Life Approaches Normal (At least relatively speaking)

We haven't been very faithful at keeping this updated, you all have our apologies.

TJ is getting up and running faster than expected. Yesterday, he met with one of the men on his leadership team (ironic, considering he is on "sabbatical"). In contrast, a month ago he was in the ICU, half conscious, and not communicating. Today his voice is still hoarse, his short-term memory still isn't up to par, but he is gaining strength back, and overall, his cognitive ability has to be at least to 90% of what it was before.

Yesterday I had a doctor's appointment and it came up that my dad had been in the ICU. I gave a very brief rundown of the experience, and my doctor repeated at least three or four times that it was his sincere conviction that TJ is alive due to prayers and the grace of God.

For the rest of the family, I (Jon) just finished my January course, as Chip has as well. We both have until Monday before school starts back up. I am going back to work next week as well. Mary Ann, too, is going back to work on a part-time basis.

I think we all are starting to get our energy back, although it is coming slowly. But life is starting to finally fall back into a predictable cycle.

Our prayer requests are:

• That TJ and the family continue to regain strength and energy
• That Chip and Jon are able to start school again rested
• And that Jon can finish up last semester's work without too much trouble
• That TJ's memory comes back to full strength, quickly
• That TJ's voice returns to normal

Thank all of you for your prayers and faithful checks of the blog! We are still getting hundreds of hits a day, apparently even from new visitors as the individual people that have come to the blog has gone past 11,000 now. Over 500 people downloaded the audio file of TJ. You all are amazing! Second only to Him that brought us through this, and continues to uphold us as you do through prayers.

Specifics update

At the end of the first week of outpatient therapies we thought some specific updates could be useful. Overall, TJ tires quickly and still describes himself as weak, but slowly and steadily gaining strength. His physical therapist said she won't be seeing him for long and gave him a list of exercises to be doing at home.

Occupational therapy noted that his right arm is only about 1/3 as strong as his left-most likely due to the neck injury (C5-6 herniation) that he suffered about 3 weeks before getting sick. He cannot lift a 1/2 gallon of milk with his right hand and his neck is often sore. The OT also gave him home exercises. He thinks it will take a couple of hours a day to do all the things they gave him to do. No complaining- just the way it needs to be to make progress. He is also having noticeable "discomfort" in his right arm where the clot is located and will be on blood thinners for a long time.

TJ is seeing two speech therapists. One has a goal of working on short term memory, which is steadily improving but testing showed some deficits. The other is a vocal specialist. TJ is quite hoarse and she thinks there may be some paralysis of one side of his voice box. We thought they were going to use a scope to visualize the vocal chords yesterday, but that has been scheduled for February 5th. She also gave him some activities to do to increase breath capacity- the inspiration phase of breathing is still rather short.

TJ's internist/endocrinologist (he is both) has put him on a rigorous regime to keep his blood sugars in tight control. He checks his blood sugar by finger stick at least 4 times a day before meals and at bedtime. He has a correction scale of short acting insulin based on the immediate blood sugar. We also have to figure out the grams of carbohydrates he eats at each meal and then he adds more of the short acting insulin for the amount of carbs he has eaten. He also takes a long acting insulin twice a day. (Hurray for tiny needles!) There are many, many people who do this everyday, but we are still getting the hang of it. For me the adjustment is more detailed meal planning so we can figure out the carbs. Since I like to cook "ad lib" I have to pay more attention to what I am adding to a meal as well as paying attention to the total number of carbs. Time for a Sam's club tomorrow to load up on colorful low carb food.

For the many of you who are encouraging TJ to take the time he needs to recover, his work schedule has been cleared through March. He is meeting with some of his team either in person (so far at home) or by phone, and working on his laptop. He has no international travel scheduled until May. Between several hours of therapy per week, lab appointments, and doctor appointments life stays pretty busy! We really appreciate all the encouraging comments and continued prayer-they add octane to the fuel to keep us going!

Steven is now an official card carrying "woofer" or wilderness first responder. He successfully completed all the testing for the class yesterday and has a full week off before the new semester starts on February 4th.

Jon is still pushing hard on his racial reconciliation J term class. I can't believe the number of papers he has to do to meet the class requirements. He has always had a strong sense of justice so there is a big emotional investment for him in this class. His class ends of Tuesday and he has at least two papers to complete by then.

Our specific prayer requests would be :

~Healing of his neck injury
~Resolution of the clot
~Full recovery of his voice
~Strength and patience for the rehab process
~Sleep- TJ has not been sleeping well at night- not a big surprise given the discomfort he has and this whole experience.

With our deepest gratitude,

Mary Ann

TJ Speaks Again: The Nature of Grace

On Sunday TJ spoke at our home church, Rockpoint. I got a copy of the audio which you can download as an mp3 here. I was extremely proud to watch him get up and speak, welcomed by a standing ovation.

We've had at least one request to share some more details in general on how the family is doing, even "mundane" ones. So here is a brief post on mundane things.

Mary Ann is still getting used to the new way things are, and some days feels like she is, "wading through oatmeal." She is TJ's home nurse for the time being, as he continues to regain strength.

I (Jon) am taking a January course at Bethel that may yet kill me, hence the time of this post. It requires more way reading and writing than I have energy to do.

Chip is taking a January course through another school (I forget which), which is wilderness first response training. I know he has been pumped about the course for awhile, but it is 8:00am-5:00pm everyday, and in Minnesota, these have not been warm days. (It has to have been at least a week since we hit double digits.)

It's hardest for me to speak for Chip as we haven't connected much, but for at least my mom and I the last several weeks are hitting. Through December we were running on borrowed energy, and we are now paying that back plus interest.

We will be trying (for real) to be posting more often, even mundane details, and probably more detailed details, but currently it is a struggle to find the energy wake up and go through the day, much less post at the end of it. But, if you are all willing to be praying for us, we are more than willingly to be posting!

Specifically:

• That TJ continues to recover and gain back his strength and voice
• That Mary Ann, Jon, and Chip find the energy to get through the day, and are able to rest at night
• That the daily and scholastic pressures don't suck us down
• Finally, that God's goodness and the miracles we have seen are not forgotten during these days when we continue to need to lean on God
  

AN INVITATION

[This post is intentionally incorrectly dated so it stays on top for a bit]

As TJ and our family have begun to discuss all that has happened over the past month, we have realized in a very new and fresh way the need for the prayers of the body of Christ.

We realize that the vast majority of you have prayed for us because of the critical nature of TJ's illness. We are so appreciative of that expression of love and your prayers.

We have heard from several commenters who want to continue to pray for TJ's ministry and our family. If you would like to explore that possibility, will you please send an email to Arthur Ellison, our personal prayer team leader, at arthurellison@aol.com. Arthur will get back to you and further explore with you via email your interest.

For the time being we will continue to post updates a couple times a week through TJ's recovery period. While TJ was in the hospital I found myself checking blog comments first thing in the morning and last thing before I went to bed. Your prayer support and comments gave me what I needed to face the day's challenges and the peace to sleep (at least a little) at night. We are still in awe of how so many around the globe have prayed and are deeply grateful.

Mary Ann

My Turn, from TJ

God is good, all the time! That is a core conviction of mine and would have been true no matter what the outcome of my recent illness. But I am thankful that he is also a God of great grace and that his power is greater than any adversary, physical or otherwise.

This will not be a long post as my fingers don’t always cooperate with my mind. However, I wanted to personally thank you for your prayers and concern. I am deeply humbled to have had thousands of people praying for my recovery. Just today I learned that the EFC of Congo and Hong Kong were corporately praying and I have heard of other movements and people who interceded on my behalf. This does not include the thousands who have been accessing the blog on a regular basis (Thanks Jon for your ministry through the blog). I still find it hard to get my hands and mind around that but I am exceedingly grateful. Given the chain of events, I am convinced that it was prayer that made the difference as I hovered between life and death for many days.

I know from Mary Ann that at one point one of my physicians stood at the foot of my bed and said quietly, “we really need outside intervention at this point.” God provided that outside intervention. One of the most remarkable things is that when I was at my worst, one of my heart valves was leaking like a sieve and they were sure I needed heart surgery. Today none of the physicians can hear any issues with the valve. The cardiac specialist said, “It looks like you dodged that bullet. I don’t know how but I can’t hear anything.” Yes, God can and does heal, even miraculously today. I am a walking billboard to his power and his grace (even if I am walking a bit wobbly).

One of the T.J quotes that my staff often hears is “Nothing to prove, nothing to lose.” It means that I don’t have to be right, or prove anything to anyone, nor do I lose by being weak or wrong. I was amused to hear that I kept repeating that out loud as I woke up from my drug induced coma. It was appropriate because I had no strength, could not do anything for myself and faced what we thought would be a long recovery. It was a humbling place to be. I am so thankful for the support and help of Jon and Steven and Mary Ann who have been magnificent in their help, for family who spent nights with me on a rotating basis and for close friends who dropped everything to support the boys and Mary Ann. It was much harder on them than it was on me as I spent much of my time in a drug induced coma, unaware of the circumstance I was in.

It has been so good to be home. A friend provided a new bed that adjusts so sleeping is more comfortable. Next week I start outpatient physical therapy. Today I made what is usually a weekly trip to Borders Bookstore (it has been 45 days). Yesterday I got a much needed haircut and was able to go out to dinner with friends. While I am weak, it has been a surprise to everyone how quickly I have made progress in regaining strength (please continue to pray that it will continue). Before I left the hospital, Mary Ann and I went down to the ICU to thank the personnel there. The head nurse just kept saying “wow.” She could not believe that I could look so normal after being that sick. Again, I attribute that to prayer.

More than ever I am aware that every day is an undeserved gift from God. That I owe Him my life and that He has graciously granted me additional time to serve Him. I don’t deserve it but that is the nature of grace.

About the Diet Coke. One could assume from the blog a fixation on Diet Coke. I admit to enjoying it. The real issue was that for weeks I had nothing to drink except through my feeding tube and my mouth was constantly parched. What I craved was anything wet and cold to quench my thirst. Early on, after I was awake, Jon walked into my room when an unnamed nephew was visiting and there I was laying on the bed, clutching a Mountain Dew like it was the most precious thing in the world. Totally illegal from a medical point of view and I don’t even like Mountain Dew, but it was wet and cold. It was not until a week ago that I was allowed to have thin liquids. Until then I had to have “thickened liquids” which kind of ruins any taste that it had.

As I regain my strength I will be working to complete my book on ministry teams that I wrote this past year and hope to get it out by June.

I will keep you updated on progress. For a time my days will be filled with physical therapy, doctor visits, manuscript revisions and rest.

Again, I want to personally thank you for your prayer support. Now I need to go find a Diet Coke!

Something Like an Update

Jon is back in school and Mary Ann is both busy and tired getting into a new semi-normal routine, so we have not been posting as often as we have meant to.

First, as we have not posted this officially yet, TJ was discharged on Monday at 2:45pm. He is physically capable of everyday tasks -- sans driving -- but is still very weak (his words). He is feeling alright but still just exhausted in general, and so is settling into a new routine that includes a lot of naps. Nonetheless, he is quite happy to be home again.

Based on some of the comments it also seemed good to me to post something about the blog. As a family we are still discussing what to do with it. Do we shut it down including blocking off future access? Do we post every couple of days, once a week, etc. in the meantime? We're not sure yet, but will probably have an answer soon. In the meantime, we will update every couple of days (or so, as people who said they would update the blog (like me, Jon) forget...) with whatever news we have.

We do appreciate your continued prayers, especially regarding recovery. TJ has already been recovering faster than he is "supposed to," but this is something that will probably take months to complete.

The truth is there is still a long road ahead for us a family. It seems odd to not be running on adrenaline 24/7, and I don't think that this experience has really hit any of us yet. In the middle it's not real. In the middle you don't have time to let it hit you, and if you do, you don't have the energy. Mary Ann prepared herself for a good cry one night, but ended up falling asleep on the couch before she could get to it. We are all going to live through this for real, for the first time as TJ continues to want to learn more about what happened. It's been a long December, and it's not even over yet...

Weekend Update

I (Jon) was supposed to do an update last night and then forgot, my apologies.

Today, for the first time in a very long time we were able to sit down for a Sunday dinner *together*, at home. IT was wonderful.

Tomorrow morning TJ will officially be discharged from the hospital. He is weak (his words) and tired easily, but moves around without a walker or other aid, including stairs. His post-ICU progress truley has been amazing, although there is still a long road ahead.

I promise that we'll have at least one or two more posts in as many days. We still don't know what we are going to do with the blog. It feels so intertwined with the whole story it almost needs its own closure. But we'll sort that out later.

For now, thank you all for your prayers and support. As a family, we don't know how to communicate how much it has all meant to us. You carried us through this by asking for the hand of God, and as other times acting as it. Thank you.

Quick Question

Quick question for a few of you while people are still tuning into the blog: When was the last time you can remember TJ staying in the same city for so long? This aimed specifically at LN, RP, and TJ's mother, all people who more or less kept track of this during different time periods, and that I know watch the blog.

My guess is that TJ hasn't spent this much time in the Twin Cities (or somewhere else on vacation) in one stretch in at least 10 years. We are at 39 days in the hospital, 43 days in the Twin Cities...

By the way...

TJ told me today that from here on he is going to celebrate his discharge date as his second birthday.

Coming home very soon!

In rounds today the team decided that TJ should come home for a day pass on Sunday (like a trial run) and be discharged on Monday afternoon! Yippee! Antibiotics finish tomorrow- earlier than planned as he is responding so well which means NO tubes after tomorrow and no IV meds at home. He did stairs inside and outside in PT and walked some long halls. He was totally exhausted at the end of the day- but just 7 days ago it took 2 nurses to move him from a chair into bed! We will get the specifics of outpatient therapies at discharge, but probably all three-"SPOT"- about three times a week.

Monday morning the infectious disease specialist has a conference call with the head of MRSA research at the University of Minnesota and the Minnesota Department of Health to figure out what this super bug is that made TJ so very ill.

God is so good. Our gratitude to all of you prayer warriors is inexpressible!

Pass the Diet Coke, please!

TJ passed the video swallowing and can eat and drink without restrictions and without danger of an aspiration pneumonia! The first thing I did was pour a diet coke on ice- he has several more lined up against his window to keep them somewhat cold. He really does not usually drink all that much diet coke- a 12 pack can last a long time around home, but he has been so dry it is what he has been craving. I left him with a lot of ice water as well.

The doppler of his arm showed no change in the clot. The doctor explained that some swelling may reoccur as one of the vessels in his arm is almost completely occluded. He will be on blood thinners for a long time. He is pretty exhausted with the therapy schedule, but making great progress! He was not, however, impressed with the counting money exercise in OT today.

My apologies with the lateness of this entry. A dear friend and her son came over to move furniture and clean to make room in what has been TJ's study to become our temporary bedroom. We have a splint entry home so if we left the bedroom where it is he would have to do a lot of stairs. Friday is the day they do "rounds" (or a care team meeting) on rehab to discuss progress and determine an estimated time line for discharge. I am working to be ready with the rearrangement at home by Monday or Tuesday at the latest!

Oh yeah, one more big item- the beard is growing back quickly. I really do love his beard as long as I don't have to try to trim it!

Many blessings and much thankfulness.

Q & A About the Clot

Somebody Asks:

I have a medical question, more for your consideration than for my needing to have an answer. I apologize in advance for the length of this. A little background first: My daughter had Thoracic Outlet Syndrome last year which basically was a clot in a vein in her right shoulder caused by compression of the vein. Because of this I think about TJ's clot issue.

For my daughter, they very aggressively tried to dissolve as much of the clot as possible within a week of the first occurrence. After that she was on Coumadin for a number of months.

So my questions ...
1. My impression is that the longer a clot remains the more it tends to adhere to the vessel wall and become permanent. Are they concerned that the clot has been there so long that it will be difficult to get rid of by dissolving, which could possibly lead to permanent issues for TJ's arm if no other method for eliminating the clot is recommended?

2. Is the clot in a vein or an artery? My daughter's doctor said that arteries are very sturdy and can be operated on successfully much easy than a vein can, at least in my daughter's case. I just ask this if they consider a surgical method of clot removal.

1. The doctors haven't indicated at this point that they are worried about it becoming permanent, and haven't been taking action that would suggest that they are worried about it. The good news about it adhering more strongly is that it is less likely to break up (see the next answer). However, I can't answer this question beyond that.

2. The clot is in three veins, one in his right arm, his right jugular*, and his right sub-clavian vein. Both the jugular and the vein in his right arm dump into the sub-clavian, much like two rivers coming together. From there, the sub-clavian goes into the Superior Vena cava vein, which goes straight to the heart's right atrium, which pumps the blood into the right ventricle, which sends the blood to lungs, and then back to the heart.

The significance of this is that if the clot breaks loose into pieces instead of dissolving it goes straight to the heart (in seconds). If that does not cause a heart attack the piece continues to the lungs which can cause a pulmonary embolism, which can also cause sudden death (or lesser symptoms). And if there still are no problems it goes back to the heart. Hence, having it adhere strongly to the wall is a good thing at this point.

No one has discussed whether a surgical operation is possible at this point, the need for it has yet to arise. The difficulty is (as I, the non-medical understand it) is that they usually go in through the sub-clavian for such operations, exactly where the clot is, which could limit options.

Below are some illustrations from Gray's Anatomy of the Human Body (20th Ed) from 1918. This edition is in the public domain and so can freely and legally be redistributed. Handy, as human veins haven't moved in the last 90 years...


These show the path the blood takes (all downward), and should give you an idea of the size of the clot.

*Technically you have multiple jugulars, right, left, internal, external, anterior, etc. TJ's clot is in his right internal jugular, which is the big one you can feel on the side of your neck.

Evening Update

Today was an intense and tiring day for TJ as each OT set a functioning baseline and goals. TJ is pretty much exhausted. The video swallow test was put off until tomorrow, so still only thickened liquids to eat.

In the meantime his right arm has started to swell up again, probably due to the clot, they will be doing another doppler scan of his arm tonight.

So our prayer requests for the night are:

• A rehab without further complications so TJ can be home by early next week
• A successful swallow test
• No problems with the clot

Thank you all!

Miracle Man

And it's not our words this time. TJ was moved up to rehab today and the evening nurse greeted him with "so you're the miracle man!" Indeed. Apparently a nurse from the last station was trying to convince them how sick he was and they wouldn't believe it based on what they saw.

Tomorrow TJ starts intensive rehab, occupational therapy (OT), PT, and speech therapy (ST? how about SOPT for all of them?), OT and PT twice a day according to the evening nurse. Speech therapy mostly be swallowing at this point, as speech isn't too much of a difficulty. He is going from croaky to hoarse, like someone with a bad cough... like him.

As far as the mitral valve goes, the cardiologist says they don't need to check it again for another two to three months.

Personally I've (Jon) have seen noted improvement over the last 48 hours. He now has control over his fingers, even if he is still a little shaky, can get up out of bed and use the walker, and get back into bed.

I think how sick he was is starting to kick in, with some comments from the doctors. TJ told me that the doctors -- all of the doctors that have had him -- told him that he should be dead. I've been thinking this for awhile, but wasn't sure it was a good idea to blog it. Well, now I have Md backing.

Specific prayer requests would be for continued progress in recovery and for protection from anxiety as the reality of how close he was to dying sinks in. Also please pray for God's continued work outside of TJ through his experience. And, of course, don't forget praises for a not-dead TJ!

Evening Update Will Be Around 10 CST

Sorry, I know that's a little late...

Monday Update-BIG NEWS on Mitral Valve

Today was both uneventful but exciting. The nurse practitioner from the Pulmonology group said SHE COULD NOT HEAR A MURMUR!!! (murmurs=leakage). I did not see the cardiologist, but in his note he indicated that his only plan right now is to do a TEE as an outpatient to follow up on the mitral valve! It feels like the docs are all being cautious because the evidence was very clear for mitral valve damage that could only be repaired with surgery, and they are not too sure what happened. Keep praying and when the outpatient TEE confirms that healing has happened you will hear us yelling all the way in Hong Kong!

TJ was pretty exhausted today after pushing himself hard yesterday. Pulmonology, Neurology, and I think Cardiology all signed off (meaning they will no longer follow him in the hospital). A Rehab doctor evaluated him for rehab and said that he should be able to move to the rehab floor tomorrow. Most patients spend 5-10 days on the rehab floor to work on strength and activities of daily living. Among other things, he has to be able to do stairs before he can go home. It will be a very intense therapy schedule with PT, OT, and speech for swallowing and complex memory. His goal, of course, is to be home by the end of the week. (What's that quote? "Never underestimate the power of our determination..."?)

TJ will have another video swallowing study tomorrow or Wednesday. He got a diet coke today by mistake- he should not have thin liquids until they know that it all is going down the right pipe. That's OK by me- I really do not want to TJ to experience another pneumonia. However, there is a six pack of diet coke in the fridge next door to his room when he has clearance! He has moved up a step on the diet from pureed to very soft.

He is trying to grasp what has happened to himself. How do you comprehend thousands pf people worldwide praying for you and doctors telling you there is no reasonable explanation for your survival?

Specific prayer requests would be for continued progress in recovery and for protection from anxiety as the reality of how close he was to dying sinks in. Also please pray for God's continued work outside of TJ through his experience.

Blessings and great gratitude,

Mary Ann

Addition to Last Night's Update

I realized this morning that there was a detail I left out, on Saturday TJ was having difficulty using his individual fngers. Grasping a cup took both hands, and it was as if his four fingers were webbed together. Yesterday, he wastoo weak to do much, but had individual control over his fingers.

This is a small thing, but really important. Also, somebody recently asked if apraxia was still on the table. As far as we know, not at this point.

Evening Update

I meant to post this early, I am sorry for the delay.

TJ was up again today, and looked like he had more energy. He got his diet Coke with some ThickenUp, and read portions of the New York Times while sitting in a chair.

His ng tube was finally removed today, as he can swallow thick things (Mary Ann also brought in some real food). Finally, with the aid of a walker and a physical therapist he was able to walk 50 feet and back, which is a big deal.

TJ's personal goal is to be out of the hospital by the end of the week.

So that's the news for the day. Give thanks for the progress, and prayers that it continues!

P.S. For our unknown friends in Lincoln...

Status of the clot

They did a doppler study of both arms on Friday and the left arm is clear but the clot on the right is essentially unchanged so they restarted blood thinner shots again yesterday. TJ is not fond of the pureed food at the hospital. He needs to eat more to exercise his throat for swallowing safely to get the feeding tube out. The tube is really in the way of getting food to his mouth since it goes through the nose and hangs down. I put some Irish stew in the crock pot last night so I can puree that for him and the aroma woke me up- I think it will definitely have a lot more flavor than hospital food! I am also going to make some chicken (which will be pureed) and mashed potatoes and gravy for him. I make awesome chicken, mashed potatoes and gravy. We might just have to have you all over for some when this is all over. I won't even puree it.

Blessings!

Mary Ann

Another Step Forward

The steps going forward still aren't fast, but they are still moving forward.

TJ was tired today, but not in a bad way. He said he couldn't believe how little energy he had. I just explained that this is what happens when someone spends so much time in the hospital, at least in bed and unable to move.

He got the short story of why he was there, from pneumonia, to septic shock, to ARDS, etc., and handled it well. It's not traumatic if you don't remember it, at least not in the usual sense.

On a rather bright note, the doctor said he might be able to go home in as little as a week. I'm not holding my breath yet (I am not sure the statement warranted it) but just to hear something so optimistic was pretty cool.

So that's the news for the day. Give thanks for the progress, and prayers that it continues!

Not Really An Update...

Shortly after writing that we would have more to say, I realized that we really don't.

TJ was at least as awake today as he was yesterday, conversing, and still after a diet Coke they won't let him have.

It will still be a long road to recovery, and as noted, we still have that whole mitral valve bit.

The visitor policy is still limited, we really wore TJ out today.

Thank you all for your prayers, past and continuing, they really carried us through this.

TJ Out of ICU

They just moved him. We'll go for a further report later. He failed the swallow test again, but is allowed to eat things that has a consistency of honey at room temperature.

He is still talking, has had more than enough visitors so he's tired. But heh, life is getting good.

And for anyone counting (me), 32 days in the ICU. We actually got hugs leaving...

Morning phone call

I am going in a little later today but I called his nurse who has taken care of him for a whole 5 days in a row now! She said he slept very well after being up in the chair twice yesterday and is already on his quest for a diet coke. She asked him if drinks a lot of diet coke and he answered, "religiously." A video swallowing study is scheduled for around 11 am where they look at how much of what he swallows goes down the esophagus into the stomach and how much leaks into the trachea and then the lungs. Diet coke does not do much for pneumonia. This leakage is common after a long intubation and the tongue, mouth, and throat muscles are all weakened by the tube itself and lack of use.

Blessings!

Mary Ann

Renewed Request for 24 Hour Prayer for Healing of TJ's Mitral Valve

In talking to the cardiologist recently it appears that the plan for TJ's mitral valve is to wait until he is deemed stable enough for surgery and then go in -cracked sternum-open chest-open heart and replace the valve. The time line could get moved up considerably if for some reason his heart can no longer tolerate the level of leakage. The cardiologists are also somewhat vague on how they define "able to tolerate surgery." They have referenced "well along" in rehab, whatever that means (next week?)

Psalm 5 says:

1 Give ear to my words, O LORD,
consider my sighing.

2 Listen to my cry for help,
my King and my God,
for to you I pray.

3 In the morning, O LORD, you hear my voice;
in the morning I lay my requests before you
and wait in expectation.

With this attitude we would like to request a renewed 24 hour call to prayer (see side post) to pray specifically and expectantly for the healing of TJ's mitral valve. God has done amazing and truly miraculous things in TJ's illness, but he is not finished yet. For the sake of Your kingdom, Your name, and by Your grace we ask and wait expectantly, oh God!

Timeline

There is no real good reason for me to be up right now, but here I am.

I just finished putting together a timeline of TJ's hospital stay, which you can find here. It's hard to say too much about it except so much happened the events in the middle are already fading memories, almost like the shadows of dreams.

TJ Wins

For a guy in his position, he's doing pretty well with politics.

Too bad about the diet Coke...

Can I get a Coke in that Drip? (No, sorry!)

"Who is going to win the Iowa caucus, Hilary or Obama?"

"Obama."

It was kind of a croak, but it was an answer to my question, as TJ watched CNN's endless coverage of the "event."

When I walked in TJ was speaking to our head pastor, as he did when Mr. R N visited, and his brother J and his wife. Oh, and finally -- finally -- the neurologist (I threatened to shoot him if he didn't cooperate!) He really was looking the best since he's been in (31 days), vitals all good (heart rate a little high, but ok), including sats.

Over the three hours I was there (about 3:30 - 6:30) I watched and listened to TJ actually have conversations, including complete sentences. If you recall, three words yesterday were a big deal. For the most part the convesations weren't philosophical, although R N mentioned that he was having to read about phenomenology. As far as I could tell, he also was comprehending everything.

At one point he asked what I was drinking in my mug and I told him coffee, then asked if he was thirsty and he said yes. So I told him I'd try to find something for him to drink and asked if he would like a diet Coke if I could get it; he gave me the thumbs up. I got the PCA to come in with a cup of water, and watched TJ take several large and fast gulps -- until the nurse came in and confiscated the water. Apparently TJ failed his swallowing test this morning (the PCA hadn't gotten that message yet), he is aspirating (inhaling) some of what he swallows still.

I'm not sure how his short term memory is, when I came in I gave him a quick overview of why he was there, mentioning pneumonia, a staph infection, and his heart. When I left I asked him if he remembered why I said he was there and he replied, "bad stuff in the lungs." I asked if he remembered who was there when I came and he didn't know, when I asked if he remembered the person visiting he said yes.

On the other hand, he certainly couldn't forget the offer for diet Coke. When the nurse came in again later he said, "The service here is really bad."

"Are you giving me a hard time?"

"I can't even get a diet Coke!"

When I left the room for a couple minutes he pointed at K and said, "Do you know where to get a diet Coke?" I'm not sure how many times Coke came up in the time I was there, but he was hellbent on getting one. I'll almost be surprised if he doesn't manage to get some by morning (if not, I'm sure we'll all hear about it!)

So that's the news for the day, and the best news of the last month. Give thanks for the progress, and prayers that it continues!

Evening Update Will Be By 9:00 CST

And it has good news. But I am hungry and am going to eat first.

Late morning update

The main infectious disease doctor has not been in for a few days and was very encouraged with TJ's progress. He told TJ that he had "been on the brink" but expects him to recover fully with a lot of rehab. He also commented on the notable heart murmur (mitral valve leak). VS are all looking good. TJ worked more with the speech therapist. He also tried to look at the New York Times. The swallowing study may not be until tomorrow, but that is probably good. When I was working with him with some ice chips today (like 2 chips) it looked like he swallowed but still had some leaking into the "wrong pipe." The staff was about to get him up into the chair again using the lift. Baby steps continue in the right direction and we are very pleased. I have not heard any plans to move him out of ICU yet.

Blessings!

Mary Ann

Evening Update

This afternoon TJ was put into a chair with a lift and really seemed to enjoy it. He also was able to turn himself in bed a bit. While he was sitting some friends were in with photos of a trip to China together. When they left he croaked, "I love you, too" in response to their "we love you!" Then the speech therapist walked in and got nothing! I think it is the blue isolation gowns that make him highly suspicious. He is using his tongue and mouth more and swallowed after a couple ice chips so a swallowing study with fluoroscopy will be scheduled for tomorrow morning to see if the feeding tube can be removed and some kind of food started.

His white blood count is down a little (don't remember the number), temps have been good, and oxygen saturation has been good without being on oxygen. He has a productive cough with a lot of thick junk and the nurse deep suctioned a couple of times to help clear it since he is not quite getting it up and out on his own.

The beard came off because it was looking rather ragged and it would not be too much of a physical stressor to shave. I tried trimming it last week with bad results! When we moved out of the hospital apartment last week we used a shopping cart and had about 15 shopping bags. I told the guys that if TJ were pushing it with how his beard looked someone would put him in a shelter!

So give thanks for the progress, and prayers that it continues!

Brief Note on Security

I should have mentioned this earlier, or at least made it clear. We are only worried about using TJ's first name on the blog. Some of you have, and right now we're not worried for two reasons.

First, there are other, much more prominent places that list TJ's full name and title.

Second, I set this blog to not be indexed in search engines, so even if we posted his name, title, social security number, etc., it wouldn't come up on Google, etc. (Some of them have indexed it, but it will be removed within an acceptable time frame.)

So although nothing is bullet proof, stuff is good enough here.

Morning Update

This morning TJ was able sit up on the edge of his bed for ten minutes, and stand on his own for twenty seconds -- a pretty big deal. (The size -- literally -- tends to influence how aggresive the PT is. Small ladies won't try to stand TJ up in the event he can't do it.) And all of this without oxygen, which he is off for the time being.

They also deeply suctioned his lungs which led to a lot of coughing -- a good thing. Even after all of this his vitals are all doing pretty well. He is tired already, but he had a workout!

One of the cardiac doctors stopped in briefly to listen to the valve, which he said sounded the same as a week ago.

Finally, although this seems completely unrelated, for those of you who personally know TJ this will be shocking: his beard and mustache are gone. I haven't even seen a picture of TJ with no facial hair since before he was 19. Rumor has it he tried this over the summer while on vacation in Montana, but no evidence for this actually exists.

Good Morning

Boy are you guys good! I have never gotten over a sore throat so fast in my life! I am on my way to the hospital in just a few minutes and bringing a quote by Sir Winston Churchill to put up in TJ's room: "If you are going through hell, keep going."

MA

The "Real" Evening Update

This has been a rather mixed day. TJ slept well much of the night except when his sats and blood pressure dropped. The staff suctioned him, got a lot of thick junk out, put him back on oxygen and he rebounded. He has needed to remain on oxygen all day rather than room air which he has been on the last three days. His white count is up to 13,300 from 8,500 (which possibly indicates a new infection, 8,500 is a good number, 13,300 is not bad, but going up is not necessarily good). Chest X-Ray is essentially unchanged.

I got to the hospital around 11 am and he looked like he was breathing harder but was awake and alert until I left around 5 pm. He is moving everything more, and tried to whisper a couple answers to questions.

Around 2 pm he rather suddenly started to breath at about twice the rate he had been and indicated that he had some right sided chest pain. His pulse has been over 100 all day up from the 70's and 80's yesterday. The pulmonologist was still on the unit and came in and checked him right away. By then the pain had faded. To be thorough he ordered a 12 lead EKG which showed "subtle, but not necessarily bad" changes from the previous 12 lead. (He is continually monitored with a 3 lead EKG).

They also drew cardiac enzymes which were normal (elevated would indicate heart muscle damage) and will do another EKG tonight and in the morning. There are many possible explanations to the pulse, respirations, and sat changes today from rather benign to having to compensate for a serious medical issue like a secondary infection or returning congestive heart failure. No one is jumping to any conclusions and they will keep in the the ICU for the time being to keep a close eye on things.

The pulmonologist would like to get more aggressive about getting him up in a chair (probably using a lift) to help clear secretions, but they won't do this until his breathing slows down.

Prayer requests would be:

• That everything gets "back on track" quickly. The internist told him that he is not following the script for the New Year.
• For complete healing of the mitral valve.
• For the health of Chip, Jon, and me. Chip has a cold and bad sore throat, Jon is super tired, and I feel like I am getting what Chip has.

Thank you so much for continuing to do battle on TJ's behalf!

Happy New Year and much gratitude,

Mary Ann

Explaining "Contradicting" TEEs

For those of you who have been reading this blog for awhile now (we are on day 28 of being in the ICU, day 27 of the blog), you know there have been multiple TEEs done, three so far. The first showed TJ's mitral valve as regurgitating (leaking) "dramatically," and "torrentially," doctors words. The second showed only a moderate leak, the third was initially inconclusive. During this whole time we have been asking people to pray for a miraculous healing of TJ's heart.

However, needless to say, with each TEE showing something different and each cardiologist having their own opinion things were starting to get confusing. A friend who happens to be a cardiologist offered his services to our family however we needed them, and helped explain:

Depending where in the time course of the infection you are, and how the healing or damage is being repaired, all of the things you were told could be going on. It is kind of like watching a house being constructed with one picture describing the concrete foundation, another the wood framing, another the roof and another the walls and interior structures, depending upon when the pictures were taken.

He also noted, "Many people walk around play tennis and have a normal life with mild to moderate leaking of their mitral valve..." Finally, the second TEE was done more quickly due to TJ's condition.

The current consensus of the cardiologists is that TJ does need his mitral valve replaced, possible before coming home. We aren't changing our prayer request, but thought that it would be good to share the current medical opinion with you all, and the explanation for the different TEE results.

Evening Update

This isn't it. It will be whenever Mary Ann returns from the hospital and eats, etc.

December 13th, Visits, and Septic Shock

On the post, Genesis of a Blog, I noted that December 13th had a huge leap in the number of visitors and visits.* After a couple of theories I got an email from Mrs. V in which she said:

Been reading all the stuff you wrote today. December 13th must have been a critical day in your dad's physical and spiritual warfare. I know that afternoon was when you almost lost him. I believe God was prompting/compelling people by His Holy Spirit on Tim's behalf especially that day. Personally, that morning I saw the words "septic shock" and went to my knees in tears for God to spare Tim's life (if you don't remember, I have some medical background, being a dietitian)... (emphasis added)

I looked back to that date and sure enough, TJ did go into septic shock. With all the things that have happened I forgot that was one of them. Moreover, he was having blood pressure problems and pulmonary edema. The mortality rate for septic shock is about 50%. So lacking a better theory, that was probably it. I'm not sure that we realized how close he was to the other side that day -- so much had already happened. Thanks Mrs. V!

P.S. An actual update is below this post.

*A visitor is not the same thing as a visit (aka a hit). One person may visit multiple times, both had a huge jump that day.

Afternoon Update

Sorry this is kind of late coming. With what Mary Ann called a "blip" during the night TJ's blood pressure and sats went down. They corrected that, including putting him back on oxygen and suctioning crud out of his mouth, but it does mean another day in the ICU, which brings up another point. His white count is up a little bit too.

Nothing in the medical field is ever certain until it happens. So the doctors may very well plan to take TJ out of the ICU at such and such a time, but there is never a guarantee of results until it has happened.

Finally, TJ is continuing to become more alert and tracking with conversations. I'm hoping we have hit, or have almost hit, the real turning point on that end of things, where conditions improve quickly, but we'll see.