Big Decisions = Big Changes

 “In the midst of tribulation, Stand by me;

In the midst of tribulation, Stand by me;

When the hosts of hell assail,

And my strength begins to fail,

Thou who never lost a battle, Stand by me.”

—Charles Albert Tindley

Hi Friends!

I’ll start with a little follow up on my last post and then get into the main reason of this update...

I got my covid test done on the 5th and it was negative for the 7th or 8th time now.  I got my J tube changed on December 8th.  It was an extremely painful procedure seeing as how my J tube doesn’t even like the slightest touch.  The tech was quite ticked at the surgeon who saw me while I was in the hospital and messed around with my J tube.  He wiggled it like crazy, yanked on it, and took the balloon down.  Turns out he only put a tiny bit of fluid back in the balloon, causing the actual balloon to be in the stoma instead of in my intestines where it’s supposed to be.....another very legit physical reason for pain.  Anyhow, that night my tube dressing was saturated in the bright green drainage that has been accompanying the infections I’ve been getting at that tube site.  Thankfully, that seems to have subsided without having to take yet another round of big time IV antibiotics...hopefully it stays that way!!

I ended up going to the orthopedic about my right shoulder that has been bothering me since my oral surgery.  I’m very thankful the doctor doesn’t think it’s anything serious and seemed confident that it’s bursitis from positioning during the procedure.  They usually use stretching, anti-inflammatory drugs, ice, and therapeutic patches and, if that doesn’t work, a steroid shot.  Thanks to MCAS, stretching and ice are my options.  He said normally it’s better within 4-6 weeks but with my limited resources, for me it’ll probably be more like 6-8 weeks.

The procedure pain from the oral surgery is nearly gone.  My jaw is still a little angry and the extraction sites of the wisdom teeth are still sore but I would say it is pretty much healed up.

Ezra was a stinker the other day and got into the stack of Christmas presents that hadn’t made it up onto the mantle yet...he managed to steal a present for Bella and proceeded to open it before getting caught!  He was very proud of himself to say the least! LOL

Now for the bigger news...

I called my dentist in Chapel Hill to inform her of the continued tooth pain.  She decided to schedule me to get my stitches removed and she could take a look to see if she could locate the culprit causing all this pain.  I had that appointment at UNC yesterday and the results are fairly devastating and left me with quite the decision to make.  She can’t find the reason for the random tooth pain on the top left and she tried every test in the book only to be baffled.  She said that pain is a mystery and the only things she can think of that could be causing it would be TMJ/jaw issues (something that comes along with my EDS) or unexplained facial pain.  However, it was very clear what is causing the severe sensitivity on the bottom teeth.  Whatever is causing my dental issues in the first place (acid reflux, dry mouth, malnutrition, MCAS) has already eaten away and destroyed the work she did a mere week and a half ago.  The materials she used on those teeth are gone, the demineralization has worsened, and it is now creating cavities...all within 10 days!  It’s unreal yet (unfortunately) very real all at the same time.  So the verdict was that those bottom front 6 teeth are going to have to be pulled.  She then addressed the fact that the rest of the top teeth are so demineralized, stripped of enamel, and could very possibly need taken out very soon.  It’s inevitable I will lose all my teeth due to the source being so chronic with no remedy.  She mentioned the possibility of just biting the bullet, pulling them all, and going straight to dentures and that way I don’t have to keep dealing with this.  There are a few options for me to choose from...removing the bottom front 6 teeth, removing those plus the other 7 top teeth, or removing all of my 18 teeth.  I’m really leaning towards the midway option of removing the 13 worst ones and leaving the 5 back bottom teeth.  Those 5 are in fair shape and it’s possible I could have some time before losing those.  I just don’t know how I would handle losing all of them at once both physically and emotionally.  This is a huge, life altering, irreversible decision that you never expect to be forced to make at 26 years old.  It makes it harder that I haven’t been careless with my teeth - I even went through nearly 3 years of braces....all to be destroyed by a heartless disease.  I’m grateful that I’ve healed better than I thought I would from an emotional standpoint with losing my top front 6 teeth.  It helps that the pain of those teeth left with them.  I know my sweet Jesus has a plan for this and, even amidst the devastation I have peace in knowing He’ll stay with me throughout this entire heart wrenching journey and I’ll have His strength to deal with my future.  SO, I have a pre procedure covid test scheduled for January 2nd at 11:15am and my OR dental procedure is scheduled for January 5th sometime noon or after depending on the previous case that day.  And there’ll be a pre-op appointment squeezed in between those two appointments, but that probably won’t get on the calendar until Monday at the earliest.

I thought I’d share the attached song for a little humor pick me up...I jokingly texted it to my sister and told her I thought I needed to sing it to myself to which she replied “Maybe if you sang it to your teeth, you could convince them to stay.”  It provided a much needed laugh for me and I hope y’all enjoy it! ;)

Taking Life One Decision at a Time...

Allison

I survived....

 Hi friends!

     I apologize for it taking so long to write, but honestly today was the first day I’ve really felt like doing much of anything.

Praise the Lord I had a WONDERFUL anesthesia team that was already educated on mast cell disease and wasn’t eager to swap up my safe protocol!  I was under anesthesia for 5 hours and the dentist was working most of that time.  The previous case was complicated so I didn’t end up going into surgery until 4:00pm.  I woke up in agony and begging for pain meds!  She pulled my top 6 front teeth, pulled 2 wisdom teeth, and did countless fillings.  All of the gums are stitched shut to minimize bleeding and enhance healing.  There is

nothing quite like losing all your front teeth to really teach you a lesson on vanity!  It’s been hard.  I honestly hate the way it looks now, but can’t really do anything about it.  Ya kinda have to heal both physically and emotionally.

As far as healing is concerned, the pain from the front extractions is almost gone, the wisdom teeth space is still painful, my jaw is still quite painful (not just from the length of time my mouth was open, but also the change in my bite), and most of my joints from the hips up are really hurting me.  I have a shoulder that is popping in and out thanks to EDS and being transferred while under anesthesia.  Hoping it’ll heal with minimal intervention!  The swelling in my face is almost gone, thankfully.  However, after all of this....I still have random tooth pain on the left side and sensitivity in my bottom teeth.  I fear there may be more work that’ll need to be done to get it all fixed.  I plan to contact the dentist on Monday to let them know and see how we need to proceed.  My airway is having a rough time recovering from the intubation.  My asthma is a bit flared up, but hopefully soon it’ll calm down!

Well, I’m on my way to get another covid test done.  Joy, joy!  Have to get this one so I can get my J tube changed on Tuesday.

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

Allison

Oral Surgery & Other Stuff ;)

 Hello Friends!

     It’s been a little while.  I hope everyone had a wonderful Thanksgiving!  My family actually got to celebrate on Thanksgiving day unlike last year when I was in the hospital.

My J tube was indeed infected so I was started on yet another round of a strong IV antibiotic.   The drainage cleared up on Thanksgiving day and hasn’t returned since.  I’m supposed to finish the antibiotic tomorrow.

I lost my precious Labrador retriever, Lickerish Lucy on the 22nd.  I’d had her since she was 3 months and it breaks my heart not to have her anymore, but I’m glad she’s no longer suffering.  Thankfully, despite being allergic to her, I got to spend over an hour with her the day before she passed away and I’ll always treasure that special time.

I had my Christmas photoshoot done Friday (day after thanksgiving) and I’m so excited with how they turned out!  Can’t wait to get my Christmas cards made!....that’s one of my favorite “tradition” that I’ve made!

Saturday I made the trek to chapel hill to get my pre procedure covid test for my oral surgery.  After coming back home, we all headed out to go to the Festival Of Lights at Tanglewood park.  We left the house around 6ish and we learned that it is NOT smart to go on the weekend in the evening... we waited and waited and waited some more before finally getting to see the lights and didn’t get back home until 4:30am!  We were absolutely exhausted but had fun anyways!

We had Sunday afternoon/evening to get everything packed and loaded for UNC Chapel Hill.  We (Me, Mom, Dad, and a sister) left this morning around 10 and are now comfortably settled in our hotel/home away from home for the next 2 days.  I had my pre care (anesthesiology) appointment this afternoon and all is a go for tomorrow.  I’m supposed to arrive at 10:30am to get registered and it’ll probably be somewhere around noon when they get started and who knows how long it’ll take.  Lots of work to be done!  I’m very prepared though....comfy pjs and slippers are packed in my hospital bag so I can change into those to leave the hospital, head back to the hotel, and hit the sack.  Hopefully nothing happens to require me to stay in the hospital!  This will most likely be by far the most traumatic oral surgery I’ve had so far seeing as how there are a lot more teeth going to have to be removed whereas before I think the most I had pulled at once was 2.  Fun, fun!  Looking forward to getting out of pain...even if it means going through a lot more pain to achieve that.  Prayers are much appreciated!

I have an appointment to get my yucky (most likely mildewed) J tube exchanged on the 8th of December and another pre procedure covid test on the 5th.

Well, I’m off to finish this movie and get in bed.  Have an early morning for a shower and to get out of the hotel in time!  Thank y’all so much for your continued prayers and encouragement!

Taking Life One Less Tooth at a Time....

Allison

Uphill Battles...

 “Every mountain top is within reach if you just keep climbing.” – Barry Finlay

Hi Friends!

     Let me start off by apologizing for the greatly delayed update.  Frankly, it has been really difficult to gather my thoughts much less write them.  On top of that, I feared I wouldn’t reflect a very positive attitude as I had been greatly struggling in that department.  However, it is time for an update and that is that.

I want to start off with some encouraging news...  I officially have an appointment to get my teeth done under general anesthesia!  I go in on Saturday, November 28th for a covid test, have my pre op on the 30th, and the procedure on the 1st of December!  Sadly, its looking like I will lose at least a couple of my top front teeth if not all 6 plus multiple others.  The dentist said with my teeth beginning to break off again despite them being built up there is not much hope of saving them.  Like she said, you have to have a good anchor of tooth in order to do crowns or anything of the sort and I have very little that isn’t synthetic.  She’s even questioning how strong the roots and jaw bone are at this point.  It’s crazy to think of having partials/dentures at 26 years old but that’s just how life rolls I guess.  Right now it’s so painful I really don’t care what they do - just so long as they fix it!

I’m at a standstill with my tube issues.  My J tube continues to lie dormant and hurt.  However, the pain has decreased some since discharge mainly because I can now take my regular and rescue mast cell medicine that the hospitalist was withholding from me while I was inpatient.  It is proven that mast cells cause increased pain and I know from past experience that there are many times that has happened to me.  And we told the hospitalist that, but she refused to give me Benadryl and instead chose to give me narcotics and then put me down in the record, making it look like I wanted the pain meds.  I’ve lost count of how many times I’ve just wanted to yank this tube out but I know that certainly wouldn’t be a good idea especially right now!  My G tube continues to give me issues and is showing signs of breakdown of the stoma (hole for tube) but thankfully the infection seems to have cleared after an extended round of IV antibiotic.  I’m still having the pain, periodic bleeding, and discharge of what appears to be pieces of flesh out of the stoma.  I saw my GI on the 11th about it and his latest decision was to have me not put any dressing underneath the bumper and leave my tube super loose to try to get it to heal.  He also doubled one of my stomach medicines that helps heal ulcers.  My J tube appears to be growing fungus inside the tube itself so my GI put in an order to get it changed.  For now the plan for my J tube is still just waiting in hopes it will heal.  I still can’t get my formula rate up even through my NJ tube.  I’m doing concentrated formula now instead of diluting it.  That way I maximize the amount of nutrition I can get out of the small amount of formula I can do.  My GI is slightly perturbed at surgery for being so hard to get along with (saying they’ll NEVER put another J tube in if this one is removed) and he informed me of a physical reason for my J tube pain....I have chronic inflammation around my J tube and he also mentioned the fistulas as if they could very likely be causing pain....duh!!  It’s looking to me like a certain hospitalist ignored obvious physical issues that could easily be causing this pain and decided just to put all the blame on me, saying I was lying.  Anyhow, enough about that...Yesterday morning when I went to change my J tube dressing I noticed a little bit of the bright green drainage again (like I had with the 2 previous J tube infections) so I notified my infectious disease doctor.  I got a call this morning asking me to come into the office for a nurse visit.  So I went and they did a swab for a culture of my J tube to see if there’s presence of infection again.  The swab itself made my J tube MAD - super painful!  Thankfully it is calming back down to status quo after IV Tylenol!

I’ve been doing anything and everything I can to keep myself busy and distract myself from the constant pain....getting out of the house as often as I possibly can, crocheting, practicing with Ezra in safe(ish) stores, decorating the house for fall/Thanksgiving, etc.  I went ahead and decorated the front of the house for Christmas since I’ll be dealing with the dental procedure around the time I normally would decorate.  I plan to decorate the inside for Christmas either Thanksgiving night or the day after.  I’m just trying to focus an anything other than my current predicament. ;)

On the 8th, our whole family went to the Asheville farmers market for some apples and veggies.  We met my brother, SIL, and my two youngest nieces there for a packed/picnic lunch at/in our van and then had some family fun just perusing through the different vendors.  It was sad to see just how empty it was this year.  It was the emptiest I have ever seen it even in December!  We still enjoyed ourselves and despite being absolutely drained of energy and my pain escalating, it was very good therapy for me!

RZ Mask is having a photo contest in which the winner gets $200 to spend on RZ.  I entered and would love to have your vote!!  Go to this link (https://a.pgtb.me/P9cdnv/rFFnF?we=84183012-258320412&fbclid=IwAR33zJamW2qMMBs8DQckHmyjwej-rz5mQyujK9cU_CRNpjKsnxb1M3mMP2g), click “vote for entries”, enter your email address, and click the heart below the picture of me and Ezra!  You can vote once every 24hrs. :)

Life is discouraging and frustrating and I could really use your prayers and encouragement right now.  My body and soul are very weary and it’s just been difficult to push through each day without completely giving up.  I’m very grateful for the Lord’s strength because I would definitely not get through this without Him!

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

Allison

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