Prayer & Fasting / Early Evening Update

This might be the final evening update if nothing major changes for the new several hours.

TJ is still only minimally responsive, but we are less concerned about that for the moment than we are about the clot.

As noted in the last post, this is the largest clot Mary Ann has ever seen, spanning three different veins, including the right jugular. If it were to break up it would truly be life threatening.

It is difficult to communicate the risk of this situation, it is very high. So we are asking for people to fast and pray tomorrow, from sun-up to sundown. We do still stand confident in Christ that TJ will be completely healed. But he isn't yet.

Finally, he is running a fever again, of 101.6, which hopefully come down within an hour or so with the assistance of the cooling jacket. However, we still don't know what is causing his temperature to continue to spike.

Prayer Requests

• That the clot goes away
• That his fever goes away -- for good -- or we find and effectively treat the cause
• That he continues to gently wake up

Answer to a Question
Somebody asks:

In re: to the jugular blood clot...is there a reason they cannot just go in and get it OR put a 'catch net' (cannot remember what it is called) ahead of it to snag it if it breaks loose?

They still might yet, we haven't discussed the issue with the doctors.

P.S. Mary Ann says that the diagram in this Wikipedia article is excellent -- just imagine it in three veins. Two really big and important ones. The diagram more or less speaks for itself in terms of why it causes the arm to swell.

P.P.S. TJ was put back on the vent as he went down for his MRI, per standard procedure for someone who is still being weaned (all transports go back onto the vent). They simply left him on for the rest of the night.

"Having a Clot in the Jugular Just Isn't a Good Idea"

The doppler results are back and TJ has a very big clot, "the biggest clot I've ever seen," according to Mary Ann. It is in his inner right jugular at an intersection between another vein running down his right arm, and a third sub-clavian vein.

They have put TJ on heparin -- a blood thinner -- to dissolve it. If it dissolves, things are ok. If it breaks apart -- which is possible -- it is life-threatening as parts of it make their way to the lungs and heart.

Prayer Request

• That the clot dissolves or miraculously goes away. (We'll take either)
  

The post title comes from another Mary Ann quote.

Going Down For MRI Now

Details whenever the doctors decide to share them.

MRI Scheduled For... Soon

The neurologist did a check and didn't see anything that was problematic but scheduled an MRI for today anyway. The feeding tube (ng tube) is weighted, meaning it has metal in it, so they have to get it out first.

They finished the dopplar scan of the arm but no word on results yet.

New Concerns

[Ed: The "Rest" of the Story and it's Follow Ups are below this post]

Just saw the pulmonologist and a couple new concerns are on radar. He is not waking up as fast as he "should" so they are doing a neuro consult. I also asked to have a pharmacist review ALL his meds to be sure that we do not have unintended consequences from having at least 10 different doctors writing orders at various times. He opens his eyes but is not following commands. This could be a simple as having had too much ativan earlier or it could signal a major neurological event (ie, brain damage from lack of oxygen). The second new issues today is a swollen right arm. This is the arm that was affected by the neck issue, had a PIC line, peripheral IV and jugular line leading to concerns of a blood clot in that arm. They will be doing a dopplar ultrasound to check this. He is doing well on the vent wean which started at 6 am.

Prayer for today:

• Neuro status- pray that there not a neurological reason for him not waking up
• Swollen arm: Please pray that they find the cause of the swelling and are able to solve the problem without further complications like throwing a clot to his lungs or brain.
  

I am still standing in confidence that God is good and will heal completely. Could use the treadmill to stop at any time, however!

Mary Ann

Follow Ups to 'The "Rest" of the Story'

(12:31)
Dawn Asks:

So, on which day was TJ put in the coma? Was he aware that he was being put into a coma, etc?

He was put into a coma Saturday (12/8) to intubate him, to rest his lungs and allow for a bronc wash (bronchoscopy). To the best of my knowledge, TJ knew about it (and probably had to give consent), but none of us expected it to last two weeks.

The "Rest" of the Story

Dr. Shari Emails:

THE REST OF THE STORY...
I've been hesitant to ask before and give you more to write about, but now that TJ is improving, I wonder if you could tell us how this all began, I.e. Events before hospitalization and intubation.

Stay with me as I throw out some seemingly random facts.

Through November, TJ had spent approximately 150 nights away from home. In late November (I believe the week of the 18th, but don't hold me to it) TJ got a slipped disk in his upper back. On November 29th TJ went into the dentist with a sore tooth, they found it was infected and pulled it.

All of us have bacteria sitting and growing in our mouths, not a big deal. About a third of us in the US have staph bacteria on or in us, and 0.84% carry MRSA. (Mary Ann probably has a greater chance of contracting and spreading MRSA due to her job as a school nurse.) Still not a real big deal -- until you throw all of these together.

For TJ to come down with MRSA he first needed some sort of opportune entry point into his body, we believe that he actually contracted MRSA when he had his tooth pulled. The wound left from the tooth was an open door.

Next, his immune system had to be running at less than 100%, traveling half of the time (literally, half) will do that to you.

For those of you counting, there is a four day break between when TJ is thought to have contracted MRSA and when he entered the hospital. Due to the slipped disk TJ was on a fair amount of pain meds, which would have masked initial symptoms of an infection. He might have been running a fever over the weekend between the dentist and the hospital (or should have been) but we wouldn't know. Also, pain in the chest or sides would have been masked to a certain degree.
By Monday TJ was feeling ill enough that he agreed to go see a doctor the next day (this is a big deal, it means he really wasn't feeling well). By Tuesday morning, Mary Ann took a look at him, suggest the ER and TJ agreed.

The initial diagnosis was congestive heart failure, and then pneumonia after an MRI. By Thursday we lacked a working a cause for the pneumonia but thought we were turning a corner. Friday things didn't look as rosy, on Saturday he was intubated.

Also on Saturday the doctor of infectious diseases was confident that TJ had a fungal infection causing the pneumonia so they did a bronc wash. Initial results were negative, but he was put on an anti-fungal antibiotic just in case. By Monday, however, we had the cultures back and it was obviously not fungal.

Finally, Monday (12/10) afternoon he was officially diagnosed with (CA)MRSA.

From there it has been a wild ride, with at least one near-death scare (at least it was at the time), heart rates of 235 combined with a fever of 103.2, a torn then miraculously better mitral valve, and more.


Addendum
MRSA is already something of a "superbug" in and of itself. This case has been weird enough that some of the doctors are wondering if this isn't a new mutation of MRSA. E.g., an überbug (über means "super super"). Doctors have been waiting for the überbug, but have yet to find it.

Time and labs will tell.

Morning Update

TJ's night was nice and quiet - he slept peacefully, although he did spike a fever around 3am, requiring the use of the cooling blanket. The vent settings were switched to CPAP for approximately 8 hours yesterday, making it an extraordinarily successful first attempt at weaning, and then it was switched back on to assisted breathing to give his lungs a rest through the night.

At 6am this morning they again switched the vent to CPAP, and so far his O2 saturation has been between 98% and 99% (and this is breathing through a very uncomfortable, large tube in his throat)! Please continue to pray that his vitals remain stable as he learns to breath again on his own.

We have 2 specific requests for today: Pray that TJ's fever will disappear, and pray for a successful extubation. The sooner TJ gets off that vent, the better he will feel. We are so appreciative of everyone's prayer! We will update again later in the day.

Delaware Joins!

I should be asleep, but obviously am not. Delaware -- the final state to visit the site -- brings us up to all 50 states, 72 countries, and just under 8,000 visitors. By morning here it will have surpassed 8,000 visitors, where visitors mean different people.

I can tell you all, this exceeded what we expected, by a lot. It's pretty cool.*

Four hours and three minutes until TJ goes back on the CPAP (MdT of course...)

*I actually threw up a tracker more or less on a whim to see if anybody was looking at the site, hence whether it needed to be updated or not. Uhm, yeah. Guess so.