Changed Plans.....

"I don’t know about tomorrow, I just live from day to day.  I don’t borrow from its sunshine, for its skies may turn to gray.  I don’t worry o’er the future for I know what Jesus said;  And today I’ll walk beside Him, for He knows what lies ahead.

I don’t know about tomorrow, it may bring me poverty;  But the One who feeds the sparrow is the One who stands by me.  And the path that is my portion, it may be through flame or flood;  But His presence goes before me and I’m covered with His blood!

Many things about tomorrow I don’t seem to understand;  But I know who holds tomorrow, and I know Who holds my hand."

~ Ira F. Stanphill

Well, today didn't go as planned or as I had hoped.  My Hickman placement was blocked by the infectious disease doctor because, due to the fevers, they want my cultures that were drawn yesterday to be clear for at least 48hrs before placing that line.  The last thing we would want is for the line to be placed, find out that bacteria is the cause of the fevers, have to remove the line, and start all over.  I would be lying if I said I wasn't a bit disappointed, but I would rather be safe than very sorry!  The antibiotic level in my blood is still too high, and my kidney function is still off.  The infectious disease doctor is leaning towards the elevated antibiotic level being the source of the fevers since that is a possibility, but they wanted to make sure my cultures didn't come back positive again.  Once my body gets rid of the excess antibiotic, she plans to go ahead and put me on the IV antibiotic I normally go home on so as not to put stress on my kidneys right away.  Then I'll just remain on that for the rest of the time I need the antibiotics.  My biggest concern is the department that does the Hickman procedures said "Wednesday is Hickman day" which means that is the day they place all of the Hickman catheters.  I'm REALLY hoping that doesn't mean they won't make an exception for me and I'll have to wait another week to get it placed!! :(  I wanna go home before another week is up!!!

Good news is my J tube surgery is still on for tomorrow....well, as long as my blood cultures don't come back positive at the last minute and no other issues come up.  They are going to try to do it laparoscopically and the surgeon actually doesn't expect it to be super painful, so I hope he is right!  However, I am expecting a lot of pain, and then I can rejoice if it doesn't! ;)  I learned not to expect very little pain because you can very easily be VERY shocked!  The surgeon did research into my last tube surgery and found what they stitched with so he will use the same thing inside my intestines.  He said they'll probably come get me around noon to take me down for surgery.  He said if he finishes his prior responsibilities early, he may get me back to surgery earlier.  A friend who has had the same GJ tube issues as I have and has experienced the J tube told me how much she loved hers compared to the GJ which has helped my nerves greatly!  A few specific prayer requests with this...

*Fragrance free OR staff!!! (No, they aren't supposed to wear fragrance, but yes, they do.)  It is NOT   a good thing when my mast cells are already angry before anything starts!
*No vomiting after surgery.
*No reactions to the trauma, products used, etc.
*The Lord would give me peace as time draws near and I can block out some of the very scary things that have been drilled into my head about the J tube.
*No post operative infections!

Hopefully the next time you hear from me will be AFTER surgery is complete and everything has gone well!

Allison

Fevers & Cultures & Surgery...Oh My!

"Does Jesus care when my heart is pained too deeply for mirth or song?  As the burdens press, and the cares distress, and the way grows weary and long?

Does Jesus care when my way is dark with a nameless dread and fear?  As the daylight fades into deep night shades, does He care enough to be near?

O yes, He cares, I know He cares, His heart is touched with my grief;  When the days are weary, the long night dreary, I know my Savior cares."

~ Frank E. Graeff

Hi Friends!

Ezra chilling on top of me in my hospital bed

     Today marks exactly a week of being in the hospital.  After not having a fever for several days, I had a low grade fever last night.  It shook me up a bit and I'm still a bit uneasy about it.  The infectious disease doctor wasn't too concerned since it wasn't a high fever, but she repeated blood cultures to make sure the bacteria isn't resurfacing.  If nothing else, it'll at least give me peace of mind that it was just some weird happening and not the infection coming back.  And I now have another fever that's a bit higher than last night.  They let the antibiotic level in my blood get too high which has caused my kidney function labs to escalate a bit.  Fevers are a side effect of the antibiotic so I'm hoping that is what is causing the fevers.  Just PLEASE pray that the fevers won't hinder me getting the surgeries done (details below)!

SO, the plan from here.....
      I'm supposed to have a Hickman catheter placed under anesthesia tomorrow.  I would appreciate your prayers that things will go smoothly and I can avoid complications.  The Hickman catheter is placed in the chest and has a little less risk of infection than the Hohn that has been placed in my neck.  But, the catch is that the Hickman also has a greater risk of blood clots.  I'm not too thrilled about that little piece of info, but I know the Lord can protect me from getting clots if He sees fit.

The view from here :)

 And then, probably less than 24hrs later (depending on the exact time I'm taken down for the Hickman) I will, Lord willing,  have a J tube surgery on Thursday at 2:00.  Since my cultures have remained negative, I have been cleared for surgery.  Praise the Lord, I REALLY like my new surgeon!!  He's very compassionate, answered my many questions, very honest about what to expect, and doesn't mind working around my complex health issues.  He is going to use the same brand of tube that I do well with, and he is going to put in a tube with a bigger circumference so it won't get clogged as easily, AND, after 6 weeks, when the sutures in the intestines have desolved and the stoma (hole for tube) is healed/matured, he will inflate a small balloon to help secure it!  The first surgeon I saw from that office did NOT jive with me to say the least! ;)  He wanted to put in a red rubber J tube (latex of all things) and just suture it into the intestines without any other form of retention to keep the tube in because you never put a balloon in the intestines.  I did NOT feel comfortable with him.  Then, a few hours later, I saw the surgeon I was referred to and that is actually scheduled to perform the surgery...what a relief! :)  One major prayer request I have about this surgery is that I won't have the vomiting afterwards!  With the last 2 tube surgeries I have had violent vomiting and that is never fun, but put that together with an already butchered tummy and its beyond explanation!

You may not hear from me for a little while, depending on how my surgeries go.  I really appreciate your prayers!

 Taking Life One Surgery at a Time,
                                                   Allison

He Giveth More Grace...

"He giveth more grace when the burdens grow greater, He sendeth more strength when the labors increase;  To added afflictions He addeth His mercy, to multiplied trials, His multiplied peace.

When we have exhausted our store of endurance, when our strength has failed ere the day is half done, when we reach the end of our hoarded resources our Father’s full giving is only begun.

His love has no limits, His grace has no measure, His power no boundary known unto men;  For out of His infinite riches in Jesus He giveth, and giveth, and giveth again."

- Annie J. Flint

Hi Friends!

I have a lot to update on!  I saw a new GI on the 31st of January.  I REALLY like this doctor!  I had been struggling because the doctors that wanted me to get a J tube would pump up all the positives and not the negatives and the doctors that didn’t want me to get one would pump up all the negatives and not the positives.  I felt like “who do I believe???”!  I just ever so badly wanted to have a doctor that would recognize BOTH!!  Well, the Lord knew that and granted my desire!  This new GI recognizes that the J tube comes with some scary risks, yet he also knew I don’t have any other options.  He referred me to a different surgeon to get a J tube.  My consult with the surgeon was scheduled for last Wednesday, the 14th of this month... more details a little later.

My swollen face...
the chipmunk is my next of kin! ;)
Taken the day after my oral procedure.

I had my dental procedure at UNC Chapel Hill on the 6th.  I ended up having the tooth removed that had the failed root canal, 9 cavities filled, and my teeth cleaned.  My surgery took about 3 1/2 hours, and I woke up from anesthesia in some pretty rough pain.  It didn’t help that for some crazy reason I wasn’t expecting the procedure to cause much pain.  I was quite swollen for a little while, but that resolved within a few days.  The pain in my jaw where the tooth was removed went away within the next several days, and I thought I was good to go and on the tail end of recovery.  Then, all of the sudden, it started returning with renewed vigor.  I wasn’t sure why, and I saw online where a lot of times pain comes back on day 5-7.  I decided I’d just hang in there until Tuesday when I had a dentist visit.  I figured he could give me peace of mind that nothing was wrong.  I got very achey all over on Monday evening, so much so that I checked my temperature to make sure that wasn’t causing it.  I didn’t have a fever so I went to bed thinking it was probably just low potassium again from not getting nutrition.  I awoke early Tuesday morning to get ready to see the dentist.  My body aches were magnified greatly, I had chills, my eyes hurt, and I knew I had to have a fever because that’s the only thing that ever feels like that for me. I took my temp and I had a low grade fever at that time.  I proceeded to get ready for the dentist, but was going downhill pretty rapidly as my fever climbed to 101.5.  I’m normally around 96 or 97, so I’m miserable by the time I get to 99.  I begged my family just to let me go to my dentist appointment and not make me go to the ER...all to no avail, of course.  I really didn’t want to go because I knew if I went I would be admitted and I would miss my surgeon consult on Wednesday.  My sweet Daddy found me crying and instantly knelt down and prayed with me.  I can’t tell you how grateful I am for a daddy who loves both Jesus and me!  My temperature was bouncing around between a fever and what is considered normal.  I went into the ER and, of course, it ended up being the time when they considered my temperature to be normal.  I still felt awful.  They decided to do blood cultures to test for a blood infection and admit me to see if I spiked another fever while they waited for results of the cultures.  I was very bummed because I knew I would miss my surgeon consult the next day.  The doctor told me that if I didn’t spike a fever overnight that she would call in the surgeon so I could still see him.  Sure enough, a few hours later my temp spiked to 102.5 which took care of that idea.  They treated me with IV Tylenol for the fever and started me on high powered antibiotics that evening
(Tuesday the 13th).  By the next morning, my cultures had come back positive for a blood infection.  My personal opinion is that it came from my dental procedure given the fact that I just had it done the week before, haven’t had any recent procedures done on my central line, and there were no symptoms whatsoever at the line....however, infectious disease automatically goes for the line. :/  SO frustrating seeing as how I’m so low on veins anyway and each line removal could put my Benadryl pump and future in jeopardy.  Anyhow, let me get off my soapbox and continue!  They did an echocardiogram

Think I have enough lines??
Taken after they put the Midline in my arm
and IV in my hand, but before
they took the Hohn out of my neck.

to check up on my heart and make sure infection hadn't set in there, too.  Thank the Lord it was normal and the mass that they found in the right side of my heart when I had Sepsis is now gone!  I haven’t spiked a fever since Wednesday night/early Thursday morning.  They placed a midline in my left arm, an IV in my right hand, and removed my Hohn line late Thursday afternoon and repeated the blood cultures soon after.  The new cultures must be negative for 72hrs before they will put in a new line.  So as long as things goes well, I will probably be looking at getting a new line on Monday.  My hospitalist said since I’m not having any fevers, she was going to talk to the infectious disease doctor about whether or not I could be cleared to go ahead and call in surgery about the J tube.  We shall see!  I’m really hoping so seeing as how I’m not getting nutrition due to my tube being out of place and radiology saying it isn’t (they’re famous for that here!) so therefore they won’t fix it.  At least I’m getting IV fluids!

I’m probably looking at not getting out of here on home IV antibiotics until at least Tuesday and that would be if surgery doesn’t do anything.  If they decide to do J tube surgery, I highly doubt I would be out that soon!

No matter how hard this journey gets, I know my Lord will never give me more than He provides strength to bear.  There have been times just within the last several days where I longed for Jesus to take me Home with Him. I didn’t think I could withstand another minute of this life.  But the Lord has shown me His grace and given me strength to keep going.  I yearn to know the big picture of this life...what God was doing when He created my life, but I know whatever He is doing is good and perfect and He will tell me in His time.

Well, I think that sums it up for now.  I appreciate your prayers!

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

                                                                     Allison