Journal

Journal entry by Allison Workman www.caringbridge.org/visit/allisonworkman

Hi There!
 
    I'm so sorry for not updating the last few days.  I am still in the hospital, however nearing my goals that have to be met before discharge!  If I'm calculating correctly, today marks day 10 inpatient.  To say I am ready to go home would be an understatement!
 
My GJ tube was swapped out for just a plain G tube on Saturday and my 6 little laparoscope incisions from J tube surgery are healing up nicely.  I like where they placed this new J tube better than my other J tube because they did it a little lower whereas my previous tube was directly under where my waistband always landed.
 
The two goals I must reach before discharge are #1. 24hrs without the high powered IV pain medicine and #2. getting my tube feeding to the desired rate.  On my own, I've been pushing the pain med out over 8hrs between doses and today the doctor bumped it to every 12hrs so it'll be there if I need it, but its very spread out because we certainly don't want my body to get hooked on it!  The goal feeding rate is 65ml per hour around the clock and I'm currently at 55ml.  I'm SOOOOOO close!
 
I'm really hoping to get to go home by Friday....So, I'd appreciate my prayer warriors praying for that goal!  After this long in the hospital, I am REALLY ready to be free and finish recovery at home (and I know Ezra has the very same sentiments as I do!)! :)
 
Taking Life One Hospital Day (hopefully not too many more!) at a Time...
                                                                                                              Allison
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Journal entry by Allison Workman www.caringbridge.org/visit/allisonworkman

Hi there!

 

        I’m sorry this will be short, but I’m on pain meds which makes it difficult to stay alert and keep a train of thought very long.  Surgery went well.  They had to create a new site due to the old one not being suitable.  I have 6 small incisions from the laptroscopes they used and then, of course, the new tube site.  The pain is rough which is to be expected when you have stitches and incisions through your abdominal muscles.  I’m very proud of my Ezra - he has been a very good boy, however, super clingy.  He is determined that there will be NO ONE taking his mommy today!  He refuses to get off my bed and is just snuggled up to me.  Poor fella is in for a rude awakening when I have to go to radiology to have the GJ swapped out for a G.  They actually planned on doing it while I was in surgery, but for some reason they couldn’t.  It’s no big deal, though....literally just removing the GJ and sliding a G tube through the hole I already have in my tummy.

 

Anyways, thank you for praying and coninueing to pray for me!

 

Allison

Journal entry by Allison Workman www.caringbridge.org/visit/allisonworkman

Allison is out of surgery and in recovery.  The surgeon said all went well.  They did have to make a new tube site instead of using the old site, but they were able to use the same section of intestine, so that is a good thing.  It will probably be a couple hours before we know anything more or are able to see her.  Thank you all so much for praying!

Journal entry by Allison Workman www.caringbridge.org/visit/allisonworkman

This is Christina — Allison’s sister.  They began the surgery about 8:41.  They had said they expected the procedure to take less than an hour, but we just received an update.  They said all was going well and they hoped to be finished in the next hour.

Journal entry by Allison Workman www.caringbridge.org/visit/allisonworkman

"When the storms of life are raging, stand by me;

When the storms of life are raging, stand by me;

When the world is tossing me like a ship upon the sea

Thou who rulest wind and water, stand by me.

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.

In the midst of faults and failures, stand by me;

In the midst of faults and failures, stand by me;

When I do the best I can, and my friends misunderstand,

Thou who knowest all about me, stand by me.

When I’m growing old and feeble, stand by me;

When I’m growing old and feeble, stand by me;

When my life becomes a burden, and I’m nearing chilly Jordan,

O Thou Lily of the Valley,stand by me."
— Charles A. Tindley

                                                       -----------------------------

 

I have much news to report...  First of all, we got a room last night and I finally got a nice, warm shower!  It about half killed me but oh, how it feels so good to be clean!  My heart rate went over 150bpm just from a sit down shower because I'm so malnourished.  I guess it's no wonder since I've only had about 335 calories in 2 weeks.

Anyhow, right after we got up to the room, one of the surgeons came to discuss things with me.  As long as everything goes as planned and its healed up good, they hope to be able to use the same stoma (reopen the previous hole) for this new J tube.  Again, it will all depend on how the healing went because we certainly don't want to do that if its going to mean that the new tube will fail right away!  I am SO ready to go back to having a separate G and J tube!!!......Yet, I'm not too ready for the surgery/recovery part! ;)  

I have yet to meet the actual surgeon who will be doing my surgery, but someone from the anesthesia team came this evening to get some info finalized.  The surgery is officially scheduled at 10:30am tomorrow as long as nothing comes up.  They said I'll actually meet the surgeon and anesthesiologist tomorrow before surgery.

 

Please Pray...
  • I would get a good surgeon who will do a good job.
  • I would get a good anesthesia team who will do what I need and be careful.
  • Strength for me both mentally and physically as my body is literally running on hardly anything. (They plan to start me on some fluids this evening to replenish a little prior to the procedure.)
  • Strength, comfort, and courage for my family and precious alert dog, Ezra.  I know it isn't easy on them when I go into surgery.
  • Good recovery and a successful tube surgery!
I am so grateful for people who pray and a merciful, loving, precious Savior Who answers!

 

Taking Life One Minute at a Time Til Surgery...

                                                          Allison


"...The things which are impossible with men are possible with God"

Luke 18:27

Journal entry by Allison Workman www.caringbridge.org/visit/allisonworkman

Well, hello there!

     Long time, no see! :)  Y'all have been so amazing with your comments and many prayers......I can't thank you enough!

I'm still in the hospital.  I saw the GI yesterday morning and he ordered a KUB (abdominal X-ray) just to confirm the exact position of the tube.  Later yesterday afternoon, I saw the hospitalist who told me that the result of the X-ray was that the tube was in the right place.  He said for that they recommend a slower rate or a different formulation of formula.  I did a super slow rate when I started my formula after they put this GJ in so that was useless.  When he left, I cried....and cried....and cried some more because I knew it's out of place and I've had it to where it doesn't look out of place on X-ray because I can't have contrast dye plus, with this girl, when you combine malnutrition, exhaustion, and disheartening news you just have yourself a regular waterpark! ;)   The GI came in this morning and followed up on the X-ray.  He said in all actuality the J portion of the GJ is only barely into the intestines and mostly coiled in the stomach.  This can cause feeds to easily reflux back into the stomach.  Long story short, GI told the hospitalist to go ahead and get the surgery team on board for a J tube consult.
---------------------------------------
A few prayer requests...

• The hospitalist will agree to go ahead and bring in the surgery team for a J tube

• A good surgeon who is willing to do the J tube

• Strength as this rocky journey continues

• A regular hospital room (with sleeping arrangements for my family, a bathroom and, more specifically, a shower!!) to come available really soon...I'm still in the ER holding unit.

That's all I know for now...I'll have to let you know how everything turns out.

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

Journal entry by Allison Workman www.caringbridge.org/visit/allisonworkman

Dear prayer warriors....

The love and encouragement you have poured out to me has just been wonderful.  I love the Lord’s perfect timing.  There were a few CaringBridge comments that I hadn’t seen and ended up finding while in my current position......sitting in the hospital.  Long story......

 

SO, I called my GI’s office first thing Monday morning, as planned, about possibly having my GI place an NJ tube for a temporary feeding option while waiting on surgery.  My GI couldn’t and so they got in touch with interventional radiology and they couldn’t do it either.  The GI said all he could do was send me back to the hospital to get admitted for nutrition again.  He also, sadly, informed me that the surgeon I had been counting on wouldn’t do anything different than the “temporary” options he was suggesting and actually never had the intention of doing the J tube surgery for me.  However, the surgeon's nurse called this morning saying I needed to go to the hospital for nutrition (where I already am) and said he was surprised that the GJ already came out.  She said he was still looking into other options.  So my questions right now are what does he mean “other options” and who do I believe......???  Anyhow, they just did an X-ray to confirm the precise whereabouts of the GJ.  They were talking trying to put it back in place (if out of place) which is useless.  Too much to go through for just a meer 24hrs and I’m going to end up right back here!  Hoping they'll just go ahead and place a J.  Last night I had about gotten to the miserable point....really achey, chilled, my heart was doing funky things (skipping beats and such) in strings instead of my normal every now and again every few days, etc.  When they did labs in the ER my potassium was very significantly low so they gave me some extra.  This morning my aches and just overall how I’m feeling is a bit better.  So now we just play the waiting game for results and doctor’s decisions.....  Please pray they will go ahead and find a good surgeon who is willing to just place a J for me so I don’t have to continue this whole fiasco!

 

Love you guys!  Thanks so much for sticking with me through thick and thin!  I will try my best to keep you up to date on the latest!

 

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

                                                           Allison

Journal entry by Allison Workman www.caringbridge.org/visit/allisonworkman

Help me, O Lord, the God of my salvation;

I have no hope, no refuge but in Thee;

Help me to make this perfect consecration,

In life or death Thine evermore to be.

 

 

Help me, O Lord, to keep my pledge unbroken;

Guard Thou my ways, my thoughts, my tongue, my heart;

Help me to trust the word which Thou hast spoken,

That from Thy paths my feet may ne’er depart.

 

Help me, O Lord, when sore temptations press me;

O lift the clouds that hide Thee from my sight;

Help me, O Lord, when anxious cares distress me,

To look beyond, where all is calm and bright.

 

 

Help me, O Lord, my strength is only weakness;

Thine, Thine the power by which alone I live;

Help me each day, to bear the cross with meekness,

Till Thou at last the promised crown shalt give.

— Frances J. Crosby —

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Hi there!

         I apologize for the delay.  After the tube procedure my brain was shot and updating did not get accomplished (obviously).

 

First of all...the procedure went very well.  No complications, they used the right tube, and I had an exceptional anesthesiologist who was actually aducated somewhat in mast cells.  They had to stretch my stoma slightly because they only had either a size smaller than the tube I had or a size larger, but not the exact size.  We opted to go up the size which made me a bit sore coming out of the procedure.  After a dose of IV Tylenol, I managed pretty well.  They started feedings Thursday evening at a super slow rate since it had been a little since I had any formula and we planned to slowly bump it up and get it to where I had better nutrition.  I was discharged home around 4pm Friday.  However, after arriving home things took an unfortunate turn.  I began feeling quite sick and just going downhill.  I decided to stop my feeding, give my system a break, and check the placement of my tube Saturday morning before starting feeds back.  As I strongly suspected, my hope of nutrition has vanished...my tube is already out of place and the J portion (which belongs in the intestine) is in my stomach.  Yes, I went through all of that for a measly average of 335 calories and 24hrs with a working tube.  Talk about frustrating and disheartening!  I miss my J tube immensely!!!! :(

 

I plan to call my GI first thing tomorrow morning to plead with him to go in endoscopically and place a temporary NJ tube (nasojejunal tube/feeding tube in the nose) for me to have something until J tube surgery can be accomplished.  I am not going to keep getting this one put back in if I’m only going to get less than 24hrs before it gets in the wrong place.  The difference is that the NJ goes up the nose and straight down through the stomach and into the jejunum whereas the GJ goes through a hole in your stomach, makes a loop around in your stomach and curves down into the intestines (literally looks like a giant S on X-ray).  With not having that loop and just going straight downwards, I never had trouble with the NJ misplacing itself.  I think this would be a very reasonable option for consistent nutrition until I can get a move on J tube surgery.

 

Thank you for your prayers!  I need them so desperately....my weary body, mind, and spirit are struggling to hang on.  I’m exhausted, malnurished, and feel like I’m on sinking sand to be honest.


I have chosen a special song that means a lot to me.  It is no telling where I would be today without my tender Shepherd leading me each step of the way.  It’s also a reminder that He cares and truly does what’s best for us even though all you can see is you being led through a raging storm.  Trust me, when you’re in one of those storms it seems like the Lord’s GPS is surely taking you the wrong way, but in all actuality He is taking you on the very best route that He knows is best for you.  That is a very hard thing to believe whilst in the midst of a terrible storm, but I know there will be a day when I see my sweet Savior face to face and I’ll know what these horrific storms were and why they happened.  For now I must trust that He truly knows best and is working in and through my broken body to make a perfect vessel for His glory.

Taking Life One Disappointment at a Time....

 

                                                         Allison

Journal entry by Allison Workman www.caringbridge.org/visit/allisonworkman

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

Journal entry by Allison Workman www.caringbridge.org/visit/allisonworkman

Hey!
   I am supposed to have an EMG sometime soon to see how my nerves are communicating with my muscles.  I'm not sure, at this point, when it will be.  I'm hoping soon to get KAFO (knee, ankle, foot orthotics) braces for my legs so I can walk!  Please pray that this process will get done soon!

Taking life one step at a time,
                                     Allison

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Allison’s Story

Site created on February 3, 2011

Visit my blog: http://allisonworkman.blogspot.com
See my full story: https://www.youtube.com/watch?v=bMQHTdQrSg8

This is my journey as a "fearfully and wonderfully made" girl, living with Mast Cell Activation Syndrome, Ehlers-Danlos Syndrome, Dystonia, and Autonomic Dysfunction. I have allergic type reactions to perfumes, fragrances, lotions, colognes, chemicals, cleaners, food (including the smell), sunshine, extreme heat/cold, altitude change, and much more. I often say I'm "allergic to life"! I have both a G and a J feeding tube to supply my nutrition and drain my stomach and a Hickman line through which I get IV Benadryl pumped continuously into my veins via a CADD pump to keep my severe reactions to a minimum. My life is full of doctor appointments, hospital admissions, procedures, medications, reactions, and pain. Life isn't easy, but I know my Lord is with me each step of the way. I know He has a purpose for this journey and a plan for my life.  I enjoy playing the trumpet, classical & Christmas music, photography, laughing, bright colors, fun socks, and zebra stripes.


"God didn't promise days without pain, laughter without sorrow, or sun without rain, but He did promise strength for the day, comfort for the tears, and light for the way. If God brings you to it, He will bring you through it." {unknown}

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Isaiah 26:4 
"Trust ye in the LORD for ever:  for in the LORD JEHOVAH is everlasting strength:"
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II Corinthians 12:9
"And he said unto me, My grace is sufficient for thee:  for my strength is made perfect in weakness.  Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me."
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Matthew 11:28
"Come unto me, all ye that labour and are heavy laden, and I will give you rest."
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Luke 18:27
"And he said, The things which are impossible with men are possible with God."

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