Pneumonia

Mid week, around July 17, Jason had not been feeling well for days. He was getting really anxious with each (twice a day) nebulized antibiotic treatment. He asked me to notify the doctor and requested that the antibiotic be diluted (the first one we did was ordered as diluted and this current one-switched recently to Amikacin was not ordered as diluted) By Sunday, July 22, Jason absolutely DID NOT want his nebulized antibiotic. On Monday morning, Jason again did not want it, said it was making him worse, and asked me to call the doctor. We have "called" the doctor many times over the past few months and everything has always seemed to be well managed with home antibiotics, but this time was different. He did not want to wait until the scheduled trach change on August 8 to speak to them. So I sent a text to our nurse practitioner explaining the situation, gave a description of the drainage in the lungs, and how his temperature was not being controlled any longer with around the clock tylenol. We were instructed to go to the emergency room, and Jason did not fight it. We knew he did not feel well if he did not fight going to the ED knowing that an admission for pneumonia was to follow.

That first day, July 23, they did a full work up and admitted him to the neuro ICU. The ICU required because of the trach and ventilator. The neuro unit is because of Jason's base disease. His immune system cells (white blood cells, or WBC) were 50+ (normal range 4.5-11) on admission. The chest Xray showed RAGING pneumonia. I thought it would be quite difficult this time around to do a blog to keep everyone updated being Jason was feeling so bad...so I did a few days of facebook posts, which I'm revamping and placing in this blog.

The picture shows an X-ray of the pneumonia on the left taken on admission in the ED (as compared to the image on the right from February. The white areas are infection and the black area is good air exchange.

On Tuesday July 24, our lung team was still very concerned. Jason's WBC count was still high and his temperature was 100.6-102 overnight despite the Tylenol, antibiotics, and flooding the body with IV fluids. He was really out of it because of some ativan (anti-anxiety) that they gave him when they were trying to find ventilator settings that kept his oxygenation up and that matched his home ventilator the best the night prior. The team thought it best to really follow protocol and do what they would do for a patient in a sepsis situation (infection that is in the blood stream). They placed a central line (IJ), arterial line (in wrist to do blood gases more frequent), and did a broncoscopy (to clean out his lungs and send a culture). All the drugs from these procedures "snowed" (he was out of it again) him and he slept into the night.

On Wednesday, July 25, Jason had had a better night. Jason started to ask for things he normally wants as he came out of a drug induced "unresponsiveness." Although tired, he was asking for everything he normally would, denied pain, and says he felt better. His WBC was down to 41 from 53 on admission. Although the number needed to be much lower for discharge home, he was going in the right direction. He was on 2 IV antibiotics and one nebulized one. The lung cultures had started to grow, so they could have a better idea how to treat him. On this day his red blood cell (normal range 12-18) level very low. On admission, the number was 8 and he level was at 6.3 this day. There are many reasons for this-white blood cells are out in circulation, leaving no room for the reds to circulate and this can make anyone very weak (think to when you have flu or feel sick). The drop is also probably related to them flooding his body with fluids the previous 2 days and diluting his blood (which is all normal to do in a septic type situation).

On Thursday, July 26, the previous 24 hours showed a highest temperature of 101 relieved with Tylenol. His temperature at 8am was 98.6. Any and all love texted and messaged on Facebook was shared with him by this point as well! His mom and I took care of each other too. We switched who was at home with Annalise and who was at the hospital with Jason. Our neighbors "babysat" while we switched, which worked out very well during the entirety of the hospital stay. Jason was doing better, despite his white blood cell count still being 43. The red blood cells given the day before gave him a small bump in labs, but didn’t give him the burst of energy and “feel good” I was hoping for. They gave him Tylenol every 6 hours to prevent fevers and he stayed 100.5 or lower overnight.

Lung cultures grew back E.coli. I asked the infectious disease team if this happened often and they said they see it most often with aspiration. This would be when Jason gets tube feeds at night and some of it goes up his esophagus. For anyone else, we would be nauseous and vomit with this, but Jason’s trach prevents it from coming out, so it is going into his lungs instead...YUCK! And Jason never complains, so he has never mentioned being nauseous with food since we stopped bolus feeds back in April. Because his white blood cell count did not decrease, they did a CT scan around lunch time to look at his chest, belly, and pelvic area just to make sure he didn't have another infection somewhere else. The results of this scan revealed that Jason has 2 major problems, which I will discuss in the next blog.