altogether.  I got back to sleep only to be awoken by extreme nausea about 6:45.  Thankfully the doctor was kind enough to let me have another dose of Zofran a little early.  Then they did shift change for the nurses and to put it bluntly - I got a rotten trade. 😕  Lets just say we do not jive and she is putting my “anger management” to the test! 😉  She did a lot of questioning me in a way that she was implying things and then to top things off, she pushed

My bad IV.....Story of my life.😕
And the nurse still used it!

medicine through my bad IV and hooked my antibiotic to it.  Then I realize my antibiotic that is supposed to be run at 100 was actually set at over 280!  One thing is for sure...counting down the hours until 7:00!

I started the PPN (IV nutrition) last night and it seems to be doing perfectly fine!  So very grateful!

I saw infectious disease first.  She basically just went over everything again and informed me that they had to redraw blood cultures today because the person who drew them yesterday only drew one set instead of the two they’re supposed to draw.

I then saw the new hospitalist.  They switch out hospitalists every Tuesday.  Yeah, not sure I like her very much.  Doesn’t help that the nurse talked to her before I got a chance so she already had “ideas” in her head.  Just don’t get me started right now.  Unfortunately, they don’t take 12hr shifts...you have to wait a whole week to trade hospitalists out. 😕  Maybe once she gets to know me she’ll do a little better?  A girl can always dream! 🙂  It might help once she talks with the other doctors.  She’s going to talk with my hematologist about possibly doing another blood transfusion to get my hemoglobin up above 8.

The GIs PA came to see me today to talk about what they may be doing test wise with my J tube.  They want to try some type of X-ray dye through my J tube to see if it’s possible my formula is getting caught somewhere in my intestines and going where it’s not supposed to, but that’s the only way to know for sure if there are any fistulas and such in my intestine.  She said they won’t put in any orders or anything until they talk with me again when they decide exactly what they want to do.  They said it may come down to having to move the site, but they just want to make sure of the problem first because you certainly don’t want to move it if it didn’t need to be moved!!

My little IV went bad on me so IV team will have to come back to find another one and possibly place a midline for bolus medicines and blood draws.  That might help preserve my veins a little better.

Today is Mom’s day to be with me in the hospital so we are chilling out between doctors and binge watching Petticoat Junction.  The arrangements here at

My sweet Ezra sacked out
on my lap 🥰

the hospital are that one person can stay with me for 24hrs and then they can switch out for another person for the next 24hrs.  So Mom and Christina take turns.

Hope everyone has been having a good day! 😊

Taking Life One Hospital Day at a Time...

Allison

PPN, Transfusion, Cultures, & IVs (Hospital Day #3)

 Hi Friends!

      So, last night my bag of IV nutrition was delivered, but I had totally forgotten one thing that I cannot have and that is magnesium.  Unfortunately, I had to make the decision to hold off.  The IV nutritionist got everything worked out so I should start at 9:00 tonight.  Please pray that I tolerate them well so I can have this temporary nutrition option while they take care of this J tube.

My day started bright and early (5:00) with a blood draw and the nurse coming in to inform

My little {ahem, big}
bed hog :)

me that the doctor ordered a blood transfusion due to my hemoglobin being so low.

Then the PA that is with GI came a little later.  She is actually the same PA I saw when I was in the other hospital for my last admission.  She talked with me a little and said she was going to relay everything to the GI that is in the hospital this week.

I then saw the hospitalist.  He actually wants my feeding rate on 5ml.  He said any lower than that and I might as well not run it at all and he wants me to “challenge myself” with raising the rate...yeah, not too likely unless there is some change.  So, I’ve upped it to 5ml an hour and it seems to be ok so far.  He said that

Waiting to start my
blood transfusion.

they were repeating cultures and it will be at least three days before they put my hickman back but the infectious disease doctors may wait longer to make sure everything is cleared up.  So I’m not looking to get my new hickman until at least Thursday or Friday.

The transfusion began at 9:00am.  And once it finally finished around

Gettin’ blood.

1:30, they came in to do blood cultures and repeat my hemoglobin to see if it had come up any.  It came up from 6 to 7.5 and I plan to ask the hospitalist in the morning about maybe going ahead and doing another while I’m here so I can get it up a little more.

I lost my IV that my Benadryl had been going through, so IV team had to come start another one.  My veins are getting very tired of all the pokes so they are having a harder time finding good sites.  This new one is in a tiny vein so it probably won’t last too long, but at least it’s access!

The GI doctor came and asked a lot of questions and discussed in length my J tube issues.  He has been working with the radiologist and going back through all the CTs, radiology records, past scans to compare to recent ones, etc. to see if he can get to the bottom of this.  He even mentioned (without me saying anything) the fact of trying to figure out why I keep getting the infections and if the J tube could be involved!  I’m SOOOO happy that someone is finally really digging and working hard at finding out why all of this is happening!

Infectious disease came and someone is finally thinking and listening to me!!!!  They are seriously considering the possibility that these infections could be stemming from my J tube because the hickman was replaced and I got this infection while it was still super new.  She said when this kind of thing happens where infections are back to back, they question the source because it shouldn’t do that if the source was the line whereas the J tube wasn’t removed so it wouldn’t have been “resolved”.  She was also VERY interested in how messing with the J tube and fevers have been tied.  She said I went home on one antibiotics that covers for the one bacteria I had which would eliminate/suppress that bacteria, allowing the other type of bacteria to run wild.  So, even though these are two different bacterias, they could both come from the J tube.

All in all, today has been going rather well!  Still no

Ezra crashed out on the couch.
I think the nurses wore him out! :)

more fevers, it’s been fairly quiet, and I tolerated the blood transfusion very well!

Thank you for your prayers and encouragement!

Allison

Progress & Plans (Hospital Day #2)

 Hi Friends!

       Yesterday (Saturday) was a little rough throughout the day.  Felt rather crummy and had some lowish fevers that just aren't any fun.  I feel feverish by the time my temp hits 99 so when it reaches 100.6, I'm fairly miserable.  It was pretty amazing to see, though, how my fever slowly dropped as I received more and more of the IV antibiotic.  It literally dropped a

Yesterday...still feeling
yucky with fevers.

couple points every few hours until it broke.  Last night, my J tube pain got to the point I couldn't sleep, but I was SO thankful they allowed me to have IV Tylenol to ease it instead of those nasty narcotics!!  After getting that, I slept VERY good and actually slept later this morning than I normally do while in the hospital!

A few decisions were made after I posted yesterday... They ordered an echocardiogram, Hickman removal, dropped 2 of the 3 IV antibiotics, and put in for IV nutrition.  The echo is to check for infection in the heart.  When there is infection in the bloodstream, it can make its way into the heart so they just want to make sure mine didn't do that.  They hesitated to do the Hickman removal because I just got it placed only 11 days ago, but with the strain of bacteria I have this time they felt it really needed removed.  They dropped 2 of the 3 antibiotics because the last blood infection appears to have resolved, so the 2 that were for that bacteria weren't needed anymore.  So I'm now only on 1 strong IV antibiotic!  The IV nutrition was not an easy decision, but when you haven't had hardly any nutrition in over a month, you don't have a reasonable avenue for receiving nutrition, and you're fighting a serious infection, you have to do something.

Today (Sunday) started off with an echocardiogram.  It was the first time I have ever had one done in my hospital room (will probably receive the results sometime tomorrow)!  In the past, I've always been

This morning...feeling a
bit better with no fever!

transported somewhere else in the hospital to get it done.  I actually saw the infectious disease doctor while having the echo done.  He just went over the plan they had about removing my line, repeating blood cultures 48 hours from when my last cultures were drawn, and then replacing the line 72 hours after those cultures are draw as long as they remain negative.  Not long after he left, the hospitalist came in and discussed what we might possibly do about getting something done about this J tube.  He is going to talk with GI about possibly doing a test where I could put a capsule that contains a little camera down my tube (usually people swallow it) so they can see the part of intestine where my J tube is to see if they can find a reason for all this pain and difficulty feeding.  He also asked if I would be willing to try to run formula at a super slow drip because he doesn't want my intestines to sit without anything because they will slow or stop.  I agreed and started running formula at 1ml an hour.  He said he wasn't aiming for nutrition through the J tube right now, just an effort to keep my intestines moving.  I then had a consult with the IV nutritionist.  She came to get all the specifics on what I could and couldn't have so they could mix something for me.  It will mainly contain electrolytes, so it won't give me everything I need for good nutrition, but they just want to get in whatever they can to help in that department.  I'm unsure if the formulation will change once I get the new Hickman placed.  Currently it is going to be PPN (peripheral parenteral nutrition) because TPN (total parenteral nutrition) can't be put through an IV because it is too thick and ends up clogging it.  They will be making it here so they can add or take away whatever is needed to fit my allergies and situation.  I do want to add that this is a very temporary "fix" for nutrition to buy us a little time to get this J tube situation worked out.  My liver is not strong enough to handle long term and TPN is not an ideal solution anyway.  I didn't want it to come to this, but my body is in dire need of nutrition.  I'm beginning to lose weight, my iron deficient anemia is worsening, and my body is very weak in the midst of a tough battle with infection.  My hemoglobin had been hanging around 7.5 (which is very low), but has dropped to 6 within the last few days.  A lot of my other blood counts are low as well.  My body has just been through it lately.  I've never had serious blood infections back to back and I can't help but wonder if the state of my nutrition has some to do with my body's ability to fight.  And this infection went bad VERY quickly.  If I wasn't in septic shock this time, I sure was dangerously close!  I'm unsure if the PPN will be started tonight or tomorrow morning, but it should be one of those two.  Anyways, after seeing the nutritionist, I was taken down to radiology to get the hickman removed.  THANKFULLY, with it being so new, I was able to go drug free and it came right out with only a little tug instead of them having to literally tease tissue off of the cuff inside!  They cut the end of the line off to have it cultured.  When she took the dressing off, it looked a little irritated at the line and when she pulled the line out, there was puss coming out of the site.  SO, that pretty much confirmed that the source of this infection was my brand spankin' new hickman.  After the hickman was removed and I was returned to my room, the IV team came to start another IV so I would have a line for the PPN to run through because I have an IV for my continuous benadryl pump and an IV for my fluids and antibiotics, but there was nowhere for the IV nutrition to go.  I definitely feel like a pin cushion at the moment! ;)  But a very happy thing is that I haven't had a fever since last night!

I will leave you with a story of a moment that gave me a really good laugh today...  Let me start off by saying I always put Ezra's working vest on him any time we leave my hospital room to be transported somewhere for a test/procedure.  Now, on with the story...  The guy with transport who took me back up to my room after the hickman removal was really interested in Ezra.  Once we arrive in my room, I always remove Ezra's working vest and replace it with his regular harness so he can relax and be social with whomever may desire.  Well, the transport guy was talking to him and telling him to "shake".  Ezra's handshake command is actually "howdy" and "shake" is his command to shake water off of himself after a bath.  Ezra looked at him very confused, stood up, and shook his whole body.  The guy then told him to sit and Ezra sat.  The guy then asked him again to shake.  Ezra looked at him like "are you serious?!" so I chimed in and said "howdy Ezra, howdy" and it was like a lightbulb went off in Ezra's mind and he finally shook hands with the guy. :)  It was all I could do not to laugh out loud when Ezra stood up and did "shake" as he has been taught to translate it!

I have a direct view of
the helicopter pad from
my window.  I get to watch
the helicopters come and go!

It will probably be Wednesday at the earliest before I'll get to even think about getting out of here, but it could very well be longer.

Taking Life One Hospital Day at a Time...

Allison

“Altered Mental Status” & Positive Blood Cultures (Hospital Day #1)

 Hello There!

     Yesterday, something happened to me that has never happened before....

So, I was trying to wait it out to see if there would be a way to get treated without going to the hospital through my infectious disease doctor.  When trying to get dressed, I barely got my clothes on before crashing on a toddler cot right outside the bathroom.  I was uncontrollably shivering as my temp began to climb.  I got so horribly weak that I even asked my family if they would be ready if we had to call 911.  The infectious disease office got back with us and said the doctor wanted me at my usual hospital ASAP especially since I was still on the strong

The look of a girl with a fever in a
bright ER room (gotta love the
light sensitive eyes!)

IV antibiotic.  When we were getting ready to leave the house, my temp had reached 104.2.  I recall some of getting in the van and being laid down but then things are spotty from there.  By the time I got to the hospital, I apparently couldn’t get out of the van and had to be hoisted out by a few hospital staff.  I remember a tiny bit about being in a triage bay and hearing “burning up” (fever?) and “140” (heart rate?) before going out again.  Next thing I know, I’m waking up on a hospital gurney, very confused with “strange” men (nurses and doctors I assume) by my sides, an IV in my arm, and then I noticed the one face I recognized - my Momma who was at my feet.  Everyone was asking weird questions (which I’m guessing weren’t all that “weird” after all).  I remember saying “Momma” and starting to cry because I was scared and confused, but then I went out again.  I remember little bits before I came to and stayed that way however long later.  Any time I was somewhat conscious, I could say a word here and there but it was like my mind couldn’t form sentences which is really scary and makes you feel trapped because you can’t communicate.  Once I started to improve a little, I kept telling Momma that Donald Duck had been in my room - I heard him!  She kept telling me that there was no Donald Duck that had been in my room.  We later found out what I was hearing was one of the doctors that had come in wearing a big, full face respirator mask....it made him sound like Donald Duck! 😂  I just KNEW I had actually heard him and wasn’t just hearing things! LOL  While I was down in the ER, they added on another antibiotic to help fight the bacteria I had been dealing with.  They did a chest X-ray, head CT, abdominal and pelvic CT, and blood cultures.  They got my IV tylenol approved for the fever and did a dose fairly soon before I went up to my room.  By the time I got to the room, my temp had broken and was 98.8 and I felt quite a bit better!

I got into a regular room around 1:00am, got settled, finished all the fun admitting procedure, got swabbed for covid yet again, and then got a few hours sleep before my nurse comes in my room with yet another antibiotic because one of my blood cultures had already come back positive only a little over 12 hours after they were drawn! 😳  My last cultures took 30 hours to come back positive and usually it takes a little longer all the times I’ve had blood infections.  But, then again, I had never been in that bad of a state before where they actually put “altered mental status” on my notes.  Oh, and to add pizazz to life, so far the bacteria that came back this time is different than the one I’ve been fighting. 🙄  I’m currently awaiting another dose of IV tylenol for this fever that has returned (although not as bad, thankfully!)

I’m supposed to have multiple consults...GI, infectious disease, and nutritionist, but I don’t know when those will happen, given the fact that it’s the weekend.  I had a respiratory consult last night and was cleared on that!

Just a little note...would you pray for my sweet Ezra?  He’s really struggling with all this covid stuff.  I have seen more of the big time full face respirator masks in this hospital than I’ve seen in my lifetime and those masks alter their voice and make them look like a monster to Ezra.  He really has a hard time because they scare him AND, to beat all, they’re coming towards me!  So I’d really appreciate your prayers for him.  Jesus cares for the tiniest of sparrows and I know He cares about my little man, too!

Well, that’s all I have for you for the time being!  Thank you for your continued prayers!

Allison

Unexpected Turn Of Events

 Hi friends!

    I’m so sorry for not updating sooner.  A LOT has gone on just in the last 24hrs that somewhat hit me out of the blue.

I’ll start with my GIs response to my message.  He does not want to give me an NJ because he feels like if we pull the J tube and place an NJ that we would be going backwards in my care versus actually doing something worth while.  He suggested a pain management specialist to control pain so I could get some formula in me since it causes a lot more pain to feed.  I react to all local anesthetics that would be used in a nerve block and pills so probably the only thing they really would be able to offer is IV narcotics (however, they don’t offer those at home) and let’s just say, I do NOT want to go there!  I hate narcotics and everything that comes with them!  And the other suggestion was a second surgical opinion at either Duke or Chapel Hill because he thinks I’ve run out of surgical opinions in the Charlotte area.  Yeah, not thrilled about that option either!

So, I went to my GIs PA on Wednesday.  She had one more option/hope for me to try and that is a medicine that I would put through my tubes that coats the lining of the GI tract and encases ulcers.  If it’s ulcers in my intestines that is causing the pain, the medicine would hopefully reduce/relieve the pain for a few hours to get some formula in me during that time.  She squished around at my J tube along with wiggling it like nearly EVERY doctor thinks they have to do which caused extensive worsening of the pain plus made me not feel so great that evening.  And wait til you hear what happened yesterday...

Yesterday (Thursday) morning I was having some pain and slight swelling in my neck, above my hickman line, so my doctor ordered an ultrasound to make sure I didn’t have a blood clot.  Turns out the scan was clear and that pain is majorly decreased this morning so it was probably an irritated muscle.  It never hurts to be safe and check things out especially when there is a central line involved!

Here comes the interesting and unexpected part of this post...

Yesterday afternoon, I began really feeling bad and feverish.  This is all despite the fact that I’m still on strong IV antibiotics.  My temperature began to rise and I felt really crummy.  I decided to do my fluids and meds and wait out the night to contact the infectious disease office this morning.  Well, throughout the night, it reached 103.1 and I was given IV tylenol around the clock.  My heart rate stayed in the 120s and 130s even while sleeping and this morning my blood pressure was 91/49, but my temperature came down to 100.7 (with IV tylenol, of course).  I don’t think it’s an overstatement to say I’m quite sick right now.  The infectious disease doctor’s nurse has been notified and we are waiting on their response.  I wouldn’t be shocked if we end up in the hospital again. :(  I’m hoping they will at least repeat blood cultures and wait for the results before making me go in, but it’s highly possible they’ll send me straight to the ER.  The bacteria causing the infection was/is notorious for becoming resistant to antibiotics and hiding itself.  I can’t help but think, is this HORRID pain I’m having at the J tube due to the bacteria hiding itself on that tube/at that site and any time they mess with that tube the bacteria is introduced back into the bloodstream?  Even when I was in the hospital this last time and they checked my tube again...I didn’t get a fever but I sure felt like I was by that evening!    I hope they’ll rethink their plan and at least seriously consider removing this J tube if my blood cultures come back positive for bloodstream infection again!  I’m sorry, but this is the very definition of insanity...ya know, doing the same thing over and over only expecting different results.  It’s quite scary, to be honest.  The question is, did leaving that tube in cause this bacteria to eventually start resisting the strong IV antibiotic that I’m on?  Could this have been prevented if someone would’ve just listened to me?  I know, looking back into the past and wishing things were different is not going to help the present any, but I sure hope a glimpse into the past will help doctors start listening to me and we can safely move on from here.

I’m just SO over all of this!  Like I told my sister last night, I just need to find the “uncle” button on life (or “mercy” for y’all old timers ;))!

Thank you for continuing to pray, keep up with my updates, and give encouragement!  It doesn’t go unnoticed!

Allison

Home + Prayer Request

 Hello There!

     Not much to update on.  Got home yesterday afternoon.  Still in horrendous (and at times, excruciating) pain.  Have a message sent in to my GI pleading for removal of the J tube and placement of an NJ tube.  PLEASE pray that he will accept this as an option and agree!  I’m in agony and I just can’t live like this.....to put it in perspective — I would go a year with an NJ tube over just one day with this J tube.  I just desperately need help right now.

Thank you for your continued prayers!

Allison

Hospital Day #10

Hi There!

      So, no NJ tube.  They can’t place an NJ without removing my J tube because with all the tubes, they’re concerned there won’t be enough room in my intestine.  But without a Surgeon’s consent, she won’t authorize the J tube removal and the surgeons aren’t at this hospital and they can’t come see me so it’s just a mess.  However, the doctor is willing to let me go home with what little formula I’m able to get since I have pain medicine (IV acetaminophen) and IV fluids at home.  I have to stay for my 10:00pm and 6:00am doses of the IV antibiotics because I have to have my home health nurse present at my house for the first home dose.  Hopefully I’ll be out of here sometime fairly early tomorrow morning!  I’m supposed to quickly follow up with GI and the surgeons to try to work out a plan and get this taken care of since I’ve really hit a brick wall with care here since 99% of my doctors are affiliated with a different location.  If I get too malnourished or dehydrated before something gets done outpatient then I’m to go back to my normal hospital to get help.

I’m really hopeful that someone will move quickly once I’m outpatient to do something about this constant pain I’m in.  The longer this goes on, the more weary I become and the more weary I am, the harder it is to pull through each day.  Let’s just say the endurance bank has filed for bankruptcy.  If not for God’s strength and grace, I would have nothing left.

I really appreciate your prayers that the outpatient crew can do SOMETHING for me!

One More Day in the Hospital....

Allison