Hi There!

Enjoying my visit with Vivian (my 2 year old niece).
She did all of this on her own... she climbed up,
positioned my pillow just right on my stomach, pulled
my cover down, plopped on my lap, covered up with
me, and we watched a movie on my phone. :)

      I hope you had a wonderful Thanksgiving with your family yesterday!  I actually had a lot better of a Thanksgiving than I originally thought I would...got to watch the Macy's parade and then Daddy and one of my sisters came up and spent the afternoon and evening with me while my mom and sister (that had been staying with me) went home for a bit.  So I spent nearly all of that time in stitches from Daddy goofing off!  By last night I was desperately paying for it with pain, but it was so worth it! ;)  Oh, and they brought me a homemade pumpkin pie to enjoy, and that I did!  And then, to top off the night, when my mom and sister came back, they brought my precious Vivian (2 year old niece) to see me.  We were both thrilled to see each other and had a very fun visit......until it was time to go bye bye.  Then there were lots of tears and begging "Assin hold you, hold you"... talk about heartbreaking!  Made me want to just scoop her up and snuggle with her all night!  She was telling "Bah bah" (Grandpa) bye bye and saying "I go seep!"...her way of saying she was going to stay with me.

     I got some more detailed information when I saw the doctors this morning.  The infectious disease (ID) doctor said that the specific bacteria that came back is actually a bacteria associated with line infections.  They had originally thought the infection could be stemming from the surgery they had recently done for the J tube, but it is actually from my Hickman.  SO, with that said, they are going to have to remove my Hickman.  They also are going to have to change my antibiotic again because the bacteria responds very poorly to the one I'm currently on.  It helped me feel a bit better and kept my fevers at bay, but apparently it won't kill it off completely and you don't want to leave ANY infection behind in the bloodstream because it comes back with a vengeance and is even harder to treat.

The plan:

• Remove my Hickman since they got 2 IVs put in.  They plan to give me pain medicine and try to remove it.  The line has a cuff under my skin that the skin grows on to.  It has been there for 2 years and they have to separate it away in order to remove the line.  They are hoping doing pain medicine right beforehand will make it to where I can tolerate them removing it since I can't have the local anesthetics they normally use to numb the area prior to removal.  SO, as long as I can handle it, they will remove the line today.  If I can't handle it then they will have to schedule for a later time under anesthesia.
• Change my antibiotic to one that will be more successful in killing off this bacteria.
• Daily taking new blood cultures until they come back negative.
• Placing a new Hickman (under anesthesia) once the cultures are negative for at least 48hrs, but ideally 72hrs depending on how hard it is to get rid of the infection.
• Tentatively be discharged on the IV antibiotic once I have my new line.  I will be on the antibiotic for 2 weeks from the time my cultures come back negative.

The ID doctor said the very earliest I will get a new Hickman placed will be Monday or Tuesday, but it could very well be longer.  So, with all that said, I won't be getting out of here for a while.

Taking Life One Day at a Time,
                                          Allison

Mystery Solved

Happy Thanksgiving everyone!

      I got some answers super early this morning...  my blood cultures came back positive.  I have a blood infection.  I’m in for the long haul.  This is a different kind of blood infection than I’ve ever had.  They are not sure where it came from.  It is not from my Hickman.  I seriously wonder if it came from my gut surgery when they placed this new J tube.   But we don’t know much for definite right now.  They’re having to use a different antibiotic because my other safe ones won’t kill this bacteria.  Thankfully I’m not reacting to it so now I have another antibiotic to add to my safe med list!  I’m supposed to see the infectious disease doctor and that is when I will find out whether or not they will remove my Hickman.  What happens is the bacteria in the bloodstream attaches to foreign bodies in the vein which can lead to infection going to the heart.  The doctor said she knows I want to go home, but that won’t be happening until they get everything sorted out. :(

It’s crazy how I’ve slept all night and probably at least half of the day these last couple days and I’m still so exhausted!  Thankfully I haven’t spiked any fevers so far today so head and eye pain is minimal when present however I do still hurt pretty bad everywhere else.  Probably all related to the infection.  I’m beginning to get another headache so I’m going to close now, but I’ll try to keep y’all updated as best as I can.

I hope y’all have a wonderful Thanksgiving and I am so thankful for your continued prayers!
Allison

In {Every Thing} Give Thanks

I Thessalonians 5:18

“In every thing give thanks: for this is the will of God in Christ Jesus concerning you.”

Hi Friends!

     I think I can honestly say this has been the hardest Thanksgiving season for me.  Honestly, I don’t feel like being grateful.  No, that doesn’t mean I shouldn’t be grateful...the Bible doesn’t say in some things give thanks...it says in everything.  It is neat how the Lord orchestrates things.  I have a light box in my bedroom that I can customize to say whatever I want and when I got home from the hospital after J tube surgery, I thought I would get in the thanksgiving spirit and change it to say “In everything give thanks”.....I didn’t realize just what impact that would have nearly 2 weeks later.  Monday afternoon I began not feeling so great.  My new J tube started hurting a bit and I started getting really achy.  By Monday evening I was feeling rather crummy and the symptoms began feeling all too familiar.  I told my mom that I recognized this feeling and I knew I had to be dealing with a fever.  I checked my temp and sure enough, I had a low grade fever.  For some reason when my temp gets in the 99s I really feel it and I’m miserable!  I didn’t sleep well throughout the night and I checked it again around 2 or 3am and it got up to 100.8.  Fairly early Tuesday morning I decided to take my IV Tylenol to try to knock it out.  It had been a long day Monday so I was hoping that maybe it was just a matter of too many mast cell triggers that had just made my system angry.  I felt fairly good throughout the day....until the Tylenol wore off.  Yesterday evening (Tuesday) my temp reached 102.8 and it was determined that, against my wishes, I needed to go to the ER.  When you have an indwelling central line you’re supposed to head to the ER once your temperature reaches 100.4 due to infection risks.  I put it off as long as possible because I wanted nothing more than to have a good Thanksgiving AT HOME with my family and I had no desire to return so soon after finally getting home from the hospital where I had just spent nearly 2 weeks of my life!  It made it even harder to leave because my little 2 year old niece has been staying with us since Saturday and when she saw me getting ready to leave she broke into tears, ran to me saying “Assin, hold you, hold you!”, and gave me a big hug.  Oh, what I would’ve given not to have to leave her! :(

As of right now we still have no clue what’s going on.  By the time I got to the ER last night I had a very peculiar rash on my arms and chest.  They did blood cultures, chest X-rays, MRSA test,

The weird rash I’ve been experiencing.

respiratory panel (flu, etc), and abdominal CT scan.  The CT came back good so no complications from my recent J tube surgery.  I was really concerned about my new J tube because I wasn’t too far out from surgery, the tube had started hurting again, and I had this mysterious fever.  I was very relieved when the surgeons came in to examine my tube and belly and told me the CT looked good.  So that’s one major concern ruled out.  I am fairly sure I do NOT have the flu.  I have no cough, sinus symptoms, or vomiting/diarrhea and I don’t feel sick in that way... every blessed time I’ve had bacteremia or sepsis they ALWAYS think I must have the flu and test me.  And it has always come back negative.  But I humor them and let them test me.  No harm done! :)  The next big thing as far as I’m concerned is waiting for cultures to come back.  They’re in sections.  They check them immediately and then at 24hrs, 48hrs, and 72 hours and then if they’re still negative at that point then you’re cleared of any bacterial blood infection.  That’s the biggest concern because of me having the Hickman which goes straight into my bloodstream.  That puts you at a high risk of infection.  There are two things that are odd this time...I keep getting really sweaty and I’ve had a strange rash.  So I don’t know if it’s possible I may actually have some weird virus this time instead of an infection?  Who knows?!  I guess we’ll just have to wait on tests to come back.

So it looks like I will be spending at least part of Thanksgiving in the hospital.  I haven’t been told any plan as far as how long they may keep me.  I would think it depends on test results, but I really don’t know.  I would be lying if I said I’m not heartbroken and disappointed with life right now.

Silly Ezra on my pillow that he thinks is his.
As the pillow says...no drama for this llama...
well, until he doesn’t get “his” pillow! ;)

It’s hard.  The Lord knew this was going to happen and has it all in His plan.  Last night I was pitching spiritual temper tantrums and was NOT at all grateful for any of this.  I didn’t want to give thanks, I didn’t feel like it...and I still don’t, but I can choose to be grateful.  No, my Thanksgiving isn’t what I want, but I have so much to be grateful for...... a working tube, a new formula that works great, a family who ever so sweetly postponed their Thanksgiving plans for me, a precious service dog who deals with so much to take care of me and be my faithful companion, the Lord Who does what’s best for me no matter how much I kick and scream about it, the many pumps and lines that keep me alive and fed.....and the list goes on.

And I’m so very thankful for your prayers on my behalf!

Allison

Psalm 138

”I will praise thee with my whole heart: before the gods will I sing praise unto thee.

I will worship toward thy holy temple, and praise thy name for thy lovingkindness and for thy truth: for thou hast magnified thy word above all thy name.

In the day when I cried thou answeredst me, and strengthenedst me with strength in my soul.

All the kings of the earth shall praise thee, O Lord, when they hear the words of thy mouth.

Yea, they shall sing in the ways of the Lord: for great is the glory of the Lord.

Though the Lord be high, yet hath he respect unto the lowly: but the proud he knoweth afar off.

Though I walk in the midst of trouble, thou wilt revive me: thou shalt stretch forth thine hand against the wrath of mine enemies, and thy right hand shall save me.

The Lord will perfect that which concerneth me: thy mercy, O Lord, endureth for ever: forsake not the works of thine own hands.“

Home & All The Details + AMAZING News!

Hello There!

      I'm back with all the details from my surgery, hospital stay, and recovery.......plus some amazing news!  So....consider yourself warned....this could be a fairly lengthy post! :)

Where to begin.....
      As you already know, if you've been keeping up with my recent updates, I was admitted to the hospital on Monday, November 4th with dehydration and malnutrition due to my J tube having complication and having to be removed (thus removing my only avenue of nutrition).

I had surgery to place a J tube on Friday, November 8th.  They were originally hoping to reopen my previous stoma (hole for tube) and place the J tube, but due to complications with that stoma, they had to make a new site.  As some may remember, a few weeks after my first J tube surgery, I bent over and felt like someone had kicked me in the gut....  Well, that was most likely some of the stitches snapping that were holding the intestine to the abdominal wall.  Unbeknownst to me, this placed me in quite a bit of danger.  This "malfunction" can allow the J tube to twist, causing life threatening complications.  No one seemed to know this until they went in to place this new tube and found how messed up it was.  So, they tacked this one farther, going all the way through to the skin, and I am determined to follow rules no matter how horribly difficult to avoid causing the same complications.  Those rules?....no lifting more than 15lbs, gentle bending, and limited exertion for 8 weeks post op!  Yeah, that is torture when you have little nieces coming in for the holidays!  The littlest is right at 15lbs now so I can still carry her, but the adorable nearly 3 year old is way over my limit and it kills this auntie's heart when she comes up with outstretched arms saying "hold you? hold you?" wanting me to pick her up! :'(  Probably by Christmas the little 5 month old will be over my limit, too.  But I do NOT want to mess this tube up after all I've been through the past couple weeks!!

When I came out from surgery, I was itching terribly!  I kept telling my mom and sister that I was just SO itchy....upon investigation, they realized I was covered in hives.  Both myself and the hospital made a mistake.  I react to the hospital linens (probably what they launder everything in) so I always bring my own sheets, pillow cases, covers, gowns, towels, etc.  I made the mistake of putting a white sheet on my bed and the hospital OR staff didn't realize the sheet was mine.  So they did as they always do...they switched my bed out and put me on a fresh one after surgery.  Only the fresh one was the hospital's sheets so I was breaking out in hives from being on the wrong sheets.  NOT fun because they had to roll me to change my sheets back to some of my own.  If you've ever had gut surgery you will know just how much you do NOT want to even be touched after surgery let alone rolled around!  Then they gave me a little milk to drink after I had gotten settled in with the right bedding.  Only I fell back asleep from the combination of pain meds and leftover anesthesia, pouring it all down my front which meant having to get my gown changed.  By this time I was bawling my eyes out because I just wanted left alone.  But, after all was settled and done I wasn't much worse for the wear.

Fast forward to a couple days later...  There is this one brand of chicken broth I can tolerate (it comes straight back out via my stomach drain like everything else).  My sister went to Whole Foods but all they had in stock was the low sodium kind.  I figured I would just add some salt.  I poured some, added salt only to realize it still needed more, so I added even more salt.  I then tasted it and it was way too salty so I went to shake the broth before adding more only I forgot I hadn't put the lid back on the broth....yup, I showered myself in chicken broth!  My hair was stuck together like lard and my eyelashes were dripping!  I must say, chicken broth never was a good hair product and definitely smells much different when you are wearing it!  My sister happened to be on the phone with a nurse when it happened and couldn't talk because she was laughing so hard!  We got a BIG laugh which wasn't the best idea in the world for me at the time!  On top of laughing so hard with a very painful gut, I had to get my hair washed which ended in tears for a while, but I felt much better after some pain relief!  It does make for a very funny story now, though, and will make a fun memory when remembering this whole ordeal in the future! ;)

I was in the hospital until Friday, November 15th.  I had originally been told that my feeding rate had to be at 65ml/hr in order for me to go home, however, they changed it the next day to 100ml!  Talk about crushing someone!  I had worked so hard and had it to 65 by the next morning only to be told I still couldn't go home because it had to be at 100.  I was thankful that they decided that I could go home Friday afternoon as long as I was continuing to up my rate since they could see I was no longer malnourished.

The first couple days at home were rough just with having the bumpy ride home, moving around more, and not having the access to much pain relief, but as time passed, things started improving.  As of now, my incisions are healed and free of pain.  My tube site is still rather tender and is my main source of pain.  I'm still having some spasming in the muscle they had to put the tube and stitches through, but they are slowly improving and becoming fewer and farther between as the muscle gets used to having those things there.  Healing from J tube surgery is a very prolonged process.  It may sound strange, but I'm grateful that I have been through it before so at least I know what to expect and I can keep encouraged knowing even though it takes a while, it gets better and is worth the struggle!

Now.....for the AMAZING news that I mentioned above.........

Nap time snuggles with my little niece, Valerie :)

I officially have a new formula that I tolerate!!!!  It is called Real Food Blends and is actually JUST real food pureed into a super smooth and thin formula specifically for tube feeding!  I have to dilute it some so as not to clog my J tube and add salt to get the appropriate level of sodium for my body, but I am SO grateful that the Lord provided some good nutritionists in the hospital while I was inpatient who actually searched and found something for me to try....and it WORKED!  I'm on my second day and not only have I not had even the slightest hint of a reaction to it (I was miserable within the first 2 hours with the previous formulas that I reacted to), but I'm actually feeling better!

I'm not completely out of the woods yet.  I still have some pain from surgery, limitation for a while longer due to the new tube, have to build my formula intake to the amount I need, and easily overdo it, but I am so, so, so grateful for the leaps and bounds I've made in the right direction!  I can't thank you enough for your many prayers on my behalf...He is listening and I am seeing lots of "yes" answers!

My struggles that could use some prayer right now...
     Feeling better makes it very easy to over do it!  I get carried away with doing everything I've wanted to do for a while now and I forget to pace myself and pay attention to what my body is trying to tell me which makes for misery when everything comes crashing down on me all at once.

   My body has rediscovered the desire to eat.  Don't get me wrong... I am SO grateful not to be constantly nauseated and miserable (and I have no desire to return)!  However, it is difficult when your brain greatly desires the pleasure of eating, but it's impossible for your body to accomplish the task!  Especially with Thanksgiving right around the corner.  I have been on a liquids diet for a while now since it drains the fastest due to the state my stomach has been in.  It is going to be VERY hard at Thanksgiving to restrict myself to only foods that will drain.  My stomach is worse this year than it was last year so anything that won't drain is pretty destined to cause vomiting.  Honestly, I probably shouldn't do any of it.  I have decided it only comes once a year so I will let myself have some, but I will definitely be forced to leave out some favorites.  It's pretty guaranteed that I will suffer consequences, yes, but I have deemed it worth it as long as I use a lot of self control in my choices....I'm afraid I would no longer think it was worth it if my Thanksgiving ended with vomiting!

Please continue to pray as my journey continues!  I'm thrilled beyond words to get to write this update....there is nothing quite like getting to share such exciting news! :)

Taking Life One Happy Update at a Time...
                                                             Allison

I'm Still Alive! ;)

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

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

Good morning!  I look a little dazed in this
pic, but you’ll just have to excuse
me... I just had pain medication.

My sweet Roo Bug (Ezra) snuggled
up to me after surgery.

Just a quick update.... they plan to have me in the OR by 8.  I’m already down getting registered.  I really appreciate your prayers!

Allison

Answered Prayers (Surgery Scheduled)

"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

Hospital Day #2....

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!

If ya can’t eat it....wear it! :)

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

Dear prayer warriors....

The picture says it all...MCAS Life!

     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

The Disappointments Of Life

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 —

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

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