Hey!
So they are taking me now for my Hickman placement instead of at 11! Thanks for your many prayers!
Allison
Monday, December 2, 2019
Good Bright & Early Morning! ;)
Good Morning!
Since "nervous insomnia" (as I not-so-affectionally call it) has set in, I decided I would go ahead and write an update. So, I heard late last night that my Hickman placement has been scheduled for 11:00 this morning. The only catch is that the computer didn't automatically pop up NPO (no food or drink) after midnight so that makes me question whether or not it has actually been scheduled properly with anesthesia. I am following the normal protocol of no blood thinner, formula, or drinks anyways because I do NOT want to end up delaying the procedure. Then I plan to ask my day nurse to contact radiology as soon as she is on shift to make sure everything is correct and settled for me. If I don't update again, you will know that it stayed at 11:00am...if I do update again, you'll know otherwise. I'm just watching the minutes tick by as I wait. Never fails...anytime I have a major procedure that requires anesthesia, I always end up not sleeping much at all the night before. I blame it on all the nerves and my brain going into overtime making sure I'm prepared with everything so I don't miss something, causing an issue that could be prevented! Thats mast cell life! ;) And of all times my body had to pick this evening to get miserably thirsty. Thankfully, they are running my potassium fluids now so those are helping a little
Taking Life One Sleepless, Nervous Night at a Time...
Allison
Since "nervous insomnia" (as I not-so-affectionally call it) has set in, I decided I would go ahead and write an update. So, I heard late last night that my Hickman placement has been scheduled for 11:00 this morning. The only catch is that the computer didn't automatically pop up NPO (no food or drink) after midnight so that makes me question whether or not it has actually been scheduled properly with anesthesia. I am following the normal protocol of no blood thinner, formula, or drinks anyways because I do NOT want to end up delaying the procedure. Then I plan to ask my day nurse to contact radiology as soon as she is on shift to make sure everything is correct and settled for me. If I don't update again, you will know that it stayed at 11:00am...if I do update again, you'll know otherwise. I'm just watching the minutes tick by as I wait. Never fails...anytime I have a major procedure that requires anesthesia, I always end up not sleeping much at all the night before. I blame it on all the nerves and my brain going into overtime making sure I'm prepared with everything so I don't miss something, causing an issue that could be prevented! Thats mast cell life! ;) And of all times my body had to pick this evening to get miserably thirsty. Thankfully, they are running my potassium fluids now so those are helping a little
Taking Life One Sleepless, Nervous Night at a Time...
Allison
Sunday, December 1, 2019
Good News!
Isaiah 40:29
"He giveth power to the faint; and to them that have no might he increaseth strength."
Hello Friends!Well, I have some happy news! I was able to get through the Hickman removal on Friday. It was NOT easy and I had to have so much pain medicine that it knocked me for a loop, BUT I got through it without having to delay for anesthesia!! To give you a little glimpse of what they had to do.... They had to take tweezer type things and put them up in the site where the Hickman goes in to get to the cuff, pull it (like some serious yanking) periodically as they teased and scraped the tissue from the cuff. It had been in for 2 years so it was really good and stuck! Usually they numb you up really good before doing it, but I can't have the local anesthetics. I would NOT have made it through without being medicated for sure! I ended up breaking out in hives from the trauma and stress of the removal, but other than that and a bit of soreness, it went very well.
My cultures are clear and it's looking like there is a big possibility I will get my new Hickman either tomorrow or Tuesday! They're working towards getting it tomorrow. It will depend on scheduling because they not only have to find a slot for the procedure but have to get anesthesia scheduled as well. And then, once things are lined up, I will, Lord willing get to go HOME.....and have our delayed Thanksgiving day! ;) The infectious disease doctor said as long as things remain clear, I should get to go home within 24hrs of the new Hickman placement so we're probably looking at getting home no earlier than Tuesday...but hopefully no later either! ;)
I am feeling SO much better than when I got here! The fevers, sweats, abdominal pain and hardness, and the rash are gone and I enjoyed a warm, relaxing shower this morning between church services (I watch our church's livestream). The infectious disease doctor said that the bacteria that I had is found a lot in the gut as well and she wonders if I had a little at my J tube along with the line because my abdomen is much softer where it had been quite hard about 2" around the tube. I actually thought maybe I was developing some weird scar tissue type stuff because it was so hard. She also said the bacteria I had isn't usually associated with a rash and it was probably actually my body's reaction to the infection rather than the infection itself causing it....which totally makes sense with mast cell disease!
Well, I will leave you with some comic relief.... I very vaguely remember taking the drowsy picture right after my Hickman removal...I don't remember taking the loopy (to say the least) picture that I found on my phone that was taken sometime Friday evening! :)
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| What can I say? Selfies are my nature and some meds can knock me plumb looney so put the two together and this is what you get! :) |
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| Very groggy selfie after the Hickman removal. |
I love this song! It is a good reminder that no matter what I may go through, the Lord is still right here with me and gives me strength for whatever mountains I will need to climb in life!
Friday, November 29, 2019
Hi There!
I got some more detailed information when I saw the doctors this morning. The infectious disease (ID) doctor said that the specific bacteria that came back is actually a bacteria associated with line infections. They had originally thought the infection could be stemming from the surgery they had recently done for the J tube, but it is actually from my Hickman. SO, with that said, they are going to have to remove my Hickman. They also are going to have to change my antibiotic again because the bacteria responds very poorly to the one I'm currently on. It helped me feel a bit better and kept my fevers at bay, but apparently it won't kill it off completely and you don't want to leave ANY infection behind in the bloodstream because it comes back with a vengeance and is even harder to treat.
The plan:
Taking Life One Day at a Time,
Allison
I got some more detailed information when I saw the doctors this morning. The infectious disease (ID) doctor said that the specific bacteria that came back is actually a bacteria associated with line infections. They had originally thought the infection could be stemming from the surgery they had recently done for the J tube, but it is actually from my Hickman. SO, with that said, they are going to have to remove my Hickman. They also are going to have to change my antibiotic again because the bacteria responds very poorly to the one I'm currently on. It helped me feel a bit better and kept my fevers at bay, but apparently it won't kill it off completely and you don't want to leave ANY infection behind in the bloodstream because it comes back with a vengeance and is even harder to treat.
The plan:
- Remove my Hickman since they got 2 IVs put in. They plan to give me pain medicine and try to remove it. The line has a cuff under my skin that the skin grows on to. It has been there for 2 years and they have to separate it away in order to remove the line. They are hoping doing pain medicine right beforehand will make it to where I can tolerate them removing it since I can't have the local anesthetics they normally use to numb the area prior to removal. SO, as long as I can handle it, they will remove the line today. If I can't handle it then they will have to schedule for a later time under anesthesia.
- Change my antibiotic to one that will be more successful in killing off this bacteria.
- Daily taking new blood cultures until they come back negative.
- Placing a new Hickman (under anesthesia) once the cultures are negative for at least 48hrs, but ideally 72hrs depending on how hard it is to get rid of the infection.
- Tentatively be discharged on the IV antibiotic once I have my new line. I will be on the antibiotic for 2 weeks from the time my cultures come back negative.
Taking Life One Day at a Time,
Allison
Thursday, November 28, 2019
Mystery Solved
Happy Thanksgiving everyone!
I got some answers super early this morning... my blood cultures came back positive. I have a blood infection. I’m in for the long haul. This is a different kind of blood infection than I’ve ever had. They are not sure where it came from. It is not from my Hickman. I seriously wonder if it came from my gut surgery when they placed this new J tube. But we don’t know much for definite right now. They’re having to use a different antibiotic because my other safe ones won’t kill this bacteria. Thankfully I’m not reacting to it so now I have another antibiotic to add to my safe med list! I’m supposed to see the infectious disease doctor and that is when I will find out whether or not they will remove my Hickman. What happens is the bacteria in the bloodstream attaches to foreign bodies in the vein which can lead to infection going to the heart. The doctor said she knows I want to go home, but that won’t be happening until they get everything sorted out. :(
It’s crazy how I’ve slept all night and probably at least half of the day these last couple days and I’m still so exhausted! Thankfully I haven’t spiked any fevers so far today so head and eye pain is minimal when present however I do still hurt pretty bad everywhere else. Probably all related to the infection. I’m beginning to get another headache so I’m going to close now, but I’ll try to keep y’all updated as best as I can.
I hope y’all have a wonderful Thanksgiving and I am so thankful for your continued prayers!
Allison
I got some answers super early this morning... my blood cultures came back positive. I have a blood infection. I’m in for the long haul. This is a different kind of blood infection than I’ve ever had. They are not sure where it came from. It is not from my Hickman. I seriously wonder if it came from my gut surgery when they placed this new J tube. But we don’t know much for definite right now. They’re having to use a different antibiotic because my other safe ones won’t kill this bacteria. Thankfully I’m not reacting to it so now I have another antibiotic to add to my safe med list! I’m supposed to see the infectious disease doctor and that is when I will find out whether or not they will remove my Hickman. What happens is the bacteria in the bloodstream attaches to foreign bodies in the vein which can lead to infection going to the heart. The doctor said she knows I want to go home, but that won’t be happening until they get everything sorted out. :(
It’s crazy how I’ve slept all night and probably at least half of the day these last couple days and I’m still so exhausted! Thankfully I haven’t spiked any fevers so far today so head and eye pain is minimal when present however I do still hurt pretty bad everywhere else. Probably all related to the infection. I’m beginning to get another headache so I’m going to close now, but I’ll try to keep y’all updated as best as I can.
I hope y’all have a wonderful Thanksgiving and I am so thankful for your continued prayers!
Allison
Wednesday, November 27, 2019
In {Every Thing} Give Thanks
I Thessalonians 5:18
“In every thing give thanks: for this is the will of God in Christ Jesus concerning you.”
I think I can honestly say this has been the hardest Thanksgiving season for me. Honestly, I don’t feel like being grateful. No, that doesn’t mean I shouldn’t be grateful...the Bible doesn’t say in some things give thanks...it says in everything. It is neat how the Lord orchestrates things. I have a light box in my bedroom that I can customize to say whatever I want and when I got home from the hospital after J tube surgery, I thought I would get in the thanksgiving spirit and change it to say “In everything give thanks”.....I didn’t realize just what impact that would have nearly 2 weeks later. Monday afternoon I began not feeling so great. My new J tube started hurting a bit and I started getting really achy. By Monday evening I was feeling rather crummy and the symptoms began feeling all too familiar. I told my mom that I recognized this feeling and I knew I had to be dealing with a fever. I checked my temp and sure enough, I had a low grade fever. For some reason when my temp gets in the 99s I really feel it and I’m miserable! I didn’t sleep well throughout the night and I checked it again around 2 or 3am and it got up to 100.8. Fairly early Tuesday morning I decided to take my IV Tylenol to try to knock it out. It had been a long day Monday so I was hoping that maybe it was just a matter of too many mast cell triggers that had just made my system angry. I felt fairly good throughout the day....until the Tylenol wore off. Yesterday evening (Tuesday) my temp reached 102.8 and it was determined that, against my wishes, I needed to go to the ER. When you have an indwelling central line you’re supposed to head to the ER once your temperature reaches 100.4 due to infection risks. I put it off as long as possible because I wanted nothing more than to have a good Thanksgiving AT HOME with my family and I had no desire to return so soon after finally getting home from the hospital where I had just spent nearly 2 weeks of my life! It made it even harder to leave because my little 2 year old niece has been staying with us since Saturday and when she saw me getting ready to leave she broke into tears, ran to me saying “Assin, hold you, hold you!”, and gave me a big hug. Oh, what I would’ve given not to have to leave her! :(
As of right now we still have no clue what’s going on. By the time I got to the ER last night I had a very peculiar rash on my arms and chest. They did blood cultures, chest X-rays, MRSA test,
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| The weird rash I’ve been experiencing. |
So it looks like I will be spending at least part of Thanksgiving in the hospital. I haven’t been told any plan as far as how long they may keep me. I would think it depends on test results, but I really don’t know. I would be lying if I said I’m not heartbroken and disappointed with life right now.
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| Silly Ezra on my pillow that he thinks is his. As the pillow says...no drama for this llama... well, until he doesn’t get “his” pillow! ;) |
And I’m so very thankful for your prayers on my behalf!
Allison
Psalm 138
”I will praise thee with my whole heart: before the gods will I sing praise unto thee.
I will worship toward thy holy temple, and praise thy name for thy lovingkindness and for thy truth: for thou hast magnified thy word above all thy name.
In the day when I cried thou answeredst me, and strengthenedst me with strength in my soul.
All the kings of the earth shall praise thee, O Lord, when they hear the words of thy mouth.
Yea, they shall sing in the ways of the Lord: for great is the glory of the Lord.
Though the Lord be high, yet hath he respect unto the lowly: but the proud he knoweth afar off.
Though I walk in the midst of trouble, thou wilt revive me: thou shalt stretch forth thine hand against the wrath of mine enemies, and thy right hand shall save me.
The Lord will perfect that which concerneth me: thy mercy, O Lord, endureth for ever: forsake not the works of thine own hands.“
Saturday, November 23, 2019
Home & All The Details + AMAZING News!
Hello There!
I'm back with all the details from my surgery, hospital stay, and recovery.......plus some amazing news! So....consider yourself warned....this could be a fairly lengthy post! :)
Where to begin.....
As you already know, if you've been keeping up with my recent updates, I was admitted to the hospital on Monday, November 4th with dehydration and malnutrition due to my J tube having complication and having to be removed (thus removing my only avenue of nutrition).
I had surgery to place a J tube on Friday, November 8th. They were originally hoping to reopen my previous stoma (hole for tube) and place the J tube, but due to complications with that stoma, they had to make a new site. As some may remember, a few weeks after my first J tube surgery, I bent over and felt like someone had kicked me in the gut.... Well, that was most likely some of the stitches snapping that were holding the intestine to the abdominal wall. Unbeknownst to me, this placed me in quite a bit of danger. This "malfunction" can allow the J tube to twist, causing life threatening complications. No one seemed to know this until they went in to place this new tube and found how messed up it was. So, they tacked this one farther, going all the way through to the skin, and I am determined to follow rules no matter how horribly difficult to avoid causing the same complications. Those rules?....no lifting more than 15lbs, gentle bending, and limited exertion for 8 weeks post op! Yeah, that is torture when you have little nieces coming in for the holidays! The littlest is right at 15lbs now so I can still carry her, but the adorable nearly 3 year old is way over my limit and it kills this auntie's heart when she comes up with outstretched arms saying "hold you? hold you?" wanting me to pick her up! :'( Probably by Christmas the little 5 month old will be over my limit, too. But I do NOT want to mess this tube up after all I've been through the past couple weeks!!
When I came out from surgery, I was itching terribly! I kept telling my mom and sister that I was just SO itchy....upon investigation, they realized I was covered in hives. Both myself and the hospital made a mistake. I react to the hospital linens (probably what they launder everything in) so I always bring my own sheets, pillow cases, covers, gowns, towels, etc. I made the mistake of putting a white sheet on my bed and the hospital OR staff didn't realize the sheet was mine. So they did as they always do...they switched my bed out and put me on a fresh one after surgery. Only the fresh one was the hospital's sheets so I was breaking out in hives from being on the wrong sheets. NOT fun because they had to roll me to change my sheets back to some of my own. If you've ever had gut surgery you will know just how much you do NOT want to even be touched after surgery let alone rolled around! Then they gave me a little milk to drink after I had gotten settled in with the right bedding. Only I fell back asleep from the combination of pain meds and leftover anesthesia, pouring it all down my front which meant having to get my gown changed. By this time I was bawling my eyes out because I just wanted left alone. But, after all was settled and done I wasn't much worse for the wear.
Fast forward to a couple days later... There is this one brand of chicken broth I can tolerate (it comes straight back out via my stomach drain like everything else). My sister went to Whole Foods but all they had in stock was the low sodium kind. I figured I would just add some salt. I poured some, added salt only to realize it still needed more, so I added even more salt. I then tasted it and it was way too salty so I went to shake the broth before adding more only I forgot I hadn't put the lid back on the broth....yup, I showered myself in chicken broth! My hair was stuck together like lard and my eyelashes were dripping! I must say, chicken broth never was a good hair product and definitely smells much different when you are wearing it! My sister happened to be on the phone with a nurse when it happened and couldn't talk because she was laughing so hard! We got a BIG laugh which wasn't the best idea in the world for me at the time! On top of laughing so hard with a very painful gut, I had to get my hair washed which ended in tears for a while, but I felt much better after some pain relief! It does make for a very funny story now, though, and will make a fun memory when remembering this whole ordeal in the future! ;)
I was in the hospital until Friday, November 15th. I had originally been told that my feeding rate had to be at 65ml/hr in order for me to go home, however, they changed it the next day to 100ml! Talk about crushing someone! I had worked so hard and had it to 65 by the next morning only to be told I still couldn't go home because it had to be at 100. I was thankful that they decided that I could go home Friday afternoon as long as I was continuing to up my rate since they could see I was no longer malnourished.
The first couple days at home were rough just with having the bumpy ride home, moving around more, and not having the access to much pain relief, but as time passed, things started improving. As of now, my incisions are healed and free of pain. My tube site is still rather tender and is my main source of pain. I'm still having some spasming in the muscle they had to put the tube and stitches through, but they are slowly improving and becoming fewer and farther between as the muscle gets used to having those things there. Healing from J tube surgery is a very prolonged process. It may sound strange, but I'm grateful that I have been through it before so at least I know what to expect and I can keep encouraged knowing even though it takes a while, it gets better and is worth the struggle!
Now.....for the AMAZING news that I mentioned above.........
I officially have a new formula that I tolerate!!!! It is called Real Food Blends and is actually JUST real food pureed into a super smooth and thin formula specifically for tube feeding! I have to dilute it some so as not to clog my J tube and add salt to get the appropriate level of sodium for my body, but I am SO grateful that the Lord provided some good nutritionists in the hospital while I was inpatient who actually searched and found something for me to try....and it WORKED! I'm on my second day and not only have I not had even the slightest hint of a reaction to it (I was miserable within the first 2 hours with the previous formulas that I reacted to), but I'm actually feeling better!
I'm not completely out of the woods yet. I still have some pain from surgery, limitation for a while longer due to the new tube, have to build my formula intake to the amount I need, and easily overdo it, but I am so, so, so grateful for the leaps and bounds I've made in the right direction! I can't thank you enough for your many prayers on my behalf...He is listening and I am seeing lots of "yes" answers!
My struggles that could use some prayer right now...
Feeling better makes it very easy to over do it! I get carried away with doing everything I've wanted to do for a while now and I forget to pace myself and pay attention to what my body is trying to tell me which makes for misery when everything comes crashing down on me all at once.
My body has rediscovered the desire to eat. Don't get me wrong... I am SO grateful not to be constantly nauseated and miserable (and I have no desire to return)! However, it is difficult when your brain greatly desires the pleasure of eating, but it's impossible for your body to accomplish the task! Especially with Thanksgiving right around the corner. I have been on a liquids diet for a while now since it drains the fastest due to the state my stomach has been in. It is going to be VERY hard at Thanksgiving to restrict myself to only foods that will drain. My stomach is worse this year than it was last year so anything that won't drain is pretty destined to cause vomiting. Honestly, I probably shouldn't do any of it. I have decided it only comes once a year so I will let myself have some, but I will definitely be forced to leave out some favorites. It's pretty guaranteed that I will suffer consequences, yes, but I have deemed it worth it as long as I use a lot of self control in my choices....I'm afraid I would no longer think it was worth it if my Thanksgiving ended with vomiting!
Please continue to pray as my journey continues! I'm thrilled beyond words to get to write this update....there is nothing quite like getting to share such exciting news! :)
Taking Life One Happy Update at a Time...
Allison
I'm back with all the details from my surgery, hospital stay, and recovery.......plus some amazing news! So....consider yourself warned....this could be a fairly lengthy post! :)
Where to begin.....
As you already know, if you've been keeping up with my recent updates, I was admitted to the hospital on Monday, November 4th with dehydration and malnutrition due to my J tube having complication and having to be removed (thus removing my only avenue of nutrition).
I had surgery to place a J tube on Friday, November 8th. They were originally hoping to reopen my previous stoma (hole for tube) and place the J tube, but due to complications with that stoma, they had to make a new site. As some may remember, a few weeks after my first J tube surgery, I bent over and felt like someone had kicked me in the gut.... Well, that was most likely some of the stitches snapping that were holding the intestine to the abdominal wall. Unbeknownst to me, this placed me in quite a bit of danger. This "malfunction" can allow the J tube to twist, causing life threatening complications. No one seemed to know this until they went in to place this new tube and found how messed up it was. So, they tacked this one farther, going all the way through to the skin, and I am determined to follow rules no matter how horribly difficult to avoid causing the same complications. Those rules?....no lifting more than 15lbs, gentle bending, and limited exertion for 8 weeks post op! Yeah, that is torture when you have little nieces coming in for the holidays! The littlest is right at 15lbs now so I can still carry her, but the adorable nearly 3 year old is way over my limit and it kills this auntie's heart when she comes up with outstretched arms saying "hold you? hold you?" wanting me to pick her up! :'( Probably by Christmas the little 5 month old will be over my limit, too. But I do NOT want to mess this tube up after all I've been through the past couple weeks!!
When I came out from surgery, I was itching terribly! I kept telling my mom and sister that I was just SO itchy....upon investigation, they realized I was covered in hives. Both myself and the hospital made a mistake. I react to the hospital linens (probably what they launder everything in) so I always bring my own sheets, pillow cases, covers, gowns, towels, etc. I made the mistake of putting a white sheet on my bed and the hospital OR staff didn't realize the sheet was mine. So they did as they always do...they switched my bed out and put me on a fresh one after surgery. Only the fresh one was the hospital's sheets so I was breaking out in hives from being on the wrong sheets. NOT fun because they had to roll me to change my sheets back to some of my own. If you've ever had gut surgery you will know just how much you do NOT want to even be touched after surgery let alone rolled around! Then they gave me a little milk to drink after I had gotten settled in with the right bedding. Only I fell back asleep from the combination of pain meds and leftover anesthesia, pouring it all down my front which meant having to get my gown changed. By this time I was bawling my eyes out because I just wanted left alone. But, after all was settled and done I wasn't much worse for the wear.
Fast forward to a couple days later... There is this one brand of chicken broth I can tolerate (it comes straight back out via my stomach drain like everything else). My sister went to Whole Foods but all they had in stock was the low sodium kind. I figured I would just add some salt. I poured some, added salt only to realize it still needed more, so I added even more salt. I then tasted it and it was way too salty so I went to shake the broth before adding more only I forgot I hadn't put the lid back on the broth....yup, I showered myself in chicken broth! My hair was stuck together like lard and my eyelashes were dripping! I must say, chicken broth never was a good hair product and definitely smells much different when you are wearing it! My sister happened to be on the phone with a nurse when it happened and couldn't talk because she was laughing so hard! We got a BIG laugh which wasn't the best idea in the world for me at the time! On top of laughing so hard with a very painful gut, I had to get my hair washed which ended in tears for a while, but I felt much better after some pain relief! It does make for a very funny story now, though, and will make a fun memory when remembering this whole ordeal in the future! ;)
I was in the hospital until Friday, November 15th. I had originally been told that my feeding rate had to be at 65ml/hr in order for me to go home, however, they changed it the next day to 100ml! Talk about crushing someone! I had worked so hard and had it to 65 by the next morning only to be told I still couldn't go home because it had to be at 100. I was thankful that they decided that I could go home Friday afternoon as long as I was continuing to up my rate since they could see I was no longer malnourished.
The first couple days at home were rough just with having the bumpy ride home, moving around more, and not having the access to much pain relief, but as time passed, things started improving. As of now, my incisions are healed and free of pain. My tube site is still rather tender and is my main source of pain. I'm still having some spasming in the muscle they had to put the tube and stitches through, but they are slowly improving and becoming fewer and farther between as the muscle gets used to having those things there. Healing from J tube surgery is a very prolonged process. It may sound strange, but I'm grateful that I have been through it before so at least I know what to expect and I can keep encouraged knowing even though it takes a while, it gets better and is worth the struggle!
Now.....for the AMAZING news that I mentioned above.........
| Nap time snuggles with my little niece, Valerie :) |
I'm not completely out of the woods yet. I still have some pain from surgery, limitation for a while longer due to the new tube, have to build my formula intake to the amount I need, and easily overdo it, but I am so, so, so grateful for the leaps and bounds I've made in the right direction! I can't thank you enough for your many prayers on my behalf...He is listening and I am seeing lots of "yes" answers!
My struggles that could use some prayer right now...
Feeling better makes it very easy to over do it! I get carried away with doing everything I've wanted to do for a while now and I forget to pace myself and pay attention to what my body is trying to tell me which makes for misery when everything comes crashing down on me all at once.
My body has rediscovered the desire to eat. Don't get me wrong... I am SO grateful not to be constantly nauseated and miserable (and I have no desire to return)! However, it is difficult when your brain greatly desires the pleasure of eating, but it's impossible for your body to accomplish the task! Especially with Thanksgiving right around the corner. I have been on a liquids diet for a while now since it drains the fastest due to the state my stomach has been in. It is going to be VERY hard at Thanksgiving to restrict myself to only foods that will drain. My stomach is worse this year than it was last year so anything that won't drain is pretty destined to cause vomiting. Honestly, I probably shouldn't do any of it. I have decided it only comes once a year so I will let myself have some, but I will definitely be forced to leave out some favorites. It's pretty guaranteed that I will suffer consequences, yes, but I have deemed it worth it as long as I use a lot of self control in my choices....I'm afraid I would no longer think it was worth it if my Thanksgiving ended with vomiting!
Please continue to pray as my journey continues! I'm thrilled beyond words to get to write this update....there is nothing quite like getting to share such exciting news! :)
Taking Life One Happy Update at a Time...
Allison
Wednesday, November 13, 2019
I'm Still Alive! ;)
Hi There!
I'm so sorry for not updating the last few days. I am still in the hospital, however nearing my goals that have to be met before discharge! If I'm calculating correctly, today marks day 10 inpatient. To say I am ready to go home would be an understatement!
My GJ tube was swapped out for just a plain G tube on Saturday and my 6 little laparoscope incisions from J tube surgery are healing up nicely. I like where they placed this new J tube better than my other J tube because they did it a little lower whereas my previous tube was directly under where my waistband always landed.
The two goals I must reach before discharge are #1. 24hrs without the high powered IV pain medicine and #2. getting my tube feeding to the desired rate. On my own, I've been pushing the pain med out over 8hrs between doses and today the doctor bumped it to every 12hrs so it'll be there if I need it, but its very spread out because we certainly don't want my body to get hooked on it! The goal feeding rate is 65ml per hour around the clock and I'm currently at 55ml. I'm SOOOOOO close!
I'm really hoping to get to go home by Friday....So, I'd appreciate my prayer warriors praying for that goal! After this long in the hospital, I am REALLY ready to be free and finish recovery at home (and I know Ezra has the very same sentiments as I do!)! :)
Taking Life One Hospital Day (hopefully not too many more!) at a Time...
Allison
Saturday, November 9, 2019
Hi there!
I’m sorry this will be short, but I’m on pain meds which makes it difficult to stay alert and keep a train of thought very long. Surgery went well. They had to create a new site due to the old one not being suitable. I have 6 small incisions from the laptroscopes they used and then, of course, the new tube site. The pain is rough which is to be expected when you have stitches and incisions through your abdominal muscles. I’m very proud of my Ezra - he has been a very good boy, however, super clingy. He is determined that there will be NO ONE taking his mommy today! He refuses to get off my bed and is just snuggled up to me. Poor fella is in for a rude awakening when I have to go to radiology to have the GJ swapped out for a G. They actually planned on doing it while I was in surgery, but for some reason they couldn’t. It’s no big deal, though....literally just removing the GJ and sliding a G tube through the hole I already have in my tummy.
Anyways, thank you for praying and coninueing to pray for me!
Allison
I’m sorry this will be short, but I’m on pain meds which makes it difficult to stay alert and keep a train of thought very long. Surgery went well. They had to create a new site due to the old one not being suitable. I have 6 small incisions from the laptroscopes they used and then, of course, the new tube site. The pain is rough which is to be expected when you have stitches and incisions through your abdominal muscles. I’m very proud of my Ezra - he has been a very good boy, however, super clingy. He is determined that there will be NO ONE taking his mommy today! He refuses to get off my bed and is just snuggled up to me. Poor fella is in for a rude awakening when I have to go to radiology to have the GJ swapped out for a G. They actually planned on doing it while I was in surgery, but for some reason they couldn’t. It’s no big deal, though....literally just removing the GJ and sliding a G tube through the hole I already have in my tummy.
Anyways, thank you for praying and coninueing to pray for me!
Allison
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| Good morning! I look a little dazed in this pic, but you’ll just have to excuse me... I just had pain medication. |
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| My sweet Roo Bug (Ezra) snuggled up to me after surgery. |
Friday, November 8, 2019
Just a quick update.... they plan to have me in the OR by 8. I’m already down getting registered. I really appreciate your prayers!
Allison
Allison
Thursday, November 7, 2019
Answered Prayers (Surgery Scheduled)
"When the storms of life are raging, stand by me;
When the storms of life are raging, stand by me;
When the world is tossing me like a ship upon the sea
Thou who rulest wind and water, stand by me.
In the midst of tribulation, stand by me;
In the midst of tribulation, stand by me;
When the hosts of hell assail, and my strength begins to fail,
Thou who never lost a battle, stand by me.
In the midst of faults and failures, stand by me;
In the midst of faults and failures, stand by me;
When I do the best I can, and my friends misunderstand,
Thou who knowest all about me, stand by me.
When I’m growing old and feeble, stand by me;
When I’m growing old and feeble, stand by me;
When my life becomes a burden, and I’m nearing chilly Jordan,
O Thou
Lily of the Valley,stand by me."
— Charles A. Tindley
-----------------------------
I have much news to report... First of all, we got a room last night and I finally got a nice, warm shower! It about half killed me but oh, how it feels so good to be clean! My heart rate went over 150bpm just from a sit down shower because I'm so malnourished. I guess it's no wonder since I've only had about 335 calories in 2 weeks.
Anyhow, right after we got up to the room, one of the surgeons came to discuss things with me. As long as everything goes as planned and its healed up good, they hope to be able to use the same stoma (reopen the previous hole) for this new J tube. Again, it will all depend on how the healing went because we certainly don't want to do that if its going to mean that the new tube will fail right away! I am SO ready to go back to having a separate G and J tube!!!......Yet, I'm not too ready for the surgery/recovery part! ;)
I have yet to meet the actual surgeon who will be doing my surgery, but someone from the anesthesia team came this evening to get some info finalized. The surgery is officially scheduled at 10:30am tomorrow as long as nothing comes up. They said I'll actually meet the surgeon and anesthesiologist tomorrow before surgery.
Please Pray...
- I would get a good surgeon who will do a good job.
- I would get a good anesthesia team who will do what I need and be careful.
- Strength for me both mentally and physically as my body is literally running on hardly anything. (They plan to start me on some fluids this evening to replenish a little prior to the procedure.)
- Strength, comfort, and courage for my family and precious alert dog, Ezra. I know it isn't easy on them when I go into surgery.
- Good recovery and a successful tube surgery!
Taking Life One Minute at a Time Til Surgery...
Allison
"...The things which are impossible with men are possible with God"
Luke 18:27
Wednesday, November 6, 2019
Hospital Day #2....
Well, hello there!
Long time, no see! :) Y'all have been so amazing with your comments and many prayers......I can't thank you enough!
I'm still in the hospital. I saw the GI yesterday morning and he ordered a KUB (abdominal X-ray) just to confirm the exact position of the tube. Later yesterday afternoon, I saw the hospitalist who told me that the result of the X-ray was that the tube was in the right place. He said for that they recommend a slower rate or a different formulation of formula. I did a super slow rate when I started my formula after they put this GJ in so that was useless. When he left, I cried....and cried....and cried some more because I knew it's out of place and I've had it to where it doesn't look out of place on X-ray because I can't have contrast dye plus, with this girl, when you combine malnutrition, exhaustion, and disheartening news you just have yourself a regular waterpark! ;) The GI came in this morning and followed up on the X-ray. He said in all actuality the J portion of the GJ is only barely into the intestines and mostly coiled in the stomach. This can cause feeds to easily reflux back into the stomach. Long story short, GI told the hospitalist to go ahead and get the surgery team on board for a J tube consult.
——————————————————————————
A few prayer requests...
• The hospitalist will agree to go ahead and bring in the surgery team for a J tube
• A good surgeon who is willing to do the J tube
• Strength as this rocky journey continues
• A regular hospital room (with sleeping arrangements for my family, a bathroom and, more specifically, a shower!!) to come available really soon...I'm still in the ER holding unit.
That's all I know for now...I'll have to let you know how everything turns out.
Taking Life One Long Day at a Time...
Allison
Long time, no see! :) Y'all have been so amazing with your comments and many prayers......I can't thank you enough!
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| If ya can’t eat it....wear it! :) |
I'm still in the hospital. I saw the GI yesterday morning and he ordered a KUB (abdominal X-ray) just to confirm the exact position of the tube. Later yesterday afternoon, I saw the hospitalist who told me that the result of the X-ray was that the tube was in the right place. He said for that they recommend a slower rate or a different formulation of formula. I did a super slow rate when I started my formula after they put this GJ in so that was useless. When he left, I cried....and cried....and cried some more because I knew it's out of place and I've had it to where it doesn't look out of place on X-ray because I can't have contrast dye plus, with this girl, when you combine malnutrition, exhaustion, and disheartening news you just have yourself a regular waterpark! ;) The GI came in this morning and followed up on the X-ray. He said in all actuality the J portion of the GJ is only barely into the intestines and mostly coiled in the stomach. This can cause feeds to easily reflux back into the stomach. Long story short, GI told the hospitalist to go ahead and get the surgery team on board for a J tube consult.
——————————————————————————
A few prayer requests...
• The hospitalist will agree to go ahead and bring in the surgery team for a J tube
• A good surgeon who is willing to do the J tube
• Strength as this rocky journey continues
• A regular hospital room (with sleeping arrangements for my family, a bathroom and, more specifically, a shower!!) to come available really soon...I'm still in the ER holding unit.
That's all I know for now...I'll have to let you know how everything turns out.
Taking Life One Long Day at a Time...
Allison
Tuesday, November 5, 2019
Dear prayer warriors....
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| The picture says it all...MCAS Life! |
The love and encouragement you have poured out to me has just been wonderful. I love the Lord’s perfect timing. There were a few CaringBridge comments that I hadn’t seen and ended up finding while in my current position......sitting in the hospital. Long story......
SO, I called my GI’s office first thing Monday morning, as planned, about possibly having my GI place an NJ tube for a temporary feeding option while waiting on surgery. My GI couldn’t and so they got in touch with interventional radiology and they couldn’t do it either. The GI said all he could do was send me back to the hospital to get admitted for nutrition again. He also, sadly, informed me that the surgeon I had been counting on wouldn’t do anything different than the “temporary” options he was suggesting and actually never had the intention of doing the J tube surgery for me. However, the surgeon's nurse called this morning saying I needed to go to the hospital for nutrition (where I already am) and said he was surprised that the GJ already came out. She said he was still looking into other options. So my questions right now are what does he mean “other options” and who do I believe......??? Anyhow, they just did an X-ray to confirm the precise whereabouts of the GJ. They were talking trying to put it back in place (if out of place) which is useless. Too much to go through for just a meer 24hrs and I’m going to end up right back here! Hoping they'll just go ahead and place a J. Last night I had about gotten to the miserable point....really achey, chilled, my heart was doing funky things (skipping beats and such) in strings instead of my normal every now and again every few days, etc. When they did labs in the ER my potassium was very significantly low so they gave me some extra. This morning my aches and just overall how I’m feeling is a bit better. So now we just play the waiting game for results and doctor’s decisions..... Please pray they will go ahead and find a good surgeon who is willing to just place a J for me so I don’t have to continue this whole fiasco!
Love you guys! Thanks so much for sticking with me through thick and thin! I will try my best to keep you up to date on the latest!
Taking Life One Hospital Stay at a Time....
Allison
SO, I called my GI’s office first thing Monday morning, as planned, about possibly having my GI place an NJ tube for a temporary feeding option while waiting on surgery. My GI couldn’t and so they got in touch with interventional radiology and they couldn’t do it either. The GI said all he could do was send me back to the hospital to get admitted for nutrition again. He also, sadly, informed me that the surgeon I had been counting on wouldn’t do anything different than the “temporary” options he was suggesting and actually never had the intention of doing the J tube surgery for me. However, the surgeon's nurse called this morning saying I needed to go to the hospital for nutrition (where I already am) and said he was surprised that the GJ already came out. She said he was still looking into other options. So my questions right now are what does he mean “other options” and who do I believe......??? Anyhow, they just did an X-ray to confirm the precise whereabouts of the GJ. They were talking trying to put it back in place (if out of place) which is useless. Too much to go through for just a meer 24hrs and I’m going to end up right back here! Hoping they'll just go ahead and place a J. Last night I had about gotten to the miserable point....really achey, chilled, my heart was doing funky things (skipping beats and such) in strings instead of my normal every now and again every few days, etc. When they did labs in the ER my potassium was very significantly low so they gave me some extra. This morning my aches and just overall how I’m feeling is a bit better. So now we just play the waiting game for results and doctor’s decisions..... Please pray they will go ahead and find a good surgeon who is willing to just place a J for me so I don’t have to continue this whole fiasco!
Love you guys! Thanks so much for sticking with me through thick and thin! I will try my best to keep you up to date on the latest!
Taking Life One Hospital Stay at a Time....
Allison
Sunday, November 3, 2019
The Disappointments Of Life
Help me, O Lord, the God of my salvation;
I have no hope, no refuge but in Thee;
Help me to make this perfect consecration,
In life or death Thine evermore to be.
Help me to make this perfect consecration,
In life or death Thine evermore to be.
Help me, O Lord, to keep my pledge unbroken;
Guard Thou my ways, my thoughts, my tongue, my heart;
Help me to trust the word which Thou hast spoken,
That from Thy paths my feet may ne’er depart.
Guard Thou my ways, my thoughts, my tongue, my heart;
Help me to trust the word which Thou hast spoken,
That from Thy paths my feet may ne’er depart.
Help me, O Lord, when sore temptations press me;
O lift the clouds that hide Thee from my sight;
Help me, O Lord, when anxious cares distress me,
To look beyond, where all is calm and bright.
O lift the clouds that hide Thee from my sight;
Help me, O Lord, when anxious cares distress me,
To look beyond, where all is calm and bright.
Help me, O Lord, my strength is only weakness;
Thine, Thine the power by which alone I live;
Help me each day, to bear the cross with meekness,
Till Thou at last the promised crown shalt give.
— Frances J. Crosby —
Thine, Thine the power by which alone I live;
Help me each day, to bear the cross with meekness,
Till Thou at last the promised crown shalt give.
— Frances J. Crosby —
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Hi there!
I apologize for the delay. After the tube procedure my brain was shot and updating did not get accomplished (obviously).
First of all...the procedure went very well. No complications, they used the right tube, and I had an exceptional anesthesiologist who was actually aducated somewhat in mast cells. They had to stretch my stoma slightly because they only had either a size smaller than the tube I had or a size larger, but not the exact size. We opted to go up the size which made me a bit sore coming out of the procedure. After a dose of IV Tylenol, I managed pretty well. They started feedings Thursday evening at a super slow rate since it had been a little since I had any formula and we planned to slowly bump it up and get it to where I had better nutrition. I was discharged home around 4pm Friday. However, after arriving home things took an unfortunate turn. I began feeling quite sick and just going downhill. I decided to stop my feeding, give my system a break, and check the placement of my tube Saturday morning before starting feeds back. As I strongly suspected, my hope of nutrition has vanished...my tube is already out of place and the J portion (which belongs in the intestine) is in my stomach. Yes, I went through all of that for a measly average of 335 calories and 24hrs with a working tube. Talk about frustrating and disheartening! I miss my J tube immensely!!!! :(
I plan to call my GI first thing tomorrow morning to plead with him to go in endoscopically and place a temporary NJ tube (nasojejunal tube/feeding tube in the nose) for me to have something until J tube surgery can be accomplished. I am not going to keep getting this one put back in if I’m only going to get less than 24hrs before it gets in the wrong place. The difference is that the NJ goes up the nose and straight down through the stomach and into the jejunum whereas the GJ goes through a hole in your stomach, makes a loop around in your stomach and curves down into the intestines (literally looks like a giant S on X-ray). With not having that loop and just going straight downwards, I never had trouble with the NJ misplacing itself. I think this would be a very reasonable option for consistent nutrition until I can get a move on J tube surgery.
Thank you for your prayers! I need them so desperately....my weary body, mind, and spirit are struggling to hang on. I’m exhausted, malnurished, and feel like I’m on sinking sand to be honest.
I have chosen a special song that means a lot to me. It is no telling where I would be today without my tender Shepherd leading me each step of the way. It’s also a reminder that He cares and truly does what’s best for us even though all you can see is you being led through a raging storm. Trust me, when you’re in one of those storms it seems like the Lord’s GPS is surely taking you the wrong way, but in all actuality He is taking you on the very best route that He knows is best for you. That is a very hard thing to believe whilst in the midst of a terrible storm, but I know there will be a day when I see my sweet Savior face to face and I’ll know what these horrific storms were and why they happened. For now I must trust that He truly knows best and is working in and through my broken body to make a perfect vessel for His glory.
Taking Life One Disappointment at a Time....
Allison
Thursday, October 31, 2019
Procedure Time
Just letting you know my endoscopic GJ tube placement is scheduled for 12:30 today and they’re supposed to come get me at 11:30....I would greatly appreciate your prayers!
Allison
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| He is so photogenic today! ;) |
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| Just passing the time snapping pictures of this adorable little man :) |
Wednesday, October 30, 2019
The Official Plan...
Just a quick update on THIS post........
We have a plan. Lord willing I will be getting a GJ tube placed via endoscopy sometime tomorrow. They will make sure my formula goes well without any issues and then I should get to go home. What time they get me in will determine when I go home. If it’s early then I might get to go home tomorrow but if it’s later I’ll have to stay the night. Given my history with GJ tubes, they are treating this as a temporary fix to get some nutrition in me. If it works, that’s great, but they want us to continue forward with the J tube planning unless it becomes very evident that it won’t be necessary. I don’t have high hopes because I’m tired of getting hopes up and then having them crushed so my official life policy is to expect the very worst and then I can be ecstatic if something actually works out! ;)
Please pray for a good doctor doing the procedure, staff that accept the “out of box experience” that I am, and very good anesthesia staff that will do things the way my body requires!
Taking Life One Medical Adventure at a Time,
Allison
We have a plan. Lord willing I will be getting a GJ tube placed via endoscopy sometime tomorrow. They will make sure my formula goes well without any issues and then I should get to go home. What time they get me in will determine when I go home. If it’s early then I might get to go home tomorrow but if it’s later I’ll have to stay the night. Given my history with GJ tubes, they are treating this as a temporary fix to get some nutrition in me. If it works, that’s great, but they want us to continue forward with the J tube planning unless it becomes very evident that it won’t be necessary. I don’t have high hopes because I’m tired of getting hopes up and then having them crushed so my official life policy is to expect the very worst and then I can be ecstatic if something actually works out! ;)
Please pray for a good doctor doing the procedure, staff that accept the “out of box experience” that I am, and very good anesthesia staff that will do things the way my body requires!
Taking Life One Medical Adventure at a Time,
Allison
What Plans Do Best......
“For my thoughts are not your thoughts, neither are your ways my ways, saith the Lord.
For as the heavens are higher than the earth, so are my ways higher than your ways, and my thoughts than your thoughts.”
Isaiah 55:8-9
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| In the elevator on the way up to get my hickman working again. |
Right after we left there, I called my GI’s office again to try to get the endoscopic GJ tube placement scheduled. Well, I decided to give them all the details in hopes that it would get them to get back with me sooner. I told them how I hadn’t had any nutrition whatsoever since Thursday, I was losing weight, etc. Well, I got a prompt call back....only from my GI’s nurse instead of the scheduler. I think my GI slightly freaked out because he was unaware that I wasn’t eating anything. He thought I was eating and just supplementing with formula so the abscence of formula for a short amount of time wouldn’t be that detrimental. So he did not want to do a GJ because that’s putting me to sleep and placing something in that has failed a gazillion times and would most likely fail again. The nurse said that the surgeon was going to call the GI so they could come up with a plan because this was something that did not need drawn out and it had already been drawn out long enough. She said she would call me back as soon as she got word of their plan.
She called me back fairly soon after and told me that the surgeon and my GI ended up having a detailed discussion because my GI wanted something more permanent (J tube) done pronto whereas my surgeon wanted something temporary so he could do some researching on his options and figure things out before doing surgery. Sooooo, they finally concluded that I needed to go to the ER without delay so I could be admitted and get some form of nutrition because nothing they would do could get done as fast as I truly needed. I really didn’t want to go, but I knew I had to in order to get some help. So I got a quick shower, got packed up, and ended up getting here around 9:00 last night. The place was PACKED with VERY sick people. I was closterphobic because it was so cramped plus I’m a germaphobe anyways so I was about to go out of my mind. I turned music to max on my earbuds, trying to drown out the horrible noises of moaning, coughing, and vomiting. I’m hoping and praying my weak system didn’t make me susceptible to all of that yuck! Anyhow, I was finally taken back to triage and spent a little time their before getting to a regular ER room. They did some blood work which came back that I’m indeed dehydrated. They were going to put me on D5W (sugar water-dextrose), but upon learning that there was no way I could have that, he said “oh, ok...then we’ll just do lactated ringers!”.....ummm, can’t have that either. He paused for a minute and then asked if he could give me saline to which I agreed. He then informed me that they were getting things started to have me admitted. I got some extra fluids and talked to multiple drs. Somehow everything got mixed up when the info was passed to the morning ER doctor because she was under the impression I was waiting for interventional radiology to just pop a tube in. She left to go read the actual notes instead of just going off of what she had understood from the previous doctor. She came back and said that she had misunderstood and that I was indeed being admitted and they were getting in touch with GI to see what they wanted to do. My nurse today is one that I had twice with the multiple recent ER visits for my J tube issues. She actually talked to the doctor and told her that she had been my nurse at least twice recently and I needed SOMETHING done. That actually was a blessing because that added some urgency to the matter. I was then informed that not only were they getting ahold of GI but also contacting surgery. So, long story short...I'm finally in my room! I’m on the chemo floor because there’s less exposure to triggers and germs. They have contacted GI, have me holding my Lovenox (blood thinner injection), and I’m completely NPO (Which means nothing to drink either) just in case they may get me in to get something done today.
I’m a bundle of emotions...excited, nervous, relieved, exhausted...but peaceful. So thankful for the peace that only my sweet Savior can give even in the hardest of times when the storms of life are raging around me and my body and soul are failing me — Jesus never fails and I know I can trust Him to guide my next step even though the fog is so dense that I can’t see where to take that next step. I just ask that you please pray for me, my dear family, and my precious Ezra during this difficult time. Yes, I have to go through the procedures, pain, and recovery, but at least I become very unaware of what is happening via anesthesia while my family and precious service dog have to be aware of the circumstances and have the dreaded wait to see how things go. Ezra, especially recently has become very aware of when I’m in pain. He will cry, put his head in my lap, and or snuggle up to me. It’s the sweetest, but yet heartbreaking at the same time. With MCAS, every single time you go into a procedure/surgery, you have no idea how your body will respond. Having a wonderful support system is such a comfort when going into scary things - knowing that I’m in the hands of the Great Physician and hearts of my family and close friends makes a huge difference as I rest on that table, waiting to go unconscious.
I (or my family) will try to keep you informed as plans fall into place. If, for some reason I’m not able to update, my family doesn’t know how my blog works so they will, Lord willing, update on my caringbridge (www.caringbridge.org/visit/allisonworkman). With that said, check my caringbridge if it has been a while since an update has been posted here.
Thanks again for your continued prayers, love, and encouragement!
Taking Life One Tube at a Time....
Allison
She called me back fairly soon after and told me that the surgeon and my GI ended up having a detailed discussion because my GI wanted something more permanent (J tube) done pronto whereas my surgeon wanted something temporary so he could do some researching on his options and figure things out before doing surgery. Sooooo, they finally concluded that I needed to go to the ER without delay so I could be admitted and get some form of nutrition because nothing they would do could get done as fast as I truly needed. I really didn’t want to go, but I knew I had to in order to get some help. So I got a quick shower, got packed up, and ended up getting here around 9:00 last night. The place was PACKED with VERY sick people. I was closterphobic because it was so cramped plus I’m a germaphobe anyways so I was about to go out of my mind. I turned music to max on my earbuds, trying to drown out the horrible noises of moaning, coughing, and vomiting. I’m hoping and praying my weak system didn’t make me susceptible to all of that yuck! Anyhow, I was finally taken back to triage and spent a little time their before getting to a regular ER room. They did some blood work which came back that I’m indeed dehydrated. They were going to put me on D5W (sugar water-dextrose), but upon learning that there was no way I could have that, he said “oh, ok...then we’ll just do lactated ringers!”.....ummm, can’t have that either. He paused for a minute and then asked if he could give me saline to which I agreed. He then informed me that they were getting things started to have me admitted. I got some extra fluids and talked to multiple drs. Somehow everything got mixed up when the info was passed to the morning ER doctor because she was under the impression I was waiting for interventional radiology to just pop a tube in. She left to go read the actual notes instead of just going off of what she had understood from the previous doctor. She came back and said that she had misunderstood and that I was indeed being admitted and they were getting in touch with GI to see what they wanted to do. My nurse today is one that I had twice with the multiple recent ER visits for my J tube issues. She actually talked to the doctor and told her that she had been my nurse at least twice recently and I needed SOMETHING done. That actually was a blessing because that added some urgency to the matter. I was then informed that not only were they getting ahold of GI but also contacting surgery. So, long story short...I'm finally in my room! I’m on the chemo floor because there’s less exposure to triggers and germs. They have contacted GI, have me holding my Lovenox (blood thinner injection), and I’m completely NPO (Which means nothing to drink either) just in case they may get me in to get something done today.
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| Chilling in the ER....just waitin’ |
I’m a bundle of emotions...excited, nervous, relieved, exhausted...but peaceful. So thankful for the peace that only my sweet Savior can give even in the hardest of times when the storms of life are raging around me and my body and soul are failing me — Jesus never fails and I know I can trust Him to guide my next step even though the fog is so dense that I can’t see where to take that next step. I just ask that you please pray for me, my dear family, and my precious Ezra during this difficult time. Yes, I have to go through the procedures, pain, and recovery, but at least I become very unaware of what is happening via anesthesia while my family and precious service dog have to be aware of the circumstances and have the dreaded wait to see how things go. Ezra, especially recently has become very aware of when I’m in pain. He will cry, put his head in my lap, and or snuggle up to me. It’s the sweetest, but yet heartbreaking at the same time. With MCAS, every single time you go into a procedure/surgery, you have no idea how your body will respond. Having a wonderful support system is such a comfort when going into scary things - knowing that I’m in the hands of the Great Physician and hearts of my family and close friends makes a huge difference as I rest on that table, waiting to go unconscious.
![]() |
| Chilling in the ER....just waitin’ |
I (or my family) will try to keep you informed as plans fall into place. If, for some reason I’m not able to update, my family doesn’t know how my blog works so they will, Lord willing, update on my caringbridge (www.caringbridge.org/visit/allisonworkman). With that said, check my caringbridge if it has been a while since an update has been posted here.
Thanks again for your continued prayers, love, and encouragement!
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| Ezra is the world’s best pillow thief! LOL |
Taking Life One Tube at a Time....
Allison
Tuesday, October 29, 2019
Hi Friends!
I’m back to update you on my appointment with the surgeon. It went very well and I’m very pleased! So the plan is for me to urgently get my G tube changed out for a GJ tube placed indoscopically while I wait for J tube surgery because I have no nutrition whatsoever, I’m losing weight, and it’ll probably take at least a couple weeks to get me squeezed into his schedule. He would love for the GJ to actually work this time to avoid me having to have another J tube surgery. When I ended up with my separate G tube and J tube in the first place was because the GJs kept coming out of place, with the part that is supposed to be in my intestines coiling in my stomach instead. It got to where it wasn’t even staying but for a day or two. I give it probably a 10% chance of success but I would be thrilled if it worked and I’m desperate for nutrition at this point so if it ends up only staying a couple days at least I’ll be getting SOMETHING in me. Just since Thursday (day after they removed my J tube) I’ve lost 12lbs and I’m beginning to show signs of dehydration. Nothing has been scheduled yet, but I’m hoping for an appointment to be scheduled by this afternoon to place the GJ. Please pray about this!
I have an appointment at noon today to get my Hickman fixed. It hasn’t been giving blood return since my hospital stay and is now sluggish enough that even my pump that does my fluids and potassium is alarming and struggling so they have to put a certain kind of medicine in it, let it sit for a while, and then pull it back out to help clean out the line and get it working again.
Thank you so much for your prayers and encouragement!
Allison
I’m back to update you on my appointment with the surgeon. It went very well and I’m very pleased! So the plan is for me to urgently get my G tube changed out for a GJ tube placed indoscopically while I wait for J tube surgery because I have no nutrition whatsoever, I’m losing weight, and it’ll probably take at least a couple weeks to get me squeezed into his schedule. He would love for the GJ to actually work this time to avoid me having to have another J tube surgery. When I ended up with my separate G tube and J tube in the first place was because the GJs kept coming out of place, with the part that is supposed to be in my intestines coiling in my stomach instead. It got to where it wasn’t even staying but for a day or two. I give it probably a 10% chance of success but I would be thrilled if it worked and I’m desperate for nutrition at this point so if it ends up only staying a couple days at least I’ll be getting SOMETHING in me. Just since Thursday (day after they removed my J tube) I’ve lost 12lbs and I’m beginning to show signs of dehydration. Nothing has been scheduled yet, but I’m hoping for an appointment to be scheduled by this afternoon to place the GJ. Please pray about this!
I have an appointment at noon today to get my Hickman fixed. It hasn’t been giving blood return since my hospital stay and is now sluggish enough that even my pump that does my fluids and potassium is alarming and struggling so they have to put a certain kind of medicine in it, let it sit for a while, and then pull it back out to help clean out the line and get it working again.
Thank you so much for your prayers and encouragement!
Allison
Sunday, October 27, 2019
Longing For Home...
Hi There!
I figured it is beyond time to let y'all know what has been going on. I do apologize for my absence, but I hope you can understand just how difficult it has been for me to talk myself into updating. Life has been very complicated and the road has been far from smooth, so without further ado.......
I will start by following up on the subjects of my last post...
Since my last update, I have seen the orthodontist about my upper adult teeth that are still up in my pallet (due to the suspicion of them starting to move) and to address possibly getting a modified retainer that would protect my upper teeth where I have gaps in my lower teeth from teeth being extracted. They did a panoramic X-ray and concluded that my upper adult teeth that are still in my pallet have not moved! Praise the Lord! So we have no concerns about that anymore. They can't make a specialized retainer for me, but she did say that my upper teeth are safe as long as I'm wearing my upper clear retainer that caps over my teeth because they are technically biting on a hard surface.
I also mentioned that we had appointments with our mast cell specialist in NY. It went well. He had some more medication suggestions and ideas for me to try. I tried one so far and it did not go well. So, back to the drawing board. I have another one in waiting for when I can try it, but that hasn't happened yet. Oh, and by the way, Connecticut "beaches" are strips of sand by a lake. :) So yeah, that didn't happen. I was a bit disappointed, but I lived. ;) I was glad that I hadn't gotten Ezra excited about it (he knows the word "beach") because I would've had to get out in the sand even though it wasn't the ocean!
That concludes the follow up to the last update......now for the current news.
After trying the new medication that failed, I began trying the new formulas on September 21st. This started a whirlwind of issues that have wreaked havoc on my body and have had some devastating consequences that have hit me really hard physically and emotionally. With each formula I tried, I would have a reaction that included abdominal swelling amongst many other serious symptoms (one being blood pressure of 77/41). The swelling would cause excruciating J tube pain until I would recover and the swelling would go down. Once I finished trying the last formula, the J tube pain didn't diminish as it had with the other trials. It just escalated and was an odd, deep, inside pain - not anything I had ever experienced with my J tube. They did a non-contrast CT scan to see if they could identify the source of my pain. The results came back showing cellulitis so I was put on an IV antibiotic for a week. The puss like drainage stopped, but the pain just continued to escalate to where I was miserable. I ended up going into the ER the evening of Thursday, October 17th because I was just so desperate. They gave me something for the pain and did a repeat CT to see if the infection had worsened or if I had developed an abscess that would be causing the pain. Well, the doctor walked back into the room and said the CT was unremarkable. The infection was gone and the tube was in the correct place. She then offered for me to be admitted for pain control. I told her if I was admitted I wanted to be admitted for someone to figure out what was wrong, not just pain meds. I then asked if they could possibly see where the balloon was (the balloon that holds the tube in) because, with prior experience with my G tube balloon being dislodged and being in the stoma (hole for tube), I wondered if maybe my J tube had done the same thing. She was unsure so she left to go check. At that point, I broke down crying. I couldn't sleep, I couldn't function, I couldn't stand the pain.....the thought that the test would come back totally fine was just overwhelming. I didn't know what I was going to do if it was indeed perfectly fine. The doctor returned with some news...She said the GI doctors had looked over the scan and I was correct - the balloon was dislodged and in the stoma. So, they admitted me for the night so they could take me to the Interventional Radiology (IR) department when they opened the next day. They took me to IR Friday afternoon to manipulate my tube to get the balloon back where it's supposed to be which gave me slight relief and then I was discharged early Friday evening. By the time I got home, the balloon had already dislodged again and I was back in the same predicament. We called my GI office's after hours line to see what we should do. They told me to go back to the ER which I did early Saturday morning. Well, they decided that this time IR would completely change my tube to see if maybe my current tube's balloon was actually malfunctioning somehow. They did so and sent me back home. By Sunday afternoon, the balloon had dislodged AGAIN, but I was able to hang in there for my mom and sister to get a little sleep and then we headed out to the ER at 5:30am Monday. Talk about insanity....they did the very same thing only this time they "put a little more in the balloon" to make it bigger so it wouldn't dislodge again. We had been in contact with my GI multiple times and he was trying to figure out what was going on. By this time he had concluded that they just needed to re-site the tube (do surgery to make a completely new stoma/hole for a new J tube) because it was highly suspected that the stoma was ulcerating causing the pain, bleeding, and allowing the balloon to pop into the stoma due to dilation of the inner part of the stoma. They referred me to a surgeon and I have an appointment with him tomorrow. Monday night (after they had "fixed" my tube that morning) was HORRIBLE! I was SO sick! I was draining a lot of excess intestinal bile from my stomach, was having excruciating intestinal spasms (NOT abdominal cramping...there is a huge difference - trust me!), and having spewing of intestinal content around my J tube. I was in a ball, sobbing, and begging to check my balloon to see if maybe it was a little too big. Mom finally made a deal with me - I would take the balloon down and then fill it halfway between what I normally had in it and the amount they had filled it with. When I deflated the balloon, I then began begging not to have to keep that deal and just add a little more than my normal. The normal amount in the balloon for me is usually no more than 5cc...they filled it to 10cc, essentially causing an intestinal blockage. So I ended up filling it back to 6cc which still caused some of the symptoms of intestinal "crowding", but I was much better off than I had been when it was twice the size that it is normally!! I'm just thankful I have a G tube for draining my stomach because (TMI warning) people without that option end up vomiting all the excess because theres nowhere else for it to go. When I went to change the dressing on my J tube Tuesday morning, it looked rather bad. The suspicions of it ulcering were no longer - it was confirmed. I could see where the ulcers had progressed to the outer edge of the stoma. What happens is they start inside where you can't see them but you sure can feel the agonizing pain, but as they progress and worsen, they spread and work their way through to the part of the stoma that you can see when looking at the tube site. By Tuesday afternoon, the pain was excruciating. I knew I wouldn't make it much longer before having to get some relief. I tried to let my mom and sister get some rest that night, but I just couldn't. By midnight I was begging them to hurry and get to the hospital. We decided to go to a different ER this time because #1. I was fed up with them just doing the very same thing even though I was only worsening and #2. the surgeon who I'm supposed to see is affiliated with that hospital and not the hospital I had been going to. I was thrilled at first because the ER doctor's plan was leaning towards admitting me and getting the surgeon to see me and maybe get the surgery done quicker. However, it quickly changed when he talked with the surgeon. The surgeon told him it would do no good and he would see me in the office because they would have to order my tube anyway (NOT true...they carry them there at the hospital). I informed the doctor that they did indeed already have the tube I can use and then asked if there were any other surgeons that would be willing because I was desperate. He said he still felt like that was the best option and he would go see if someone would admit me and if there was anyone else that would do the surgery. He came back with the most devastating news......no. So the plan was to manipulate the tube for the 4th time and send me home. So I stayed the night in the ER with pain control while I waited for IR to be able to take me. When we got to IR I asked if they could call my GI and let him tell them what he was thinking and ask about maybe just removing the tube because I knew I wouldn't be able to stay out of the hospital because of the excruciating agony I was in. They called him and he told them to go ahead with removal. So, Wednesday I bid my J tube (and only avenue of nutrition) farewell and am awaiting my appointment with the surgeon tomorrow. Thankfully, since removing the tube, pain has been minimal and I haven't had to return to the hospital.
The surgeon I'm scheduled with is the surgeon who refused to give me a J tube in the beginning when my GJ tube was failing and I really needed separate G and J tubes. I'm really hoping that since I've had a J tube for nearly 2 years, was pleased with it until complications arose, and I want another one that he will go ahead and do the surgery for me. PLEASE pray that SOMEONE will do J tube surgery soon! I'm majorly feeling the malnutrition setting in. All I can do by mouth is liquids that flow straight through and out my stomach drain and organic hard candy that, of course, melts and drains. Anything else makes me sick. This means that really all my body is actually getting is the liter of potassium infused saline going into my veins via my Hickman each day.
All of this makes it all the more difficult to think about trying anything else. To have your J tube be damaged to the point of no return (which is a very difficult surgery to go through) as a result of reactions is very traumatizing. This is a huge blow not just physically but emotionally as well. To be blunt - its terrifying. I never ever ever ever want to go through that agony again! The pain I went through these last few weeks was seriously worse than the pain of the J tube surgery. And that is saying a lot!
On top of the current circumstances, I was informed that I have exhausted all formula options and I will either have to find a nutritionist that is able to put me inpatient to try compiling a formula specifically for me that my body can tolerate (which is much more difficult when you have to administer in the intestines through a J tube vs just in the stomach via a G tube) or a pharmacist who can make a version of TPN (IV nutrition) that doesn't contain dextrose (the normal base for TPN) or anything else I can't tolerate. We are in the process of trying to get the formula company to either manufacture the old version of my formula that I can use or release the recipe for the old formulation so I might find someone who can make it for me. I have a little stash of the (now expired) old formulation left, but it won't last too much longer and then I'll be stuck with absolutely nothing unless we find something before then.
Congratulations if you have made it this far! Thank you for caring enough about me to read my long updates and pray for me! Jesus is my anchor and without Him I know for a fact I wouldn't be here today. The last few weeks have been only the promise of Heaven getting me through each minute of every day. I have never before been so strongly tempted to quit. It is like I'm in the middle of an earthquake and life is caving in on me. I just desperately need help and as each day goes by my hope of getting that help dwindles. Right now this song is so appropriate to describe my heart right now.....Every day finds me Longing For Home...
I figured it is beyond time to let y'all know what has been going on. I do apologize for my absence, but I hope you can understand just how difficult it has been for me to talk myself into updating. Life has been very complicated and the road has been far from smooth, so without further ado.......
I will start by following up on the subjects of my last post...
Since my last update, I have seen the orthodontist about my upper adult teeth that are still up in my pallet (due to the suspicion of them starting to move) and to address possibly getting a modified retainer that would protect my upper teeth where I have gaps in my lower teeth from teeth being extracted. They did a panoramic X-ray and concluded that my upper adult teeth that are still in my pallet have not moved! Praise the Lord! So we have no concerns about that anymore. They can't make a specialized retainer for me, but she did say that my upper teeth are safe as long as I'm wearing my upper clear retainer that caps over my teeth because they are technically biting on a hard surface.
I also mentioned that we had appointments with our mast cell specialist in NY. It went well. He had some more medication suggestions and ideas for me to try. I tried one so far and it did not go well. So, back to the drawing board. I have another one in waiting for when I can try it, but that hasn't happened yet. Oh, and by the way, Connecticut "beaches" are strips of sand by a lake. :) So yeah, that didn't happen. I was a bit disappointed, but I lived. ;) I was glad that I hadn't gotten Ezra excited about it (he knows the word "beach") because I would've had to get out in the sand even though it wasn't the ocean!
That concludes the follow up to the last update......now for the current news.
![]() |
| My sweet Ezra on our second trip to the ER. He is the sweet face of patience, love, and strength. He does so much for me physically as well as emotionally. |
The surgeon I'm scheduled with is the surgeon who refused to give me a J tube in the beginning when my GJ tube was failing and I really needed separate G and J tubes. I'm really hoping that since I've had a J tube for nearly 2 years, was pleased with it until complications arose, and I want another one that he will go ahead and do the surgery for me. PLEASE pray that SOMEONE will do J tube surgery soon! I'm majorly feeling the malnutrition setting in. All I can do by mouth is liquids that flow straight through and out my stomach drain and organic hard candy that, of course, melts and drains. Anything else makes me sick. This means that really all my body is actually getting is the liter of potassium infused saline going into my veins via my Hickman each day.
All of this makes it all the more difficult to think about trying anything else. To have your J tube be damaged to the point of no return (which is a very difficult surgery to go through) as a result of reactions is very traumatizing. This is a huge blow not just physically but emotionally as well. To be blunt - its terrifying. I never ever ever ever want to go through that agony again! The pain I went through these last few weeks was seriously worse than the pain of the J tube surgery. And that is saying a lot!
On top of the current circumstances, I was informed that I have exhausted all formula options and I will either have to find a nutritionist that is able to put me inpatient to try compiling a formula specifically for me that my body can tolerate (which is much more difficult when you have to administer in the intestines through a J tube vs just in the stomach via a G tube) or a pharmacist who can make a version of TPN (IV nutrition) that doesn't contain dextrose (the normal base for TPN) or anything else I can't tolerate. We are in the process of trying to get the formula company to either manufacture the old version of my formula that I can use or release the recipe for the old formulation so I might find someone who can make it for me. I have a little stash of the (now expired) old formulation left, but it won't last too much longer and then I'll be stuck with absolutely nothing unless we find something before then.
Thank you for your many prayers, much love, and encouragement! Your support is a big blessing to me!
Taking Life One Exhausting Step at a Time...
Allison
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