It has been two months since my last post because my journey has taken something that seems to be a mountain climb - and not in the best way. I'm still striving to reach the peak.
For most of the month of April, you would have found me camping out in the hospital and it wasn't my focus to update this blog.
To start it all off, I woke up one day with the left side of my head very wet - almost like I was trying to wash my head while I was asleep. It turned out to be leakage from the surgery 'scar.' I washed up and went through the day without any further leakage - until the next morning. Again, I woke up to wetness. It wasn't quite as wet as the day before but, instead of what seemed to be clear water, I was now dealing with brownish pus. We scheduled a doctor's appointment to get this thing examined for Thursday, April 12. Literally, 10 seconds after the doctor met with me, he sent me to the Emergency Room to check in to the hospital and get round 2 of surgery done the next day.
Well, surgery was done around noon on that Friday. This time, they re-opened the original scar and cleaned out the growing bacteria. They couldn't seal up my skull with the bone this time so they used a web of titanium to replace the bone. After the surgery, they started me on two antibiotics to further fight the infection - vancomycin and ceftriaxone. These were administered through the 24/7 IV (intravenous) that I was hooked up with. The vancomycin was the main antibiotic they were focusing on. For this, I got 1500 mg over 1.5 hours every 8 hours. The ceftriaxone was meant to support the fight. I don't remember the dosage, but this was added every 12 hours through the IV. This schedule was intended to go for the next 6 weeks.
For the next couple of days, nothing changed - except they moved me into a private room.
April 16, there was someone standing outside of my room and making a call to my wife to inform her of what was about to happen... In order for me to continue with the IV at home, I was getting a PICC - peripherally inserted central catheter - that ran from my upper arm all the way to the superior vena cava. Also, at this point I was no longer on the IV 24 hours - just when I was getting the antibiotics. Since the install, the PICC was used for all of the IV and all of the blood draw for testing.
Wednesday, April 18, I was scheduled to go home, but a woke to seeing dried blood on the pillow. It turned out that a small area of the stitches was bleeding a little bit. As a result, I got re-stitched... and had to stay another day to make sure this stitch worked.
Thursday, April 19 - I'm home! Due to the time I left the hospital, I only had to do one more dose of the two antibiotics. A major change was with the ceftriaxone - it was administered through the PICC from a large syringe instead of a standard IV. For this, I would simply attach the syringe to the PICC and take the next 10-15 minutes to slowly empty the syringe. The vancomycin was the standard bag - 1500 mg on vancomycin in 250 ml of saline. For the next couple of days, everything seemed to be going alright until late, Saturday evening. I started feeling the flu-like symptoms. It was too much like what I went through so many years ago thanks to Rebif. Things got worse on Sunday. We called the visiting nurse to get checked on. By the time he got here, it was already decided that I would be going back to the hospital.
Sunday night, there I was... the Emergency Room - actually, I should have mentioned earlier that Yale-New Haven does not have an ER; theirs is an Emergency Department or ED. Originally, they put me in a room and started the blood draw, vitals, etc. It also came time for me to get my antibiotics. They, apparently, didn't want to use the PICC for any of my tests, so they had already shot me up with a new IV on my left arm. Immediately, the message was delivered that we would hold on using the ceftriaxone AND the seizure medication that I was using at the time - I would only get the vancomycin until further notice. The next day, they moved me upstairs to room 4830. This room had three beds. Both by the window were occupied - the third became my new location. Fortunately, that didn't last long! The guy next to me got to go home shortly after I arrived and I got to move to the window. That left Joe and I as roommates. He was a great guy and we hit it off right away.
As the meds turned out, I was officially taken off of the ceftriaxone and returned to the seizure medication. The next day, we got another roommate - Anthony. Dealing with the results of a stroke, Anthony actuality liked the bed that I vacated. He wanted the control over the privacy and control over the lights that he couldn't do with daylight from the window. The result was that Anthony, Joe and I formed a great bond. If one of us was sleeping, the other two would carry on a conversation.
Other than getting several doctor visits, no much happened for the rest of the week - except they decided to go back to using the PICC around Wednesday...
On Saturday, the message was delivered that I would stay on the vancomycin - but slow down the input to at least 3 hours per session AND need to use 25 mg of Banophen 15-30 minutes prior to my IV. "Why?" you ask. Well, this was prescribed to help fight off the Red Man Syndrome that the vancomycin was presenting.
Finally, on May 2, I was sent home. Since then, I have used my 3 doses per day of vancomycin - but my appetite has disappeared. Most days, I ate nothing. Others, I couldn't stomach more than 200-300 calories for the whole day. Nothing tastes good!
As of today, May 21 (and my mom's birthday!), I have added some plain, whole yogurt to my diet. If nothing else, my plan is to consume a couple of tablespoons to add the probiotics to my digestive system. Today, I was able to stomach breakfast, lunch, and dinner of 2 tablespoons of yogurt for each 'meal.'
So, while I am hooked up to the IV, I'm posting my experience with my climb of the mountain. Hopefully, I'll reach the peak soon!
Oh, and let me just note that, since the original operation on January 29, I have not experienced any seizures.
