Complications

We are 17 days in to round three.  Since the rest of this post is really scary and it sounds like a lot of dangerous complications and tests, I'm going to start by relieving you and say that Jacob is looking good right now.  He's finally up, watching TV and he's eating Pringles (not my first choice for his nutrition, but not worth the battle either) His fever is down and his blood pressure is great now. Up until today, this round has had the least complications and been the smoothest one. Each day, I have been thanking God that things were going well and asking for His continued peace through this treatment. Last week, I went home for a few days. John spent most of the time with Jacob and Josh spent a few nights to so I could be home.  He was feeling good and when he's feeling good, well his biggest problem becomes boredom.  I got the feeling that Dad and John do a better job of entertaining Jacob with "guy stuff".  John is especially good at keeping Jacob busy playing "Call of Duty" on his PS3.  I knew that things could change quickly for Jacob with his counts at zero and I know that when he goes to transplant next month, I won't want to leave his side...so, I did my best to stay home and be with the other boys, get settled in to our new home and read & study all I could to prepare for the Bone Marrow Transplant.

Well, everything did change quickly last night and I came up to the hospital to see him and check on all that had been going on for the day.  Jacob had spiked a fever yesterday, and he was having some very bad headaches. Although he has had headaches all along, he's been able to manage them pretty well so this was unsettling to me and he asked me to stay for a while. Well, anytime Jacob gets a fever, they have to take some blood from his line and send it off to the lab for cultures. About 30 minutes after I arrived, the nurse came in with three 1 liter bags of fluid for him and let me know that his blood had grown some "cultures" (bacteria) and he had an infection in his line. This means that he has an infection throughout his bloodstream and that is very dangerous.  Once again, I listened as they spit out one of those scary words that triggers little waves of panic. This time the word was "sepsis".  -ugh...not good.

Since he was already running a fever and his blood pressure had already lowered, the extra fluids were to give him a "bolus" -don't ya just love all the new vocabulary words?-  A bolus is when they pump as much fluid as they can safely give as fast as they can get it into your body. The hope is that the extra fluid will add pressure to his circulatory system increasing his blood pressure.  This got to be a bit complicated because Jacob's line has not been working right for a while and it just didn't let the fluids in as fast as she wanted them to go. They had to get a pressurizing bag that basically just pushes the fluids through because his line kept stopping the pumps. It took a lot longer than they wanted it to, but it worked and his blood pressure started looking better quickly.

We suspected that the infection started in his line and with it working so badly, there was a lot of talk about the possibility of having to remove his central line and put in a new one before transplant.  This will most certainly happen, but we don't want to have to do that procedure while he is so sick and while his counts are at zero. Certainly, don't want to do it if he has bacteria everywhere.

We tried to sleep, but it was a very long night.  The nurse was in to check on him and do vitals about every 1/2 hour.  I'm sure Jacob didn't get any sleep at all. I slept maybe an hour or two, but there were a lot of interruptions and I was worried about him all night.  At 6:00 AM, the nurse came over and woke me up to say that things had gotten worse and she had called the resident and the head nurse practitioner.  He had another fever, his blood pressure was going bad again (142/38 - this time it was the big gap between the top and bottom numbers and how low the bottom number had gone) and now he was needing oxygen, unable to get enough on his own.  She also said that he was a little disoriented the last time she evaluated him and his pulse was "bounding" and something about his blood return being too fast or too slow...both bad. His hands were clammy, he was shivering cold as his temperature rose and he was exhausted.  They went straight to work getting him another bolus of fluid going and started on another new antibiotic. He now has a total of 5 different antibiotics working to cover just about every possible type of bacteria. 
- Septra
- Fortaz
- Vancomyacin
- Voriconazole
- Gentamiacin
In addition to those he gets,
- Ben/Phen (Benadryl & Phenegren mix for nausea)
- Kytril (for nausea)
- Tylenol (for the fever)
- Oxycodone (for pain & headaches)
- Dilauded (for pain when Oxy isn't enough)
- Glutamine (for mouth sores)
Also on the menu for today was a unit of blood and one of platelets. Another order of platelets will probably be on the agenda for tomorrow morning too.

Back to the day's complications...while she was pumping Jacob full of fluids and checking his vitals about every 15 minutes, a whole crew of doctors came in to talk to us.  They transferred him from the "chemo team" over to the "Layhe team" (dunno if I spelled that right...it sounds like "lay-hee") This happens anytime a chemo treatment patient gets a fever or has complications...then they say he is "sick" and goes back to the doctor side of care rather than the nursing side.  (Still it's the nurses that do all the care for him...it's just the doctors making bigger decisions for him now) 

The cultures had grown bacteria in just 12 hours and that means there was a lot of a bacterium in there.  They studied the bacteria and determined that it was called "strep veridim".  Apparently, this particular bacterium is the one they fear and one of the big reasons that Jacob has to stay in the hospital until his counts recover completely.  They watch for signs of these bacteria and if the signs begin, they treat for it even before they know for sure just because it is so common and they know it's a possibility. Also, it's best when they catch it really early. 
This is just what they did for Jacob and by the time they confirmed the type of infection, he had already been on the antibiotic to fight it for 24 hours.  This was a really good thing and probably the reason that he is looking better tonight as I write this! 

I learned that some of the treatments cause more symptoms and other complications.  The fluid bolus may have caused extra fluids to collect in his lungs because his oxygen levels were dropping now.  They ordered an x-ray on his lungs because he was not able to get enough oxygen on his own and needed a nasal cannula with 1 liter of oxygen to keep his saturation levels up enough. X-ray came back with no problems and his lungs were clear. 
They also did a urinalysis to check for a bladder infection -and that was clear.

By now, Jacob had told them that he had developed a blind spot in his left eye and the right eye still had a blind spot.  That, plus the headaches was enough to call the Moran Eye Center to get an eye specialist over for an exam.  They had to dilate his eyes again (he hates that!) and did an exam looking straight back in to his optic nerve.  Well, this test showed that his optic nerves are both quite swollen, enough to cause the blind spots.  As the pressure builds and the optic nerve swells, an area develops in the eye that you can't see through.  If the pressure goes down, then the blind spot should go away, but now we needed answers as to why he would have swollen optic nerves.  Well, the scary thing is that it could mean he had "intracranial pressure" (another great vocabulary word)
So...about 30 minutes later, the doctor came back to tell us we were going for a "walk" -to the CT scanner.  They did a CT scan to look for any possible swelling or hemorrhaging on his brain.  This was a scary moment while we all dropped everything, put him in a wheelchair and transferred his IV pole stuff to a new transport pole and hurried off to radiology.
The CT scan didn't show any swelling or fluid buildup or anything abnormal...whew!

So, we went back up to our home on the 4th floor for...
Another fever, blood pressure drop and fluid bolus number three for the day.

Since the CT didn't give us any answers, the docs were back soon to take us back down for an MRI.  The MRI machine is able to detect more details so they wanted to take another more thorough look at his head.  This also came back normal at first glance. The radiologist will be taking a closer look tonight and get back to us in the morning if he finds anything.

Now the last thing they plan to do to get to the bottom of this is to do another LP (Lumbar Puncture...oh, there's another vocabulary word! It's a fancy word for: "back poke") With that poke in the morning, they will take a little fluid out of his spinal column which will relieve some pressure and hopefully help the optic nerve swelling and possibly relieve the headaches.  They will also take send the fluid to the lab to check it for infection and leukemia cells.  They don't expect to find either of those things since his spinal fluid has been clear since the beginning of this battle, but they have to check just to be sure.  One of the things they will look for is meningitis-another thing they don't expect to find, but have to look for...just to be sure.

I love how they always check everything "just to be sure" ...somehow, I'm still uneasy about all this and I feel like we don't have any "sure" answers particularly for the headaches and blind spots and optic nerve swelling still after all those tests done today.  …and that feels pretty darn serious to me. But, we do know the source of the infection and the good news is that his last blood culture was done exactly 12 hours ago and nothing grew this time...yay! This means that the antibiotic cocktail they gave him is working. Hooray for antibiotics and hooray for prophylactic treatment. Hah! I just had to end this post with another big vocabulary word. If you are the first one to reply to this post with the correct definition for "prophylactic", I will send you an orange bracelet with Jacob's name on it that you can wear to show your brilliant supportive love for him! (...Cancer moms, I KNOW that you know this word, so I would love to give you one of Jacob's bracelets just for being one of my heroes :) Just come see us sometime and maybe we can have a bracelet trade off & I can have one to wear for your cutie too <3 )

P.S... I took several pictures today during all of this but they are still on my phone. Check back later and I will have them posted ;)