Thankful!

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

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. :-|

Allison

Changed Plans

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

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. :(

Allison

FREE!!!....Almost! ;)

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.

Allison

Excitement & Good News

Just a {almost} quick update...

Just chillin' while infusin'! :)

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

A Plan

Hey!

The infection site...
SO much better!!!

     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! :)

Allison

Relief....FINALLY!!!

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! :)

Lets Have A Party!

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.

Bye Bye Stitches...

Hello!

My PICC site
w/ prolene stitches.

     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! :)


Allison