I finally started feeling improvement last night! By bedtime the pain/tenderness in my neck and around my Hickman was gone. I slept REALLY deeply and woke up without chills and my aches have greatly improved. My heart rate is still spiking but not as often and not quite as high and my headaches are still present, however the accompanying eye pain has decreased. I get my last dose of antibiotic tonight and then the plan is to be discharged tomorrow morning!! SOOOOOO looking forward to going home and hopefully I’ll get to stay out of the hospital this time! Oh… and my third covid test of the month still came back clear (I knew it would!).
The conclusion of all this mess is I was most likely reacting to the antibiotic they sent me home on. One of my labs came back low which could be consistent with a reaction. The antibiotic they have in the hospital is a different brand than the one I went home on. So it’s pretty clear my mast cells didn’t like the one at home. I hate to think what would’ve happened if I wouldn’t have come to the hospital and gotten off the culprit!
Well….one more night! Morning couldn’t get here soon enough!
Allison
One of my lovely heart rate spikes. 135 is better than 150!
Ezra being his spoiled self and sleeping on my pillow :)
Sweet Ezra snuggling with me.
The eyes that watched the nurse’s every move when giving me meds last night :)
Peekaboo! Love how Ezra sticks his nose through the bed rails!
Watching some Road To Avonlea reruns (not sure how much Ezra was comprehending ;))
So my time at home was short lived. I had good days Thursday through Sunday, but when Monday rolled around, things changed. I woke up Monday morning thinking I had just slept wrong. My neck, shoulders, and upper back were stiff and painful. By that evening it had spread full body, I had a horrid headache, and my eyes began hurting. I thought for sure I had a fever, but didn’t. Tuesday I woke up absolutely exhausted along with the rest of the symptoms. By Tuesday night I was starting to have moderate bouts of tachycardia (heart rate >100) and an odd rash on my face. Wednesday morning, the rash was gone but, when I was getting dressed, my heart suddenly started pounding and felt like it was running a marathon. I popped my pulse/ox on to find my heart rate was 140. Then last night it reached 150. I had been in touch with my infectious disease doctor and she had me tested for Covid and redid cultures - both being negative. I’m also having some swelling and tenderness on the side of my neck and chest where my Hickman is so they did an ultrasound which was clear of clots. The ultrasound tech said it almost looked like some kind of reaction causing it to swell. The doctors had come to the end of their outpatient resources so my infectious disease doctor sent me to the hospital for further work up and probable admission. So I came to the hospital this morning. They did a head CT, checked my eye pressure, did some extra fancy blood tests, and (ANOTHER) Covid test. They’re still puzzled at what is making me miserable. The infectious disease doctor said the antibiotic sometimes just makes people feel crummy and they usually just switch their antibiotic, but with me they would have to try a totally new antibiotic and who knows how my mast cells would handle it. So, they admitted me, have me hooked up to monitors to watch me closely, and finish out my antibiotic which ends Sunday. It is highly suspected I may be having a mast cell reaction to the antibiotic because, unbeknownst to me and my family, I went home on a different brand of a generic form of the antibiotic instead of the exact form I was getting at the hospital. Anyhow…..here I am again. Oh the life I lead…. {eye roll} lol
I greatly appreciate your prayers!
Allison
P.S. To answer some questions in my comments… Ezra has fully recovered from his ordeal with eating sand and having a sand impaction, thank the Lord!
Ezra and me waiting in the ER for a room to come available
My “beautiful” hospital jewelry (oxygen monitor on left finger and wrist and heart monitor)
Ezra sacked out (and snoring!) in my hospital bed.
I got my Hickman first thing yesterday morning. All went smoothly and I got to go home yesterday evening. I’m still rather sore from the Hickman (they have to make 2 small incisions, tunnel a small-ish tube through the chest wall, and suture it in plus the cuff that the tissue adheres to is meant to irritate that in there (what makes the tissue adhere). Anyhow, so it’s rather painful but thankfully I have better access to IV acetaminophen since the generics came available so I have better pain control at home. Looking forward to when its healed enough that the acetaminophen covers all of the pain though!
Thank you for your continued prayers! I’ll, Lord willing, only be on the IV antibiotic for another 10 days. Very happy to be home and so is Ezra! :)
There really was nothing to speak of yesterday. Just the normal.....talking to both the hospitalist and the infectious disease (ID) doctor, doing the antibiotic, and being bored! LOL I did ask the ID doctor about the 4 weeks of antibiotics and he said it was just what he normally did but he was going to check up on the exceptions to the 4 weeks rule and see if he could do just 2. Anyways, he came back later in the day to let me know that I did fit all of the exceptions so I get to do only 2 weeks from when my Hickman was removed (Sunday)! I’m so relieved! I did NOT wanna have to do 4 more weeks of antibiotics at home!
Today has been pretty much the same. Sittin’, chillin’, and waitin’! I did manage to get a shower tonight which was a huge blessing! AND....good news....it’s looking like my Hickman placement is on for tomorrow (Thursday)!!! Yay! We don’t have a scheduled time yet and it’s still possible it won’t work tomorrow but as of right now it’s in the system for tomorrow and I’m supposed to be NPO after midnight.
If I get my Hickman tomorrow morning and if all goes well I’m hoping to get to go home by tomorrow evening! Home, sweet home.....I’m so very ready! Ezra is going to go wild when we finally get to go home!
Thanks again for your prayers and support! They mean the world to me!
Yesterday was the most eventful day so far. I saw the infectious disease doctor first thing in the morning to let me know the plans for the day, I got my meds, and then they took me down to get an echocardiogram done to check for infection in my heart. I waited about 15 minutes after the echo before transport came to take me to radiology to get my Hickman removed. That was not fun because they have to pull the line while trying to get the tissue off the cuff so they literally have to tease tissue off the line. Plus this line had been in me a year and a half so it was good and stuck - they had to get the big blades to cut away the Hickman. I can’t have local anesthetic and I can’t really have general anesthesia 3 days apart so they give me a large dose of pain meds and then do it. It helps but it still is nearly excruciating. Anyhow, then I went absolutely loopy from the pain meds. They said I said something about an alien and my sis said “an alien?” And I said “where? I’m not scared...are you?” LOL that much pain med really does a number on my brain apparently! I finally got back to my room around 1 or so and a little later I moved to a regular room (WONDERFUL!) from the observation room (which had no shower, no bathroom, no thermostat, and was very small) that I had been in. Then yesterday evening I had new blood cultures drawn.
I slept so well last night! The aches were nearly nonexistent and the horrid evening headache I’d been having was gone last night so I finally got some good rest!
Today has been good. Good and boring! lol This is the part of the blood infection hospital journey I dread....I feel much better but I’m trapped in the hospital so I can’t just go do something! I may ever-so-sweetly plead with my nurse to let me take a spin around the hospital tomorrow...maybe take Ezra out! She’ll probably say no but a girl can ask! :) Anyhow, this morning I saw the weekend hospitalist and the infectious disease doctor that’s on for the week and got a synopsis of their plans. So we’re waiting on culture results (they have been negative so far and will be final on Wednesday evening) and they’re trying to coordinate anesthesia and radiology and, Lord willing, schedule my new Hickman placement for Thursday morning. The ID doctor said this morning that they plan to do antibiotics for 4 weeks (at home) from the time I have clear cultures. Usually it’s 2 so I’m going to ask tomorrow their reasoning for doing 4 this time. I’m hoping I’ll get to go home either Thursday evening or Friday morning but we’ll see once it gets closer. Ugh, when I need patience I guess the Lord just puts me in the hospital! ;) LOL Oh, and they said the echo was clear of infection in my heart so that’s good!
Good night all! I’ll try to continue to keep you updated. Thank you so much for your support and prayers!
It’s been a while since I’ve updated...Sorry! Life has been crazy to say the least and I really appreciate your continued prayers for my daddy and his cancer journey!
I personally have had an “adventurous” week. I woke up very achy Tuesday morning but I figured I’d slept wrong or was just having an EDS flare. Then as the day progressed, I started feeling my heart rate picking up and I was really not feeling well. I’d forgotten a LOT of my potassium infusions lately so my first thought was “ah, it’s my potassium dropping!”...so I started an infusion right away to remedy the situation. However, things didn’t improve and kept going downhill until I really recognized the feeling of a fever. My temp got up to 101.3 and I just KNEW the feeling...a blood infection. I contacted my infectious disease (ID) doctor Wednesday morning to ask for blood cultures. Well, I got a call back that afternoon denying my request and telling me to go to the ER instead because my last bout of blood infection went septic and I nearly ended up in deadly septic shock so she was concerned I was going to go septic while waiting for those results instead of going ahead with treatment at the hospital.
I pushed it out until Thursday afternoon because we had a lot that had to be done in preparation for me being inpatient. My fevers were spiking and breaking and not continual so I didn’t have a fever when I got to the ER but my heart rate was still high. They did blood cultures and some blood work to check all the important levels. Well, my white blood cell count was ok so they thought it surely couldn’t be a blood infection so they did a covid test, flu test, amongst other tests which were all negative. They decided to do a dose of an IV antibiotic and send me home on oral antibiotics (which never work out with my MCAS) hoping it was just a cold. I don’t know just how many times I kept telling them this felt like a blood infection (I’ve had HOW many now?) but no one really listened because “you’re white count looks great!”. Anyhow, I was thrilled to go home! I just wanted MY bed at that point because I had spiked another fever by discharge so my aches were MISERABLE on the ER “bed”. I hadn’t been home maybe 15-20 minutes and I get a call from the hospital just informing me that the blood culture they had drawn from my hickman was already growing. They said it was bacteria that could be contamination and the other culture (drawn from my arm) didn’t have it yet so they thought it could be contamination but then again it was odd because it usually doesn’t grow that fast if it’s just that it’s contaminated. Their conclusion was for me just to stay home and wait for word from the ID doctor. Well, I got a phone call from my ID doctor first thing Friday morning telling me my cultures were positive for blood infection and I needed to get back to the hospital. She said the IV antibiotic they gave me covered for 24hrs but I needed to be back to the ER by afternoon so they could get me admitted and get the antibiotic going again. She was not happy that they had sent me home! She kept saying she didn’t know why they sent me home. When I told her what they had said was their reasoning for sending me home, she said that clearly whoever I saw in the ER was not familiar with my history. It takes my white count a while to be affected by blood infections. Usually I have to be getting pretty bad before it starts dropping and it never goes high. By the time I got here yesterday afternoon my count had dropped to half of what it was Thursday and only .1 away from the official low bracket. We are making progress though! Last night was the first night since all this started that I haven’t had a fever, my heart rate is starting to get back down to normal, and my white count has started slightly climbing back up. The aches are still pretty rough and my appetite is about nil. I haven’t had any nutrition for around 4 days now so hopefully soon I’ll feel like running my formula again. Last night the aches were really bad and made it really hard to get comfortable enough to sleep. So, the official plan is to keep doing the IV antibiotics, remove my Hickman (hopefully tomorrow), draw more blood cultures (probably Monday), wait for negative results (takes 72hrs for official results), and then place a new hickman. Lord willing all will go smoothly and I can get HOME soon!
At least I’ve made it a year and a half since my last blood infection and Hickman change!!
Thank you so much for your prayers and encouragement!!
