A Land Of Pure Imagination...

 Hello Friends!

     I made the mistake of reading my hospital records the other night and might I say they are rather infuriating!  I was suspected to have a stress-induced bacterial infection and my pain is psychosomatic, but psychiatry had nothing to offer.  (The psychiatrist told me she cleared me with no signs of stress or depression) My record literally says that!  Makes perfect sense, right?!  This doctor was horrible and trust me, we’re not ignoring it this time!  Oh, and she never did prescribe the nerve medicine like she said she would.  Plus, I sat in there for FOUR weeks and they did nothing other than treat my sepsis and place an NJ.  I’m still in horrible pain, only “tolerating” 11 ml of formula an hour for 6 hours a day, losing weight, starting to feel dehydrated, etc.  They actually sent me home with the starts of a G tube infection (redness with puss draining from the site) with no treatment, telling me just to keep an eye on it and keep it dry.  The said infection has now festered and could possibly have an abscess.  My infectious disease doctor saw me yesterday and got me on another round of IV antibiotics ASAP to hopefully avoid another bloodstream infection and hospitalization.  It’s just a big mess.  Please pray this hospitalist will learn and won’t get away with this without at least some kind of reprimand.  It’s so unfair to the patients in dire situations such as mine.  If I didn’t have good, reliable doctors that know me and my circumstances, it could really potentially severely mess up my care!  I’m trying my hardest to be Christ-like towards this, but my flesh REALLY wants to pray she lives in my agony for a few days while someone treats her the same way.  But I’m resisting that temptation! ;)

When I saw infectious disease yesterday, she went ahead and did blood work including blood cultures just to make certain the G tube infection hasn’t made it into the bloodstream at all.  Hopefully all is clear with that and the IV antibiotics kill this infection off!  She said that sometimes just the inflammation from the infection can make it feel hard, but should be softening up after 2-3 days of the antibiotic and if it hasn’t, she is going to look into doing a CT (to check for an abscess).

Amongst all this chaos I have greatly enjoyed my two little nieces who are currently staying at our house with their mommy!  I love them so much and they grow so fast!  I hadn’t gotten to see them in quite a while because every time they came down it was because I was in the hospital and my SIL was helping with the driving to and from the hospital.  This time I finally got to come home and spend some extra time with them before they head back home!  I loved it when Vivian (3 1/2yr) got SOOOOO excited when she first saw me and Ezra when I came out of the hospital....she was ecstatic!  And then, on the way home, she reaches her little hand over to me and says “hold my hand”.  Talk about melting an auntie’s heart!  She has such a precious, caring big heart!

Ezra FINALLY got his haircut on Sunday evening!!!  Poor baby had a fro and a half because of hospitalizations forcing me to postpone his grooming!  He obviously feels much better now that he can see and isn’t roasting underneath that thick, woolly coat of his!

We took the two little ones to a local park today which

Sitting on the swing
while watching my
nieces play at the park

was a lot of fun!  I made it to the swing and watched them enjoy themselves.  It was absolutely exhausting because of my malnutrition at the moment, but well worth it to get out and about!

I hope you and your family are well!

Taking Life One Special Moment at a Time...

Allison

HOME!!! (Hospital Day #29)

 Hi There!

   Well, after 4 weeks and 1 day I am HOME!!!!!!

Got to wear my new shirt (that my family gave me) home today!

  Still hurting, can’t get my feeding up past 11ml an hour through my NJ, but I am home and very happy about it!  Now to start the quest early Monday morning getting in touch with all my doctors to get this all sorted out!

They wanted to remove my NJ before discharge, but thankfully the weekend hospitalist got ahold of the regular hospitalist and got it approved to leave it in.  I wasn’t about to let that happen!!!  We worked way too hard to get it in to yank it out now!

I think it is safe to say Ezra
is very happy to be home!
What a mess! LOL

We stopped at the pet store on the way home and let Ezra go shopping.  He is VERY happy to be home - he can’t contain himself!

I’m thoroughly enjoying my two youngest nieces who are currently staying at our house!  They grow so fast!  Vivian and I had fun with a sticker book after supper!

I’m heading to bed so that’s all for today!  And I think I have officially decided on the most popular name suggestion for my zebra....Zeke ;)

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

Allison

A Nightmare Of A Day (Hospital Day #28)

 Hello There!

      Last night and earlier today were a nightmare.  I was awake at 3:15am in pain and didn’t get back to sleep until after 6:00.  Then woke up around 7:00 and finally got pain meds again at 8.  My pain is overpowering my pain meds only my hospitalist is still unwilling to do anything about the tube because “there’s nothing physically wrong with it”.  I nearly begged for an extra dose of pain meds to help with the nearly unbearable pain I was in at that point.  She denied the extra meds saying about all the side affects and making the Gastroparesis worse and asked me if the psychiatrist had some idea to help me sleep.  I told her I didn’t want to be on the pain meds - I just wanted the pain fixed!  I also informed her I was cleared of any psychiatric issues and the only thing keeping me from sleeping was the pain.  I then asked her if nothing else could it be nerve pain.....she was kinda backed into a corner with that question.  She decided to order a nerve medicine for me to start to see if it’ll help.   Let’s just say, by the time her visit was over, I was uncontrollably whaling and sobbing.  I was in an indescribable amount of pain on top of being extremely frustrated.  The poor nurse was waiting on the IV tylenol to get up on the floor from pharmacy and was repeatedly apologizing because there was nothing more she could do.  I think it’s unfair to the nurses when the doctors do things like this because they’re caught in the aftermath with their hands tied but the doctors don’t have to face that!  Anyways, my NJ tube had advanced on its own into the beginning of my intestines so the nurse just pushed it in about an inch and we have started feeding.  It’s only running at 5ml which was the rate that didn’t worsen my J tube pain.  The plan is for me to bump it up slowly every 2 hours.  If I can tolerate it then I can go home sometime this weekend.  I’m very, very anxious to get out of here and home not just because I want to go home but because we can make more progress outpatient with my doctors who understand the situation and my disease.  I haven’t tried the new medicine yet but when I do, she said that it can take a while for it to make a difference with the pain.

I’m now just chilling and watching Road To Avonlea - enjoying the relief I have from the pretreat they gave me prior to moving my NJ tube.

I haven’t had a chance to decide on my zebras name yet so stay tuned and next time I post I promise I’ll have picked one! ;)

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

Allison

Oh, Happy Day...Kinda (Hospital Day #27)

 Hello There!

    So, this morning I spontaneously decided to take a shower... always does good for the body and soul!  Then when my mom and sister switched out, Mom

My redecorated shelves 

brought several sweet gifts from multiple special people in my life.  My church sent a sweet card and an adorable plush zebra with bandaids all over it, Sara and Christina (sisters) sent beautiful potted roses, Valerie (sis) sent some more charms for my NJ tube, and Keisha (sis) sent a whole box of mini decorative lights!  Everyone definitely brightened my day!  I really enjoyed decorating a little more, adding the gifts to my shelves (and IV pole).

Then my hospitalist came in and put a damper on the mood.  She said GI doesn’t want to advance my tube endoscopically because there’s a risk they might not be able to keep it in the intestine while they pull the scope part back out.  Radiology says they don’t want to do it because they can’t use contrast to be able to see things better or lidocaine to help with the pain and it wasn’t cooperating for them.  Plus it was hurting so horrendously they didn’t want to torture me any longer.  So she was asking about TPN again which will not work long term because they can’t include everything I need due to allergies.  So, we went over that again and she said she was going to reach back out to both GI and radiology to see if someone would be willing to attempt getting it in place again.  I was hoping something would be done today, but all that happened was the hospitalist coming and then they came in to take another X-ray, I’m guessing to see where the tube is sitting now.  But no word on what they plan or if they even have a plan as of yet.  And to top it off, I’m afraid I might’ve officially hit the downward spiral with my weight...I’ve lost a total of 7lbs in the last 3 days.  That’s usually how it works - I can go quite a while malnourished, just loosing little bits here and there and then I suddenly hit a point where it starts and is really hard to get back under control.

Tomorrow marks 4 weeks of hospitalization.  I’m so ready to be home already! :(

Sooooo, my adorable zebra still remains

My (unnamed) adorable zebra :)

unnamed...take a peek at him in the picture and comment what you suggest for its name and I might just choose yours! ;)

Living Yet Another Day in the Hospital...

Allison

Failure (Hospital Day #26)

 Hi There!

     So, as you can tell from the title, the tube advancement was a failure. :(  They tried and tried but it kept coiling and wouldn’t turn the right direction.  I was in absolute agony because the back of my throat and adenoids are still really inflamed.  They finally gave up and said that either they’ll have to wait a few days to let things calm down where they had to force the tube in or else they’ll have to put me under again to finish it.  The PAs in radiology were quite upset that they didn’t finish the placement while I was under to get the initial part done!  So, the nurse was going to notify my doctor so she can start putting a plan together.

My heart leads keep getting super itchy after a couple days and when I take them off there are little itchy water blisters underneath.  The nurse went in search of their sensitive skin leads and hopefully those work better!

That’s about all for today!  Thank you for your continued prayers!

Taking Life One Failure at a Time...

Allison

NJ Tube Advancement

 Just a quick note to let you know that they plan to take me to radiology at 1:30 to get my NJ tube advanced into my jejunum.  Thankfully, the pretreat is all planned out and everything should be ready to get this thing done!

Please pray that the procedure is successful, safe, quick, and as comfortable as possible!

I soooo don’t wanna do this! 😫

Taking Life One Moment in the Torture Chamber at a Time...

Allison

Not My Day... (Hospital Day #25)

 Hello Friends!

     Today was NOT my day....and that is an understatement... take my word for it! :(

I had a really rough night with pain.  I FINALLY got good and asleep around 7am and at 10 I’m woke up by the hospitalist that I still can’t stand.  And yes, she is going on her FOURTH week in a row!  Hospitalists ALWAYS switch on Tuesdays every week (normally) but it’s like a curse - each Tuesday I expect to finally have a different doctor but no, it’s her again.  Anyhow, so that didn’t thrill me.  She is talking like they’re still going to leave this J tube in even though it has sat dormant for at least a week and still hurts horribly.  

Ezra snuggling with me in radiology

Then, I’m taken down to regular radiology only to realize the doctor gave them NO heads up that I needed pretreated.  She assured me they would do the pretreat down in IR (interventional radiology) and then sends me to a totally different department that doesn’t do meds... go figure!  So I’m sitting all by myself in the radiology room, insisting that they pretreat me.  Finally they decide to contact my doctor to get the pretreat and by that time I was sobbing.  I hurt, I just wanna go home, I feel super crummy, and I don’t want to do the stupid thing in the first place but then I was so frustrated with the whole situation...I was just a mess.  So after about an hour and a half they let Mom and Ezra into the procedure room to be with me while they continued trying to get things situated.  I spent a total of 3 hours sitting there before being sent back to my room for them to do it tomorrow.  But back up a little.....while sitting in the radiology room I suddenly began burning and itching and, when investigating further, I discovered I was absolutely soaked through with stomach acid.  That little terror of a port on my G tube had popped open, pouring stomach acid all over me and my bedding.  Got that cleaned up finally.  Then the last icky thing (so far) is that I went to get my chocolate since I’m finally not NPO anymore (til midnight anyways) and discovered my sis accidentally took my chocolate home with her in her cooler this morning.  Yeah....not having such a good day over here.

The one bright spot was getting a little NJ tube charm that my sister made me...adds a little happy to a very not so happy situation.

Here’s to hoping tomorrow is better....well, it would be even better if Jesus came and tomorrow didn’t happen.... just sayin’!  I’m nearly to a point of just saying phooey on everything.  I don’t care if I have nutrition or what little pain control I have right now - just send me home!  I’m done with this whole mess!

In Hopes For a Better Tomorrow...

Allison

Success?? (Hospital Day #24)

 Hi Friends!

     Well, it was a......SUCCESS!!!!!!!!

Before and after the NJ tube placement

I got awakened by the nurse at 1:30am because no one had done a covid swab on me yet and I needed one before going into the OR.  So that was lovely! LOL  I must say, covid swabs are NOTHING compared to an NJ so I didn’t mind.  That makes at least 5 times (if not 6) that I’ve been covid swabbed for procedures.

I woke up on my own rather early this morning to get fully prepared for my procedure and get Ezra fed and ready.  I was told my procedure was scheduled for 11:00 and they could come get me as early as 9:00.  So I was all ready to go by 10 minutes after and I waited and I waited and I waited and I waited some more but no one came.  It had reached 10:15 when I called my nurse to ask about maybe calling down to the surgery department to see what on earth was going on because they usually take you down way early to get everything situated!  Turns out apparently they had some emergencies come up so I was bumped to the waiting list.  So we sat and waited hours upon hours with no info.  I watched some videos and then did some coloring and then sat and waited some more.  It reached 2:30 and the nurse came in to inform us she had called down to OR again.  They said the doctor wouldn’t be available until 5:00 but that was all.  So we waited even longer.  Getting to my whits end, I called my nurse at 4:30 to see if she had heard anything but she hadn’t.  She told me she was going to call down at 5:00 since that is when they said the doctor would be available.  By that point I had nearly lost all hope and just expected it to be tomorrow.  The nurse came in at 5:30 and praise God it was still a go!  I ended up not going down to the OR until 6:55pm - a far cry from going down at 9 for an 11am appointment, but I was SO grateful it was actually going to happen!  I had an amazing anesthesia team and wow, God threw in a really special blessing...my procedure nurse actually has multiple friends with mast cell disease and she knew what it can do!  Such a comfort!

I woke up with a tube in my nose and a headache the size of Texas and California combined, but post op gave me a fairly high dose of painkiller to ease it!  Oh, and the mystery has been solved - the reason they kept failing is because I have large adenoids and that is what the tube kept getting caught on.

I got an X-ray once I got back to my room just to confirm that the tube is down the right part of the throat/esophagus and not in the airway (which I highly doubt seeing as how I’m breathing fine) and the next step is getting to radiology (hopefully sometime tomorrow) to get it into the jejunum.

Well, I am dozing off every two words because I’m super groggy from meds plus in a bit of pain, so I must go now.

Thank you so much to those who prayed!

Allison

NJ Delay...

 Hey!

     Just letting you know due to multiple delays I just heard that I’ll be going down for the NJ attempt in the OR pretty soon.  Please continue to pray!!

Allison

NJ Placement Scheduled!

 Prayer Warriors....

My NJ tube placement under general anesthesia is scheduled for 11:00am.  They could come and get me from my room as early as 9:00am.  Please plead to the Lord on my behalf that this attempt will be successful!

*Expect the worst•Hope for the best*...trying to head into this with my motto on the brain, but it’s so hard not to get my hopes up!

Taking Life With One More Chance...

Allison

Keeping Busy & A Close Call (Hospital Day #23)

 

Hi Friends!

       So, today has been......a day?!  I don’t even know what word to use for it.  There’s been good and there’s been bad and there’s been lots of pain....

So, I woke up feeling very cluttered and closed in so I decided to rearrange, organize, and straighten up my room while getting my stuff ready for tomorrow.  It hurt like crazy, but was worth it to have my room feeling a bit better!

Thankfully, when the hospitalist came she told the nurse to give my pain med a little early and then I got a nap.  When I woke up, my sis and I decided to watch a movie.  We got in the middle of the movie and I get halfway through a bottle of milk and a chocolate bar and the nurse comes in and tells me it’s possible I’ll be going for my NJ placement under general anesthesia sometime today!  I’m like “uhhhhhh, is it ok that I’ve had stuff by mouth?” because any anesthesia team that I’ve known doesn’t care that it drains out of my stomach drain tube- they still don’t want me having ANYTHING by mouth!  The nurse told me to stop and she would let them know and see what  they said.  Sooooo, we waited and waited and waited some more for the nurse to come back in to let us know.  She came back in after a while and told us the doctor said it probably would affect things and he’d check but he hadn’t gotten back with her.  So I decided to go ahead with taking a shower to prepare for most likely tomorrow’s procedure.  Turns out it is now scheduled tomorrow because they want me NPO from midnight.  We won’t know the actual time until 2am...that’s when they get their patients schedule.  Anyhow, feels good to be clean and have a fresh dressing on my hickman!  Plus I actually got to blow dry my hair with my mom’s travel hair dryer!  That might sound trivial but y’all girls out there that regularly use a hair dryer and flattening iron should know how not so fun it can be going 3 weeks without!  I still miss straightening my hair, but ever so happy to at least get it blow dried! :)

I’m currently watching a movie with my sis and then it’ll be time to go to sleep soon!  Hope everyone has a great night!

Taking Life One Hospital Day at a Time...

Allison

Hospital Boredom (Hospital Day #22)

 

Hi There!

     Today has been quiet but rather painful.  Pain woke me up multiple times last night.  I finally ended up staying up at 4:30am because of the pain.  It’s tough because the pain meds help, it’s just they wear off about an hour and a half to two hours before I can have them again.  Anyhow, I crocheted a few keychains today and then watched some movies.  Trying to keep myself busy....let’s just say boredom and pain do not mix well, unfortunately! :/

I only saw the weekend hospitalist today.  She said I should have a calm weekend without anyone trying to shove something up my nose! ;)  She confirmed that they were going to attempt the NJ under complete anesthesia on Monday and their goal is to get it through the nose and down almost to the stomach, get an X-ray to make sure that it’s in the right way (not in the lungs), and then I’ll go to radiology and have them get it the rest of the way down.  The radiology part will most likely be while I’m awake but at least the really super bad part will already be done and they’ll give me meds to help with the pain, anxiety, and torture of it all.  And then I’ll be able to start trying to do feedings....and THEN (if the feeding works) I get to go home!!!  I’m trying really super hard not to get my hopes and expectations up.  I keep reminding myself of how many times it has failed because there’s a chance it’ll fail again.  Hoping the anesthesia meds and special tools they can use will make it a success!

Hope y’all are having a good day this dreary, rainy day!

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

Allison

Another Attempt + New Plans (Hospital Day #21)

 Hi Friends!

       Today was long and pretty rough.

I saw GI first.  They just kinda touched base and asked what the ENT said.  When I told them about him saying about general anesthesia being his last resort, she said “when I hear someone say last resort....Um, we’re there!”  So she said they were going to put some notes in and let ENT know that I can safely go under anesthesia and was fine with it.

I then saw the weekend/fill in hospitalist who got up to date on the latest with me and then informed me that GI wanted me to see psychiatry.  I asked her what that would help and she said it was because of all the pain without physical findings so they just wanted to make sure there wasn’t anything from that perspective.  So I agreed.  I figured we could get that out of the way and go ahead and get rid of that suspicion.

It wasn’t long before the psychiatrist came in for a visit, asked me tons of questions, and then cleared me.  So I shouldn’t have to deal with them anymore.

Then, later on in the afternoon, the ENT PA came by to scope my nose since the ENT didn’t do that yesterday.  When she scoped me she said it looked like the dobbhoff would go and she decided to try.  She tried and tried and tried and then she had the nurse try while she scoped to guide her and then she tried again....but all I ended up with was lots of pain and a bad nose bleed.  Soooo, it was declared a failure yet again.  The plans are now to go under complete general anesthesia on Monday to make a final attempt.  They did a facial CT scan this evening so they can see my anatomy and be prepared for Monday.  I don’t have a specific time or anything yet, but the plan is to do it Monday.  If ENT is successful they’ll get it down to my stomach and then I’ll be scheduled for GI to go in endoscopically and pull it down into the intestines.

The next couple days will pretty much be a waiting game while still receiving the IV nutrition and pain control.  Once we get the tube placed correctly (assuming we do) then I’ll have to try feeding.  If it’s still painful, they’ll take the J tube balloon down, and, if that doesn’t work, remove my J tube.

That’s all for today....

Taking Life One NJ Tube Attempt at a Time....

Allison

I Think I Can, I Think I Can, But I Can’t (Hospital Day #20)

 

Oh, the word I’ve heard way too many times recently....failure.  “We failed”, “it’s a failure”, “failure to place” (NJ tube), “we tried, but failed” etc.  I guess most of my medical life is a failure for the time being. :(  You’d think I’d be used to it by now, but it always disappoints me so much and usually ends in tears.  Maybe I should convert to being a total pessimist and then I can be happy if something actually works.  SO, anyways, things didn’t go well.  The ENT made 3 separate attempts to pass the NJ through my nose, but it kept getting snagged in the very last “section” in the nose before the back of the throat.  He said he wonders if I have a pocket of scar tissue from my previous NJs and that’s what it’s getting hung on.  Talk about pain!...it was horrible!  I was still in tears from absolutely unbearable, excruciating pain over an hour afterwards because not only did my head and nose hurt like crazy, but both of my tubes were hurting really bad also because of tensing so much.  THANKFULLY the kind on-call hospitalist gave me an extra dose of pain meds!  Before trying to place the tube, they pretreated me with Benadryl and Pepcid for the mast cell side of things (trauma causes reactions) and then did pain meds on top of that, but it still was awful, probably because of my nasal passageway having to be forced open farther.  That is something I would never ever wish on my worst enemy.....well, maybe the surgeons who are the reason I’m having to go through all of this again!  Sorry, but sometimes people have to actually feel/experience things in order to have a little compassion...just sayin’.  My poor sweet nurse about didn’t have hands left by the time the ENT gave up!  She said she was thankful every time I asked to take a break because she couldn’t feel her fingers! LOL  See, when someone is jabbing something up your nose and it hurts like that, your automatic instinct is the grab at the object/hands that are causing it....so in order to keep myself from grabbing the doctor’s hands, I squeezed the nurses hands.  Let me tell you right now - no amount of self control can keep your “survival” instincts from kicking in!  I just had to focus on squeezing the other set of hands and breathing.  I wouldn’t be shocked if my poor nurse has sore hands tonight though.  And then, after all that torture to have it yanked back out because it failed and be back to square one.  The ENT said there’s one last chance and that’s under general anesthesia.  I think if that fails that would be their last resort for the NJ tube.  If they go that route it’ll probably be after the weekend.  If they try and fail, I’m guessing the next option is going to be getting the surgeons to place another surgical J....if they will.

Tomorrow marks 3 weeks in the hospital.... and still no possible date to even look forward to in terms of getting home.  I’m just sick of the hospital.  It makes it harder because I can’t even get out of my room and off this floor due to covid restrictions.  Usually I would take Ezra for the occasional walk throughout the hospital or outside on the grounds, but when I asked the nurse the other day she told me that I wasn’t allowed because of the new policies in place.  There’s only so much a girl can do to a room to try to make it more cheery.  I had my heart so set on going home within the next couple days thinking surely the nose specialist would have success, but now we’re headed into another weekend without progress. :(  I could really use your prayers - this spirit of mine is really weary and disheartened right now.

Taking Life Yet Another Hospital Day at a Time...

Allison

ENT & NJ Tube Placement

 I’m just writing a quick note to let y’all know that the

All fresh & clean after my early
morning shower :)

hospitalist talked with the ENT doctor that just came on duty today and he is willing to come try to get the NJ through my nose and to my stomach.  So the plan would be for him to do that and then GI will go in endoscopically and take it the rest of the way down.  Please pray for me!  The catch is that he has to do it bedside instead of me being sedated and asleep.....I too vividly remember the torture with previous NJs and it isn’t pretty especially with the dobbhoff because it has a huge weight thing on the end that has to get through your nose and throat.  They plan to give me some meds which is better than nothing but much worse than being asleep and oblivious!  Don’t know when exactly that is supposed to happen, but sounded like it should be today.

Thanks in advance for your prayers!

Allison

Changed Plans...Again (Hospital Day #19)

 Hi Friends!

      So, plans have changed once again.  The GI doctors are foregoing the contrast study because they feel like the risk outweighs the benefit.

Snuggles with my big boy Ezra
while just chillin on my bed

 They’re scared because if it were to cause a reaction, they can’t get it back out and I have very few rescue med options.  Plus, there is not much that can be done if they did find a problem.  Which puts us right back with ENT and an NJ tube.  The tubes the rep brought aren’t any more promising than the regular dobbhoff so they’re back to trying to get ENT to scope and find out what the issue is and if they can maneuver around it.  If they can’t then there is the question of can someone fix my nose surgically to where they can.  That all depends on ENT if they ever come see me.  My hospitalist has repeatedly reached out to the ENTs so hopefully soon they’ll get tired of it and come see me! ;)

My darling nurse today got permission to remove the stitch in my neck from the hickman insertion!!!  It feels SO good to have that itchy thing outta there!

One major prayer request.... my dental situation is getting very dire.  I can’t get my teeth done or even scheduled to be done until I’m cleared for the OR which means getting nutrition and regaining some strength.  The teeth that the dentist built up are now starting to crumble again, leaving me in serious pain all day long today.  I can’t deal with any more pain right now and not much I do really helps.  Please pray that it’ll calm down and give me some relief!!

That’s really where we stand right now.  As requested, I got some pictures of my coloring decor.  Enjoy ;)



Taking Life One Long Toothache at a Time....

Allison

Technicalities & Consults (Hospital Day #18)

 Hey Y’all!

      I woke up early this morning in pain and couldn’t get back to sleep so I decided to make good use of the time and straighten up/organize my room. :)  I got it looking and feeling a lot nicer before the pain reached the nearly paralyzing point.  I not only had the J tube pain, but my G tube was rapidly reaching excruciating and felt like the balloon might be in the stoma.  I was so tempted to just fix it myself like I would normally which is deflating the balloon, maneuvering the tube back where it’s supposed to be, and then inflating the balloon, but I know better than to do anything of that magnitude without permission when in the hospital.  So I hung on until the hospitalist came and I asked her if I could please fix it.  Thankfully she was good with me doing that so I didn’t have to wait until someone could get it fixed by the correct “department” here!  It is slowly improving so hopefully it’s going to straighten up.

Today was a lot of technicalities and doctor consults.  After the hospitalist came, two GI PAs came in to talk to me about their plans.  They got my immunologist’s information so they can contact her to ask her about the safety of doing contrast and which contrast would be the safest to do.  They would like to do that to see if they can find anything that would be causing this and then, if they don’t, try to get an NJ of some kind.  ENT is supposed to be coming by to look and see if there is a way they can guide a regular dobbhoff through my nose.  If they can do that then the GIs can take over from there and take it down endoscopically to where it’s supposed to be.  But, I have yet to see ENT.  No one knows what’s up with that...they’ve been requested multiple times since Thursday and apparently they’ve agreed to do so - they just haven’t gotten here yet.

I did some more coloring throughout the day and played with Ezra a little bit.  Today I laughed the hardest I have laughed in quite a while!  My mom discovered Animoji ... no further explanation required! LOL  So, Animoji was our afternoon entertainment along with random funny videos on YouTube.  

My blanket with the roasted
chicken-turkey on it :)

One of my sisters at home sent a gift up here with Mom this morning.....she wanted to complete my fall/thanksgiving decor with a blanket that has a giant roasted turkey on it......however, I personally think it’s a chicken! ;)

This hospital stay is now officially the longest stay I’ve had in my lifetime....18 days and counting and no end in sight so far.  Never thought I’d be saying this girl is homesick, but it’s true!

Well, I’m off to feed Ezra and watch an evening movie with Momma before bed!  I hope everyone’s day has been great!!

Taking Life One Big Waiting Game at a Time....

Allison

A Long Day... (Hospital Day #17)

 Howdy!

     Last night was slightly rough with pain, but thankfully after pain meds I was able to get some good sleep.  While I was awake, they had a code blue just right down the hall in 19 (I’m in 13).  Took forever to get him back and was just a heartbreaking wait to see if they were successful.  It was a sigh of relief when suddenly the hallway exploded into cheers because they had succeeded.

I got up this morning and did my Bible time, enjoying the sunshine peeking in the window and then did a little coloring while waiting for doctors to come in.

I saw the GIs PA first.  She just mainly wanted to know the whole story to get up to date on everything with my tube issues.  Of course she had to examine my tubes so yeah, thank God it was 10 minutes from time for pain meds!  I told my sister I need a shirt that says “squish me, I scream!”  They’re still trying to get ENT in here to see me.  We’re waiting with bated breath on the official look at the new tubes the rep is supposed to bring tomorrow to see if they’ll be worth a try.  Hoping it’ll be a good fit for me!!

Then the weekend hospitalist came in and checked up on me to make sure there weren’t any major changes since she saw me yesterday.

There was another code blue in room 10...only it was never canceled and there was no hallway cheer...which makes me think they weren’t so successful this time. :(  Being on the oncology floor has really shone a different light on my struggles.  Hearing the sounds of the horrible side affects of chemo and cancer and seeing people in such a fragile state makes my suffering seem so minimal.  Would you pray for these dear patients on this floor?  They really need it!

Then the infectious disease doctor came in to make sure everything was ok before discontinuing my antibiotics.  All is looking good as far as infection wise so I’m officially finished with the IV antibiotics as long as everything stays clear.  If any infection returns I’ll have to go back on them.

The GI came in with his team of students/PAs a little later this afternoon.  He, of course, had to really maneuver my J tube around, loosen it, wiggle it some more, thoroughly mash around, etc.  He also happened to be 10 minutes before my pain med was due!  He is ordering a study with dye which is very dangerous for me, but we’ve tried every other test anyone can think of with no answers.  This could potentially tell us a lot and find what’s causing the pain and issues.  I will be pretreated with rescue meds and pain meds beforehand, but I’d still appreciate your prayers that they’ll find the problem and for protection and safety during the procedure!

It appears the ENTs won’t be coming today either...lest they come super late!  Oh well.  Maybe tomorrow??

Taking Life One Hospital Day at a Time...

Allison

The Simple Things (Hospital Day #16)

 Hi There!

     I hope everyone had a wonderful Sunday!  Today

Ezra snoozing on my bed
while I colored.

was another slow day.  Only saw the weekend hospitalist who just stopped by to check in on me.  Ezra pretty much slept all day long!  I did a good bit of coloring, watched some movies, and decorated a little more with the special decor Mom brought me this morning.  She brought me a fun fall/thanksgiving haul from Hobby Lobby so I got to put stickers on my window, mirror, and wall!  I then took a little break before getting a shower this evening.  I figured I’d go ahead with a shower on the weekend while there wasn’t so much doctor traffic and that way I could ensure I’d get a whole shower and I’ll be fresh for whatever torture they have planned for me next. :)

My mirror stickers :)
Happy Fall, Y’all!

My wall art :)  squirrel, turkey,
pumpkins, and leaves galore!

Love my window decor!

Pain control has been going fairly well except for really bad break through pain that is caused by showers.  My J tube rebels when it comes to showers.  So I just got through a pretty rough bout of pain ... thank God for pain medicine!!  Now I kinda feel like a zombie, but I’ll take it over excruciating pain!

So yeah, not much to really update you on today.  Hopefully ENT will get in here tomorrow and check my nasal passageways and establish a plan so when they get to look at the different NJ tubes they’ll already have the other info!

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

Allison

Typical Hospital Saturday (Hospital Day #15)

Howdy!

   So, last night (Friday) was one of the best nights that I’ve had recently as far as sleep goes.  I got about 5 1/2 solid hours of sleep!  They coordinated very well where the CNA came in right at midnight for vitals and weight and then the nurse came directly afterwards with my pain medicine.  I got a little bit of sleep until the nurse came back at 2:00 for meds and blood draw but didn’t wake me up much so I slept from around 2:30 until 8:00!

Sitting beside the bed coloring
while Ezra claimed my bed!

Today was slow and relaxed.  I sat up in a chair for a little over 5 hours, coloring, listening to music, playing with Ezra, and watching movies.

My sweet Ezra all zonked
out on my bed :)

The weekend hospitalist came in just to check up on me and make sure there hasn’t been any major changes or issues.  Then respiratory therapy came to check my breathing again and, yet again, was wowed at my lung capacity! LOL  If only you could’ve seen her face!  She said she had only seen one other patient that ever got it that high.  Playing the trumpet definitely has its perks! ;)

My weight loss seems to be starting to pick up pace and my TPN has been upped from 80 to 100.  Hoping the nurse will be good to me tonight and wait until pain meds time to do my vitals and weight!  She’s sweet so I think she’ll agree! :)

This evening I got to FaceTime with the rest of the fam at home to watch my sister open her birthday presents.  I’m disappointed to miss yet another family birthday because of being in the hospital....this is #4 this year. :(

Anyways, now I’m finishing off the night with some Christmas movies! ;)

Thank you so very much for your continued prayers, comments, and support you’ve shown me — it really

Ezra playing with bubble wrap :)

means a lot and helps keep my spirits up being trapped in this room!  And, as requested, I tried my best to get some good pictures of Ezra playing with the bubble wrap! ;)  Hope you enjoy!

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

Allison

2 weeks??? (Hospital Day #14)

 Gracious....2 weeks in this place.  The hard part is that I don’t have the end in sight right now which is making it extremely discouraging.

Last night was a little tough.  I had to deal with the results of an NJ tube only without having the NJ.  See, the aftermath of getting an NJ includes burning in the nose to breath, pain kinda like someone lightly socked you in the nose, sore throat, and sneezing like crazy... this is all part of getting the NJ and getting used to it.  The horrid part is that I hadn’t gotten the tube so I’ll have to go through it all over again.  Lovely!  Plus, I had taken pain meds, gotten really good and asleep, and the CNA walks in right at 1:00am not only to get my vitals, but also to make me climb out of bed to stand on the scales for a weight.  Yeah, I wasn’t a happy camper!  I had finally gotten into a good sleep plus moving makes me hurt worse and my next pain meds weren’t due until 3:30!  So, I ended up awake until after my second pain meds at 5:15!  Sleep doesn’t come easy right now.  To beat all, I had some medicine and labs scheduled for 2:00am so why not come in with the nurse at that point to weigh me??  I still kinda hold a grudge - I like my sleep.....especially after a hard day! ;)

Ezra, however, had the time of his life last night when the nurse brought me some “poppy paper” (aka bubble wrap).  He told me I could pop it for some stress relief (teasing), not realizing that popping those little bubbles is one of Ezra’s most favorite activities!  I popped a few and Ezra jumped up and about tackled me over it because he was so excited!  I held it out to him and he just started very happily ripping it to shreds and popping all of the bubbles (FYI: close supervision was exercised to ensure no plastic was ingested)!  My nurse said he had no idea it would be such a joy. ;)  I’m very thankful for those little, special moments when Ezra gets a “God hug”, too...he so patiently deals with so much when we’re in the hospital and it makes me so happy to see him that happy about something! 

My silly Ezra all sprawled out on his
back on my hospital bed :)

 He also got to take over my bed and sprawl out on his back to sleep for the night!  He definitely slept good! ;)  Oh, and since they discovered Ezra’s love for bubble wrap, they bring him some every time I take an IV tylenol because it comes wrapped in bubble wrap due to being in a glass bottle. :)

This afternoon, I saw the hospitalist first.  She really didn’t have much to say about anything that I didn’t already know.  Just kind of reiterating the waiting game we are continuing to play.

The GIs PA came and started talking about trying to get allergy & immunology involved about me trying standard TPN (not happening!).  I wasn’t too thrilled with that idea because I can’t tolerate a lot of what is in standard TPN and TPN isn’t the best long term option.

A good while later, the GI doctor came in to see me.  He said they have a rep coming on Tuesday with some smaller NJ tubes and such and they’re going to take a look at those to see if they may work for me.  He really wants ENT to come take a good look so they can see what exactly is going on with my nose and if there is anything they can do about it.  I have seen no trace of the ENT team yet.  I have been NPO since midnight so they can do their scope thing, but here I still sit, wondering if they’re ever going to show up.  On a normal day, I can drink things by mouth since they come out of my stomach drain, but they don’t let me when I’m supposed to be NPO just to make sure there is no trace of anything in my stomach.

It looks like there is no chance I’ll be getting out of here any time before Tuesday and I’d say it’ll be at least Wednesday or Thursday because they have to get the NJ placed if it looks like it’ll work out okay when they look at them Tuesday.

Taking Life One Hospital Day at a Time...

Allison