Procedure Time

Just letting you know my endoscopic GJ tube placement is scheduled for 12:30 today and they’re supposed to come get me at 11:30....I would greatly appreciate your prayers!

Allison

He is so photogenic today! ;)

Just passing the time snapping
pictures of this adorable little man :)

The Official Plan...

Just a quick update on THIS post........

We have a plan.  Lord willing I will be getting a GJ tube placed via endoscopy sometime tomorrow.  They will make sure my formula goes well without any issues and then I should get to go home.  What time they get me in will determine when I go home.  If it’s early then I might get to go home tomorrow but if it’s later I’ll have to stay the night.  Given my history with GJ tubes, they are treating this as a temporary fix to get some nutrition in me.  If it works, that’s great, but they want us to continue forward with the J tube planning unless it becomes very evident that it won’t be necessary.  I don’t have high hopes because I’m tired of getting hopes up and then having them crushed so my official life policy is to expect the very worst and then I can be ecstatic if something actually works out! ;)

Please pray for a good doctor doing the procedure, staff that accept the “out of box experience” that I am, and very good anesthesia staff that will do things the way my body requires!

Taking Life One Medical Adventure at a Time,
                                                                  Allison

What Plans Do Best......

“For my thoughts are not your thoughts, neither are your ways my ways, saith the Lord.

For as the heavens are higher than the earth, so are my ways higher than your ways, and my thoughts than your thoughts.”

Isaiah 55:8-9

In the elevator on the way up to
get my hickman working again.

As you can tell by the title...my plans yesterday did what plans do best...they changed.  Instead of a quiet evening with the family and a family movie before bed, I’m now able to say...greetings from The Medical Inn & Suites (aka hospital).  When I awoke yesterday morning I did not think my day would end like it did.  I went to my appointment at noon to get my hickman working again.  Praise the Lord, it is now working great with blood return and I actually got to do my potassium infusion without my pump fussing and failing the whole time!!  That was a huge blessing!

Right after we left there, I called my GI’s office again to try to get the endoscopic GJ tube placement scheduled.  Well, I decided to give them all the details in hopes that it would get them to get back with me sooner.  I told them how I hadn’t had any nutrition whatsoever since Thursday, I was losing weight, etc.  Well, I got a prompt call back....only from my GI’s nurse instead of the scheduler.  I think my GI slightly freaked out because he was unaware that I wasn’t eating anything.  He thought I was eating and just supplementing with formula so the abscence of formula for a short amount of time wouldn’t be that detrimental.  So he did not want to do a GJ because that’s putting me to sleep and placing something in that has failed a gazillion times and would most likely fail again.  The nurse said that the surgeon was going to call the GI so they could come up with a plan because this was something that did not need drawn out and it had already been drawn out long enough.  She said she would call me back as soon as she got word of their plan.

Ezra is the definition of a faithful friend.
He sits in ER floors for hours when I’m sick,
he’s patient when I am flustered
and frustrated, he watches out for my health,
and he offers such strength in his presence.
I love you beyond words, Roo, and
I can’t imagine life without you!

She called me back fairly soon after and told me that the surgeon and my GI ended up having a detailed discussion because my GI wanted something more permanent (J tube) done pronto whereas my surgeon wanted something temporary so he could do some researching on his options and figure things out before doing surgery.  Sooooo, they finally concluded that I needed to go to the ER without delay so I could be admitted and get some form of nutrition because nothing they would do could get done as fast as I truly needed.  I really didn’t want to go, but I knew I had to in order to get some help.  So I got a quick shower, got packed up, and ended up getting here around 9:00 last night.  The place was PACKED with VERY sick people.  I was closterphobic because it was so cramped plus I’m a germaphobe anyways so I was about to go out of my mind.  I turned music to max on my earbuds, trying to drown out the horrible noises of moaning, coughing, and vomiting.  I’m hoping and praying my weak system didn’t make me susceptible to all of that yuck!  Anyhow, I was finally taken back to triage and spent a little time their before getting to a regular ER room.  They did some blood work which came back that I’m indeed dehydrated.  They were going to put me on D5W (sugar water-dextrose), but upon learning that there was no way I could have that, he said “oh, ok...then we’ll just do lactated ringers!”.....ummm, can’t have that either.  He paused for a minute and then asked if he could give me saline to which I agreed.  He then informed me that they were getting things started to have me admitted.  I got some extra fluids and talked to multiple drs.  Somehow everything got mixed up when the info was passed to the morning ER doctor because she was under the impression I was waiting for interventional radiology to just pop a tube in.  She left to go read the actual notes instead of just going off of what she had understood from the previous doctor.  She came back and said that she had misunderstood and that I was indeed being admitted and they were getting in touch with GI to see what they wanted to do.  My nurse today is one that I had twice with the multiple recent ER visits for my J tube issues.  She actually talked to the doctor and told her that she had been my nurse at least twice recently and I needed SOMETHING done.  That actually was a blessing because that added some urgency to the matter.  I was then informed that not only were they getting ahold of GI but also contacting surgery.  So, long story short...I'm finally in my room!  I’m on the chemo floor because there’s less exposure to triggers and germs.  They have contacted GI, have me holding my Lovenox (blood thinner injection), and I’m completely NPO (Which means nothing to drink either) just in case they may get me in to get something done today.

Chilling in the ER....just waitin’

I’m a bundle of emotions...excited, nervous, relieved, exhausted...but peaceful.  So thankful for the peace that only my sweet Savior can give even in the hardest of times when the storms of life are raging around me and my body and soul are failing me — Jesus never fails and I know I can trust Him to guide my next step even though the fog is so dense that I can’t see where to take that next step.  I just ask that you please pray for me, my dear family, and my precious Ezra during this difficult time.  Yes, I have to go through the procedures, pain, and recovery, but at least I become very unaware of what is happening via anesthesia while my family and precious service dog have to be aware of the circumstances and have the dreaded wait to see how things go.  Ezra, especially recently has become very aware of when I’m in pain.  He will cry, put his head in my lap, and or snuggle up to me.  It’s the sweetest, but yet heartbreaking at the same time.  With MCAS, every single time you go into a procedure/surgery, you have no idea how your body will respond.  Having a wonderful support system is such a comfort when going into scary things - knowing that I’m in the hands of the Great Physician and hearts of my family and close friends makes a huge difference as I rest on that table, waiting to go unconscious.

Chilling in the ER....just waitin’

I (or my family) will try to keep you informed as plans fall into place.  If, for some reason I’m not able to update, my family doesn’t know how my blog works so they will, Lord willing, update on my caringbridge (www.caringbridge.org/visit/allisonworkman).  With that said, check my caringbridge if it has been a while since an update has been posted here.

Thanks again for your continued prayers, love, and encouragement!

Ezra is the world’s best pillow thief! LOL

Taking Life One Tube at a Time....
                                               Allison

Hi Friends!

    I’m back to update you on my appointment with the surgeon.  It went very well and I’m very pleased!  So the plan is for me to urgently get my G tube changed out for a GJ tube placed indoscopically while I wait for J tube surgery because I have no nutrition whatsoever, I’m losing weight, and it’ll probably take at least a couple weeks to get me squeezed into his schedule.  He would love for the GJ to actually work this time to avoid me having to have another J tube surgery.  When I ended up with my separate G tube and J tube in the first place was because the GJs kept coming out of place, with the part that is supposed to be in my intestines coiling in my stomach instead.  It got to where it wasn’t even staying but for a day or two.  I give it probably a 10% chance of success but I would be thrilled if it worked and I’m desperate for nutrition at this point so if it ends up only staying a couple days at least I’ll be getting SOMETHING in me.  Just since Thursday (day after they removed my J tube) I’ve lost 12lbs and I’m beginning to show signs of dehydration.  Nothing has been scheduled yet, but I’m hoping for an appointment to be scheduled by this afternoon to place the GJ.  Please pray about this!

I have an appointment at noon today to get my Hickman fixed.  It hasn’t been giving blood return since my hospital stay and is now sluggish enough that even my pump that does my fluids and potassium is alarming and struggling so they have to put a certain kind of medicine in it, let it sit for a while, and then pull it back out to help clean out the line and get it working again.

Thank you so much for your prayers and encouragement!

Allison

Longing For Home...

Hi There!

      I figured it is beyond time to let y'all know what has been going on.  I do apologize for my absence, but I hope you can understand just how difficult it has been for me to talk myself into updating.  Life has been very complicated and the road has been far from smooth, so without further ado.......

I will start by following up on the subjects of my last post...

     Since my last update, I have seen the orthodontist about my upper adult teeth that are still up in my pallet (due to the suspicion of them starting to move) and to address possibly getting a modified retainer that would protect my upper teeth where I have gaps in my lower teeth from teeth being extracted.  They did a panoramic X-ray and concluded that my upper adult teeth that are still in my pallet have not moved!  Praise the Lord!  So we have no concerns about that anymore.  They can't make a specialized retainer for me, but she did say that my upper teeth are safe as long as I'm wearing my upper clear retainer that caps over my teeth because they are technically biting on a hard surface.

     I also mentioned that we had appointments with our mast cell specialist in NY.  It went well.  He had some more medication suggestions and ideas for me to try.  I tried one so far and it did not go well.  So, back to the drawing board.  I have another one in waiting for when I can try it, but that hasn't happened yet.  Oh, and by the way, Connecticut "beaches" are strips of sand by a lake. :)  So yeah, that didn't happen.  I was a bit disappointed, but I lived. ;)  I was glad that I hadn't gotten Ezra excited about it (he knows the word "beach") because I would've had to get out in the sand even though it wasn't the ocean!

That concludes the follow up to the last update......now for the current news.

My sweet Ezra on our second trip to the ER.
He is the sweet face of patience,
love, and strength.  He does so much for me
physically as well as emotionally.

     After trying the new medication that failed, I began trying the new formulas on September 21st.  This started a whirlwind of issues that have wreaked havoc on my body and have had some devastating consequences that have hit me really hard physically and emotionally.  With each formula I tried, I would have a reaction that included abdominal swelling amongst many other serious symptoms (one being blood pressure of 77/41).  The swelling would cause excruciating J tube pain until I would recover and the swelling would go down.  Once I finished trying the last formula, the J tube pain didn't diminish as it had with the other trials.  It just escalated and was an odd, deep, inside pain - not anything I had ever experienced with my J tube.  They did a non-contrast CT scan to see if they could identify the source of my pain.  The results came back showing cellulitis so I was put on an IV antibiotic for a week.  The puss like drainage stopped, but the pain just continued to escalate to where I was miserable.  I ended up going into the ER the evening of Thursday, October 17th because I was just so desperate.  They gave me something for the pain and did a repeat CT to see if the infection had worsened or if I had developed an abscess that would be causing the pain.  Well, the doctor walked back into the room and said the CT was unremarkable.  The infection was gone and the tube was in the correct place.  She then offered for me to be admitted for pain control.  I told her if I was admitted I wanted to be admitted for someone to figure out what was wrong, not just pain meds.  I then asked if they could possibly see where the balloon was (the balloon that holds the tube in) because, with prior experience with my G tube balloon being dislodged and being in the stoma (hole for tube), I wondered if maybe my J tube had done the same thing.  She was unsure so she left to go check.  At that point, I broke down crying.  I couldn't sleep, I couldn't function, I couldn't stand the pain.....the thought that the test would come back totally fine was just overwhelming.  I didn't know what I was going to do if it was indeed perfectly fine.  The doctor returned with some news...She said the GI doctors had looked over the scan and I was correct - the balloon was dislodged and in the stoma.  So, they admitted me for the night so they could take me to the Interventional Radiology (IR) department when they opened the next day.  They took me to IR Friday afternoon to manipulate my tube to get the balloon back where it's supposed to be which gave me slight relief and then I was discharged early Friday evening.  By the time I got home, the balloon had already dislodged again and I was back in the same predicament.  We called my GI office's after hours line to see what we should do.  They told me to go back to the ER which I did early Saturday morning.  Well, they decided that this time IR would completely change my tube to see if maybe my current tube's balloon was actually malfunctioning somehow.  They did so and sent me back home.  By Sunday afternoon, the balloon had dislodged AGAIN, but I was able to hang in there for my mom and sister to get a little sleep and then we headed out to the ER at 5:30am Monday.  Talk about insanity....they did the very same thing only this time they "put a little more in the balloon" to make it bigger so it wouldn't dislodge again.  We had been in contact with my GI multiple times and he was trying to figure out what was going on.  By this time he had concluded that they just needed to re-site the tube (do surgery to make a completely new stoma/hole for a new J tube) because it was highly suspected that the stoma was ulcerating causing the pain, bleeding, and allowing the balloon to pop into the stoma due to dilation of the inner part of the stoma.  They referred me to a surgeon and I have an appointment with him tomorrow.  Monday night (after they had "fixed" my tube that morning) was HORRIBLE!  I was SO sick!  I was draining a lot of excess intestinal bile from my stomach, was having excruciating intestinal spasms (NOT abdominal cramping...there is a huge difference - trust me!), and having spewing of intestinal content around my J tube.  I was in a ball, sobbing, and begging to check my balloon to see if maybe it was a little too big.  Mom finally made a deal with me - I would take the balloon down and then fill it halfway between what I normally had in it and the amount they had filled it with.  When I deflated the balloon, I then began begging not to have to keep that deal and just add a little more than my normal.  The normal amount in the balloon for me is usually no more than 5cc...they filled it to 10cc, essentially causing an intestinal blockage.  So I ended up filling it back to 6cc which still caused some of the symptoms of intestinal "crowding", but I was much better off than I had been when it was twice the size that it is normally!!  I'm just thankful I have a G tube for draining my stomach because (TMI warning) people without that option end up vomiting all the excess because theres nowhere else for it to go.  When I went to change the dressing on my J tube Tuesday morning, it looked rather bad.  The suspicions of it ulcering were no longer - it was confirmed.  I could see where the ulcers had progressed to the outer edge of the stoma.  What happens is they start inside where you can't see them but you sure can feel the agonizing pain, but as they progress and worsen, they spread and work their way through to the part of the stoma that you can see when looking at the tube site.  By Tuesday afternoon, the pain was excruciating.  I knew I wouldn't make it much longer before having to get some relief.  I tried to let my mom and sister get some rest that night, but I just couldn't.  By midnight I was begging them to hurry and get to the hospital.  We decided to go to a different ER this time because #1. I was fed up with them just doing the very same thing even though I was only worsening and #2. the surgeon who I'm supposed to see is affiliated with that hospital and not the hospital I had been going to.  I was thrilled at first because the ER doctor's plan was leaning towards admitting me and getting the surgeon to see me and maybe get the surgery done quicker.  However, it quickly changed when he talked with the surgeon.  The surgeon told him it would do no good and he would see me in the office because they would have to order my tube anyway (NOT true...they carry them there at the hospital).  I informed the doctor that they did indeed already have the tube I can use and then asked if there were any other surgeons that would be willing because I was desperate.  He said he still felt like that was the best option and he would go see if someone would admit me and if there was anyone else that would do the surgery.  He came back with the most devastating news......no.  So the plan was to manipulate the tube for the 4th time and send me home.  So I stayed the night in the ER with pain control while I waited for IR to be able to take me.  When we got to IR I asked if they could call my GI and let him tell them what he was thinking and ask about maybe just removing the tube because I knew I wouldn't be able to stay out of the hospital because of the excruciating agony I was in.  They called him and he told them to go ahead with removal.  So, Wednesday I bid my J tube (and only avenue of nutrition) farewell and am awaiting my appointment with the surgeon tomorrow.  Thankfully, since removing the tube, pain has been minimal and I haven't had to return to the hospital.

The surgeon I'm scheduled with is the surgeon who refused to give me a J tube in the beginning when my GJ tube was failing and I really needed separate G and J tubes.  I'm really hoping that since I've had a J tube for nearly 2 years, was pleased with it until complications arose, and I want another one that he will go ahead and do the surgery for me.  PLEASE pray that SOMEONE will do J tube surgery soon!  I'm majorly feeling the malnutrition setting in.  All I can do by mouth is liquids that flow straight through and out my stomach drain and organic hard candy that, of course, melts and drains.  Anything else makes me sick.  This means that really all my body is actually getting is the liter of potassium infused saline going into my veins via my Hickman each day.

All of this makes it all the more difficult to think about trying anything else.  To have your J tube be damaged to the point of no return (which is a very difficult surgery to go through) as a result of reactions is very traumatizing.  This is a huge blow not just physically but emotionally as well.  To be blunt - its terrifying.  I never ever ever ever want to go through that agony again!  The pain I went through these last few weeks was seriously worse than the pain of the J tube surgery.  And that is saying a lot!

On top of the current circumstances, I was informed that I have exhausted all formula options and I will either have to find a nutritionist that is able to put me inpatient to try compiling a formula specifically for me that my body can tolerate (which is much more difficult when you have to administer in the intestines through a J tube vs just in the stomach via a G tube) or a pharmacist who can make a version of TPN (IV nutrition) that doesn't contain dextrose (the normal base for TPN) or anything else I can't tolerate.  We are in the process of trying to get the formula company to either manufacture the old version of my formula that I can use or release the recipe for the old formulation so I might find someone who can make it for me.  I have a little stash of the (now expired) old formulation left, but it won't last too much longer and then I'll be stuck with absolutely nothing unless we find something before then.

Congratulations if you have made it this far!  Thank you for caring enough about me to read my long updates and pray for me!  Jesus is my anchor and without Him I know for a fact I wouldn't be here today.  The last few weeks have been only the promise of Heaven getting me through each minute of every day.  I have never before been so strongly tempted to quit.  It is like I'm in the middle of an earthquake and life is caving in on me.  I just desperately need help and as each day goes by my hope of getting that help dwindles.  Right now this song is so appropriate to describe my heart right now.....Every day finds me Longing For Home...

Thank you for your many prayers, much love, and encouragement!  Your support is a big blessing to me!

Taking Life One Exhausting Step at a Time...

                                                                 Allison