It Happened That Night

Hey guys! So once again, I am writing this while inpatient at Children's Hospital Boston. I am currently here due to another cellulitis infection which initially began Wednesday evening. It was around 9pm that I awoke to a tremendous headache, scorching pain in the left buttock of my KTS area, a fever and a slew of other worrisome symptoms. As many of you who deal with these infections know, the onset of one is hardly pleasant. Since my pain was not yet out of control, I talked to my mom and dad and we decided to check in about how I was doing in about half an hour or so. I think we all knew that it was only a matter of minutes before I would be on my way to the ER, though. Still, I fought to remain optimistic in my mind while all of this was going on. I tried to convince myself that the pain may not get worse, and that I could perhaps hang on until tomorrow when my primary doctors were in and I would not have to go through the whole ER ordeal. However, the pain got substantially worse over the next half hour or so and suddenly it felt as though various steak knives were being jammed into my left buttock – it's a pain so intense, so deep, that I shudder when merely thinking about it. At that point, the hurting was unbearable and my mom and I were out the door to the ER in no time.

Emotionally, this was a rather hard experience as well because I had been taking Keflex twice daily at 2000 mg (a preventive dose Infectious Diseases put me on after the severity of my last infection). Once again, my body was breaking through yet another medicine and it was not only disheartening, but scary , too.

Perhaps this is the real kicker, though: For the past three weeks leading up to that infection, I had not been able to walk on my left leg due to severe pain that started at my frontal thigh area and stretched down past my knee cap. Throughout this time period I was in contact with Dr. Trenor and Dr. Fishman, but Dr. Alomari was out of town and I knew he would be a key component in getting to the root cause of what was causing me not to walk. So, just earlier that day (Wednesday), I had been at Children's and had a somewhat lengthy doctor's appointment with Dr. Alomari (who had just returned from his time abroad that day) in regards to this new and very problematic area. He ultrasounded my leg, and within minutes was able to diagnose me with “acute thrombophlebitis.” To treat it, I would have surgery on Monday, February 24^th in interventional radiology with Dr. Alomari. I came home from the appointment incredibly fatigued, so off to sleep I went. Little did I know my body had a bit of a surprise in store for me just a couple of hours later...

So, as I rode to the ER the night of the infection, I was not only dealing with the sensation of stake knives going into my butt but the pain from the widespread thrombophlebitis as well. Between not being able to walk nor sit, making it downstairs to my car proved to be quite an obstacle in itself.

Anyway, I am now here being treated with three IV antibiotics and go for surgery tomorrow with Dr. Alomari. The teams are doing a fantastic job of providing me with great pain relief, and everyone is so incredibly friendly! While the redness in my buttock has certainly gone down, it is still rather uncomfortable which tells me this infection will not be a quick one to treat.

I will update more soon! If you have any questions, please feel free to leave a comment below and I will be glad to answer it.

Below are recently taken pictures of the area with Thrombophlebitis.

I got to spend some time with my younger sister tonight too which was so incredibly awesome! I love her to pieces. Here is a picture of us from a mere few hours ago.

I will be in touch very shortly! Wishing you all well. - A

In A Moment's Notice (Part 1)

When I last wrote, things were seemingly getting better; albeit slowly. Still, everything was being managed just fine and the infection appeared to be responding well to intravenous treatment of antibiotic. Then, I woke up (while still inpatient) with the chills; it was previously planned I would go home that day... prior to the events that were unfolding at a moment's notice. Suddenly, without even the slightest of warning, I was wandering the vast mountains of Antarctica in nothing but a tank top and shorts. There were not enough blankets in the world to contain the numbing cold that occupied every crevice of my body. My temperature shot up to just under 104. It seemed the infection had progressed, and there was certainly no question now that it had entered my bloodstream. The usual people were involved in treating me, including Dr. Fishman, Dr. Alomari, infectious diseases and the allergists.

The next few days were utter hell as we fought to control the infection. I couldn't get out of bed to use the bathroom; when I stood up, it felt as though I was in a wind-tunnel. Standing would simply not suffice, for I could not maintain balance of any sort. Bed pans were a staple throughout this time period. Even getting my shivering body up on the bed pan was a challenge in itself, especially given where the infection was located (my back thigh). My energy was tossed completely, and lifting my head was something that seemed to be a tremendous feat.

The only time I would start to feel any relief was when the oxicodone, morphine,and moltrin were administered and started to kick in. Eventually, though, my fever would progress back to its just under 104 state, and the unrelenting chills would return along with the dizziness, nausea, intense headache, all over achi-ness, etc. Not to mention the thigh infection itself... My body wasn't done surprising me yet, however. I woke up the following day with two huge clots, one in each arm. They as well were infected. I wish I was joking. No doctor had ever seen anything like it before and are still having difficulty grasping the concept of how this may have occurred.

When people see my leg, they think it is just my leg that is impacted by this lovely condition we call Klippel-Trenaunay Syndrome. Fair enough, but for those of us who know better, we know that is far from the truth. We know it can get into our bloodstream and cause sepsis, travel to other realms of the body and wreak utter havoc. We know better, unfortunately.

I returned home from the hospital yesterday afternoon and will be writing a lot more about my time during my ten day stay. My KTS family as always pulled through for me and were the most incredible support group I could have asked for. Never could I have imagined people with such endearing hearts and souls being there for me day and night, that which I am incredibly grateful for. Think of this as somewhat of an introductory post.

My KT loves, whether you are a family member of a patient or a patient yourself, may you be at peace right now. If you are not, may your pain soon subside. May you know you are not alone and have a bundle of people in your corner at all times, no matter how isolated you may feel from the outside world at any given moment.

Love always,

Arianna

Admitted and Discharged Within Three Days...

Hey everyone,

Last time I wrote I was feeling particularly apprehensive in regards to my current health with Klippel-Trenaunay Syndrome. Since then, I have been admitted and released from Children's Hospital Boston. Normally I am inpatient for a longer time, so it all kind of feels like a blur, but I am incredibly thankful to be home in my own environment.

Long story short, I have something called thrombophlebitis. Thrombophlebitis is swelling (inflammation) of a vein caused by a blood clot.

The symptoms are as follows:

• Red, swollen, and irritated skin and tissue around the area, such as along an affected leg.
• Painful, warm, tender, or hard sensations in the area.
• Pain or tenderness may increase when you put pressure on the affected area.
• The swollen vein may feel like a tough "cord" under your skin.
• Flexing your ankle may also be painful. 
• Swollen foot or ankle, especially if only one side is swollen.

So, I am off antibiotics and can be on Ketorolac if I choose however right now my pain does not warrant taking one.

Enjoy a picture below of an incredibly frustrated me in the emergency room after seven hours. Ultimately, it ended up being a total of 12 hours in the emergency room. None of my doctors were there, and this meant telling copious amounts of professionals what KTS is in the first place. My favorite was when one of the female doctors asked me how we should treat this; yeah, that happened. Generally, Children's Hospital Boston is a shining star as far as medical care is concerned, but let's just say this trip was less than stellar (other than the impeccable ER and floor nurses). Once my regular doctors were involved, however, things went smooth and I felt safe and assured.