It's Been a While.....

Hello There!

   It has been way too long since I have updated and SO much has happened.

On November 3rd I had to get my Hohn line replaced under anesthesia after the cuff had come out the week before.  Well, I woke up from anesthesia and the bandage wasn't hardly covering the line which is a huge no no because it is supposed to be sterile.  So my sister ended up changing the bandage before we left the hospital.  By the next morning, I was quite miserable, but figured it was just "one of those days"...by that evening, I knew something wasn't right and felt as though I had a fever.  I took my temperature and sure enough, I had a slight fever.  I kept feeling worse and worse and I headed to the ER when my temp had risen over 102.  I didn't really have much if any discharge from my line, but I knew something wasn't right because I don't just get fevers all the time.  As soon as I arrived at the hospital I was taken back for a sepsis work up.  They did a full screening and didn't really find any cause for the fever so they concluded I probably had a virus and they would just admit me for observation to make sure my blood cultures came back negative and my fever didn't go up or anything.  My fever actually broke for the first 24hrs and then, very suddenly, I took a turn for the worst and became very ill, very fast.  I started having a harder time breathing and my temp began soaring and becoming out of control.  They had me on IV tylenol, stripped me of my covers, and packed me in ice.  They had done a flu swab and were completely convinced I had the flu so they didn't begin antibiotics.  I, on the other hand, KNEW I was not sick like "virus sick"...I knew something even more major was going on!  By the time my blood cultures came back positive my temp had gotten up to 104.8 and I was a very sick girl.  I didn't even know the extent or severity of my situation at that time.  I was so miserable, couldn't eat, couldn't breathe well, was in horrendous pain, and FREEZING thanks to the nurse and her ice!  The breathing difficulty ended up being some of the infection that had gone to my right lung.  All I know is that sepsis is nothing to mess with and a temp of 104.8 is NOT fun!  That is the highest temperature I have ever had in my life.  Once the cultures came back positive, they began a strong IV antibiotic, removed my line, and did an echocardiogram (ultrasound of the heart) to check and make sure no infection was hiding out in my heart.  The echo showed a small mass in my heart which could either be some infection or a piece of blood clot.  Once I was stable, they put another Hohn in the opposite side of my neck, monitored my cultures to make sure they were negative, and sent me home on a strong IV antibiotic for 4 more weeks.  God has a reason for sparing my life that week, and I trust He will fulfill that purpose with my life.

My GJ feeding tube continues to dislodge and coil in my stomach instead of staying in my intestines. It has gotten to the point that something has to be done.  So we decided that I would get a G tube into my stomach through my stoma (hole for tube) and get an NJ through my nose like I had in the beginning.  However, when my GI went in to place the NJ endoscopically it would no longer fit through my nose because my sinus cavity was too closed off.  Our guess is it has scar tissue from having the trauma from the NJs for over a year.  She had already removed my GJ and replaced it with a G so she threaded a J through it and secured it with a clip in my intestines.  The J ended up backing out of the G and coming out of place.  I had an appointment with my GI and she told me my only choice was really just to get a straight J tube that would go straight into my intestines instead of through the stomach.  I went back to my surgeon who has done most of my tube surgeries in the past and he still was NOT keen on the J tube idea and went into much detail as to why he really didn't want to put me through life with a J tube.  He then came up with the idea that he was going to do research and find an extra long tube and surgically thread it way down into my intestines to see if that would work.  So I'm scheduled to get that done on January 29th at 11:00.

I have a tooth that I had a root canal done on in 2012 or 2013 and it has been causing me issues off and on ever since.  SO, they have declared it a failed root canal and have to remove it.  Since I can't have local anesthetics nor the moderate sedation drugs, I am scheduled to have it surgically removed under general anesthesia at UNC Chapel Hill on February 6th at 8:30.

My whole family has been battling a ruthless bug since the beginning of December and seems like just as some of us are improving the others decline again.  Just please pray we can shake this sickness and get better especially with my surgeries coming up...they won't do it if I'm still sick/airway compromised.

I hope y'all had a very Merry Christmas!  I did even though it was difficult this year.  I just really miss Hannah around this time of year.  She loved Christmas and oh what I'd give to have her here with me for just one more!  She got to celebrate Jesus' birthday right there with Him and I know one day we'll both be there together...it's just the wait that is a bit difficult.  Fly high, Butterfly!  We love you! <3

Have a wonderful New Year, friends!  Thank you so much for praying and faithfully following my journey!

Taking Life One Surgery at a Time,
                                   Allison

Endoscopy Results + Some...

Hello There!

     My endoscopy went well.  The anesthesia team did very well with me, and I woke up normally.  My stoma (hole for feeding tube) is completely healed, so she okayed me to go back to normal care! :)  After my last update, my tube began acting as though it had flipped into my stomach again, and when my GI did the endoscopy she found that it was all coiled in my stomach instead of being in my intestines where it belongs.  So she went ahead and put it back in place while she was in there.  It worked great for my meds the next morning but by that evening it wasn't working so amazing.  It feels as though it is, yet again, coiled in the stomach instead of being in the intestines.  Rrrgh!  I have an appointment to get my GJ tube checked tomorrow morning at 8:30.  If it is out of place again (of which I'm certain!) they will have to replace it and put it back where it belongs.  This will make the 3rd time within 2 weeks for my tube to be put back where it belongs.  Did I hear someone say superglue??! ;)  I am grateful that at least it isn't any serious complication that requires anesthesia to fix...just a little discomfort and pain and then its over.  It has been a bit humorous how many times I've been questioned by doctors, nurses, techs, and scheduling staff as to whether or not I can do it without anesthesia.  See, the times I had anesthesia due to painful complications with my tube they've just put it under the regular "feeding tube exchange" in the records without an explanation.  So they see "feeding tube exchange" with anesthesia and automatically think I have to have anesthesia for every tube change.  I'd hate to say how many times I have explained those instances where I had to have anesthesia and inform them that under normal circumstances I'm not knocked out.......that would be nice though! LOL! ;)

Never a dull moment in my life!  I actually wonder what a dull moment actually feels like......;)

Taking Life One Crazy Adventure at a Time,

                                                        Allison

Hi friends!

        Since my last update I was admitted to the hospital once due to my feeding tube falling out in the middle of the night since my GI said to deflate the balloon to help my stomach heal.  Yeah, not smart!  The stoma (hole for feeding tube) had shrunk so far that I could only get a tiny trach tubing (that my home health nurse brought from an emergency trach kit) into the stoma to hold it open.  SO, over 48hrs after losing my tube, I got it replaced.  Anesthesia didn't pretreat me before putting me under, which resulted in me not waking up even to painful stimuli (or so they tell me) until they gave me rescue meds.  It's pretty amazing how IV benadryl can wake a body up after anesthesia!  What happens is the mast cells in my body release mediators that can cause me to be sedated and the only way to reverse that is by giving me Benadryl.  If I hadn't woke up when I did, they were going to transfer me from the observation unit to the ICU step down to give me epinephrine.  Thankfully, my body did respond, and I woke up.....with my mom and my nurse both standing over my bed staring at me! LOL!  I tell you - there are few things that are more confusing than waking up to that without a clue of what had been going on!  The next day, I was well enough to return home with a good working tube.

On the 3rd of October, I went to give myself my morning oral meds through my GJ tube, and it felt as though the portion that is supposed to be in my intestines had maneuvered into my stomach (I react to my meds and formula when they are put in my stomach instead of my intestines).  I got it checked on Wednesday and it was indeed in the wrong place as I had predicted.  So, I got my tube changed out to a longer one and put back in place.  So far it's been working well.

I have an Endoscopy on Tuesday (17th) at 7:30am (arrival at 6:00am) to check up on my stoma to see how it is healing after the whole ordeal with the suspected ulcer and the balloon being lodged in the abdominal wall.  If it is healing properly I'm hoping I'll get to change the care back to normal.  Right now I have to inflate the balloon that holds the tube in place for nighttime and deflate the balloon during the day.  I have to keep the tube pushed way in at all times to keep all pressure off the abdominal wall, change the dressing 3 times a day, and keep the tube taped down good so I don't lose it again.  This irritates the skin on my tummy, and its just a big hassle.  If it isn't healing properly, I don't really know for sure what the outcome will be.  I'm guessing a whole new placement of a tube which would mean surgery, but it may be that my GI just says to give it some more time.  Anyways, just pray anesthesia does things right this time and doesn't goof up again!  I do not need them, once again, forgetting to pretreat!

Well, You probably won't hear from me until after I have the results from my endoscopy.

Thanks for your prayers!
Allison

It's Been A While! :-O

Well hello there!

     It has been over a month since I updated....again! :-|  Sorry!!

    So, I will start by letting you know that I finished my antibiotics for the staph infection on the 12th of August, got blood cultures on the 21st, and saw the infectious disease doctor on the 28th and was cleared of any infection.  These type of infections are known for their possibility to return so I'm very grateful mine didn't!

Life seemed smooth sailing for a little while and then my body decided I was having too much of a dull life and made it crazy again. ;)  I'd been having some pain at my feeding tube (different than normal) since right before my endoscopy and colonoscopy.  Then more recently started worsening.  I went to my GI to see if maybe she had some ideas.  She came to the conclusion that she thought I had a pressure ulcer in my stomach where the balloon is to hold my tube in.  She loosened my tube a bit and told me to let her know how it was in about 24 to 48hrs.  In the beginning I thought it was helping, but then the pain started to get some worse and the stoma began bleeding which isn't normal so I called my GI to let her know and see if there was something else she knew to try.  I was told to loosen it some more and they called in a prescription for a medicine that would coat my stomach and help the ulcer heal...only both brands had ingredients that I couldn't have and my stomach began dumping acid out my stoma (hole for tube) which made the pain heaps worse because I had the original pain PLUS the acid burning terribly.  I called my GI yet again to see what on earth I could do and this time asked if there was some kind of testing that could be done to figure out if it really was an ulcer and asked for a substitute medication.  I certainly didn't want to take something that I'm known to react to before knowing the exact problem!  Well, I was told that there were no other substitute medications and they could do an endoscopy to see exactly what it was and I should receive a call from the scheduler.

During the time I was waiting on the scheduler to call, I had my regular local hematologist appointment on August 31st which didn't have amazing news.  My slowly worsening anemia has gotten low enough to start concerning my doctor.  He scheduled me to have a blood draw 2 weeks from that day to check my hemoglobin to make sure I don't drop low enough that I need a blood transfusion.  He wondered if the tube situation could be a bleeding ulcer that was the root cause of my anemia and was glad my GI was going to do an endoscopy.

SO, we get a call from my GI's scheduler who could get me in on September 7th but that was at a hospital where I've never done very well with their anesthesia.  Who knows why, whether it's use of things they aren't supposed to or just different brands of the medications which can cause conflict with my mast cells.  They're also the hospital who, for those who remember, bummed up the tube surgery where the balloon ended up blocking the stomach door and then wouldn't help me after the mistake and left me suffering until I could find someone who could help fix the problem they caused.  No, I'm not bitter and I don't hold a grudge -- but I'm not dumb enough to be flippant either!  The next available appointment was 3 weeks later and that still wasn't at "my" hospital.  I was ready to take whatever because I was becoming quite desperate by that point.  When my GI heard why I didn't want to go to the first hospital, she didn't want to do it anywhere but at "my" hospital.  That made the endoscopy be postponed until October 10th.  Eeek! :(  My GI's nurse said she was going to be working to see if she could get it any sooner and watch for cancelations.  I called her to check on things several days later and was informed that she couldn't get me in sooner so I'd have to take the appointment on the....oh, that ones been taken so the next time is October 17th.  I was outraged and in hysterics as soon as I hung up the phone because they hadn't reserved the October 10th slot while they tried to get me sooner.  I couldn't wait any more.  The pain had reached excruciating, it was now bleeding continuously, swollen, and stuck (should freely move in and out when messed with and it wasn't!).

Can't believe Ezra is 4!!  Happy Birthday, Roo!

I hung on until the afternoon of the 8th because that was my sister's and Ezra's birthday and I wanted to be home and Ezra to get to be home this year for the celebration instead of in the hospital like last year.  As soon as presents were opened and their dinner was eaten, I had everything packed and ready to head to the ER.  There was no way I could make it over a month. I literally was in more pain than I've had with any of my 3 feeding tube surgeries!  I couldn't get comfortable, I couldn't hardly sleep (very interrupted by pain and only 4hrs at max).  I didn't know what was wrong, but I knew something was majorly wrong!  I had discontinued feedings for the few days prior to going to the hospital because I was concerned that it might be going to the wrong place (like outside the stomach or intestines) with how much it was hurting...and I'm glad I did as I'll explain in a minute.  I got to the ER and it felt like AGES before they got me back, but that wasn't actually the case.  I wanted to SCREAM when the doctors were examining my belly and feeding tube!!!  Especially when the one doctor tried to push the tube in and twist it...... all the while saying to himself "Huh, it is kinda stuck..."  I really felt like saying " Well DUH, I just told you that!" ;P  Anyways, even after 100mg fentanyl no one could touch it without causing excruciating pain.  They decided to do a CT scan to see if maybe there was an infectious process going on.  They wanted to do contrast, but CT dye is NOT safe for me.  So they gave in to doing a non-contrast CT even though they didn't think they could see as much as they wanted.  When the results came back they had a better idea of the problem... and, in my opinion, found everything they needed to!...  An ulcer which had eaten away causing the balloon to end up in the abdominal wall, inflammation, mesenteric lymphadenitis (inflammation of the lymph nodes in the belly)...among other things.  I'm very glad I stopped feedings when I did because it could have posed quite the danger of putting the formula where it wasn't supposed to be going.  I was in pure misery and VERY thankful that they found the problem!  I was admitted to the hospital Friday evening, had my feeding tube fixed under anesthesia on Saturday, and then they kept me until Wednesday evening to make sure an infection didn't show up and that my pain was under control.  The new feeding tube is really loose and pushed in to keep all pressure off of the ulcer and stoma in hopes they will heal.  I saw wound care while I was in the hospital and I have to pack the stoma with a special super absorbent dressing to prevent leakage and acid from coming out of my stomach and burning my skin.  I tell you...stomach acid on the skin feels like what I imagine it would feel like to pour battery acid over your stomach!  Anyways, for 5 more weeks I have to do dressing changes at least 3 times a day, keep the tube pushed in, and wear an abdominal binder for comfort and to hold the tube steady where it won't move a lot and rub on the stoma, causing granulation tissue.  My pain is decreasing as time goes by and I'm hoping it will go ahead and heal up.  There is a chance it won't heal, but I'm hoping it will!

While I was in the hospital my hemoglobin came up a bit so my hematologist rescheduled my blood draw for this coming Wednesday to give it time to see if it was going to drop again.  I hope by fixing the feeding tube that we fixed the cause of the anemia, but we won't know until Wednesday.  Tomorrow morning I have a hospital follow up appointment with my PCP, Wednesday morning at 8:15 I have an abdominal ultrasound to check up on my liver and hepatic adenoma, and get blood drawn at 11:15.  I'm really dreading the ultrasound...Please pray for comfort during the ultrasound - it could be painful and uncomfortable with all my poor abdomen has been through lately!

1. "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."
   
   

Well, hope everyone is having a wonderful September so far!

Taking Life One Crazy Day at a Time,
                                                     Allison

                                               

There's No Place Like HOME!

On my way home.....YAY!!!

Well, after a successful trial of the new antibiotic on Wednesday morning and the continued tolerance of the following dose today.....I am HOME!  After 9 days in the hospital, there certainly is no place like home!!!  Of course, I will desperately miss all the IV pump beeping at 2am and the frequent nurse and vital checks throughout the night, but I think I can learn to live without them. ;)  Ezra is overjoyed to be back with his favorite toys and much loved freedom.  He really is such a trooper staying day and night in the hospital with me and I know I am incredibly blessed to have him!  He had to do his most important job (alerting) the other day...They had stopped my antibiotic (that requires premedication) for my Hohn procedure and then the nurse started it back afterwards (3 1/2 - 4 hours later) without a pretreat.  Well, Mr. Ezra knew my body was not having it and insisted the nurse do something.  I asked for my rescue meds because of what Ezra was telling us and the nurse was totally fine with it, but she kept hinting that maybe he was wanting on my bed or something.  I knew differently because of the tone of voice Ezra was using...it was definitely not his begging voice.  She was stunned when, right after she pushed the rescue meds, Ezra just settled right down for a nap on the couch.  Ezra never ceases to amaze me with his God given talent, and I am forever grateful to have him!

My AMAZING looking Hohn!

Anyway, I'm to continue my new antibiotic once a day until the 12th, get blood cultures drawn on the 21st to make sure the bacteria hasn't returned after being off the antibiotics, and see the Infectious Disease doctor on the 28th just to make sure everything is looking good and isn't showing signs of infection.  If all is successful, I should be done with this ordeal!  I ask that you pray that this antibiotic kills the bacteria completely and this infection doesn't return.  If it returns it could mean some pretty major consequences with my line situation.  I know the Lord knows best, but I REALLY don't need more line issues!  I'm running on VERY few (not so recommended placements) to no vein options.  On an exciting note, my new Hohn line is looking excellent!  Definitely the best a line that is in me has EVER looked! :)

Thank the Lord that I got to come home safely on IV antibiotics, didn't have to continue antibiotics for 4-6 weeks since the clot is gone, and didn't end up having the antibiotic resistant bacteria (MRSA)!!  Thank YOU for your prayers and support through this whole ordeal...it means a lot to me!

Taking Life One Thankful Moment (at HOME!) at a Time...
                                                                                        Allison

Hello friends!

     My cultures have come back clear so far and I received my new Hohn line yesterday morning.  I woke up from anesthesia in quite a bit of pain, but overall the procedure went well.  I still have 2 IVs until they are for certain that my Hohn is successful.  Before I was taken down for the procedure, I saw the ID doctor and she was quite certain that I would either go home yesterday or today, continuing my IV antibiotic for 2 weeks from the day they removed my infected line.  I was thrilled with the thought of breaking out of here..... however, that isn't taking place.

My new Hohn line.

Smiles after my Hohn procedure.

My excuse for not many updates...
it's all Ezra's fault! ;)

They are trying a new IV antibiotic today (Wednesday) because they are having a rough time regulating my current antibiotic.  My body only tolerates it at a low rate, causing each infusion to take much longer, and I need 3 infusions per day.  The new one will only need to be taken once a day and isn't so sensitive with having to monitor the levels in my body.  They plan to start me on a tiny dose to make sure I can tolerate it and, if I have a reaction, I won't have a ton of the new antibiotic to clear out of my system.  Hoping I do good with it, not only because it'll be easier, but its always nice to have more than one antibiotic option!  Anyway, sounds like I have an extended stay voucher at the Medical Inn & Suites. ;)  Hopefully only a couple more days until my "vacation" ends!  Somehow I never expected to be one that got a blood infection.... I guess its just one of those things you know could happen, but never expect it to happen to you.  I am definitely ready to be home already, but I know the Lord has a reason for me being here, and I just have to trust Him.  He knows much more than I do!

Sweet clingy Ezra after being separated from
Mommy for 3 1/2 hours for the Hohn procedure.

Psalm 142:7

"Bring my soul out of prison, that I may praise thy name: the righteous shall compass me about; for thou shalt deal bountifully with me."

Hey!

My Hohn that backed out.

    This post is way overdue!  I'm going to try my best to fill you in... SO, I made it 4 months after my Hohn placement without any blood clots.  My body somehow detached itself from the cuff on the Hohn and the line began backing out.


  On Tuesday (July 18th) I went in to have it exchanged and, due to the wire coming out of the placement, ended up having to have a completely new site made......which was a nightmare (I'm allergic to all local anesthetics) that I NEVER want to repeat!!  Let's just say they WILL be doing anesthesia for new Hohn placements from here on out!  So, moving on... the pain only worsened for several days and I couldn't turn my head, my neck was quite swollen, and I thought I had a blood clot.  Well, on Friday (July 21st) I ended up going back to get it checked out and there was indeed a clot.  It was small and at the site and the radiology PA felt that it was probably caused by inflammation in the vessel due to the trauma of the placement and was hopeful that it would dissolve.  I began warm compresses, rest, and lots of prayer just really hoping it wouldn't grow.  On Monday evening (July 24th) it suddenly began rapidly improving.  Swelling went down, I could move my neck, and I even got to sleep on my right side!  I went to bed rejoicing in all the improvements.  Little did I know that Tuesday morning (July 25th) would be like it was.

Drainage on my Hohn dressing.

Chillin' in the hospital with my Ezra.

I woke up feeling completely miserable and just knew I had a fever.  Well, I was right...my temp was 100.9 which is quite high for me (I'm usually "hypothermic" ;)).  I wasn't quite sure what it was stemming from, but was quite concerned for my line which had been draining for a couple days.  My temp got up to 102.0.  We called my hematologist who takes care of my line to see what we should do.  He initially wasn't too concerned and thought maybe I had a cold but decided, since I couldn't get in with my PCP, that he would see me. The game changed when he actually saw things.  He checked me out and knew I didn't have a cold.  They took the bandage off and he knew it was most likely stemming from a line infection.  They drew blood cultures and admitted me to the hospital for antibiotics.  My cultures came back positive for a staph infection.

Pick a line, any line!  Before my Hohn
was removed...IV, Midline, and Hohn.

My neck after the Hohn was removed.

This resulted in having to have a midline and IV placed and

Thrilled after finally getting
a shower.

my Hohn removed and cultured.  That culture has also come back positive for staph so that confirmed that the infection came from the line.  With me having a blood clot, the infectious disease (ID) doctor said I would have to have 4-6 weeks of antibiotics because the clot could also be infected, but they did a repeat ultrasound over the weekend, and the clot has dissolved, so that could work in my favor.  ID said this morning that I may only need 2 weeks of antibiotics instead of 4-6 weeks since the clot is gone, but I won't know her decision for sure until tomorrow.  I had repeat blood cultures done the day before my line was removed and they're pretty sure they will be coming back negative, but they did another set today to make sure they didn't release more bacteria when removing the line.  If all is clear, I will (Lord willing) be getting a new line tomorrow.  If those cultures come back positive before morning, the procedure will be postponed until I'm clear of infections for 72hrs.  If all goes as planned, I should have a new line placed under anesthesia tomorrow!  I'm unsure if I will have to stay inpatient for the remainder of my antibiotics or if they'll be able to work it out to where I can go home.

My sweet snuggle bug. :)

It's all a work in progress and I'll try to keep you updated.
Allison

Hi Friends!

    Well, in my last post I was getting ready to start the colonoscopy prep.  That went as well as could be expected.  Anyone who has been through it will know what I mean! ;)  Thankfully it didn't cause any big acute issues.  I also made it through the endoscopy/colonoscopy.  I was trying to wait to update until I had some final results from the biopsies...Unfortunately, I lost track of time and it's been about 3 weeks.  Sorry!  I probably should've given you all I knew and then added on later.  Ya know what they say - better late than never! ;)  Anyways... I received the final results yesterday at my hematology appointment.  I don't have any bleeding, ulcers, or polyps in my GI tract.  I had some redness in my stomach, but the biopsies of that were normal so it's nothing to worry about.  The stomach biopsies that they stained for mast cell activity came back positive...diagnosing me with Mastocytic Enteritis which means I have too many mast cells in my stomach.  This explains why I have such issues with food and have to have a feeding tube to bypass my stomach for formula and medications.  It is such a good thing to have this diagnosis!  No, I'm not saying I'm glad I have it, but if I'm going to have the symptoms, it is good that I have the name for it because, sadly, I never know when I will come across a doctor that doesn't understand and jumps to conclusions about how they don't think I really need a tube and wants to just get rid of it.  I now have proof behind the "theory" that my specialist has had from the beginning that I have too much mast cell activity in my stomach, causing me to need the tube.  My treatment doesn't change with this diagnosis, I just have a name for it now.

As I mentioned earlier, I had an appointment with my hematologist yesterday.  My anemia has slightly improved!  He's very happy that the Hohn is still working, but He is still very concerned about my clot issues.  I'm running out of access, and if they try to put PICC lines in my arms (where the clots are), they will most likely dislodge at least part of a clot which will send it right to my lung.  That is why my arms are no longer usable for PICCs.  Even though I have done amazing with this Hohn line so far, he is certain that it is inevitable that I will come to the point where I won't have any safe vein options.  He said we need a plan for when that does happen.  I was hoping we wouldn't have that conversation, because its much easier for me to put it out of mind and not grasp reality.   I explained how I'd rather risk death from blood clots than risk death from reactions.  I just don't want to spend however long the Lord has me on this earth miserable from constant reactions and ER trips from stopping my IV diphenhydramine (Benadryl) pump.  I requested that, when the time comes where I no longer have a safe access, they slowly decrease the pump and see if we can get some other way of control over the reactions and, if nothing works, then make the decision between clot complications and reactions.  I just don't want to be miserable again.  I'm uncomfortable enough with the pump, but it was pure torture and near death before the pump.  I don't think I've ever had such a difficult situation and decision like this.  I asked him if a procedure to remove the clots would be an option for me.  He said it is very dangerous and isn't very successful for older clots like mine.  So, he really didn't want to do that.

I have been protecting this Hohn line with my life.  I am pretty much home bound right now because the slightest trigger and my mast cells could easily reject this line with yet another blood clot.  I could be described as having a big case of cabin fever and a sizably bigger case of paranoia right now!  I'm seriously not really leaving the house for anything other than doctors appointments.  I've been watching church on livestream, and when I'm scheduled to do music in church, I go in close to the time for us to sing/play and be out the door right after we finish to go home to watch livestream.  It has been a bit of a strain emotionally not to be able to be out, but it's much better than being careless and getting more clots.  My sisters and I are scheduled to play our instruments on Sunday, I'm scheduled to play a trumpet solo on Wednesday, and our family leaves for a week at a camp in the mountains on the next Saturday.  Where we stay in the mountains has a reputation of stirring my mast cells up and causing PICC issues, so I'm quite concerned about my Hohn...but at the same time this is a fun time we look forward to each year.  We certainly will be leaving for home at the slightest sign of issues with my line, though.  Please pray that my mast cells won't reject my Hohn with all the upcoming exposure to triggers!

I've been very achy and tired lately.  We are going to stop my vitamin D pill for a couple weeks and see if I'm reacting to it since this started after starting the vitamin D.  If the symptoms go away, I will start it back and see if they return.  If they don't improve I will go back on it, assuming the vitamin D pill isn't the cause.

Thank you so much for praying for me and encouraging me!

1. "The Lord has promised good to me,
   His Word my hope secures;
   He will my Shield and Portion be,
   As long as life endures.
2. Through many dangers, toils and snares,
   I have already come;
   ’Tis grace hath brought me safe thus far,
   And grace will lead me home."
   - John Newton
   
   

Well, Hello There! :)

It has been way too long since I've updated and I am so sorry!  I know I should be better with keeping y'all up to date with everything....I feel like I'm constantly apologizing for making y'all wait for so long.

SO, I was discharged from the hospital on Monday, April 10th after my Hohn placement.

The following Saturday (April 15th) I got up and started my day as any other...my stomach felt a little "gooey" but I just chalked it up to extra drainage from my feeding tube.  Ezra began digging on my bed, and he has a bad habit of getting trash and taking it to my bed to eat it.  I chased him off and decided I'd get dressed and then figure out what he was after.  WELL, I went to get dressed and realized what he was after.....I was missing something very important!  My feeding tube had fallen out sometime during the night, and my stoma (hole for the tube in my tummy) was nearly closed.  We called my home health nurse, and she came out to the house, but couldn't get any of the size tubes in that she had.  So, it was off to the ER....AGAIN!  Only this time, it was my feeding tube.  I discovered that the reason it came out was because the balloon that holds it in had popped.  Anyway, when we got there, the doctor was able to fit a 10F size folly catheter (smaller than IV tubing!) in the stoma to hold it open, and admitted me into the hospital so they could give me fluids since all I could have other than formula was popsicles, and they hoped to replace it on Sunday.  Around noon or a little later on Sunday, they ended up putting me to sleep, dilating (stretching) the stoma, and getting in an 18F size GJ feeding tube like I had before.  After waking up and recovering from the anesthesia, they let me go home a little later on Sunday (April 16th).

I took a shower the next day (April 17th) and ended up getting my Hohn dressing wet, so my sister changed the dressing and discovered that one of my stitches was out.  I called radiology to see if the skin would already be adhered to the Hohn after 10 days or if I needed to get another stitch.  She was very adamant that I needed to get another stitch because "we do NOT want this line to fall out".  She stitched the one that had fallen out and decided to redo the other stitch because it was nearly out, too.  I'm just so thankful the line didn't fall out!!!  I asked her how long it takes for the skin to adhere to the Hohn and she said everyone is different.  Some have been in months when she removes them and she just has to wiggle it a tiny and it comes right out...others after a day she has to tease the tissue off of it for ages.  So it really just depends, unfortunately.

We got a call from my hematologist at the beginning of the week to inform us that he is very concerned.  My arms are full of clots.  They think my mast cells are rejecting the indwelling lines, causing clots that aren't responding to blood thinners.  I'm at a very high risk of a pulmonary embolism (blood clot in the lung) which can be fatal.  Thankfully, it seems my mast cells aren't mad about my Hohn (not yet at least).  I'm really hoping the mast cells leave this line alone!!  I'm running on VERY few options right now.  I tried vitamin D last week and have done fine with it.  Not really noticing any improvements from it, but don't plan to stop it seeing as how my level was 6!  Their next step is to try Sutent, a drug in the same family as Gleevec to see if it'll work better for me than Gleevec.  I think right now we're grabbing at straws trying to find something that will help me get off the pump and get rid of the indwelling line.  Both my local hematologist and my mast cell specialist are extremely concerned with the clot situation.  As things stand right now, I would rather stay on the pump, live happily, and possibly die from a clot than to stop the pump, be miserable suffering, and possibly die from a reaction!  But that decision won't come unless/until my Hohn becomes a problem.  Let's just pray the Hohn doesn't develop problems!!!!!

Yesterday, I had an anesthesiology appointment for the endoscopy and colonoscopy.  Coincidentally, I got the same anesthesiologist who I had for my feeding tube, and he just put in to use my safe protocol and to follow the same recipe... he made sure nothing had changed since the tube incident and then I was good to go!  Was thankful it wasn't the normal 2 hour long anesthesia appointment repeating everything!

I start my colonoscopy prep tomorrow.  NOT looking forward to that!  We got permission from my doctor to pretreat before starting it to hopefully avoid reactions.  At least the flavor packet is separate, so I don't have to have that extra stuff in it.  After all....my feeding tube doesn't have tastebuds! ;)

I have to be at the hospital at 10:30 Monday morning for the endoscopy and colonoscopy.  They're checking to see if I have some bleeding somewhere in my GI system that is causing me to be anemic. Crazy to have stubborn clots AND anemia at the same time!

Last night, I finally finished my life's story and awareness video.  I know I made From Rollerblades To A Wheelchair a while back, but this one is more detailed and put together much better. :)  So, please watch and learn about these rare diseases.....and feel free to share anywhere and everywhere to spread awareness!  Here's the link... https://www.youtube.com/watch?v=bMQHTdQrSg8

Thank you so much for praying for me...I certainly need it! :)

Allison

Surviving ;)

Hey!

     I made it through the procedure and now have a Hohn catheter in my neck.  I took a little longer to wake up and I'm still a bit groggy, but I'm safe....and very sore.

Still knocked out from sedation after the Hohn placement with my
precious Ezra snuggled up to me.

 

A view of the Hohn while still knocked out.

I am gaining range of motion back as the time goes by though!  They have me off of the heparin drip and back on my regular blood thinner.  The Hohn is flushing amazingly well, however doesn't give blood return at the moment.  I've had good PICCs that didn't at first due to the inflammation from the trauma of the placement so we are REALLY hoping that is the case with the Hohn!

Smiles after waking up.

My precious Ezra :)

I'm still on IV antibiotics for the cellulitis.  They are planning to finish out the 5 days so they plan to keep me until Monday.  My arm is still very swollen, but hopefully it will clear up!

A look at my right arm today...
still swollen, bruised, and a tad red.

Well, I'm off to rest some more...gotta get my beauty sleep! ;)
Allison

Catching Up....

My swollen arm where the PICC wasn't in a
vein, causing the fluid to go directly into my arm.

I am so sorry for not keeping you updated!  After my PICC line in my left arm fell out on Friday, they placed another PICC in my right arm.  They couldn't get it advanced due to scar tissue in the vein from all the clots I've had so they left it really super short.  I ended up in the emergency room on Saturday because my arm was swelling a ton and was very painful.  They discovered that the PICC was not in any vascular structure and was infiltrating (my infusion was filling my arm because it wasn't flowing into a vein).  I was admitted so I could have an IV while waiting on a new PICC.  They placed a new PICC in my right arm on Sunday morning and I went home that afternoon.

My arm on Wednesday morning.

I started having pretty severe pain in my shoulder area on Monday and by that night it was extreme, my PICC site was leaking a bit, and I was drawing a weird liquid out of my PICC.  I really didn't want to go to the ER so I opted to contact the after hours line at my hematologist's office.  Well, of course they told me to go so I ended up at the ER at 2:00am on Tuesday.  They did an x-ray and ultrasound and found a small clot on the end of the PICC.  They did heparin flushes through it and sent me home to contact my doctor when they opened.  We got home about 8:00am and called my hematologist.  They wanted me to do the heparin flushes once a week and hope it got better.  Later that day I was in excruciating pain and it was unbearable to even flush the line.  It took me at least 15 minutes to collect the courage to give myself the meds I needed all the while I was whaling in pain.  I woke up on Wednesday morning with quite a bit of swelling and a lot more drainage from the site.

My arm once I reached the ER and they
changed the dressing.  VERY swollen!

 We contacted the hematologist again and he decided to admit me for a heparin drip, possibly try a different blood thinner, and try to save the PICC line or find a better long term solution for access.  Right before I headed to the hospital, I sat down to give myself some benadryl and as I did the prep flush my bandage became soaking wet.  The saline was coming out as fast as it was going in.  I then noticed that my arm was very red from the PICC site up to the top of my shoulder.  We got to the hospital and they evaluated the situation.  They watched as I flushed the line to see how fast it was coming out onto the bandage, called my hematologist to discuss the situation, and then the doctor said it looked as though I had some cellulitis in addition to the other issues.

What happens when you have stubborn veins...
You get an IV in the inside of the wrist and the
edge of the hand!

Just chilling with all my infusions!

  SO, they finally got me admitted.  They put two IVs in - one for my benadryl pump and antibiotic (both lines joined at the base of the tubing to run together) and the other for the heparin drip.

They took me up to radiology to get the PICC exchanged only the PA said they needed to do a new placement with that vein already being blocked off by the clot.  We discussed the possibility of putting a Hohn catheter in my neck, Hickman in my chest, or try for one of the open veins in my right arm.  The decision ended up being for her to try to get the PICC in the arm, but if she ran into issues and couldn't get it to advance, we would go for the Hohn in the neck.  WELL, she tried her best to get a PICC in where it was supposed to go, but all my veins are obstructed at my shoulder and beyond so she had to leave this one short as well.  She put this one in just so we would have some IV access until tomorrow (Friday) when they place the Hohn in my neck.  I will be under anesthesia for the procedure and I've been warned that it isn't the most comfortable thing in the world to have in your neck, but right now everyone (including me) is desperate.  The PICC she placed was flowing good and even had blood return when she put it in, but within 2 hours of the placement it stopped giving blood return and one side is extremely sluggish (partially clogged).  I have been asked by several people WHY on earth they are doing the Hohn in the neck instead of the Hickman in the chest because obviously the line in the chest would be more comfortable......SO, I'll go ahead and explain...  The reason they're putting a Hohn in my neck versus a Hickman in my chest is because the cuff (material on the line to make the skin adhere to it) on the Hohn is right at the insertion whereas the Hickman's cuff is farther in.  They want to make sure I tolerate it before they go farther in.  The Hohn will be replaced for a Hickman when it wears out if I tolerate the materials.  With the Hohn they can just pull it if I react whereas the Hickman is harder to remove (incision required) in an emergency.  They are supposed to come get me at 7:30am to take me for the procedure.  I would appreciate your prayers!  My right arm is still quite swollen and red, however the pain has decreased dramatically and the redness has improved some.  Three big things you can pray specifically is that 1.) I tolerate the line and cuff, 2.) this line or the vein its in doesn't clot, and 3.) it works for a more permanent option!!!  Thank you soooooo very much for your prayers!!

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

My PICC just fell out!  We have an hour's drive to get another.  I've given myself 50mg IM Benadryl.  Please pray!!!!!!

Hey!

   I got my PICC changed yesterday but they had to use the other kind of PICC.  They got the silicone PICC line today and I'm getting it switched out again this morning.  Prayers appreciated!

Allison

Allison's PICC line is out further today than it was Tuesday.  (The nurse was here this morning to change the dressing.)  The pain is spreading as well which would indicate that the clot is growing.  We will be leaving soon to have the PICC line changed.  They think her PICC line is in the shipment for today, but if not, they will use the one made from the material they used previously.  (That they think she reacted to.)  As the nurse said, we're in a bit of a pickle.  But we know the Lord is in control.  His way is perfect.

The Adventures Of Life Continue!

Hi Friends!

       I came home from the hospital Sunday afternoon on my regular blood thinner.  The pain is decreased from what it had been in the beginning, however it is definitely still here!  Yesterday morning, one of my PICC stitches came out AGAIN.  We had appointments with our local hematologist so I decided to just mention it to him and see if they had the supplies to go ahead and restitch it (I have to use specific stitches).  They didn't, but they arranged for me to go straight to the hospital to have it done.  Sometime in the 10 minutes between that time and the time we arrived at the hospital, my PICC decided to back out a ways.  Rrrrr!  They would've gone ahead and changed it out except they didn't have a PICC in stock for me because I have to have a specific line.  They had already ordered it but it hasn't arrived.  SO, they stitched it down good in hopes that it won't back out any farther and we are currently waiting on a new PICC to come in so we can get this one switched out.  This waiting time has a risk of causing the blood clot to grow because the line is backed out and when it is changed out there is a risk of the clot breaking off and traveling to my lungs.  So yep, I'm one big risk right now! ;)

Anyways, my appointment with my hematologist went really well!  I've been having chronically low iron and hemoglobin (mild/non-emergent)...this could be either due to me slowly bleeding somewhere inside or not absorbing iron very well.  I have an endoscopy and colonoscopy scheduled on April 24th to check and make sure I don't have an ulcer or any bleeding.  Leave it to me to have a clotting and bleeding problem at the same time! ;)  We want to rule that out because if there is something that needs fixed in there, we want to know and fix it before it gets more severe!  If it isn't that then we can focus on the nutrition aspect of things to try to get some iron in me.  But we want to KNOW whether or not its just a nutrition thing and not just guess!  Hopefully sometime between getting this PICC and clot stuff straightened out and the EGD/colonoscopy I will be trying vitamin D.  That has greatly helped my sister so I'm hoping it'll help me a lot, too! :)

Taking Life One PICC Line "Catastrophe" at a Time,
                                                                   Allison

The Many Adventures Of Life...

Hi!

    I know it has been a while since I've posted.  We obviously made it home from Minnesota.  I actually haven't had a whole lot of things happening lately.  I recently started home occupational therapy to help reduce the damage I've had in my right arm from all the previous DVTs (Deep Vein Thrombosis/blood clot).  I'm hoping it helps!

I've had some issues with my PICC line stitches coming out recently - I just had to keep going back to get them redone and all was well.....Until Monday that is.  Late Monday morning, one of my stitches came out along with quite a bit of my PICC line.  By Monday night my arm was hurting pretty bad.  I and everyone else just chalked it up to the position of the partially misplaced PICC line.  They switched out my PICC on Tuesday, but the pain ended up just increasing.  SO, I decided that I needed to get it checked out since we were headed into the weekend and I certainly did NOT want to end up in the ER (aka "flu trap")!  The radiology department at the hospital said the PICC replacement itself shouldn't have caused that much pain and wanted to check it out to make sure everything was okay.   All that said, it wasn't.  I'm currently, as of yesterday evening, in the hospital on a heparin drip because they did an ultrasound that showed an extensive DVT in my left arm from my elbow to my shoulder and headed into my chest.  They were wanting to start dissolving the clot so they don't have to remove this PICC.  If it has to be removed the radiology PA said they'll have to start putting PICCs in my neck.  Yeah, no one wants that!!  They're talking about me possibly being discharged tomorrow on my regular blood thinner if they like how everything looks in the morning.  I'm still in quite a bit of pain, but it does seem a bit better when I'm sitting still.  I'm very thankful I'm able to tolerate the heparin without a reaction!  AND I'm thankful the hospital room has a DVD player.....movies are occupying most of my time. :)  Seriously, what do you do while trapped in the Medical Inn & Suites and tied to a pole??!

This beautiful song really encourages me and reminds me that the Lord is in control and will never leave me.  What an amazing thought!

Taking Life Without Any More Blood Clots (HOPEFULLY!!!),
                                                                                             Allison

Hey there!

    Our appointments went well yesterday!  He gave me some recommendations for things to try and we have appointments to go back in August.

It snowed yesterday!!!  Only for about 15 minutes and didn't stick much, but it was fun while it lasted!  Thankfully, they take good care of the roads.  They have a lot of invisible ice here....the hotel parking lot looked wet, but was solid ice.  Thankfully there were no falls in our group!  Ezra slipped and twisted his leg once but he stopped limping soon after and was back to his old self.  We went to the Mall of America for a couple things and Ezra discovered they have doggy toys in the peep store...needless to say, he now is the proud owner of a blue squeaky peep! ;)  Yes, he's spoiled and no, I don't care!  He works hard enough I figure he's entitled to some special treatment!

My flare returned last night with renewed vigor.  So I bid my one and only safe food farewell and I'm back to no nutrition whatsoever.

We are supposed to be at the airport at 4:00 (5:00 at home), we fly out at 6:10, have a 2hr layover, fly out of there at 9:50, and arrive at our final destination at 12:30am.  THEN we have about an hour to drive home.

Well, I'm off to feed Ezra dinner...

Taking Life One Mile at a Time,

                     Allison

We Made It! :)

We made it to Minnesota!  There's some snow on the ground in places and it's supposed to start snowing at 9:00 (10:00 at home) tonight.  The snow and wintery mix isn't supposed to stop until noon tomorrow.  I was SOOOOO hoping it would snow so I'm thrilled and I know Ezra will be! :)  We have a couple things to do before our appointments with Dr. Afrin at 3:00.  I think I'm going to be hitting the pillow somewhat early tonight.  Getting up at 1am is for the birds!!  Ezra is already sacked out.  He was quite confused and thought I was totally out of my mind to expect him to get out of bed and think he wanted to eat at 1:30 in the morning!  He is thoroughly exhausted.

Just to give you a little laugh.... Apparently upper midwest folks don't eat chicken livers.  We went to KFC to get me some chicken livers (good in iron which I'm low on plus they are amazing!) and when my sister ordered them the guy taking the order asks "what are those?" LOL!!  I know I shouldn't laugh, but he seriously had no clue what a chicken liver was.  It's like how deep can you go to explain the anatomy of a chicken?? ;)

Thank you to those praying about the flare I've been having.  It may be too early to say, but it's looking like I'm coming out of it!  It has given me false hope before so I may just be having a little peak.  I'm thankful even if it is just a little break!! :)  I've been able to eat a little and drink quite a bit of water (making up for the last few days of thirst) without big issues which is a huge difference from where I was!

Allison

The view of the snow from the airplane.

Valerie and me waiting to
board the first flight.

Minnesota Trip...

Sorry for such a short notice.  Lord willing, we will fly out tomorrow morning at 6:50am for our appointments with our mast cell specialist.  I have been in a rough flare since Thursday and cannot eat anything (including formula through my GJ tube) or drink more than a few swallows a couple times a day.  Please pray that I will soon come out of this flare and for us all to have a safe time!  Gotta get to bed...and get up at 1:00am! :)

Thank you in advance for your prayers!

Allison