It's Been A While...

Hi Friends!

      I figured it’s about time for an update.  It has been a long time!

Back about mid November my Daddy began having a lot of trouble swallowing again and another tumor was discovered.  It has grown so large that he is now tube fed.  Please pray that the Lord will help him through this cancer journey yet again and provide strength and peace for all of us.

The Lord worked things out to where we could all go to the beach for a week as a family the end of November.  I took Bella and Ezra (of course) along and they both LOVED the beach and ocean.  Ezra loved it too much.  Don’t ask me why, but he had a complete obsession with the sand....he started eating it by the mouthfuls!  I then caught him crunching and I dug about 5 chunks of seashell out of his mouth!  We had been going to the beach daily and this particular morning we spent 2 hours on the beach, went back to our beach house, and that evening Ezra started trembling, vomited a big pile of sand, and started having diarrhea.  I instantly thought salt toxicity.  I had been very careful how much beach time Bella was getting because she’s only 6 pounds but I didn’t think I needed precaution for my 70 pound, active Ezra.  I called a local vet who gave the number for an emergency vet who didn’t have anyone on that night so they gave me another number.  I honestly don’t know how many vets I went through that night trying to get help for my sick boy.  He then vomited a lot of bile and eventually stopped going potty altogether.  I was terrified...he just laid there so absent and shaking.  So we made the choice to drive the 2 hours to the emergency vet in the middle of the night.  We arrived and then I was informed it was going to be $2,000 and I had to be prepared to pay it up front.  I croaked because I don’t have that kind of money just laying around and my boy needed help!  They gave me the name of another emergency vet that was an additional 20 minutes away but they were MUCH cheaper.  It turns out the treatment they gave him was almost the exact opposite of what he needed to treat the root cause but I don’t regret taking him that night because it got him some sleep, fluids, pain relief, and a break from the nausea.  He looked like he was doing better the next morning so I thought we were passed the worst of it only for him to take a turn for the worse that afternoon.  Since it was daytime hours I called Ezra’s regular home vet to ask advice on what I should do.  They told me I urgently needed to get him back to a vet because he most likely had a sand impaction and that could get very dangerous.  I searched out a vet that was only around a half hour away from our beach house and the Lord led me to the perfect vet!  They were amazing with Ezra and confirmed with X-rays that he did indeed have a sand impaction.  They did treatment for it and okayed me taking him back to the house that night.  They gave him a laxative, anti nausea, steroid, deep enemas, and a pain medicine (because his intestines were SO full of air behind all the sand) that would relax his bowel instead of a narcotic that causes constipation.  That medicine also had a sedative affect and he is very sensitive to those.  It knocked him out so much I had a mini panic attack and was a mess because I couldn’t get him awake.  I had been periodically saying his name just to make sure he would respond in some way because I was so worried due to him being so sick.  Thanks to the med, he was out so deeply I was screaming his name and nicknames with his face in my hands and he wasn’t waking up.  He FINALLY opened an eye and I broke into sobs of relief.  Then my sister reminded me that he did have a sedative.  Unfortunately, I had to take him back the next day because the first treatment helped but didn’t resolve the issue because he was still not going potty and continued to refuse food.  The vet was totally shocked because with the first treatment the sand had moved farther down his intestines, revealing just how much he had in him!  Part of it had been hidden in the coils of his intestines in the first X-ray so in the X-ray the next day it had more than doubled!  Thankfully, the vet took him right back and did another round and got him all cleaned out.  His gut was FULL of sand!  I’m ever so grateful the Lord was watching out for him and helped him recover!  He is definitely back to his bubbly, playful, active self now!  And you better believe that boy is NOT going to eat sand on my watch again!  I’m very grateful I caught him chewing that shell before he swallowed it because it could easily cut his intestines which is way more life threatening!

Bella, Me, and Ezra on the beach

Ezra's first X-ray when we thought it wasn’t so bad.

Ezra and I on the beach♥️

Ezra's second X-ray - over double the amount we first saw.

Bella having a blast on the beach looking all diva in her sun hat :)

I’ve been battling a brewing infection in my J tube since right before our beach trip but it was waxing and waning so I opted to hold off in hopes it would just go away with time and extra TLC.  However, it slowly got worse until it started steadily declining and stopped improving.  I contacted my infectious disease (ID) doctor and she ordered a swab culture.  Within the first 24hrs it came back positive for the pseudomonas (bacteria that has been recurring the last 1 1/2 - 2 years).  She was waiting for susceptibility testing and in that time apparently 3 other bacteria’s began growing.  So I have an infection with 4 different bacteria and have been put on 2 strong IV antibiotics through Christmas.  I hadn’t been feeling so amazing the last few days (very tired, headaches, tachycardia) and then the antibiotics add there own yuck.  I just wish the antibiotics would knock this infection out once and for all!

I can’t believe Christmas is already here!  My heart hurts so very deeply this year, but I have to keep reminding myself it is Jesus’ day and not about me and my circumstances.  I just ask that you please send some extra prayers up for my family.

Thank you for your faithfulness to keep up with my journey, pray, and comment!  Love y’all!

Taking Life One Adventure at a Time....

Allison

Good News!

 Hi Friends!

    I have some good news!  My J tube is making huge strides in the right direction!  The blister-like redness around the tube is 98% healed and my constant, agonizing pain has disappeared!  I woke up this morning with hardly any J tube pain whatsoever and have just had little bouts of pain throughout the day instead of nearly constant misery.  The pain is a little more prevalent when doing my formula but not much worse.  Now that the infection is clearing up I want to quit the antibiotics!  It’s just hard when the tube is doing so much better, to take meds that make me feel a bit crummy.  But I just keep having to tell myself that in my situation with antibiotic resistance issues I certainly don’t want to trigger that worse by not finishing out the round (plus the infection would return because it’s not 100% gone).

Two things you can pray about... I’m going to soon, Lord willing, be trying an iron supplement due to my severe iron deficiency anemia and also a probiotic to hopefully help me fight off infections better.  Just please pray that 1.) I can tolerate them without a reaction and 2.) they will be successful in what they need to accomplish!

Anyways, I just wanted to let y’all know that things are improving!

Allison

Double Trouble...

 “Fear thou not; for I am with thee: be not dismayed; for I am thy God: I will strengthen thee; yea, I will help thee; yea, I will uphold thee with the right hand of my righteousness.” {Isaiah 41:10}

Hi Friends!

     My J tube has continued to worsen since my last update.  More painful, lots of drainage (both bright teal green and an odd brown/milky color), and my skin around the tube has turned dark red and almost looks blistered.  I started the antibiotic on Wednesday with no improvements whatsoever.  I got some unexpected news from my infectious disease (ID) doctor this morning...not so good news.  The results from the J tube culture came back.  I have 2 different types of bacterial infection - gram positive Staphylococcus and gram negative Pseudomonas.  Both of which are now resistant to the antibiotic they had started me on.  Thankfully, the previous antibiotic that the pseudomonas had become resistant to a while back is now showing that the pseudomonas is susceptible again SO she switched me back to the antibiotic we used in the past and then added another antibiotic for the staph.  She wasn’t surprised that nothing was improving since the antibiotic I was on was useless to kill off the infection.  She got the orders into the pharmacy fast and the pharmacy delivered it to me in time to get 2 doses in today!

My ID doctor wanted me to contact my surgeon just to inform him of what is going on and the possibility of needing something done (like a tube change) in the near future if this infection persists or if this tube starts having back to back infections like the previous tube.  She said we are getting close to being at a scary point and it may become necessary to put me inpatient, if I end up with back to back infections causing resistance to all of the antibiotics, to try to desensitize me to different antibiotics so we would have more options but that’s a touchy, dangerous thing due to all of my extreme allergies.  Just please pray that these antibiotics would kill off this infection for good!  I have been dealing with these infections for over a year now and the more they come back, the more dangerous they are and harder to get rid of.  Also please pray that the pain will begin to subside soon as it has become rather severe.

Lord willing, I will soon be trying a probiotic to see if I can tolerate it and if maybe it’ll help me fight off all of these frequent infections.  At least it’ll replace some of the good stuff all of these antibiotics are killing off, but we are hopeful that this may give my body a little extra fight.  Please make this a matter of prayer as well!

Thank you so very much for your faithfulness to pray and encourage me!  I really appreciate it!

Allison

Another Infection?.....

Hi friends!

      So things haven’t gone so great post J tube exchange.  I had begun to heal and the soreness was improving when things took a turn for the worse.  The pain started worsening and getting sharp and I began having the dreaded bright green/teal drainage I always have with the pseudomonas infections.  So I ended up contacting my infectious disease doctor on Friday and she said with the pictures I sent her combined with my history it is concerning for another infection.  Anyhow, they scheduled me for cultures at 2:00 tomorrow (Monday) afternoon and they’re already planning on starting the process of arranging IV antibiotics  first thing Monday morning.  So it’s pretty obvious I have yet another infection - just awaiting “official” diagnosis with the cultures.  Over the weekend I’ve started feeling a little crummy and the pain has sky rocketed to the point it is now constant unless I’m sitting.  When I’m standing all I want to do is hunch over and hold my J tube site.

Otherwise, life has been life...pretty uneventful.  Been having some headaches pretty regularly, but that’s probably just coming from my anemia.  I’ve kept my feeding on half rate over 24hrs instead of full rate over 12hrs for the time being.  I just don’t want to upset the apple cart until this infection is under control and upping my feeding would just put more stress on my intestines right in the area of this infection.

I hope everyone is doing well and staying healthy!  Much love to all my prayer warriors and encouragers out there! :)

Allison

 Hi friends!

     I am so very sorry it has taken me so long to update!  There has been a lot weighing on my heart.  I can’t give details but I would definitely appreciate continued prayer regarding this unspoken request.

First of all I would like to inform you that my whole family survived covid without lasting issues.  Thankfully my daddy never got it (or had it with no symptoms) and none of us had any emergent issues.  It was a doozy of 3 sick weeks but very grateful we have all recovered well!

Since my last post I had my GI follow up which went well and got my G tube changed out via endoscopy to the kind of tube I normally use.  It is doing very well!

I FINALLY got my J tube changed out on Monday!!!  A while back I felt a pop inside at my J tube and thought a stitch must’ve popped loose.  I found out Monday it was most likely when the retention balloon (that holds the tube in) ruptured.  They were trying and trying to empty the balloon and couldn’t get anything out so they decided to push a little liquid in to see if they could see it on the X-ray.  Well, it went straight into my bowel instead of filling a balloon.  The doctor informed me it was ruptured so they were just going to have to pull it through.  They went through a whole list of things that might help it be a little easier to bear, but of course none of them were options for my crazy oversensitive body so they settled for a little saline to hopefully help it come out easier...which did NOT work.  It was EXCRUCIATING as they slowly pulled it out.  The whole time he was pulling the tube out he was saying “hm...wow...what is that?!” They had to pull it very slowly instead of just 1, 2, 3, yank it through because it is such a new stoma (hole) that you risk ripping the new scar tissue with any brisk force.  Anyways, the doctor stared at the tube for a few seconds and then told me that in addition to the balloon being completely ruptured, it had debris or something on it.  After getting the new, MUCH more comfy tube put in, he showed me the tube.  He said he had never seen anything like it.  It was so weird....it was big, hard nodule like things with a stitch hanging in the middle of it.  The “growths” almost looked like something that you would imagine scar tissue looking like.  No one knew what on earth it was but agreed that it was likely the reason my J tube had become so position sensitive.  It is WONDERFUL not having to tape it and bandage it up like I had been...now I can just pop a tubie pad under the outside bumper and be good to go!  And it’s not insanely position sensitive as it had been.  Unfortunately, due to the trauma to the stoma/bowel, I’m having some difficulty tolerating my full feeding amount.  I’m now trying to half my feeding rate and do it over 24hrs instead of 12.  That way I can hopefully get my full feeding in just at a different pace.  I’ve decided to do my feeding at this rate for around a week and then try going back to the original rate over 12hrs.

A specific Bible verse that has been a comfort for me lately has been Psalm 147:3... “He healeth the broken in heart, and bindeth up their wounds.”  No matter how broken and wounded my heart is, I can always count on my sweet Savior to always help and heal those wounds. <3

Life With Covid...

 Hi friends!

      Where do I begin?  It has been quite a while since I last updated.  I got to come home from the hospital the day I last posted.  My tubes are doing great!  My J tube has healed nicely.  I had my last post op on the 12th and my surgeon was very pleased.  I’m supposed to get my J tube swapped out sometime the beginning of September so I can get the kind of tube I normally use that’s more comfy.  I have my post op GI appointment for my G tube scheduled on August 10th.  At that point I should be able to go ahead and schedule to get it swapped out via endoscopy so I can get a tube with a balloon instead of this one which just has a disc inside.  They can’t remove it with traction (the 1, 2, 3, yank method) because of my EDS joints so they have to go in with the scope, cut the tube, and bring the disc out through my mouth before placing a balloon tube.

Last Monday evening I started not feeling well and by Tuesday I had a fever and was pretty miserable.  I did a Covid test Wednesday morning and was positive.  It has been rough and it still is so I’d really appreciate your prayers for me and my family as they’re following suit and catching it one by one.  The pain in the everywhere, the cough, and the complete exhaustion are the worst.  My muscles are so utterly fatigued that even simply breathing feels like a workout.  To walk across the house I get so out of breath like I ran a mile.  Might I add it’s very odd not being able to smell anything and barely taste certain things.  I never accurately imagined it until it happened to me.  It’s just totally strange.

I greatly appreciate your prayers and support!  Thank you for your continued encouragement!

Taking Life One Day With Covid at a Time....

Allison

Success

 Hello There!

       My procedure went well yesterday afternoon.  They were able to successfully place the new G tube and remove the old one so that stoma can heal.  When he got the camera down into my stomach to where he could see the inside where my other tube was, he said it looked pretty beat up.  So there was definitely a problem in there causing the extreme pain and not just nerve pain (which can happen with tubes because they are a foreign object to the body).  All I knew was I could NOT live with that pain any longer!  The pain was pretty rough when I woke up from the procedure because I can’t have the usual local anesthetics they use to numb the area to help with post procedure pain.  They have the pain controlled well and the plan is for me to go home right after my late afternoon dose of pain medicine.  With pain meds in my system I’m actually in a lot less pain than I was before the procedure which is a huge blessing!

Taking Life One Success at a Time...

Allison

Test Results & “Surgery”...Again

 Hi friends!

    So, I’ll start with the results from Ezra’s (my medical alert dog) tests...

Ezra conked out from the
sedation and pain killer they
gave him for his exam and tests.

  they were very positive!  His bones look very strong.  The vet didn’t see anything wrong in the X-rays.  He did a very thorough sedated exam of his legs and the only thing he found was that Ezra’s left (problematic) leg is slightly weaker than the right, but his hip joints have very good bone coverage (no hip dysplasia) and none of his joints move more than they’re supposed to (no torn tendons/ligaments).  He sent the X-rays to their veterinary orthopedist to make sure he didn’t miss anything.  His conclusion is that he thinks Ezra may have some tendinitis in his knee that is irritated by him laying still for longer periods of time which makes it hard for him to get going.  He said there is also a possibility that Ezra has the very starts of arthritis that isn’t visible yet.  Either way he wants to get him on a joint supplement that Ezra’s super sensitive stomach, Hyperlipidemia, and allergies hopefully can tolerate.  He had started him on a joint supplement a month or so ago and it started helping but Ezra ended up having an allergic reaction to it...go figure!  He is beginning to sound more and more like a Workman!  I’m supposed to start exercising him more as he tolerates it and doing massage/passive movement in his hips and left leg.  Even though we still don’t have a definitive answer, I’m so very grateful it isn’t progressed arthritis or the starts of bone cancer!  I need my tough little man with me for a long time to come! 💙  The Lord worked things out to where we could keep Ezra out in the van with us until they were ready for him instead of him being crated until they got to him and then we were able to take him home within about 30 minutes so we didn’t have to be separated so long.  For those who aren’t aware of what’s been going on with him...Ezra has been having issues with his back leg for several months.  It’s intermittent and usually happens when he has been lying down for a little while.  When he goes to get up from that position, he limps really bad on that leg for usually 5-7 steps, but once he gets going it rapidly lessens to his normal gait and he is still his energetic, playful self.  He has an anti inflammatory pain reliever (equivalent to ibuprofen) that I can give him before we go out for appointments/church or when he’s having a tougher time and I’m really optimistic about getting him on a joint supplement with the results we were seeing with the previous one.

I no longer have my NJ tube!  If you have a very weak stomach you may want to skip to below the line! ;)  I woke up one morning around 4:15am with extreme nausea.  I took Zofran to no avail and began vomiting at about 5:15am.  I vomited so hard that I threw up my NJ tube.  My worst nightmare came to life...my NJ tube was in my nose and out my mouth.  Thankfully my sister was able to cut it and pull it the rest of the way out.  I thought something I had eaten must’ve gotten stuck in my stomach because that’s what happens if something won’t drain out my stomach drain tube.  But usually I get instant relief once the food is gone...not this time.  I vomited from 5:15am until around 1:30pm.————————————————Once the vomiting stopped, I improved pretty rapidly.  It did not behave like a virus (and no one else got sick) and it also didn’t act like my normal when food gets stuck in my stomach and won’t drain out my stomach drain so we are figuring it was just a miserable mast cell reaction. One positive is that I got rid of my NJ! lol  The technique wasn’t the most comfortable, but I didn’t have to worry about the weighted end getting stuck on my adenoids! :)  Oddly enough, it feels so weird not having something gagging me when I sneeze, cough, or roll over in bed!  I’ve had that thing for over 8 months so you can imagine how bare my face feels without a tube taped to it!  Thankfully I was already well into the transition from NJ to J tube and was supposed to be on full J tube feeding only a few days after I lost my NJ so I don’t have to get the NJ replaced.  I’m now on full nighttime feedings through my J tube and that is going well.

My G tube....not so great.  I finished the course of IV antibiotics for the Pseudomonas infection and the drainage stopped however, the pain has only worsened.  I asked my GI if there were ANY other options I could try because the pain has just become unbearable.  I exhausted all of my options other than going in and making a whole new stoma (hole for the tube).  I tried loosening my tube, wearing an abdominal binder (which ended up injuring my J tube so I had to discontinue wearing it), ice, heat, and I was even desperate enough to try putting tea bags on my stomach (it’s supposed to help with bacteria and inflammation).  So I contacted him on Sunday afternoon to let him know I was done and ready to have it moved again since that was my last option.  We have been corresponding back and forth to get things in order and he messaged me back this afternoon and asked if I could do tomorrow at 1:30 because he’s working in the hospital this week and then won’t be back for 6 weeks.  I definitely do NOT want to wait 6 weeks with this tube hurting like this!  Hopefully the new placement will last for many years to come!  The plan is to place a brand new G tube, making a new stoma and then for me to stay tomorrow night in the hospital.

Well, I’m off to prepare for my very sudden procedure tomorrow!  Please pray things will go smoothly, the tube placement will be a success, and comfort for Ezra while I’m in the hospital and he has limited activity/movement (hospital rooms are only so big).

Taking Life One Procedure at a Time...

Allison

p.s. Please pray for my family!  We are going through some really, really rough waters right now.  I can’t give details, but Jesus knows and we could really use your prayers!

CT Results

 Hi friends!

     I got the results of my CT scan that was done this morning.  Everything looks great.  It’s good news, yet part of me is a little uneasy about getting my hopes up.  This would be great if all of it was a brewing infection and will go away with antibiotics, but there’s a part of me that’s doubtful and unsure.  Pseudomonas is a very painful bacterial infection so it could be the culprit yet the pain was there a good long while before the drainage showed up so.... yeah.  There are a lot of what if’s that I just have to give to God because there’s absolutely nothing else I can do with it but worry.  It is easier said than done, though!  I guess we will just have to wait and see what improvements come with the antibiotic.

Please remember to pray for my ever

With my precious Ezra - getting
some extra fun time in before
he goes for his test tomorrow :)

faithful alert dog (Ezra) as he goes in for his sedated testing tomorrow morning at 8:30.  You could throw a few prayers in for me as well...I don’t know what I’m gonna do without him!  We haven’t been separated for longer than a little over an hour since he had surgery at 4 months old and he’s nearing 8 years old now.  He will be at the vet a minimum of 6 hours.  I’m just really hoping this gives us answers that we can remedy!

Thank you again for your prayers!

Taking Life a Few Unknowns at a Time...

Allison

Test Results & Schedule Changes

 Hi Friends!

     I got the results of the cultures they did on my G tube.  They were positive for a Pseudomonas infection as I suspected so I’ll be starting a week of IV antibiotics sometime tomorrow.  They have it prescribed, but due to me having to have it without dextrose, the pharmacy has to order the vials and mix it themselves.  Please continue to pray that it will not reach my blood stream or my brand new J tube!  Also, pray that they can get rid of it for good and it won’t come back.  Pseudomonas is a tough, sticky bacteria and has been really hard for me to get rid of in the past.

My CT scan for my G tube has been moved up from Friday to tomorrow at 11:15am.

Ezra still has his test on Wednesday so please continue to pray about that!

Taking Life One “Adventure” at a Time...

Allison

The Ups & Downs Of Life....

 Be still, my soul: Thy God doth undertake

To guide the future as he has the past.
Thy hope, thy confidence let nothing shake;
All now mysterious shall be bright at last.
Be still, my soul: The waves and winds still know
His voice who ruled them while he dwelt below.

Be still, my soul: The hour is hast’ning on
When we shall be forever with the Lord,
When disappointment, grief, and fear are gone,
Sorrow forgot, love’s purest joys restored.
Be still, my soul: When change and tears are past,
All safe and blessed we shall meet at last.

Hi Friends!

   Once again, I apologize for the delay in updating.

After my last update I started getting

My mad J tube and Incision
before I got the staples
removed and the stitches
came out of my tube.

a lot of redness and added pain at my incision and J tube and my stoma was dilating around the tube.  It was obvious to us that it was my mast cells angry at the staples and stitches.  I called the surgeon and the nurse said she would take the staples out sooner than my post op appointment but the surgeon wouldn’t let her take out the stitches which were at the tube.  There was no way I could send them pictures so I could only attempt to describe it and they were determined it was acid burn from drainage at the tube site.  Anyways, I got my staples out on the 2nd and at that point the nurse saw my J tube and agreed with me that it was definitely from the stitches, but it didn’t change the fact that she wasn’t allowed to remove them.  But the Lord saw fit to be merciful and the stitches came out on their own.  See, my mast cells don’t like the kind of stitches he used so what happens is the skin and flesh around them literally disintegrate until the stitches just come through and once they’re out then it heals up great.  This time was no different.  Once the stitches had come out, my J tube began rapidly improving to the point of no pain!  The surgeon was pleased with how well I was healing when I went to my post op appointment on the 7th.  Since I normally do 12hr feeds during the day, he is having me cut my feeding rate in half and do 12hrs through my NJ (nose tube) during the daytime and 12hrs through my J tube at nighttime for 2 weeks and then, as long as all is well, transition to doing the full feeding rate for 12hrs at night for the next 2-3 weeks until I see him again.  As long as everything is going well at that point I should be able to get my NJ removed.  He said he had to do my whole surgery with kid gloves because when he opened me up he found that my small intestine is the size of a baby’s.  He said a normal small intestine is about the caliber of his thumb or a little larger and then he held up his standard size ink pen and said mine is about the size of that!  He can’t explain why because the formula I use is real foods made into formula so my food isn’t pre-broken down where my intestines wouldn’t have to work.  I wonder if maybe that is why I have some of my GI issues.  He said he had to be super gentle with my intestines because they were so delicate.  He put my tube in a couple feet farther down in my intestines than my previous J tubes in hopes I’ll be able to do nighttime feeding so I don’t have to be as tethered during the day.  I’ve never tolerated nighttime feeding because it would make me sick most likely from backing up into my stomach when I laid down.  So far I’ve been doing great with nighttime feeding at half the rate through my J tube so we’ll see if that continues to go well when I bump it up to full rate.  It would be great if that would work out!

Now...for the G tube.  Unfortunately, this one doesn’t have such a great report.  They exchanged the tube on the 3rd and it made no difference in the issues I’m having with the severe pain and the retention balloon making it’s way into the stoma.  It’s so bad I’m regretting having it moved in the first place because it’s worse now than it was before the surgery.  I contacted my GI to let him know there was no improvements with the tube change and ask him if maybe a CT scan would tell us what’s going on.  He thought that was reasonable and might be helpful so he ordered a CT that is now scheduled at 10:45am on the 18th.  He said he hoped we wouldn’t have to move it again, but we would have to see how things go if the CT scan doesn’t give us answers.  I hope not as well however, if that is the only solution, I’m more than willing.  And to complicate things, I’ve been having neon green/teal blue drainage from the G tube the last several days that has been consistent with my pseudomonas bacterial infections in the past and I have really started not feeling well today which isn’t a good sign.  I got my G tube swabbed yesterday for cultures but haven’t gotten results yet.  Please pray that this probable infection doesn’t spread to my J tube or bloodstream!

Also, please pray for my Ezra.  He goes in on the 16th to be sedated for a full detailed exam and X-rays of his hip and leg.  He’s been having issues with his back leg for a few months now and the vet can’t seem to find a treatment to fix it so we’re doing this to hopefully find the problem.  It’s intermittent and mainly when he tries to get going after lying down for a while so we are suspecting arthritis but we won’t know until they can see in there.  I’d just appreciate your prayers for his safety and some answers that we can treat!

On a happy note, I’m so very grateful to have actually been able to attend church lately!  It has been a big blessing not to be quite as isolated!

I woke up feeling super crummy this morning so I just flipped the radio on and a man was singing the 2nd and 3rd verses of Be Still My Soul (words posted above).  The Lord knew I needed that sweet encouragement and comfort!

Thank you for your continued prayers and encouragement!

Taking Life One Hurdle at a Time...

Allison

Recovery...

 So sorry for taking so long between updates.  I got home from the hospital Wednesday evening although I felt like staying a couple extra days for pain relief.  It’s been a very difficult road since surgery.  It was a much more major surgery than I ever expected and has been very painful and extremely discouraging.  Things have taken longer to heal and it’s just really frustrating that I’m a week out from surgery and still not back to my independence and “life”.  I keep having to remind myself that he made an extra “stomach” with my intestines, I have 13 staples in my abdomen, a new hole with a tube in it, and stitches.  This has been the worst surgery I have ever gone through!  I woke up from anesthesia into a nightmare and wanted anesthesia again! :)  I have never had THAT bad of pain ever before in my life and hope I never ever have it again!  I still can’t stand up completely straight.  I’m thankful the pain has improved greatly since surgery even though I’m not back to where I thought I would be or achieved what I would like.  My goal had been to go skating again, but right now my heart would be overjoyed just to be able to get dressed on my own or get something I want in the other end of the house without having someone bring it to me!  Just please pray the Lord would lend me some extra strength!  I did finally achieve getting a shower yesterday! - and trust me, that was a true victory! :)

I’m also having some complications with my new G tube.  The GI is concerned I may be developing buried bumper syndrome (where the balloon that holds the tube in gets buried in the abdominal wall).  I’m struggling to keep it in where it’s supposed to be, it hurts, and it keeps getting stuck which isn’t a good sign.  I keep having to push it in to get it to start draining my stomach again.  So I’d appreciate your prayers about that situation.  I currently have an appointment on June 3rd to get it exchanged in hopes that’ll remedy the situation.

Thank you for your continued prayers and support!

Taking Life One Long Day of Recovery at a Time...

Allison

My incision

Please Pray!

Hi friends!

   

Trying to smile through the pain

  Just letting you know surgery was a success.  It ended up being an open surgery.  He made a pocket out of my intestines, stapled it up, and placed the J tube.  It is right above my waistline on my right side now.  I am in excruciating pain even with IV narcotics every 3 hours.  It’s hard to breathe because it hurts really bad to use any of my core muscles.  I will have to have my NJ in for another 2 weeks while this new tube heals.  Please, please pray for relief and rest.  It’s gonna be a long recovery..... :(

Taking Life One Ounce of God’s Grace at a Time....

Allison

Surgery Details

 Hi friends!

        I apologize for my absence.  I got home Thursday evening (5/6) and it was a rough few days.  I ended up using all my IV acetaminophen that I had planned to last me for both tube placements.  They got the T fasteners way too tight (the instruments they use to tack the stomach to the abdominal wall) and they were causing rather bad pressure ulcers.  By 4:30am Monday morning I had reached my absolute max I could handle, I had taken everything I could (medicine wise) and it wasn’t touching the agony, I hadn’t slept, and I was in tears — I was at the desperate point where I was ready to go to the ER.  So I took a small risk and released the fasteners only to find the lower one had a really bad pressure sore and the upper was in the beginning stages of infection.  Miraculously, by the time I got out of bed Monday morning I could stand up straight, move around, and actually function!  Thankfully my GI understood my predicament and I wasn’t in trouble!  I really turned the corner at that point and have been on the uphill side of things since!  Very grateful!!

I got final details for my surgery this afternoon and they go as follows....

I’m to arrive at 9:00am Monday for an 11:30am surgery to place a J tube.  Please pray I will stay well the next few days and will have a smooth, successful surgery, good recovery, and this tube would be a winning, successful, PERMANENT J tube!  I found out that it is registered as a laparoscopic surgery so hopefully that means unless there is something unexpected that I won’t end up having an open surgery!

Thank you ever so much for your continued prayers!

Taking Life One Surgery at a Time...

Allison

Home, Sweet Home...{Soon}

 

Hello Friends!

    Well, Lord willing I will be heading home this afternoon.  I’m in quite a bit of pain so I would greatly appreciate your prayers for comfort!  It was a bit of a rough placement with the abundance of scar tissue they had to go through, they had to re-tack the stomach to the abdominal wall, and cut through the muscle.  So yeah, it’s quite painful to say the least.  The worst part is the muscles contracting because there is a foreign object in them.  Looking forward to saying goodbye to the hospital, but not so much to saying goodbye to the pain relief that goes with it!

Ezra with his prize toy
right after he got it.

Right after they took me back to the procedure room, they were sending Mom, my sister, and Ezra back to wait for me in my hospital room.  Well, they were passing the gift shop when someone squeaked a dog toy in the gift shop.  They said Ezra flipped around and was glued to the window.  They got him to come back to my room, but then decided to treat him to something special.  So my sister took him back to the gift shop to get the toy and he got it, put it up on the counter for the cashier, and then carried it all the way back to my hospital room.  He was one VERY happy pup-a-roo! 💙  Yes, he is rotten, but he sure does earn it!

I was crying in severe pain
& Ezra brought me his new
favorite toy obviously trying
to make thing better 💙

Pain relief, puppy snuggles,
& music = sweet dreams!

My sister had quite the scare today!  She was outside the hospital taking Ezra for a walk and suddenly heard 8 gunshots, a pause, and 4 more.  Then someone in a car hollered at her to go inside because there was a shooting and they were coming through the parking lot and then she saw a car drive by with it’s windows busted out.  She made a beeline back inside and thank God she was safe!  We later learned on the news that it was a violent case of road rage.  How crazy can people be?!

Thank you for your prayers over these next few days of healing and as I prepare for J tube surgery (only 11 more days)!

Allison

Success!

 Hi friends,

Finally got something
to drink!

    

My sweet Ezra snuggling
with me after I got back
to my room...he was very
happy to have his
mommy back!

Just a quick update to let you know that IR was able to successfully place my new G tube.  My pain is pretty controlled with meds.  Hopefully things will be settled enough for me to be ready to go without IV pain meds and go home tomorrow.  I appreciate your continued prayers as I recover and then prepare for my J tube surgery in 12 days.
Allison

The Plan...

 

Somehow this precious face can
make a rough day much better!

Can’t stay sad long with
my Ezra around!

My GI talked with the interventional radiology team and they have agreed to try placing the G tube with their method.  Please pray it is successful this time!  I am scheduled at 1:00 tomorrow so I’ll just be chillin here for the night and then, depending on pain after the procedure, I can go home whenever I’m ready.  I’ve never gone home straight after tube placement, but who knows....maybe G tube #5 will be different!?

Thankful they got a specific time so I can have my formula until midnight!  My body was ready for some nourishment after going all day yesterday and all night last night without!  Really, really hopeful this time will work so I don’t have to have it surgically placed!

I really appreciate your prayers!

Allison

Unsuccessful....

 Sooooo..... my GI tried a lot, but couldn’t safely pass the tube through my abdomen due to scar tissue.  They have admitted me and are going to talk to interventional radiology (IR) about trying it with their method tomorrow.  Hopefully they can get me in their schedule tomorrow and be successful placing the G tube.  If they are unsuccessful also then they will pass the task to the surgeon to do while he does my J tube in two weeks.  Disappointed, but I know Who holds today and tomorrow and He has a good reason for this even though it doesn’t seem so in my eyes.

Please pray that IR will agree to do it and will be successful so I don’t have to go the more invasive way with harder recovery through surgery and I don’t have to wait 2 more weeks!

One big praise is that they’re letting one family member stay with me and Ezra overnight without a fight and two during the day!

For now....we wait, hope, and pray for a better result tomorrow!

Allison

Surgery Preparations....

 Hi Friends!

     I’ve been preparing everything for my upcoming surgeries.  My goal is to have things ready to where there is very minimal preparation for my J tube surgery since it is scheduled only 2 weeks after my G tube placement!

Got my covid test done and it’s negative so we’re all set for my G tube placement on Monday.  I’m supposed to arrive at the hospital at 11:30 for my 12:30 procedure and I will be admitted to the hospital overnight to make sure there are no complications.

Specific prayer requests:

•The procedure to go smoothly.

•The doctor will be able to find a good place and have success at placing the tube.

•Good recovery so I’ll be ready for J tube surgery in 2 weeks.

Thank you so very much for your many prayers on my behalf!

Update on my daddy...

He had his appointment with the doctor and there is no presence of cancer so he will be closely monitored and no further treatment is needed unless they discover cancer again!  Praising the Lord for a good report!

Taking Life One Surgery at a Time...

Allison

Where Do I Begin?!?

 Hello There Strangers!

     Wow, it has been ever so long since I last updated and boy, do I have a TON to fill in!

Soon after my last post, the surgeons agreed to remove my infected J tube that had been causing issues since August 2020.  The stoma still hasn’t closed off all the way which usually happens between 2-48hrs after tube removal.  Trust my body to always “spice things up” I suppose.  I talked with the surgeons right before they removed the tube and they weren’t nearly as obstinate as the hospital doctor had portrayed them to be.  AND who knows what that doctor told them seeing as how she definitely didn’t care anything about my good.  Anyway....off that soapbox!  I had a little more hope for not as hard of a fight to get another J tube.  We started the process of getting someone to do another J tube around 8 weeks or so after the tube was removed...I contacted my GI for a referral to get the ball rolling.  Well, the referral was for the surgeon that has never wanted me to have a J tube and has always tried to find ways around it that never worked (just doesn’t want me to have to deal with a J but sometimes ya gotta do what ya gotta do!).  I went ahead and made the appointment with VERY low expectations.  I ended up getting a cold right at time for that appointment so it had to be postponed another 3 weeks.  I was so irritated because I knew this was a useless appointment and I was only wasting time when I could be seeing someone who at least possibly might do the surgery for me.  The Lord intervened in an amazing way!  I went to the “anti-J tube” surgeon fully expecting it to be an absolute waste of time and he asks me to tell him what’s been going on and why I’m there to which I start telling him the whole mess.  Then he starts talking and my expression had to be between “I’m going to fly through this ceiling with excitement!” and “are you really saying that?!” because he was talking like he might actually do it!  He told me that he had contacted the doctor that helped him do my very first G tube and that doctor told him of a new way they can do a J tube that makes it permanent and better all around.  He said it would be permanent so he needed my commitment that I wouldn’t let doctors just pull it and then if it got infected he would work through it with my doctors and wound care to get things better instead of just finally removing the tube.  See, all we got from the surgeons on my last J tube was “don’t pull it” - we had no help in getting it better and preserving it.  This surgeon said he would definitely help and work with doctors if something happened instead of leaving me and my doctors stranded and I know from prior experiences with other tubes that this surgeon does help when something is causing issues with a tube that he has placed.  When we finished the appointment he told me to hang on while he did research on what the surgeons had done in placing my previous J tubes and what he was going to need to do.  After around 2 1/2 weeks of waiting they called to schedule J tube surgery!  So I’m officially scheduled for J tube surgery on May 17th.  I’ll be admitted to the hospital afterwards for pain control but hopefully it won’t be too hard of a surgery!  It depends on what he has to do.  If he has to slice my abdomen open to remove scar tissue that is a much more difficult recovery apposed to just a laparoscopic surgery which is tough enough!  I don’t have any details about what exactly he’ll be doing and I probably won’t get that information until I see him right before surgery.

My G tube has really gone downhill recently.  It has been confirmed several months ago that there was an ulcer at the stoma and I’ve been on medicine to supposedly heal it along with doing a lot of “tricks” the GI has me trying and nothing is helping and the pain has gotten so bad I can’t sleep in my bed so I’ve been camping out in the living room.  It came to the point we were making no progress and the pain is really interfering in every aspect of life so I’m scheduled to have a new stoma made endoscopically (like surgery without the extra incisions) on May 3rd so I’ll have a new hole for my G tube and we can let this one heal.  If all goes well I’ll have to only spend one night in the hospital afterwards and then can go home.

My daddy had cancer that started in his voice box, penetrated, and attached to his thyroid and esophagus.  The tumor was about 2/3 the size of the surgeon’s fist.  He had surgery to remove his voice box, half of his thyroid, and part of his esophagus and to have a LaryTube placed (looks a lot like a trach).  Praising the Lord they got all the cancer and they were able to repair his esophagus so he’ll still be able to eat.  Right now he is on liquids/soft foods but hopefully he’ll get to expand his diet more as he heals!  He sees his doctor on Friday to find out if he has the all clear or if something else will have to be done so please pray about that!

I finally got the opportunity to order my very own pair of figure skates!  I got to go pick them up from the pro shop on Thursday and skate directly afterwards.  Wow, what a difference!  They glide so much smoother and faster than the rental boot skates.  I about ended up on my tailbone a few times because of it! :)  I’m hoping I’ll feel well enough to go one more time before my surgeries since it’ll probably be a little before I feel up to going again.

Sooo....a quick sum of appointments for you...

•Pre procedure covid test tomorrow (4/27) for my G tube “surgery”

•Daddy’s oncology appointment on Friday (4/29)

•Endoscopic G tube placement next Monday (5/3)

•Another covid test sometime before my J tube surgery

•J tube surgery on 5/17

Thank you for praying!!!

Taking Life One Ice Skating Venture at a Time...

Allison <3