Hi Friends!

Merry Christmas and Happy New Year!

It has been months since I last updated and so much has happened.  I struggle because, when life is great, I just forget updating and live, but then when things get really hard, I want to wait for something great to happen that I can write about.........causing a vicious cycle which I have to force  myself to break.  SO, I figured while I'm sitting here for 4 hours, doing my infusion (more on that later), I would make an effort to catch up.

Last time I wrote, I was having issues with the Mic-Key Button G tube draining... That persisted and I had to switch back to a PEG style tube which works much better!  Thankfully, I got to switch to a Mic-Key Button J tube, though, so that was exciting!  It is SO much more comfortable since my tube was placed where it lands right under my waistband!

These last few months have been filled with many joyful moments as well as the sad times.  We lost one of our family dogs and our beloved Papaw in October.  But, in that same month, we received the happy news that another little niece/nephew is on the way.  

Since my last update, the IV benadryl shortage took a huge turn for the worse.  One of my sisters lost her continuous pump due to no medication available.  Thankfully, we were finally able to find a place to compound it for her.  I've come VERY close to being out of bolus doses, but haven't had to bump my pump down at all.  Hoping this shortage ends soon.  We know Who controls tomorrow and we can definitely trust Him!

I was put on a new medication in yet another attempt to control my MCAS, but it ended up wreaking havoc on my body.  It always made me very sleepy (which could be a rare side effect, but was probably part of the reaction) and it just went downhill from there.  The last straw was when I began having extreme nausea and vomiting.  It was almost as though anytime I had anything in my stomach, it would quit working.    It was absolute misery and couldn't figure out what on earth was going on!  I then started to put two and two together with timing and when my doctor had me stop the medication, it wasn't long and I was MUCH better, thankfully!

Since my last update, my cardiologist has started me on twice weekly saline infusions.  So on Mondays and Thursdays I get a bag of IV fluids over a 4 hour period.  This has helped my dysautonomia drastically!  I have energy, I can stand for more than 20 seconds without feeling as though I will faint any second, I can do more in a day....it has just been wonderful!

I began wound care for my stoma that wouldn't close and, after several weeks of packing it, my stoma is HEALED!!!!!!  Yup, I was discharged with a closed stoma and didn't have to have it surgically closed!  That was one exciting day for sure! :)

We had a very good Thanksgiving and Christmas.  A lot of fun family time together.  The Lord has blessed me so much in my life.  I don't always find it easy to be grateful to put it bluntly.  After all, what on earth is there to be thankful for when you suffer each day with limitations and sometimes absolute misery?...  When there is a whole world right at your fingertips, yet you don't dare barely touch it for fear of your life...  When so much has been torn away from you, most likely never to return.  But there is a command in the Bible to be thankful in everything...yes, that includes MCAS.  That includes the death of my very dear friend, Hannah, whom I miss so very much, especially around this time of year.  I can be thankful because this is perfect!  God's plan for my life is nothing less than perfect because He never makes a mistake.  My life isn't a catastrophe...it is perfectly planned out by the One who is perfect.  There are so many special people I have come in contact with, but wouldn't have if it weren't for this disease I live with.  I'm thankful that the Lord has me (and my family) in the palm of His hand, surrounded by His loving protection.  I find comfort in that thought.  Nothing happens in this life that He doesn't know about.

Hope everyone had a great Thanksgiving and Christmas, also!

Taking Life One Day at a Time...
                                             Allison

Hi there!

    So my tube change last Tuesday went very well!  The burning pain at the tube site is gone, most of the granulation tissue has fallen off, and my hickman is working wonderfully again!  The only negative is that the Mic-Key button tube isn’t draining my stomach very well.  I’m in the process of shuffling around the foods I’m eating to see what will drain and what won’t.  I’m really, really hoping I can figure out an avenue to make this tube work cuz it is sooooo much more comfy than a regular PEG style tube!  Only problem is it doesn’t always even drain stomach fluid and I’m ending up with a lot more bouts of nausea and extreme reflux.  If I don’t soon find a way to get this one working better, I will probably have to give up and go for a swap to a less preferred tube.  BUT it will be a simple switch-a-roo if I do end up having to get it changed because it’s just a deflatable balloon inside holding it in.  We shall see whether or not this stubborn little thing starts working in the near future!  I did learn that getting my old stoma surgically closed is an optional thing and isn’t a requirement if it doesn’t close on its own (which it hasn’t so far).  My GI is still in hopes that it is just taking a bit longer because of the condition it was in before we removed the tube, but it isn’t a big deal if it doesn’t close.  It’s a matter of when (or if) I get to the point of “I can’t deal with this anymore” and want it closed.  Right now it’s just a nuisance and I (and my GI) don’t want to go the surgery route.  Maybe one day I’ll get to where I’m just totally fed up with the messy shirts and embarrassing noises, but for now, I’d rather have this than get the surgery to fix it.  Still hoping it’ll close on its own though!

Our NY trip went fairly well.  The appointments were good...got some useful pointers and some more ideas to try for treatment.  We got to do a little site seeing before we traveled back home.  Thursday evening we got to go on the Staten Island Ferry and see the Statue of Liberty in addition to more of the NY buildings!  It was definitely a gamble with MCAS, but was worth any grief it caused to see those things that I’ve always wanted to see!  We left Friday morning and got home around 1am on Saturday.  I didn’t have too terrible of a 

time out of my MCAS on the trip but after getting home, the traveling, and everything I did, came back to haunt me. :/  I’ve been a little achy, but the main issue has been with my dysautonomia  (heart rate and blood pressure).  My heart rate keeps skyrocketing and my blood pressure keeps plummeting, especially when I try to get up.  My home health nurse came this afternoon to check things out and confirmed the issues so my doctor is getting me some IV fluids ordered for home.  Usually those help a good bit...hopefully they work their magic again this time!  My nurse took my STATS sitting and then had me stand and, within seconds, my blood pressure had dropped quite low and my pulse was picking up speed.  I think my body has just had it with the trip plus my feeding pump for my tube feedings has been acting up and not feeding me correctly, so I’m not getting the whole amount of formula I’m supposed to get, either.  Hoping to get that straightened out soon, too!

Praise the Lord, the pharmacy that mixes my IV diphenhydramine (Benadryl) bags got a big shipment of my Benadryl and said they’ll easily make it through the shortage!  So, sooo happy to hear that news, and I’m very glad they won’t have to take from my bolus supplies to be able to make it through!

Thank you so much to those who have prayed and continue to pray for me and my family!  It really means a lot to me!  And I apologize for not getting this written sooner, but it has just been a rough recovery from the trip, making it a bit difficult to get an update out.

Taking Life One Bag of Fluid at a Time....

Allison
{I’m very sorry about how sporadic the pictures are and the fact that they don’t have any discriptions...my phone is not cooperating with blogspot so if you want to see the discriptions for the photos you can do so HERE}

Howdy!

     I feel like I'm constantly apologizing for the lack of updating, so I'll just skip that step this time! ;)

I had a bit of a rough spot soon after I got home from the hospital after my latest G tube placement.  I struggled with keeping my glucose stable which is one of my symptoms of a reaction and benadryl normally brings it back up or down, whichever the case may be.  They started me on MiraLax while I was inpatient and then had me continue after discharge.....I finally put two and two together, and upon discussing it with my doctor, decided to stop it to see what happened.  Sure enough, my glucose instability straightened out once the MiraLax was out of my system.  Definitely not doing that again!  Soon after the procedure, my Hickman line in my chest began giving me a fit.  It has been having issues with giving blood return and such whereas it was working beautifully from the time I first got it to right after the G tube procedure.  This is a signal for a reaction to something, as well, because it seems when my mast cells get mad, they automatically go for the "foreign objects" in my body, thus causing malfunctioning lines.  Since coming home, I've also had some breakdown, burning pain, and granulation at my new tube site.  All of this makes me lean more towards the idea that I may be reacting to this new tube.  It is a totally different brand tube than I've ever had, and it wouldn't be far fetched for this body of mine.  I've had a reaction to a tube before which caused my stomach to way overproduce bile and my liver counts to go up.  I was literally draining 7 to 9 liters of bile a day from my stomach.  Once all possibilities (blockages, etc) were ruled out, we opted to take the leap and change the tube to see if maybe I was reacting to the tube..... sure enough, once the tube was changed everything returned to its normal state.  So yeah, it wouldn't be out of the ordinary for my body to be rejecting this new tube in this way.  The good news...I have less than 24hrs to go until I get my tube changed to a low profile tube that I know my body does well with.  I have an endoscopy scheduled tomorrow afternoon at 1:30 (arrive at 12:30) to remove this tube and replace it with the new one.  The G tube I have currently has a mushroom type disc holding it in instead of a deflatable balloon and normal procedure is to yank it out with 15lbs of force (totally serious!!) but I have a connective tissue disorder that makes my joints extra loose and the jolt it obviously sends through the body (when they yank the tube) makes my joints come out of place, causing me to be laid up for at least five days, if not longer.  I've only had 1 disc tube yanked out and it was horrible....I could hardly move.  So my GI is going in endoscopically and removing it from the inside instead of yanking it through.  That way I won't have the horrible aftermath.

Now to the matter of my old stoma (hole that housed my old G tube for about 3yrs).... it was closed for the initial placement of the new tube.  However, it has since been super annoying!!  It acts like its closed and then, suddenly, stomach content comes spewing out or sometimes just air which is loud and totally embarrassing because there is no way to control it!  And I'm talking loud...I was watching a movie with my family and they heard it over the noise of the movie!  The nitty gritty of this situation is if it doesn't soon seal off and stay that way, I will have to have it surgically closed.  Technically it should be closed on its own within 24hrs of removing the tube, and it has been about a month and a half at least since I removed mine!  I'm wondering if possibly it could be part of the reaction to this new tube since it was sealed off for him to place the new one and then opened back up.  I have healing issues due to MCAS, and I can't help but wonder if it could've reopened because of the new tube flaring things up.  We'll see how it heals once I get this tube swapped out for a tube I know my body does well with.

Lord willing, I will be home from the hospital tomorrow evening after the tube change and just in time to load up the car so we can leave for New York early Wednesday morning.  Two of my sisters and I have appointments with our mast cell specialist who has moved from MN to NY.  Hey, an 11hr drive is better than a 24hr drive...plus I've never been to NY, so that'll be kinda neat.  The plan is to travel there on Wednesday, have appointments on Thursday morning, maybe do a little looking around for the rest of Thursday, and then travel home on Friday.  A quick, and no doubt tiring trip, so we would appreciate your prayers!

We were just informed the other day about a national shortage of IV diphenhydramine (benadryl).  This is a pretty scary thing because this medicine is a lifeline for me (and 2 of my sisters).  I'm on a continuous pump (as well as the 2 sisters) to keep me stable and alive.  The pharmacy is in a pinch and can't get any from anywhere to do our infusion bags.  It will most likely soon be to where they have to take back some of my bolus doses in order to mix my bags for the continuous pump.  They expect this shortage to last until mid September.  Please pray that the Lord will keep us safe and intervene if He sees fit!  This is a very serious issue for my family along with many, many other MCAS patients!

I can't believe my precious Medical Alert Dog, Ezra will be five on the 8th of this month!  Time has sure flown by.  It just doesn't seem possible.  The Lord sure did give me a huge blessing that I could never deserve when He gave me Ezra!  My Ezra Hudson is so much more than a dog...a caregiver, psychologist, companion, physical therapist (he loves to play tug!), comedian, and, most of all, the most patient, loving friend in the world!  He has changed my life in so many ways.  Its only by God's grace that my precious Little Man survived being attacked by a pit bull mastiff!  I could've easily lost him that day, but Jesus knew I couldn't live without him!  I love you, Roo Bug, and I hope you have the best birthday ever!  {View Ezra's life story HERE}

Prayer requests

• Tube change will go smoothly
• Old stoma will decide to go ahead and seal off soon
• Safe travels for our NY trip
• Safety and provision through the diphenhydramine shortage

Thank you so much for your faithful prayers and encouragement!

Taking Life One Tube at a Time,

                                             Allison

Hi!

    Just letting you know I was discharged from the hospital yesterday afternoon (8/3) and I’m now safely home.  The pain is improving slowly but surely.  I really appreciate your prayers!  The new G tube is working great so far and we’re hoping things will continue to improve.

Allison

Update on Allison

This is Christina (Allison’s sister) updating for Allison. Her endoscopy and tube placement went really well on Tuesday. However, she is struggling with pain control right now. That is mostly due to the fact that she cannot have local anesthetics. Generally during a procedure of this sort, the doctor will inject lidocaine at the site so the recovery is easier. So we're just taking it day by day until she is able to tolerate the pain and go home with only IV Tylenol. Thank you so much for praying!

An Update Far Overdue...

Hi Friends!

My adorable Bella

    It has been a very long time since I have updated and I apologize for leaving y'all wondering.  I know I should've updated sooner, but I had some issues going on and wanted so desperately to have a wonderful update with a victorious ending... but it has become clear I must write an update that doesn't have the ending I was really hoping for.  I want to start off with some really happy news before I get into the not-so-great stuff.  SO, without further ado.....

I've actually gotten to go to church multiple times!  Thanks to our church family who have cut down on the perfumes and oils they wear.  It means the world to me when people sacrifice and go out of their way so I can go to church!  I'm so excited to actually be able to get out somewhere besides doctors appointments and get to fellowship with God's people!

Yeast and acid burn around my G tube.

Now...for the dreaded news.  I've been having severe, deep G tube pain for quite some time now.  I went to the GI and he saw a little redness and inflammation at the site so he told me it was the dressing I was putting on it.  He said to stop putting anything under the bumper of the tube (disc on the outside that adjusts the tightness of the tube) and start putting a barrier cream on to protect the skin.  I knew that wasn't the case, but figured if I wanted help I needed to follow all directions.  I complied and things went downhill very fast.  I got a horrible case of yeast because of the moisture so I was told to stop the cream.  I then got acid burn from the stomach acid leakage that wasn't being prevented by the barrier cream because I had to discontinue it.  So I had the acid burn on top of the horrid yeast that hadn't healed PLUS the deep pain I had been having that was only worsening.  I was then given a nystatin powder to apply to the tube side to try to heal the yeast.  Soon thereafter I developed multiple pressure ulcers from the bumper because I didn't have any dressing underneath to keep it from digging into my stomach.  My GI felt that the yeast wasn't improving fast enough and was concerned it may have turn into a bacterial infection that caused the ulcers so he sent me to infectious disease to have it examined.  That doctor confirmed it was a bad case of yeast and the ulcers were actually pressure ulcers and not ulcering cellulitis.  My GI finally realized that it was indeed best to keep the dressing under the bumper.  With the nystatin powder and keeping the site dry with the dressing, the outside issues (that were caused by the effort to fix the inside) cleared up and healed.  However, the inside pain was still steadily worsening and getting to the unbearable point.  He then deemed it nerve pain and said my only options were to either deal with it, take gabapentin, or have surgery to move the tube.  I didn't like any of those options and decided to make another appointment with my GI to see if he could do any more testing to make sure there wasn't something else going on.  Well, while I was waiting for that appointment time, the pain reached the excruciating point, my tube site began bleeding, and I was having discharge of tissue around the tube.  When I went in to see my GI, he examined the tube and saw what the problem was all along.  My stoma (hole for tube) was breaking down and I had ulcers all throughout the stoma.  Apparently it was ulcers causing the pain inside and they just worked their way through my stoma until they could actually be seen from the outside.  The bleeding and tissue discharge was coming from the ulcers and tissue breakdown.  We tried everything my GI and family could think of and it became obvious that my stoma was beyond salvaging.  My GI told me that getting a new one placed was really my only option to fix the issue, but told me to take my time to think about it and I knew their number when I was ready.  I made the dreaded phone call on Friday morning to tell him I was ready to have it replaced.  He called me back that evening and told me to pull my tube out on Saturday morning so the stoma can close by the time he wants me to go in on Tuesday (10:30am) to have a new hole made.  He's going to try to place it endoscopically so I don't have to be opened up in surgery which would mean more incisions to heal and just a harder recovery overall.  It was really hard to accept another tube surgery.  I had my heart set on my J tube surgery being my final tube surgery....I mean, after all, 4 tube surgeries are enough, right?!  My GI said that stomas can last a very long time, but sometimes they breakdown and tubes have to be redone in a different place.  My sister wanted me to tell my GI there were only so many times you could fail an audition for the Pillsbury Doughboy. ;)  I pulled my tube on Saturday morning which was NOT as easy as it could've been.  I had to pull a tube that had a malfunctioned balloon that wouldn't deflate all the way.  Yeah, OUCH is an understatement!  Took me 2 good yanks to get it out, but I did it! :)  I am now greatly missing my G tube to drain.  Lots of Zofran and Zantac to try to keep the nausea and reflux bearable.  He was sure to tell me not to eat anything from the time I pulled my tube to the time I get the new tube placed because he has to open the esophagus and if I had a stomach full of food (because I couldn't drain it) sitting there, it would flow right up into my trachea, causing me to aspirate.  It's not very hard not to eat right now seeing as how nausea has kinda overtaken my appetite! ;)  One big prayer request... Please pray that this hole will seal up by Tuesday!  The ulcers can slow the healing down and I'm at more than 24hrs since I pulled my tube and its still leaking because it isn't completely closed.  It HAS to be closed for my GI to place a new tube because he has to pump my stomach full of air and he can't accomplish that if there is a hole in my stomach.  So needless to say, I have to reschedule if it doesn't close up on time.  I REALLY do NOT want to have to do that... 3 1/2 days with no draining is hard enough as it is and who knows how long it would take to get me back in the schedule.  Thanks in advance for your prayers!

I know the Lord has a purpose for these trials and, even though it is far from easy, I know He cares about me.  He is doing what is truly best.  He is always good.  Things He allows in my life don't always (actually rarely) makes sense to me, but that doesn't change the fact that He is ALWAYS good!  He loves me.  He knows how all this is going to work out.  He knew that my stoma wouldn't heal and I would have to have another tube surgery.  He knew this would be hard and how heartbroken I would be so He provided courage, strength, and encouragement right when I needed it. He weeps with me and feels my pain.  His heart breaks with mine.  I don't understand why things have turned out the way they have, but I know He will take excellent care of me!  If you are going through a rough patch right now just know the Lord does love you and has a perfect plan for your life.  He is with you and feels your pain.  He knows what you are going through and will never leave you even though sometimes it feels that way.  Give your cares to Him and take comfort in His love.  He weeps with you and His heart breaks with yours.

On a happy note...my J tube is still working great!  I had a little incident where the balloon on the tube had deflated a little and ended up in the stoma, but that was remedied with a simple tube change to put it back in the right place.  That has been some time ago and things are going just fine now.  It has been a huge blessing not to have my tube repeatedly coming out of place and having to be changed all the time!


I had a very fun 4th of July!  Dressed all festive and watched fireworks over live stream. :)  Perfect way for us to see fireworks seeing as how you eliminate the cigarette smoke and perfume of other onlookers, vibration from the fireworks, and you can easily look away if the strobe lights get too much!  And your service dog doesn't have a heart attack! ;)

Ezra photobombing me ;)

My festive cuties

Poor Ezra puts up with
so much "decorating"

I hope you're having a good day!  Enjoy the sunshine! :)

Taking Life One Tube at a Time,
                                       Allison

Happy Easter! :)

I Peter 1: 3-5

“Blessed be the God and Father of our Lord Jesus Christ, which according to his abundant mercy hath begotten us again unto a lively hope by the resurrection of Jesus Christ from the dead,

To an inheritance incorruptible, and undefiled, and that fadeth not away, reserved in heaven for you,

Who are kept by the power of God through faith unto salvation ready to be revealed in the last time.”

Happy Easter everyone!  I have thought a lot about Heaven recently and as I was going about my day yesterday I came to the realization that, when I get to Heaven, I’ll be celebrating Easter every moment.  No, not the bunny or eggs or anything, but my precious Savior Who died and rose again to make Heaven possible for me... a girl who miserably fails Him so often.  What a sobering thought!  I’ll get rid of this sick, diseased body and praise Him for all eternity!  Doctors are afraid I’ll get another infection that will take my life....but I’m not afraid because I won’t go until it is my time, and I know if Jesus would so choose to take me, I’ll be healed for all eternity!  I have an overwhelming peace in knowing I’ve received forgiveness for my sin and trusted the Lord as my Savior.  I know I will go to Heaven when Jesus sees fit that my life on this earth is finished.  I don’t have to fear death or wonder what will happen after I die.  What a wonderful thought to know the moment I leave this earth will be the moment I get to look into my Savior’s face and begin eternity in a truly perfect place!  When you have Jesus, fear becomes faith, trials become blessings, depression becomes peace, pain becomes hope.  A dear friend sent me an acronym for HOPE...

Hold

On,

Pain

Ends!

I have peace because of the resurrection of Christ...because He died on the cross to pay for my sin, rose again to have power over death, and now is preparing a mansion for those who ask His forgiveness and put their faith in Him!  Any time I start moping and thinking I have it horrible, I only need think of His suffering for me and my problems don’t seem nearly as big anymore.

Health wise I am doing fairly well!  }read this very quietly!{ ;)  I actually don’t have any appointments until the 23rd (I think) of this month!  I won’t know what to do with my life without at least 1 appointment a week!  LOL!  I’ll sure bud figure something out besides doctors, hospital, or procedures (you didn’t hear that, MCAS!)! :)  Having consistent nutrition through Jane (my J tube) has done wonders for my energy and really my overall health!  My body isn’t constantly starving due to a tube being out of place. I’m so grateful that life with my J tube so far hasn’t been like I expected it to be....which is a good thing this time!  I struggled with a lot of fear going into this because of what my previous surgeon had drilled into my head about all these horrible things that he made sound inevitable if I got a J tube.  When I was facing the disappointment of my previous surgeon’s idea (avoiding the J tube with a longer tube threaded through the existing stoma [hole for tube]) falling through, I couldn’t understand what on earth the Lord was doing.  I had many talks with Him, telling Him I knew everything He did was right, but...”how on earth will You use this for good?  What are You doing with this???”  I didn’t know then what I know now.  Because of that really hard time... I now have a great new GI, a wonderful new surgeon who assures me it is fine to call if I have ANY concerns, and reliable nutrition through a J tube that is working great.  The Lord HAS done good through that struggle.  It was very hard and very disappointing, but I’m now very grateful I went through that heartbreak because life is so much better with nutrition and I have some much better doctors now!  Oh, and I almost forgot.... I had my post op appointment with my surgeon and I asked about the very strong "pop" I felt in my intestines.  He checked my tube and said it was obvious that the balloon was in the right place so that was comforting, but I was still VERY curious as to what on earth the pop was!  I mentioned the fact that the big indention in my abdomen that had been there since surgery was gone now.  When I showed him where the indention had been it was like a lightbulb came on in his head...He said he stitched the intestine to the abdominal wall and he might've caught some of the inner layers of skin, creating the indention and, when I bent over that time, that stitch finally let loose of the skin which could cause the pop and then the indention disappeared because the skin wasn't caught anymore.  So I think we solved the mystery! :)  

I’ve begun periodic manual draining my stomach some which means I disconnect the drain bag and manually drain my stomach with a syringe. Might sound gross, but I’m working towards being able to disconnect from the stomach drain bag and only do manual draining through the day. This will mean I would be manually draining when I would eat something or if I become nauseous instead of losing all water/stomach juice and everything continuously all day and night long. I’m hoping this will help me stay hydrated easier and it has to be better for my body. Hopefully I will be off continuous draining (accept for nighttime and when I’m out) within the next couple of weeks. It’s a slow process and it may get to a point that I can’t advance any further for the time being, but my hopes are high that I will reach my goal. I have had significantly less nausea and bloating lately which is why I’ve become adventurous enough to try this! :)

Well, I hope everyone has a great day today focusing on our wonderful Lord and what he has done for us!

Taking Life One Grateful Moment at a Time,

Allison

Wow...where do I begin? I apologize yet again for taking so long to update. It’s easy to remember when I’m stuck in a hospital bed, not able to really “live” life, but then when I’m doing a little better I get lost in life and forget to update everyone. Whoops!

So the most prominent medical device in life right now is my J tube seeing as how she likes attention and will go to great lengths to get it! ;) I had called the surgeon’s office about the pain I was having soon after I got home because it was persistent and I was very unsure as to whether or not it was normal to be that way. Well, I was told everything was okay and to try to get up and move as much as possible. The surgical pain finally went away just as a new pain started. The new pain was very debilitating and wrapped around my left hip along with painful spasms right at the tube site. It got to where I couldn’t stand up all the way or even walk across the house without sitting down every few feet due to the pain becoming excruciating. I called the surgeon’s office about the new pain that developed because the way it was feeling would’ve been a sure sign of major complications if it were a G tube. It is crazy how much difference there is between a G tube and a J tube!! Well, this time I was told I was doing too much. Yeah, make up your mind people! :) I went along with their theory and decided to try to find a happy medium where I was moving but wasn’t overdoing. However, NOTHING was working and it was only getting worse. My surgeon ended up working me in a couple days later so he could take a look at it. Turns out the J tube was too tight and the stitches that were on the outside at the tube were very mad. So he removed those stitches and loosened up the tube a bit. By that evening I was able to actually stand up and move some without the excruciating pain! My pain was very mild and nonexistent at times.  Then, the other day, I bent over and felt a VERY strong pop/kick in my intestines. My heart sank...it felt EXACTLY like when the balloon popped a while back on my GJ tube. I just knew that’s what happened. I had a professional freak out fit and called Mom who was in Charlotte at the time with my sisters for a doctor appointment. I didn’t realize til after I got off the phone with her that there was still something holding my tube in. I didn’t know if it was the balloon still holding or just the stitches inside so I decided to check the balloon volume to see if it was holding anything. Low and behold there was 3cc in it so obviously it wasn’t popped. I decided to call the surgeon’s office to check what volume the surgeon had put in the balloon so I could make sure it wasn’t leaking. The nurse was so caught up in the fact that I actually messed with the balloon that she never would tell me how much was supposed to be in the balloon.  I’m sorry but I’ve had a tube for how many years now?? I think by now I know how to take care of one and how to be careful in handling situations! Anyways, after going around in circles for probably nearly ten minutes of her telling me how to flush it and everything, I figured at least it must not be anything serious and just brushed it off. Ends up I get a call about an hour later telling me the surgeon wanted me to go to the ER to get it checked out to make sure the balloon hadn’t displaced itself, ending up in the abdominal wall. I did NOT want to go but I knew I had to. I get there and they wanted to just inject dye into the tube and take an X-ray to see where it was....only I can’t have the dye. So ended up a doctor from the surgery team came in, deflated the balloon, pushed the tube way in, inflated the balloon, and pulled on the tube. Then, just to make sure, he did it again. However, he filled the balloon with 5cc instead of 3. Since I couldn’t have the tube study (dye and X-ray) they decided it was probably fine and sent me home without doing any testing to see. It actually wasn’t all that painful at the time but by the time the doctor had done all that it was quite painful. I chalked it up to it being irritated. My pain started escalating pretty rapidly so I went on trusty google to see if I could figure out what might be the issue.  I found where some patients with severe burning pain were told that it was because the balloon was inflated too much and was causing the intestines to spasm which in turn would create short term blockages which explains the pain.  So, who cares what the nurse might think or how many heart attacks she may have...I removed the 5cc from the balloon and replaced it with only 3. Bingo! The newly developed burning pain is pretty much gone now. I am having some deep pain that hasn’t improved though. I just wonder what that pop was and if that could be contributing to the pain. I did notice that the big dip in my abdomen that had been there since surgery (where they had tacked the intestine to the abdominal wall for the tube) is now gone. It’s a bit unnerving and I can’t help but wonder if that balloon could really be misplaced. Who knows?! I have my post op this afternoon so hopefully he’ll know what’s going on! I have gotten my feeding up to the goal rate of 100ml per hour. I only do 9 hours a day though because if I end my feeds too late I end up finishing right at bedtime and it makes me not feel so well. I’m just SO thankful I have a reliable tube now! I can actually get nutrition every day and I don’t have to go every week or two for a tube change either!!

Otherwise, my G tube and Hickman are both doing rather well! The blood clot that had been in my arm from the midline (when I was in the hospital) seems to be gone now. At least the swelling is gone.

Thank you so much for your prayers and your patience! :) I really appreciate all of my prayer warriors who faithfully read my updates and pray for me!

Taking Life One Crazy J Tube Moment at a Time...
Allison

Life With Calamity, Jane, & Henrietta :)

Still out of it with anesthesia and pain meds...
taken after my Hickman placement.

Hi friends!

I am so sorry for not updating sooner!

I had my J tube surgery on Thursday the 22nd of February.  Things went well with the surgery, and I now have two holes with tubes coming out of them, one in my stomach and the other in my intestines.  So...without further ado...meet Calamity the G tube and Jane the J tube! :)

Meet Calamity the G tube and Jane the J tube :)

Meet Henrietta the Hickman :)

I came out of J tube surgery sometime early Thursday evening and had the rest of the evening to recuperate (ha!) before being whisked away to radiology early Friday morning to get a Hickman placed in my chest.  Lovely!  Thankfully I got a sweet anesthesia team who very graciously “knocked me out” quickly and didn’t make me lay flat on the table before going under!  I was in SO much pain from them butchering my gut the afternoon before and laying flat just was NOT an option! I’m very glad I expected a lot of pain despite the surgeon saying about not being very painful. I came to the conclusion that he has never had J tube surgery done on him before! ;) Yeah....it hurt (and still does)....like, a lot! Anyways, I got Henrietta the Hickman on Friday the 23rd of February.  I actually didn’t have all that much pain/soreness from the Hickman placement. I told them it probably was kinda like the saying “when you have a headache hit your big toe with a hammer and your head won’t hurt anymore”....my gut hurt so bad my brain didn’t care about the Hickman! ;) Once the Hickman was in place, my nurse removed the 2 midlines they had placed while I didn’t have a central line. I was very grateful to only have IV lines coming from one source instead of a midline in each arm...that makes everything complicated! :) They had taken me off my Lovenox (blood thinner) the morning of my J tube surgery because they didn’t want me to bleed extra during the surgery nor did they want me bleeding into my abdomen afterwards.

The blood clot from the midline.

Well, the morning after they removed the midlines, I noticed a very large knot (nearly baseball size) in my upper right arm where one of my midlines had been. I recognized it from the get go and showed it to my nurse. The nurse got in touch with the doctor and upon seeing it, she ordered an ultrasound. Yep, you may have guessed it by now...I had a clot. Thankfully it was only superficial and wasn’t a serious clot. I was then started back on my full dose of Lovenox to prevent that happening with my Hickman!

The wrist of an MCAS fighter ;)

After 13 days in the hospital, I was finally discharged on Monday!  I am still in quite a bit of pain at the J tube site.  My 5 small incisions are healing very nicely.  I ended up in the ER on Thursday because my J tube site had begun to bleed on Wednesday afternoon.  We contacted the surgeon’s office to see what I should do or if it was something normal.  They wanted me to go to the ER due to the bleeding, pain, and me being lightheaded when I was up.  My hemoglobin was quite low in the hospital, so I think that made them a bit more concerned about it.  SO, as I said, I went to the ER on Thursday.  They did some blood tests and a CT scan.  I had low potassium and the CT scan showed a hematoma right at the J tube stoma.  They said the bleeding and pain are probably coming from the hematoma.  Yesterday, I got yet another IV infusion of potassium.  My potassium was low in the hospital and I was given 4 bags of IV potassium.  When I was discharged from the hospital it was still low.  Then the ER tested it on Thursday and it had dropped a little farther.  So I got 3 more bags yesterday.  I’m low on magnesium as well only they can’t really replenish it because I’m allergic to the solution they use.  That’s MCAS life for ya!

I’m very grateful to be home from the hospital with a reliable feeding tube!  I’m hoping soon this J tube will be healed and the pain will leave.  At least I can get formula every day and I don’t have to starve for weeks waiting to get my tube put back in place!

Thank you so much for your prayers and support throughout this difficult journey!

Life continues....
Allison

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

Disappointment...

Philippians 4:7

"Be careful for nothing; but in every thing by prayer and supplication with thanksgiving let your requests be made known unto God.

And the peace of God, which passeth all understanding, shall keep your hearts and minds through Christ Jesus."

Hi Friends!

     I had quite a big disappointment last week.  I had been counting down the days and hours until I would hopefully get my tube fixed for good with the super long tube my surgeon was planning to put in.  Wednesday morning (1/24), when I showed up to my pre op appointment for my feeding tube procedure, I was informed that both my pre op and procedure in the OR had unbeknownst to me been canceled the Sunday before (1/21) but they didn't know why.  All they found out at the pre op office was that it was canceled by my surgeon, but he was in surgery, so they couldn't find out any information.  We did some calling around to finally find out that my surgeon had canceled it because he couldn't find a longer tube to put in, and he turned me back over to my GI for a J tube.  This was shattering to say the least.  I would've appreciated it if someone would've at least had the decency to call me and explain the situation.  I kinda felt like someone had just snuck up on me and shoved me off a bridge.  I think I felt every negative emotion in the book at that point.  I just wish the option of a longer tube was never brought up because it just makes getting a surgical J tube a lot harder.  After my surgeon drills all this absolutely horrific stuff into me about what can happen with the J tube, I'm going to have to get one.  I've been wanting a new GI for a while now but no one could ever get me into one for some reason or another.  So my sister called my nutritionist about the situation and she has given us a name of an office that has worked well for them.  I now have an appointment on Wednesday morning at 10:30 with a new GI.  I'm actually already pleased with him.....my PCP sent him the referral and my other GI's notes for a second opinion one afternoon and by the next morning, he had seen my notes and called my PCP to let them know that he would agree with my GI about the J tube being the next step so I didn't have to come if I was only coming for his opinion, but I was still welcome to come.  WOW!  My current GI would've never done that.  She still hasn't informed me that my OR procedure for tomorrow is canceled!  I said if I just had money to throw away for gas I'd show up in the morning like I didn't know! LOL!  Yeah, I know...rotten of me! ;)  My nutritionist gave her opinion that I should go ahead with a J tube, and she shared her experience with J tube patients and that the biggest issue that the majority have had is the tube clogging, but as long as I keep it flushed, it should be fine.  This calmed my nerves a bit.  She also said that my surgeon would've never found that longer tube because the farther down in the intestines you go, the less absorption you have.  SO, I've been waiting for a month on a procedure that would never happen.  This was a huge let down, but I know the Lord has a reason, and I've just gotta trust Him.  I'm hoping this new GI is as good as he seems and we can quickly get the ball rolling to get J tube surgery done.  At least I have exhausted all other resources, so if something happens to cause complications, I won't regret not trying such and such before going for the J tube.

As for my current situation... my GJ tube has been out of place since the 19th or 20th which means no formula since then.  I'm continuously hooked to a drain bag to drain my stomach so the water and kefir ("drinkable yogurt") I'm drinking, and the organic hard candy that I am eating, are all draining right back out of my stomach, doing my body no good.  My potassium had dropped in my labs on Tuesday so I got 2 bags of IV potassium infused on Wednesday afternoon and I felt much better afterwards, but I'm beginning to feel like that has run out.  Achy and quite fatigued.  I've been losing one to three pounds a day.  Thirst has become misery and started waking me up multiple times a night.  While my other family members take a small personal sized bottle of water, I literally take a gallon to bed with me!  But, my thirst will never be truly quenched because my body isn't able to absorb it before it is drained right out.  I can't unhook from my drain because I become so nauseated.  Pretty much everything I'm putting in my mouth is just to make my mouth feel better and to slightly curb hunger for a few minutes.  Anything eaten that won't drain out my tube properly, isn't repeated.

I leave a week from tomorrow (Monday) for my oral surgery at UNC Chapel Hill on Tuesday, February 6th.  At my pre op, they drilled in how important it is to be hydrated.... they weren't happy when I explained my current situation, but were glad I would have my tube fixed by then.  However, with the latest developments, it won't be fixed beforehand.  We plan to contact them to let them know and see if they want to do IV fluid infusions the day before since I'm coming a day early anyways.  I have to arrive at the hospital at 6:00 am and we have about a 3 hour drive.

This has been quite the trying time, but I know that my sweet Jesus will take care of me and knows exactly what I need.  He will indeed provide the strength and peace I need to pull through.  And oh how grateful I am for His peace that passeth all understanding!

Taking Life One Moment at a Time....

                                                                                       Allison