"I will praise thee; for I am fearfully and wonderfully made..."
Friday, December 23, 2016
Hi Friends!
I survived the torture chamber! ;) I had some symptoms during the tilt table test, but they definitely weren't their worst. I was pretty much covered in medical wires/equipment, laid flat for 20 minutes while they probed/massaged my juggler veins to see if that affected my heart response. I was tachycardic (heart rate over 100bpm) while I was lying flat. Then they stood me up for 40 minutes, the last 20 minutes being them having me bear down, take deep breaths, hold my breath, put my hand in ice water and sloshed it around (Raynaud's did NOT like that one......OUCH!), and then gave me a medication to speed my heart rate up which does NOT feel very good when your heart is already racing. After the test, my electrophysiologist (EP) came out and gave me the results. I have, as my EP called it, "POTS' cousin" - Inappropriate Sinus Tachycardia (which just sounds so wimpy for what it causes! ;))....a few long words to pretty much say my heart is running a marathon even when I am resting and sleeping. The POTS (postural orthostatic tachycardia syndrome) is caused by posture, but this just stems directly from the heart rate. You can learn more about it from Dysautonomia International here (http://www.dysautonomiainternational.org/page.php?ID=228). They say it affects 2.1% of the population. Anyways, I'm supposed to up my fluid and salt intake, wear compression as tolerated, and she prescribed a low dose medication called a beta-blocker to try to help get my heart rate under control. We're hoping that it won't cause any mast cell issues and will give me some relief. If we get passed the mast cells, we have to balance the dosing where it'll stabilize my heart rate without dropping my blood pressure too much. I was knocked out after the test...drifting in and out of sleep from utter exhaustion of the testing plus some mild reacting to the medicine they gave me to speed my heart up.
Mom, Ezra, Christina, and I on the carousel :)
Christina and I on the carousel (and Mom photobombing ;))
I had a little peak where I felt fairly well later in the afternoon after napping and resting. Since we were already in Durham, we went to the Meadow Lights in Benson to see Christmas lights. We rode the train and the carousel and then went through the little candy store. It was a lot of fun, but my body was screaming "enough is enough!" by the time it was done. I got up at 4:00 in the morning, went through the terror testing, rested for a few hours, and then put my body through another round of chaos in the evening. It was worth the second part, however, I could've skipped the first half of my day! ;) I'm glad I at least have that tilt table test behind me now!
Ezra and I riding the train. He wasn't very thrilled about it... he is terrified of metal!
Thank you for your prayers! Please continue!
Allison
Hi!
Just letting you know...my tilt table test is scheduled for 6:00am. Please keep this a matter of prayer! I'm usually worse in the evenings so 6:00am was a bit of a bummer, but we know Who is in control. I've developed some autonomic symptoms throughout this evening so at least that's encouraging! I really need this test to be accurate!
So sorry for the delay in my updating! The tube change went well. The tube was still in the right place and I confirmed that after seeing the images. I tried my formula mixed at half strength and running at half the rate. It is doing well that way. I continue to react to my meds. It could be the temperature of the water that is causing a reaction instead of the meds themselves. I'm really hoping that is the case! Finding new meds is a lot more difficult to handle.
Holding my little (ahem, BIG) niece, Vivian Ruth Workman. (Look at her hair!!!)
Yesterday was a very eventful day.... My niece, Vivian Ruth, decided to meet the outside world! :) She came weighing a whopping 9lb 4oz and was 21" long...she is huge for a first baby! She is having a little bit of a rough start so we would appreciate your prayers for little Vivian and a smooth recovery for Joanna (aka "Mama"). She has already grabbed our hearts and I look forward to watching her grow. We didn't get back home from the hospital until about 1:30 this morning!
I will, Lord willing, soon be leaving for Durham. Tilt table test is scheduled for tomorrow. We have to call between 3:30 & 4:30 this evening to find out what exact time they want me there. They don't give us a scheduled time until that point in time. I would greatly appreciate your prayers that I will have symptoms that show the problem throughout the testing. Even though it's been rocky lately, my autonomic system isn't acting up all that much. Go figure! I really don't want my health to be absolutely superb for this testing. And then, once the testing is over, I really want a quick recovery for Christmas activities...it's not quite the same when you're miserable! ;)
Just letting you know I have an appointment at 10:30 this morning to get my feeding tube changed. I'm more positive than ever about this tube not being where it is supposed to be. When I drink hot chocolate (my own recipe/concoction) and can immediately drain it from the part of the tube that is supposed to be in my intestines...yeah, there's a teensy bit of an issue! ;) I'm hoping all goes well. Please pray that they will change the tube and not make a fuss about me having J tube surgery.....and that I'll get the best radiologist. There are at least 2 that I really don't care for - one is very cocky and the other is insistent on a J tube. Take my word for it, cocky doctors changing feeding tubes does not make for a pleasant time of it!
Hopefully I'll have good news about this situation later!!
Allison
I have so much to catch up on. It's crazy to think I haven't written since Thanksgiving!
Me and Ezra at our local Christmas parade... matching antlers and all! ;)
I guess the first thing would be the current situation... My feeding tube. I've been having a lot of trouble with it and finally had it checked yesterday. They said it was even farther in place than it had been (which, I might add, makes no sense) even though they didn't save an image of the last time. It was all here say from the radiologist that had manipulated it last time. They can't use dye so nothing is ever for sure. 99.9% of the time I am right on it being misplaced and I'm 100% convinced it isn't in the right place right now. Everything points to that. I'm working on getting something done about it. Upon my hematologist's nurse's instruction... we called my GI's nurse and left a message, asking to get either a tube manipulation or tube change ordered. When we didn't hear back within a reasonable time to get it done today, we were supposed to call my hematologist's nurse and she will take care of it. So we have contacted my hematologist's nurse to hopefully get it taken care of today. I feel like I'm between 2 evils right now. Radiology is one and leaving it be is the other. I'm afraid of what the radiologist may think/say, but I'm afraid I'm only going to get worse if I leave it be. I greatly need your prayers that they will see that it's indeed out of place and be able to fix it!!
My PICC line had been doing great until Saturday evening. The stitches became painful, red, and slightly inflamed. I had my dressing changed yesterday and one of the stitches has gotten worse and is following the same track as before when I was reacting to the stitches. I'm afraid the constant triggering from my meds not going into the right place via my feeding tube is making this worse. It's just complicated. I'm thankful I got to enjoy our church's Christmas cantatas, though! :)
My tilt table test at Duke is now scheduled for December 22nd. So, as long as all goes as planned, we will be leaving the 21st and coming back the 23rd. Please keep this a matter of prayer!
Bella, me, and Ezra.
Ezra with Bella sitting under him. :) I LOVE this picture of them!
I've gotten all of my Christmas shopping/wrapping/mailing done! I got my Christmas pictures taken, cards made, and got them to their destinations. Now I'm just enjoying counting down the days! Today is my niece's due date.....hoping she doesn't decide to arrive while I'm at Duke! I'm sure my brother and sister in-law would appreciate your prayers for a smooth delivery and a healthy baby! :)
Hannah Rose Humphris 1996-2015 (This is my favorite picture of her... She looks like a princess!)
I've thought a lot about the people we have on a daily basis who we take for granted. It's coming up on 2 years since I lost my dear friend, Hannah, whom I nicknamed "Gumby". Some of the very things she would say that would drive me absolutely nuts are the things I miss the most. I would give anything to have her call me "dramatic" (her way of saying stop worrying/chill out) again. Cherish those moments even when someone is being totally annoying because you never know when that day may be that you would give the world for another moment like that. I, too often, find myself "wishing those moments away" and impatiently waiting for it to be over. It hurts as if it were yesterday that I found out she was gone. I texted her that dreadful day...I guess I was just in denial that she was actually gone. I wanted to tell her, one more time, what she meant to me. I wanted to just hear once more that she loved me. I still have yet to receive a reply. I would give everything to have one more moment with her. Hug the ones you love a little tighter today...show them how much you love them because you never know when that day may come when you never get a reply to that text...you never hear their voice...they no longer share that laugh with you. Forgive today. Do that one thing special you've been planning. Love them a little extra. I will always cherish the (all too short) time I had Hannah as my friend. I miss you, Hannah...I hope you have a wonderful Christmas in Heaven! :) If I could send hugs to Heaven you would get 5 packages every day! <3
Thank you so much for your prayers...please continue!
Allison
Happy Thanksgiving everyone!! A few of the things I'm thankful for...........a shower, a home, and a family to spend Thanksgiving with. I was in the "observation" section of the hospital for 5 days which only has a toilet, sink, and curtain that acts as your "bathroom". They moved me to a real room on Tuesday so I FINALLY got a shower! ;) I got to come home yesterday, thank the Lord! I REALLY wanted to be home for Thanksgiving and was beginning to doubt that happening. I'm so thankful that the Lord allowed me to come home and enjoy Thanksgiving with my family! :)
I hope everyone has a wonderful Thanksgiving!!
Allison
Friday, November 18, 2016
I am so sorry for keeping y'all waiting and wondering. It has been quite the tough few days! I'm going to try to sort out the whole blur of events that have happened.
Chilling in the ER....literally! I was freezing while Ezra was panting and Mom and Christina commented on how hot it was! :p
When I got to the ER Wednesday (about noon), my white blood cell count was elevated, my temp was 101.7, my heart rate was in the 120s even when I was sleeping, and my PICC drainage had soaked my dressing again. They immediately labeled me level 2 trauma (level 1 is a CPR patient) and moved me to a different part of the ER. They took blood cultures and x-rays, gave me pain meds, pretreated me, and started the IV antibiotics.
Ezra and me all conked out in our tiny room! :)
I got to a tiny room at around 5:00. We squished in and it didn't take long for me to conk out! I finally had some relief from the pain and the other issues already had me exhausted! They switched me to a bigger room down the hall later that evening.
Some of the swelling in my arm this morning.
Some of the swelling in my arm last night before they took the PICC out.
This may come as a bit of a shock, but I have a blood clot. Yep, you read that right. I was told on Tuesday that as far as they could tell, the ultrasound was negative for clots. When we got here, they said it showed a possible clot. They checked into it farther yesterday and confirmed there is indeed a clot in that arm. After the first dose of antibiotics, my temp came down, and my white blood cell count dropped into the normal range, so they think I was having an inflammatory response to the clot rather than an actual infection. The
infectious disease doctor is leaving me on the antibiotics for now just to be safe. They pulled my PICC line out yesterday afternoon. As far as I understand, they are letting things rest for a couple days using regular IVs and then putting another line in. They are trying to get some advice from my immunologist about somehow testing me with the components used in Hickmans and ports to get an idea on what might be best to try. I've just had such a difficult time out of my PICCs lately that they want to do what's best for me in this situation. I may end up with another PICC and, yet again, maybe not. I will have access in some way...we just don't know what way, yet! ;) So, it all boils down to staying on the antibiotics while I'm here, letting things rest for a couple days, figuring out what line they want to put in and getting it placed, and go from there. :)
My sweet Ezra joining me in la-la land! ;)
I shall bid you all farewell for now.... my arm is screaming at me to stop typing. Pain has been a big part of my days, unfortunately. :-|
So, I made it through the night without going to the ER. We called the after hours line at my hematologist and they okayed me staying home as long as things didn't get worse or certain symptoms appear. My temp hit 101.1 last night, but by this morning, it was down to 99.8. We called my hematologist's nurse as we had been instructed to do by the on call staff and she said if it would've been her last night, she would've sent me straight to the ER. She talked to my hematologist and, even though my fever had dropped, they wanted me to be admitted for IV antibiotics. All the PICC symptoms plus the other yuck, they felt I needed to be admitted. Ugh. I changed my dressing right after the ultrasound because they had to partially remove the dressing during the ultrasound. Anyway, by 9:30 last night, the drainage had soaked my bandage and leaked through my clothes. It was changed again close to midnight and has gotten a large spot of drainage already. If I have to have a full round of antibiotics, I'll have to be in the hospital for Thanksgiving. That's the pits!!!
Please be in prayer about this situation!
Allison
Tuesday, November 15, 2016
Well, hello there!
When ya don't know what to do... Just smile and take a selfie with your Service Doodle! ;)
So, the ultrasound, as far as they can tell, came back negative for blood clots. The tech had some difficulty seeing through the swelling. They decided to schedule for my PICC to be changed to the other arm, not knowing whats causing the issues. I'm supposed to be there at 10:00 tomorrow morning. Since my last post, I have developed some new issues......in addition to the drainage, pain, and swelling, I have lack of appetite, nausea, headache, chills, fatigue, burning eyes, and the beginnings of a fever. Right now I'm at 99.7 under my left arm and 100.8 under my right arm (I think swelling can cause it to be a bit warmer). I'm watching it closely and hoping I can wait it out until morning. If it keeps escalating, I will definitely have to make a trip to the ER, because unfortunately, these are the signs and symptoms of sepsis, which is a blood infection that you do not want to mess around with. I'm understandably a bit unnerved about it, but I know the Great Physician has this whole situation in His all-powerful hands. I'm really hoping this is not sepsis, however, I know the Lord can carry me through this hardship just as He has many times before. I would greatly appreciate your prayers! I really don't want to have to go inpatient again!!
Thank you so much to those who are praying for me!
Taking Life One Mystery at a Time... ;)
Allison
Hey!
So, I've had issues with my PICC starting last Sunday. It began bleeding and saturated the gauze underneath my dressing. It mysteriously started and suddenly mysteriously stopped. I had some pain in my armpit along with some swelling, too. We contacted my nurse and she said to change the dressing and see where the bleeding was coming from and if it was the PICC site, I needed to go to the ER. Well, it had stopped so we didn't go to the ER. Yesterday, I had a follow up with my PCP so I told her about the weird incident and she felt the swelling and found it had started to go down. Last night was a bit rough with the pain increasing. This morning, it had gotten even worse and was still increasing. By this afternoon, the swelling came back, the pain is quite extreme, I have a lot of drainage on my gauze, and I'm quite concerned to say the least. We contacted my hematologist's nurse who called radiology who told her to get an ultrasound first. So I'm on my way to an ultrasound which is at 3:30.
I would appreciate your prayers. This could be a misplaced PICC, blood clot, or both. :(
The cuddles after the storm. :)
Still knocked out from the reaction
and Ezra was cuddling with me.
Hey there!
So, I've come to a conclusion....it is just plain bad luck to update! ;) I barely got my last update posted and Ezra began alerting. I notified my nurse and he was preparing to proactively treat with a lower dose of Benadryl, but took a little too long to get it. Yup, I went into another dystonic reaction. This one lasted a little over 2 minutes, but took longer for me to completely come out of it. I was out for quite a while and still had muscle tightness for a couple hours. Thankfully, by this morning, I'm mostly recovered (always tired and light sensitive the day after).
My doctor came in this morning with some great news....my cultures came back negative, and I was cleared for home!! Yay!!!!!! So I'm now just waiting on my discharge paperwork to be completed, and I'm outta here! :)
My new PICC is doing amazing! It's all taped up to prevent the stitches being yanked out! :)
Well, I know I say this just about every update, but your prayers and support are really truly appreciated! It would be a lot more difficult to get through my days if not for your prayers, and God's answers to those prayers.
Glad I have a large IV pole! ;) Saline, Calcium, Vancomycin, and tube feeding!
Still in the hospital. We had a bit of excitement right after my last post. Mom and Christina got some supper from the cafeteria and apparently it was a tiny bit too spicy. I began not feeling so great and Ezra began alerting soon after. We notified my nurse, he came in to check on me, and then he left to page the doctor about giving me an extra dose of Benadryl since I had just had my pretreat for the antibiotic not more than an hour earlier. Well, Ezra's alert went from yanking my meds bag to his vocal pleading. He began pacing the floor and then jumped up on my bed, pacing and smelling me from head to toe. My nurse no more than got the page sent to the doctor and I went into a dystonic reaction. They let my nurse know and then the craziness began.....the floor nurses, rapid response, and who knows who else were in my room and overflowed into the hall. I didn't comprehend just how many people were around. I guess I was too focused on breathing. ;) I did notice 2 big rapid response backpacks and a crash cart outside. From the time they let the nurse know I was in a reaction and the time it ended was 4 minutes that felt like an eternity! Kinda gives you a little reminder of the reality of this disease and even life in general.....never know when you will breathe that last breath. When I came around, my nurse was standing there, looking kinda stunned and said "you scared me!". I must say, my little man sure did prove himself! :) The nurse that was supposed to have me tonight smelled too strong and wore lotion, so they changed things around to avoid another reaction. They checked some levels after the reaction and my calcium was low so they did an IV infusion of calcium. Thankfully I did well with that!
They wanted to give the cultures a little extra time to grow, so hopefully the results will be back in the morning. If they come back negative, I get to go home! :) When the doctor came to see me this morning she said it looks like all of the cellulitis is gone. It doesn't hurt anymore and it looks great! So, yeah, just waiting on the results of the cultures and doing antibiotics in the meantime. :)
Thank you so much for your prayers and support!
Allison
As of this morning, we have a plan! :) They said my white cell count isn't elevated so they don't think I have any blood infection (Sepsis)...which we assumed in the first place, given the fact I haven't had any fever, chills, vomiting, etc.. The hospitalist said that if my cultures come back okay tomorrow, I should only have to have the antibiotic for a couple more days! Yay! It seems I'll be here as long as I'm on the antibiotic. I've done really well with the last few infusions at the low rate with the pretreat. Very mild to no symptoms during the infusions! The infected area continues to rapidly improve.
The new PICC line and prolene stitches.
The nurse changed my PICC line dressing this morning and both the line and the stitches are doing amazing!! Only slight bruising and swelling from the trauma of the placement. So, we have now proven I can have prolene stitches, and it was just that the other PICC site was irritated from the previous stitch reactions and the brewing cellulitis.
I think that's all for now, folks! I hope everyone has had an amazing day! :)
We arrived at the hospital around 5:00 yesterday afternoon. I had some blood work done, chest & arm X-rays (to check my new PICC), ultrasound of the infected area to check for an abscess, and an ultrasound to check up on the status of my last blood clot. Thankfully the infection does not include an abscess which would require my arm to be opened up to drain! My last DVT (Deep Vein Thrombosis) is gone as well. I was very grateful that they gave me pain meds before sending me to get the ultrasound over the infected area!! I'm rather sure that would've been complete misery without the pain relief. They started the IV antibiotic at a fairly slow rate (slower than the last time I had it and reacted) after pretreating me. I did well until close to the end of the infusion....I then assumed the behaviors of a monkey! ;) Oh how my head itched and face/neck area roasted! I was flushed and rashy so they gave me more Benadryl and slowed it down even further. I finished it a little after arriving in my room at 3:00 this morning.
This face says "Hurry Mom, take the picture...I itch...I gotta scratch!!!!" ... Literally! ;)
After a big, huge mixup with my home meds, we finally got it all straightened out and I had another pretreat/antibiotic infusion around 8:00ish this morning. They did the same stronger pretreat that they used for the first infusion, and started it at the slow rate I ended up finishing at, with the last dose. I actually made it through the whole infusion with only mild symptoms and no extra rescue meds! I'm hoping this continues where I only have to do a pretreat and not have other yuck to deal with during the infusions. It seems that they are doing three smaller infusions per day instead of just two larger doses. When I stopped the antibiotic infusions a couple weeks ago, I had the infusion rate at 175 and the rate I'm doing now is 100. It takes around 2 1/2hrs for the infusion that would originally take an hour at the normal rate. SO, is anyone ready for some good news??? The infected area is doing SOOOOOOOO much better already...the redness, swelling, and pain have decreased greatly. Another piece of good news is that the stitches in my new PICC (in the right arm) seem to be doing great. No redness, swelling, or irritation visible from under the bandage and no stitch pain. It's either doing great or I've been in so much pain lately with the other PICC situation that my brain doesn't recognize anything mild! ;) I'm hoping I don't have to stay here for the entire duration of the antibiotic, but the only way I'd be able to go home on it is if they okay me having that much extra Benadryl. At home I've only been allowed 75mg above what I get through my pump per day and here, with pretreats alone, I'm getting 150mg extra and that isn't counting if I need rescue pushes. The reason I'm here is so they can monitor me and be prepared if somehow I would end up having too much. I'm on a heart monitor so they can see if anything happens. It's very unlikely anything would happen with me, but I do fully understand where my hematologist is coming from in wanting to be safe, and I appreciate his concern and carefulness! I would rather be home, of course, but I'm just so blessed to have a doctor like him who is willing to care for me and do everything he can to keep me safe. I'm very thankful that I made it through the infusion at the lower rate without any extra (above the pretreat) rescue meds!! I (and my doctors) do believe I had/have a bad old genuine infection this time. I can't tell you how good it feels not to be in constant, extreme pain!....FINALLY have some relief!!! :) You can see the amazing change the antibiotic has already made in the pictures below...
Allison
Top picture was from last night and the bottom picture is from this morning. Notice how the saggy swelling is gone and how much the redness has lightened!? Sorry the pictures are at a little different angles, but I think you can still see the change! :)
Warning: this party isn't all fun and games - it's a little bit pity themed. ;) If I were completely honest right now...I'm really disappointed, bummed, frustrated, and just plain tired of this mess! :( Plans have changed and, as you've probably guessed, I'm not thrilled with them. So, this morning I went to get the stitches removed from my PICC and they discovered that, in addition to the reaction to the stitches, it appears I have some cellulitis now. It worsened a lot overnight and began having a pussy discharge from the PICC site and stitches. They put a new, double lumen PICC in my right arm and removed the PICC in the left. They had to put this PICC super short because my veins in my right arm are pretty shot from all the PICCs they've endured. The radiologist said they'd put this one in super short but when it messes up they're just going to have to do a Hickman. They used the prolene stitches in this PICC as well because we wonder if possibly the stitches were causing a reaction since that area was so mad from all the other stitches. This will tell us for sure whether or not it'll work. They were concerned about the cellulitic look, called my hematologist, they asked that we email pictures to my hematologist's nurse, and after seeing the pics, they called right back saying we need to do antibiotics. He was willing to let me try them at home if I just really, REALLY wanted to, but he would rather I be inpatient. I said all that to say my Duke trip has been postponed til further notice and I'm going home to grab some things before heading right back to the hospital. I so wanted to get that tilt table test behind me, but as Mom and Christina said "just remember Who's in control.".....yeah, I didn't really wanna hear that at that particular moment, and frankly, I still don't all that much! ;) I know He is in control and I know He knew this was going to happen, but I just want to be at Duke outpatient instead of Charlotte inpatient. Okay, pity party over! :)
I'm supposed to wait on a call to reschedule my tilt table test and my hotel reservations have been canceled. They said it could take months to get it rescheduled. We plan to still get Ezra groomed while I finish getting everything ready to go to the hospital. That way he won't be a shaggy little guy for our luxurious stay at the Medical Inn & Suites. ;)
Thanks so much for hanging in there with me through the thick and thin...I really appreciate your prayers and sweet encouragement. Keep 'em coming! Lord knows I need it right now! :)
Allison
The look of my PICC line dressing this morning. Notice the pussy drainage.
The swelling/redness in my arm where the PICC used to be.
Another view of the swelling/redness in my arm where the PICC used to be.
As you may have guessed from the title, the prolene stitches are not doing well either. The PICC area is extremely painful (to say the least), draining, swollen, and red. I've tried to wait it out, but it has only gotten worse. We contacted the radiologist to see about another option, but unfortunately, I have officially exhausted all of their resources for stitches. I am supposed to be in Charlotte by 7:30 am tomorrow to get these stitches removed and get it taped up good with tegaderm. PLEASE pray that I can manage to keep the PICC in without stitches....if y'all really know me you know how I do without stitches. With the redness and swelling spreading as rapidly as it has today, they said they REALLY need to get these stitches out. I am really looking forward to getting these stitches gone, but at the same time, I am greatly dreading it....I do NOT like anyone touching anywhere near it due to the excruciating pain it causes!!
Swelling and redness coming out
from under the PICC dressing.
Swelling and redness coming out
from under the PICC dressing.
After getting the stitches removed, Ezra is scheduled for an early morning grooming and then we will, Lord willing, be off to Durham to prepare for my tilt table test on Thursday. Please pray that symptoms and things will show up fairly quickly during this test so it won't have to last so long and I won't have to be given any heart stimulating meds (no telling how my mast cells would like those!)!! I really need the electrophysiologist to be able to see the issues and possibly be able to help with them! I would also appreciate prayers for a fast recovery time! :)
We left on a somewhat last minute trip up to the mountains on Monday and stayed until Friday morning. Life still had it's realities, but at least I didn't end up in the ER this time! ;) Ray and Joanna (bro & SIL) were out of town so we worked some on the walls of the nursery. Definitely excited about the little niece who, Lord willing, will be coming into this world in December! I got to feel her bumping around during our last trip up! Surprisingly, I had never felt that before... I'm the baby of my family so I never had any little siblings on the way. :) Anyhow, we had to come home Friday since Valerie has an appointment on Monday and I have to leave Wednesday for my tilt table test on thursday, but we hope to return sometime in the near future to help get the nursery ready!
Ezra has been great about going up the metal spiral staircase in the cabin, but not coming down! This is him staring down, waiting for someone to carry him down. :)
All 3 of us (me, Ezra, and Bella) squished up together in my bed in our cabin.
The PICC site with the silk stitches. Very painful!
Now for the not-so-awesome stuff...In my last post, I was excited with realizing I was reacting to the ethilon stitches and got to change back to using the silk. I thought I had seen the last of the stitch issues, but I'm afraid that wasn't the case. The silk stitches looked great for the first day or two and then began doing the exact same thing as the ethilon. After less than a week, two of the silk stitches were completely out because the main part of the reaction is the skin/meat "corroding" around them. Its not that they are getting tugged a lot, the skin/meat around them just literally disappears. This process is the definition of pain! {especially when your sister, who is changing the bandage, seems totally obsessed with scrubbing it clean!!! ;)} As of Friday afternoon, they have switched me to prolene stitches (looks like blue fishing line!). Sadly, they seem to be following down that very same road. It could still be soreness, but I highly doubt it. Only time will tell and we haven't changed the bandage since the stitches were put in. So far, we can see redness around the edge of the gauze and I can definitely feel the pain. I am soooooo tired of this horrid pain and the whole stitch situation in general. Sometimes I sure wish the Lord would let me in on His perfect plan...then again, that could be scary! ;)
Stitching my PICC with prolene stitches...
and no lidocaine
Stitching my PICC with prolene stitches...
and no lidocaine
OH, and more happy news.....When I went to get the stitches done, it just happened to be on halloween weekend. Yeah, some that really know my Ezra may know where I'm headed with this! We get into the main entry lobby at the hospital. On my left is the straw man, on my right is a witch, and directly behind me is a therapy dog...all in human form! ACK! I made a beeline for the elevators which were straight ahead, knowing that Ezra has a tough time with costumes (in his brain they aren't people, but rather "monsters") and he is terrified of dogs. I no more than got in the little "cubby" where the elevators are and the therapy dog crosses in front of me. I decided to stick it out and see how Ezra responded since he has been doing quite a bit better with his barking. He growled....HE ONLY GROWLED!!!!!!!! When I told him no, he then tried his best to run the other way. Poor little fella! But with this experience, he got to see that the dog didn't hurt him (nor even come towards him), he didn't bark, and he didn't run away. That, my friends, was a HUGE step for him, especially since the attack! I was so proud of him and sure let him know it. While comforting him and reassuring him "see, its gone. He's all gone and he didn't come to get you!", I look up and realize I have an audience of people waiting on the elevators. Yes, awkward moment in a service dog owners life! I just went on to explain to them that he had been attacked by a dog and is terrified of dogs. That helped wipe that confused look off of everyones face. Then, while waiting on the elevator, Mrs. Potato Head walks up and stands there, waiting on the elevator. The whole time I'm thinking "oh Ezra, PLEASE don't bark at her!!" :) Thankfully, I made it up to radiology without any major mishaps. When we came back down, I stopped, surveyed the whole front lobby area for any possible offenders, found it was clear of any dogs or costumes, and zoomed on through. I no more than get out of the door and, to my left are two minions! Eeeek....I took off only to face spongebob and some other character (I don't remember which). I conveniently waited until they were well out of sight before continuing on my way. :) I was so thankful, though, that through all those costumes AND a dog, he only growled at the dog! THAT, my friends, is a HUGE accomplishment for my little man! The Lord knew I couldn't handle it much longer and has helped Ezra gain so much better control of his fears!
Ezra and I in bed this morning...the only position I could get my PICC halfway comfortable.
Well, as I mentioned earlier, my tilt table test is this Thursday. Yay...maybe not. I'm not too thrilled, but I will be very thankful when it is OVER! We plan, Lord willing, to leave on Wednesday, stay in a hotel and have my tilt table test on Thursday. I won't know the actual time for the test until we call Wednesday evening...just how they work tilt table scheduling at Duke. :)
Taking Life One Stitch at a Time,
Allison
Tuesday, October 18, 2016
My PICC change went well. I'm a bit sore, but that's to be expected. The PA that did it this time was really good. She inquired about the possibility of a Hickman, and I was okay with that, but my hematologist isn't up for that at this moment and told her no. Probably because my mast cells are less than happy with life right now, for whatever reason. I got the very same type of PICC line as I had, but their rep (who was out of town today) said she thought they had a double lumen (two access ports on the same line) silicone PICC now! YAY! It would be amazing if I could get a double lumen which would greatly lessen the amount of peripheral IV access I have to have due to not being able to unhook my continuous benadryl infusion to infuse something else through my PICC. OH, and we made an interesting discovery today.....at some point in time, they changed the type of stitches they put in! Just an interesting fact, especially with what has gone on lately with the stitches. I had silk stitches for ages, and I don't know when they changed, but the PA identified the stitches I had this last time as being ethilon. We didn't tell her our thoughts of the stitch situation before we showed her the pictures of the recent issues at my PICC, and she automatically said something about how it appeared I was starting to react to the ethilon and that I couldn't have those anymore. She actually called the sores "corrosion". She did everything she could to avoid those spots with the PICC and (silk) stitches, but she ended up having to put the PICC on top of one of the spots. Thankfully she was able to avoid it with the stitches and said if it started to hurt or get irritated under there just to put some gauze under the PICC long enough for it to heal. I was kind of relieved to hear the change with the stitches because anytime you can identify a trigger and avoid it...the better life is! ;)
I had an appointment scheduled with my cardiologist tomorrow (6 month check-up), but we called to check if he still wanted to see me tomorrow or if he wanted to wait until after my tilt table test which has now been scheduled for the 3rd of November. It was decided that we should wait so my cardiologist appointment is now on November 30th. I've been pretty faithfully taking my blood pressure lying down, sitting, and standing each day to record it for my electrophysiologist (dysautonomia doctor at Duke). As I mentioned, I go for my tilt table test on the 3rd. She mentioned "a lot of testing" at my appointment so I don't know for sure what all they are going to do...whether its "just" the tilt (that is enough to qualify for "a lot"!!! ;)) or if there will be other things involved as well. All I know is I am going to need many prayers for strength and grace throughout this as I've heard how horrid it is from friends who have been through it. It's a tough situation because I don't really want to feel like serious crud throughout the test, but yet I really NEED to feel like that! Go figure! It's exciting to have it scheduled, because I feel there are maybe some answers out there for me, but I will be even more excited once it is over....unless I don't have enough energy for excitement! ;) As far as the other testing that has already been done, my echocardiogram showed mild Tricuspid Regurgitation (haven't talked with the doctor yet) and I haven't heard anything about my blood work or heart monitor. That's all I know for now. I'll give you more info when I hear anything which will probably be after my tilt table testing.
There was yet another death of a mast cell fighter over the weekend. :( Please pray for the lady's family and also the mast cell family as it always breaks us a bit when we hear of someone's battle ending. It's amazing how much forums can bring patients and their families together with others fighting mast cell disease! I know especially her husband could use a lot of prayer right now!
Well, I suppose that's all I have for you at the moment. I hope everyone has had a fantastic day so far! :)
Just a quick update to let you know that I'm on my way to an 8:30 appointment to get my PICC line replaced. The stitches came out and it slowly backed out of place. I went to get the stitches replaced yesterday, but the PICC had backed out too far to just restitch it, and that hospital doesn't carry the PICC I need, so I have to go to the main hospital to get it done. So, prayers for an uneventful PICC change are much appreciated! :)
Allison
Saturday, October 15, 2016
On the stretcher in the ER, waiting to be taken to my room. Who could not love that big poof ball of preciousness on my lap?? {1:00am is way passed Ezra's bedtime, so he decided my lap made a very good bed! ;)}
I'm not sure where to start. The last couple days have gone a LOT different than I had expected! In short...I came home yesterday evening. :) I was admitted to the hospital Thursday night, got in a room about 3:00am Friday, and didn't get settled until 5:30am. My arm started improving greatly on its own without any more antibiotics, so it was decided that I didn't have an infection after all. You may be thinking "well, what about it responding to antibiotics??"....just hang on while I explain our theory! So, I was up in the mountains on vacation when all of this started. I went down to Charlotte for the first infusion of antibiotics, decided to stay home for the second infusion, and was on my way back up to the mountains while doing my third. After those 3 infusions, my arm was looking TONS better. We originally thought the "infection" was coming back from stopping the antibiotics when it began going downhill again. However, we have since wondered if something up in the mountains didn't agree with my mast cells and caused this because I came home from the mountains on Thursday and between Thursday evening and Friday morning, my arm improved majorly without any intervention. Getting the connections? Just in case you aren't, let me explain...I came down Monday and Tuesday and it improved. Went back up and it declined. Came down from the mountains on Thursday and it improved greatly (without antibiotics, this time). THEN, here is the big thing...I got out of the hospital yesterday evening and, while waiting on Christina to bring the van, was exposed to a ton of triggers....it began declining again. Yep, folks...sounds like my mast cells have found a new place to party...my PICC line stitches. Thankfully, it does not appear to be a reaction to my PICC line and I don't have to continue antibiotics that my mast cells don't like right now, either!
They checked my tummy tube while I was in the hospital. Sadly, the clips in my intestines have given way. However, my tube was not completely out of the intestines yet!! My tube had backed up a good bit and was coiled in my stomach, but they didn't have to find placement all over again because the tip hadn't quite made it all the way out of the intestines. Probably my formula and meds were ending up in my stomach because the tip was backed out so far that it was just automatically pumping everything back into the stomach. So, to sum it up...they had to pull out the part of tube that was coiled in my stomach, put a wire down the tube, and advance it back to where it was supposed to be. And there was no mention of the need for J tube surgery!!!
Right now, I'm exhausted and not feeling so great. I'm not sure if it just has to do with everything that has happened in the last few days or if its actually a good ole time, genuine flare. Neither way is too fun.
NOW, to reply to a couple comments I received on my next-to-last caring bridge post...
#1... "400 mg??!! How are you not passed out all day long?! When I had my picc and was on IV benadryl, I was told the absolute MAX dose was 50 mg every 4 hours (300 mg/day), and even THAT was really pushing it. Ideally, benadryl is not meant/suggested to be taken more than 25 mg every 4 hours, or 50 mg every 6. Never actually heard of a doctor going outside the realm of those dosing guidelines. I'm just amazed you're not sedated all day long..."
Because of the repercussions of mast cell disease (histamine release - allergic type reactions), Benadryl is a HUGE part of treatment for most patients. Yes, the "normal" dose for Benadryl is 50mg every 4 to 6hrs. However, after being researched, 400mg a day was declared the highest safe amount in a 24hr period for "normal" situations. Above that has the ability to cause toxicity, a Benadryl coma, and, in the unfortunate circumstance, death. Many, many mast cell patients end up taking a LOT more than 400mg in a 24hr period just to keep them alive. I, personally, have taken much more than that within 24hrs (with medical supervision). That was before my CDI (Continuous Diphenhydramine [Benadryl} Infusion) when I was having up to 12 dystonic reactions a day. It comes to the point of no possible reasoning...yes, too much Benadryl can cause some really bad things, but it has been said that my disease would've quickly become fatal without it. I guess I said all this to say, my doctor wasn't in the wrong by setting the max daily dose at 400mg because that is the researched safe dose even for the normal, everyday patient. Many people are amazed, as you are, that I'm not sedated. I hear "Are you not sleepy??" or "I'm out of commission for the day after only 1 dose!" a lot! When I tell them no, they automatically go to the "immuned to it" theory which is also not true. I have been on a consistent rate through my continuous pump of Benadryl for nearly 3 years and it is still working as it did that first day. When you develop an immunity to it, you have to up the dose for it to become affective again. My mast cell specialist once explained why many mast cell patients can take so much Benadryl without becoming zombies... The sedation comes when the body doesn't use up all of the medication and that allows it to make them drowsy. With my body, my mast cells use up all of the medication and it therefore doesn't cause me to be drowsy. Just a little interesting fact... the reason my pump is at 13.5mg an hour is because on the continuous rate of 14mg, I was very groggy/drowsy and was sleeping a lot. 13.5mg is what my body needs at a continuous rate and any more isn't used. Sorry, this has become a VERY lengthy answer, but I just wanted to explain a little in detail....I hope you didn't mind! :)
#2... "maybe increase the other H1 or H2 that you use or do u take any benzo?"
My H1/H2 histamine blockers play a very important role in my treatment and I can definitely tell when I forget to take them, but aren't particularly more helpful for me at higher doses. Benzodiazepines are a HUGE no no for me...they cause dystonic reactions. Makes it difficult because most medical personnel always think my dystonic reaction is a seizure (looks almost identical) and automatically want to pump me full of Ativan which only makes it MUCH worse. Never a dull moment in MCAS life!....
I want to thank all of you for the outpouring of love in the comments section! I have been getting a ton of comments on my caring bridge posts and I can not even begin to find the words to tell you what those notes and your prayers mean to me! I am so overwhelmed with how many people care about me and are praying. Y'all have played an enormous roll in my fight with this disease!
I'm thinking today may be one of those "stay in your pjs, sleep, and watch movies" kind of day......too bad I had to unpack and shower. ;)
Taking Life One Day at HOME at a Time (hopefully we'll keep it that way!!)...
Allison
Well, I want to keep this short and sweet so I'll be replying to comments once I'm settled. My final decision was to try to stick it out and see if things would continue improving instead of automatically heading to the hospital. My doctor called, personally, yesterday morning to tell me that the hospital would give me Benadryl when needed (no matter what), may possibly try an IV steroid while impatient if needed, and informed us that one of my cultures came back positive, however it was highly suspected to have been a skin contaminant. They sent it off for more testing, and he gave me 3 things that would MAKE me go impatient and those were #1) a fever, #2) worsening of symptoms (pain, oozing, etc), and #3) the cultures coming back positive after being sent off for further testing. Well, no fever, and we don't know about the cultures yet, but the pain has worsened and the infection has opened up again with oozy discharge. Long story short...I'm on my way to a hospital admission as I write this. :( I'm to go through the ER and my hematologist has informed them of my situation, need for admittance, and approx arrival time. Please continue to pray as I suspect this will probably be a week long stay for antibiotics.
Oh, and to top things off....I'm having symptoms of my GJ tube being out of place yet again. Just what I needed. :| My hematologist stands with me on the opinion that a J tube is just another mess to deal with and is too risky, so we have informed him of this issue, hoping he can help persuade the GI to hold off at least a little longer and redo the GJ!!
I apologize for the delay in updating. I do have my reasons! ;) SO, we arrived at the infusion center in Charlotte, had my blood drawn for cultures, and started my antibiotic infusion. I was okay at first, but things quickly changed. My head began horribly itching, my face felt hot and was red, my eyes felt puffy, and Ezra started alerting. We informed the infusion nurse, she stopped the antibiotics, started a saline flush infusion, and paged the NP that was there. They decided to continue the saline, do a rescue push of benadryl, and contact my hematologist to come up with a plan. I began having abdominal cramps/pain, but the other symptoms slowly improved. My hematologist decided to start the antibiotic back at a slower rate and gave permission to do extra bolus doses as needed throughout the infusion. It worked better at a slower rate, although I did still have some symptoms. I was sneezing like crazy due to my nose swelling, had some stomach upset, etc. I got through it, though! :) We had arranged with the home health pharmacy to leave the box of infusions and other supplies outside if we weren't there in time. Due to the complications, we didn't get done with the infusion until after 7:00. We headed straight there to pick it up, only it was NOWHERE to be found. SOOOO, we called the after hours line at the pharmacy and, long story short, we finally got a call from a pharmacist who was coming, but would take 25 minutes to get there. We just hung out in the parking lot until she arrived, went inside, and got my box. It got to be SO late that we decided just to stop at home for last night's infusion and sleep a few hours before heading back. Last night I pretreated, and during the infusion, I developed a rash along with the itching, puffy eyes, redness, fatigue, etc. I decided to do a bigger pretreat this morning and I didn't have quite as bad of a reaction. They said I have Red Man Syndrome. We have a dilemma, though... The antibiotic has already made a humongous difference with the PICC infection, but the reaction is not backing down. I still have throat itching from my 9:00 dose this morning. We have been given a decision by my hematologist. He is not comfortable with me having more than 400mg of benadryl a day at home which only leaves me 76mg over my pump. Our choices are either...
1. Stop the vancomycin infusions since it has improved so much, and hope the PICC will continue improving.
Or...
2. Head to the hospital and be admitted to either continue Vanc or try a new antibiotic in IV form. Most antibiotics I have tried have been oral, which can mean I react to the ingredients/fillers and not the actual medicine itself.
I don't know what avenue to take. I hate the hospital, my family having to stay there, everything that comes with it, and I'm kind of skeptical with the issues of benadryl dosing...main question being, will they give me benadryl when needed??! I just finished a 16 day hospital stay and want nothing to do with going back, but I'm not all that comfortable risking the infection worsening again, either. I just need prayer for wisdom in decision making and peace with a specific choice. Honestly, I'm scared, feel at least somewhat helpless, hate our vacation has to have this included, and I'm just plain exhausted. I just really, really, REALLY want a week off to enjoy without this stuff happening. Deep down, I know there are reasons for this and the Lord is going to get me through this...but my heart and mind are torn apart with life as it is. I (and my family) just need your prayers right now! This doesn't just affect me...my family rides the waves with me, and whichever route I choose to steer the boat, it has an outcome for them as well. I have included new pictures so you can see the improvements the antibiotic has made so far. The pain is MUCH better and the yucky discharge/oozing has dried up a lot! And those of you who follow my journey and are nurses, I welcome your recommendation/opinion with this decision!
Taking Life One Exhausting Decision at a Time.....
Allison
My PICC line before and after 3 doses of IV antibiotics.
The grossly infected stitch on my PICC line before and after 3 doses of IV antibiotics.
Wow. If there were a word for {out of breath} I would certainly use it right now. Waking up whilst being told you have 45 minutes to get dressed and ready to go to be able to make it to Charlotte by around 2:00... yeah, that makes for a "running around like a chicken with its head cut off" kind of morning! Anyways, now I'll explain why all the commotion and need to get to Charlotte. Y'all already know about my PICC line pain, redness, oozing, and disgustingness at the stitches. Well, the pain has not backed down and the stitch has gotten worse. It's pretty good and nasty-through my eyes at least! You will get a chance to view it yourself below to make your own judgement if you wish. We emailed some pictures to my hematologist's nurse over the weekend and informed her of my latest ER trip. We received a phone call this morning, telling us that they were starting me on IV antibiotics (the one we already know is safe) and home health said the first dose has to be given in a medical facility before they will provide the supplies. So, 2:00 is when I'm supposed to be at the infusion center for my first dose. There is no confirmation that I do indeed have an infection, but a PICC infection is NOT something to mess with. If left untreated, you become septic (sepsis - blood infection) which can quickly kill you. They will take some blood cultures today (something the ER failed to do). If it is an infection, we should start seeing some improvements over the next few days. If this isn't an infection, there won't be improvement and we can look into the possibility of a reaction to the stitches, or God forbid, the PICC line itself. Most likely, if it isn't an infection, it would be the stitches IF I'm reacting to something. I'm a bit bummed that our vacation was, yet again, interrupted, but I can't risk life for fun. I have times that I'm greatly tempted to ignore everything medical/reality and just live... doing anything I please. Problem is, I wouldn't live too long like that! ;) Really hoping I don't have to interrupt things again, though! I am very thankful for the amazing team I have working with me who actually have the heart to go out of their way to make sure I get to go back to my vacation and not have to end it early! I'm very blessed to have them!
On a little bit of a different subject... My brother works part time as a volunteer firefighter/first responder. Yesterday their station was part of a search for a man who they ended up finding after he committed suicide. I can't seem to get that situation off of my heart right now, so I think the men that found him and that man's family could really use our prayers right now. Would you take a moment, as the Lord lays them on your heart, to pray? I can't imagine the heartbreak for those involved in this situation!
I have attached a couple photos of my PICC site below if you wish to view them.
Taking Life One Crazy Morning at a Time...
Allison
My possibly infected PICC line. Can you tell why it hurts and is excruciating when messed with??
A closer look at the nasty stitch from my possibly infected PICC line. Can you tell why it hurts and is excruciating when messed with??
