Jon just added a "widget" on the right side of the page. If you put in your email address you will get updated by your choice of:
Shortly after 1:30 AM in the time zone you selected we will send the updates for the day (if any) to your subscribers.
TJ will now see the kidney doc on July 1- at least it is a little earlier! No other changes to report at this point, except that I have made a couple of really good dinners with no salt at all!
His second book, Leading From the Sandbox, came out yesterday so that is very exciting.
MA
Last week we found out that TJ has pretty significant kidney failure. His creatinine levels were elevated while he was in the hospital, but have taken quite a jump. For you medical types, here are the numbers: Creatinine 2.68, BUN 39, and GFR 25. He can't get into see a nephrologist (kidney specialist) until July 9th, but from a bit a research I have done it looks like he is at stage 4 (out of 5) of kidney failure. stage 5 is where you start dialysis. The cause is probably from the lack of blood flow to his kidneys while he was in septic shock in December. We are taking a 2 prong approach. One is to start diet limitations of sodium, protein, and phosphorus to decrease the load on his kidneys. The other, and far more important approach is to storm heaven once again for COMPLETE healing. Hey, if the Father could repair his mitral valve miraculously, kidneys should be nothing!
1 Chronicles 5:20. "They were helped in fighting them, and God handed the Hagrites and all their allies over to them, because they cried out to him during the battle. He answered their prayers, because they trusted in him." We are crying out to God as the battle continues.
Other key factors are controlling blood sugar and blood pressure. His blood pressure is pretty well controlled and he gets an insulin pump tomorrow that will tighten his blood sugar control which has been pretty decent.
Please note, that we probably won't have much, if anything, to post here until we can see the kidney doc in July. However, if any of you have some great low sodium recipes please let me know!
On a similar, but less serious note, I have had a mold reaction from where I work that has not let up since April, and I have not been in the building since April. I am short of breath and very fatigued. I saw a lung doctor last week and had several tests but no results or plan as yet. We make quite the dynamo pair these days!
Jon is looking for work and recovering from a very strenuous school year. Steven is in the Boundary Water Canoe Area leading groups into the wilderness on canoe trips. It is through a ministry called Boundary Water Experience. Last year he had the privilege of leading a couple of kids to the Lord. It is the perfect summer for him.
We deeply love and appreciate all of you!
Mary Ann
http://www.tworiverschurch.org/resources/recentSermons.htm
It is the one titled "Living Dangerously".
Thank you to all who prayed for my trip to Hong Kong. I was amazed that I had the energy that I had even speaking twelve times with numerous meetings. I was very encouraged.
Yesterday I saw the neurosurgeon and it was decided that I did not need surgery on my pinched disk for now. PTL. I do have some abnormal kidney tests which will be retested on Wednesday. This has been an issue since I left the hospital.
I do have abnormal kidney funtion which is a concern to the doctors. This could be a result of septic shock which I had in the ICU. I have been referred to a kidney specialist to see what they can determine. We continue to ask God for complete recovery including this issue.
It is not my health that concerns me most right now but that of Mary Ann. When she went back to work after my hospitalization, she suffered a severe mold reaction and discovered that there had been a leak at the school in December which had not been remediated. Mary Ann has severe reactions to mold. Essentially she has been out of work (with a few exceptions) since then. She suffers from severe lack of breath, trouble breathing and so far the steroids and antibiotics have not resolved the issue. She will not be going back as a school nurse next year. Our concern now is that God would graciously restore her to full health. Please join me in praying toward this end.
Steven is heading up to the boundary waters in northern Minnesota where he will again be a guide for a Christian group that ministers to inner city kids. as an outdoors man he is in his element there. Jon is looking for a summer job and business internship. We made a contact yesterday with Medtronics (when I was being prepped for an insulin pump) and he would love to see that happen.
My book, Leading From the Sandbox: Develop, Empower and Release High Impact Ministry Teams should be available in about three weeks.
As you pray, please remember relief efforts we are involved in in Myanmar and China in the aftermath of the Cyclones and Earthquakes. There are massive human needs in both places and ReachGlobal will be partnering with national Christians and ministries to do long term relief, development and church planting in these needy areas.
This weekend I will be in Knoxville, TN for meetings and will be preaching on Sunday.
Thank you for your love and prayers. If you have not done so, please check out my new leadership blog at www.LeadingFromTheSandbox.blogspot.com.
Gratefully, TJ for Mary Ann and the boys
For all those who are still faithfully checking for updates on this site, you may be interested in bookmarking TJ's new blog at www.LeadingFromTheSandbox.blogspot.com .
Those of you who know TJ understand how passionate he is about healthy churches, leaders and ministries, and this blog has practical application for all church leaders, missionaries, and ministry personnel.
We invite you to wander on over and check it out!
TJ called the cardiologist office today and got the results of the MRI of his heart-NORMAL! There is a very small amount of regurgitation in the mitral valve, but he does not need to do any follow up with the cardiologist. He started cardiac rehab to get his heart and lungs back in shape. He gets hooked up to a monitor and then follows a guided workout on various machines while staff watch his heart rate and rhythm and blood pressure. he will do this three times a week. The guy next to him couldn't figure out out how he did not have to have his broken mitral valve repaired- the cardiologist probably can't either. The miracle continues.
MA
TJ suggessted that we post the prayer update he sends out so here it is! Thank you so much for continuing to check and and pray. It gets kind of slow to try to post much since it is recovery in slow motion at this point for all of us, but this update will get you up to speed.
May Prayer Update
For security reasons please do not place this on the web
Dear Prayer Partners:
It is good to get back into the habit of communicating with you after these past challenging months. I am so humbled by those who have upheld our family in prayer.
On the health front, I think I am at 60% of normal energy with half my days being “good” days and half being “hard” days. On a hard day, the brain irritation that is a result of my long ICU stay causes significant fatigue and I simply need to stop whatever I am doing and rest. On a good day I can function well for six or so hours. Tomorrow, I start cardio rehabilitation to try to get back into shape. Last week I had an MRI to look at the heart valve situation, but have not heard back from the doctors. I will be seeing a neurosurgeon in the next week or so to figure out what needs to be done for my pinched nerve that has caused discomfort and weakness in my left arm and hand.
I would also ask you to pray for Mary Ann’s health (yep we are a great pair these days). While I was in the hospital, there was a flood in her school which resulted in significant mold. She has a severe mold allergy and was back home sick for several weeks while the school told us they were doing mold remediation. On returning to school she discovered there were areas that had not been taken care of and her doctor has said she cannot go back to the building for the rest of the school year. This situation has been frustrating to her and has caused her to live with significant discomfort.
On May 1, the manuscript of my new book, Leading from the Sandbox: Develop, Empower and Release High Impact Ministry Teams, will be set to get published. This book will be the team curriculum for ReachGlobal and hopefully for ministry teams around the world. Pray with me that the book will be available for the National Leadership conference the third week of June. The timeline was complicated by my illness.
One of the good things that came out of my illness was that the great leadership team of ReachGlobal ensured that nothing changed while I was gone and that no momentum was lost. I have chosen not to take back a number of responsibilities and to now concentrate on four things: Vision and strategy, leadership development of RG and national leaders around the world, resource development, and writing. I am deeply thankful for the wonderful team God has given ReachGlobal that makes this possible.
My major prayer “ask” for May is a two week trip that I will be taking to
Finally you will notice that my schedule is lighter – by design and by necessity. Thank you for your prayer. It is deeply appreciated – and needed.
May 1 All day consult with Gary Hunter on key ReachGlobal priorities
May 2 Preparation for
May 3-4 Home
May 5-9 Stay at Home week (one week per month when all members of the national office are in the office): meetings and preparation for HK.
May 10-11 Home
May 12-16 Preparation for
May 17-18 Travel to
May 19-30 Training, meetings, networking and speaking in
Again, I thank you for your prayer support. It means everything to us.
Obviously we have neglected this site for sometime now (since February 23rd, to be precise). (I (Jon) had come to the poor assumption that by this point visits were minimal. Well, in the last week we have had 191 visitors from 13 countries (and some of the visitors are new!)
TJ is up and running and all in all, doing great. His beard is most definitely back, he is back to work, a couple of weeks ago he spoke to a class at Bethel, and is traveling again (not international yet). He still tires more easily than he did before, and his voice is softer than it was before this whole, uhm, event. The doctors did not expect him to be back at work for 6-9 months after he was released. It is completely and undoubtedly evident that people are still praying for TJ, and that God is faithful.
Per the voice, that is expected to come back after some time. There isn't any physical damage to his vocal chords, etc. They just were roughed up a bit after being vented for so long.
Oh, and he is finally doing Facebook. He now has 251 friends (and still growing, thanks largely to a Facebook group Chip started), which is more than me! (At least Chip beats him with 600!) If you do Facebook, you can find him under "T.J. Addington."
It is weird to be posting again at all, in some ways this blog is the only remaining evidence that anything happened at all. Things are almost too normal. Maybe I am just still processing it (as well as rushing to finish last semester's work before I fail the whole thing, which wouldn't be cool.)
So thank you all for your prayers! I don't like displaying my emotions in public (much less in front of hundreds of people!) but it is so hard not to, this has been one of the most amazing things I have ever seen, and it was in my life.
P.S. I'll have at least one more post that shows the visiting stats, one almost needs the visuals to get a grasp on how much of a global event this became.
Yesterday TJ was officially discharged from physical and occupational therapy, which means he can go back to work without a doctor's note (which he was told he would otherwise need). And next week, he plans to do just that.
He says he currently has more ambition than energy, and it can be a little difficult when you look fine, look like you should be able to keep up your old schedule, but just don't have the energy to do so.
He also said (in a reference to another post regarding his mental status :-) that he is up to 92%.
Praise God!
It is getting harder to do what feels like relevant updates as recovery continues because this is much less dramatic than illness, but here is the latest:
TJ saw his primary physician last Monday (the internist and endocrinologist) who was pleased with his progress. He did some medication adjustment and is facilitating follow up with the infectious disease doctor and cardiologist ( this was missed at discharge by a different doc). Dr. C's clinic has an excellent diabetic education program with the goal to keep people's blood sugars in very tight control. We attended a 2 hour class on Monday afternoon on Advanced Carbohydrate counting where we learned how to count every gram of carb TJ eats so it can be covered with a short acting insulin. This doctor also checks his blood clotting times to be sure the Coumadin is the right dose to continue to dissolve the clot without causing other bleeding issues. He said that this will continue for several months and the biggest precaution is to avoid hitting his head. Dr. C also took a good listen to his heart and said that he has a grade II (out 0f VI) murmur which is not a big deal. The docs will still want to to another TEE at some point.
It has become apparent in the last couple of weeks that TJ's C5-6 herniation is still an issue and he will see the neurologist next week for that.
TJ had a video study of his vocal cords done on Tuesday to determine why he is still hoarse. This showed no damage to the cords or surrounding muscles, but there is some tension in the cords as a result of the physical trauma from multiple tubes getting shoved through there. He will have a few sessions with a speech therapist to work on this. He also only has one more PT and OT session scheduled, but needs to do exercises at home.
In answer to some questions, TJ is walking without a problem. If he is on a slippery sidewalk, he does not recover quite as quickly as before, but has not hit the ground either. We have had a series of fine snow falls and cold temperatures which make sidewalks treacherous, and he has done fine- I just hold my breath some times! He also started driving last week. He limits his driving at night or if he is tired, but having him drive frees both of us up and makes his life closer to normal. He has been doing some work from home and in meetings with his coworkers over coffee or meals. We both get tired way too fast (in my opinion!). We are amazed and very thankful for the speed of his recovery.
I started at work on a very limited basis this week (2 five hour stints) and will do the same next week. I will go back to my regular schedule on 2/19. My absence has taken a real toll on the two wonderful women I work most closely with so while they are very supportive, they are anxious to have me back.
About two weeks ago I got a call from a 17 year old single mom I have worked with over the last four years. It is a long story of abuse and addiction in her family. She and her 2 year old daughter (A) had been living with her boyfriend and her father (S) came to live with them last month to help out. Her boyfriend became abusive, got arrested, then kicked the other three out. With a lot of help from Chip and our church and extended family, her dad has gotten a job and place to live and B and her daughter are living with TJ's brother and his family. It is a huge adjustment to transition from a life of chaos surrounded by addiction to a healthy family. There are many strongholds of evil with grips on this family- generations of sexual abuse, addiction, and dysfunction so please pray for Becky, A and S as they start a new life and for protection for the families that are supporting them. Becky and S are believers, but have never been in a situation to grow in faith.
Prayer requests would be:
For continued recovery and healing for TJ. Pray that the murmur is totally resolved and other complications do not arise.
Resolution of the C5-6 herniation.
For renewed energy for all four of us- OK, I know this was traumatic, but like I am ready to tackle normal life, but we all run out of steam before we run out of stuff we need to get done! Jon will be tackling his incompletes from last semester as well as a very full coarse load. Chip has a bit to complete for his last semester sculpture class and also a large credit load.
For wisdom in what priorities TJ picks back up related to work and other ministry. This is a rather unique opportunity to choose what projects are the most strategic for him to put his time and energies into.
For me as I go back to work on the 19th. Becky's story is not unusual with the kids I work with and there is a back log of things waiting for me. I need to be wise in setting limits but please pray for a relatively peaceful couple of weeks when I go back ( like no new pregnancies, suicide attempts, or other big crisis in the lives of kids at the school).
We have had several meals with family and friends reviewing the events of Tim's illness. This blog and all of you who read it and pray plays a huge role in that story.
Once again with deep gratitude,
Mary Ann
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:
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
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:
[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
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!
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...
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 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...
TJ told me today that from here on he is going to celebrate his discharge date as his second birthday.
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!
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.
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.
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:
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!
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
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.
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...
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
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!
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.
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...
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
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!
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.
For a guy in his position, he's doing pretty well with politics.
Too bad about the diet Coke...
"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!
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
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!
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.
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.
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
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:
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.
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)
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.
There were a couple of questions on the last (informative and optimistic post), so here are my best answers.
Not to be nosy, but will they allow Tim to have a popsicle or a hard sucker. Those are sometimes what we use to give throat relief with an NG tube and they exercise your mouth :-)
Have you all considered the thought that this has been an amazing way to bring all of us us 'out there' here in CA and around the world to share in a Concert of Prayer? It is one of the most immediate 'Ask for according to my will...' prayer vigils I have ever been part of...
When we watch the news, there are so many bad things going on it’s a challenge to stay optimistic. It’s amazing to remember that God created all people and determined their time on earth. [TJ] encourages us in Acts 17:24-27 that there is no event in our world- good or bad- that does not first pass by the hands of God and that He does not use to build His church. (Emphasis added)
TJ is continuing to improve generally but very slowly, with both praises and prayer requests today. The biggest news for the day is that TJ is ready to leave the ICU. As soon as a bed becomes available in a special care unit (between ICU and a regular unit), he will be moving. As the doc was relating this news, he blanked on Mary Ann’s name, and Tim was able to croak out “Mary Ann” to correct him! That made Mary Ann’s morning.
Another highlight of TJ’s morning was spending some time looking at pictures on his computer that he had taken in
TJ’s morning also involved both OT and speech therapy, and those left him exhausted. That leads us to our biggest prayer requests for today:
It is very possible that TJ will improve more rapidly once he is out of ICU, as Jon explains below:
We have been getting some queries about seeing TJ now that he is getting better. The answer for almost everyone is a stronger "no" than before. If you want to stop by and see a family member that is different, but TJ is awake enough to simply become more tired out and anxious by visitors.
We are sorry for all of the close friends we have that would like to see him, but he simply is not in a position to do so. (There is some evidence that too much stimulation can slow down progress when coming out of a coma.)
We'll try to post a real update soon, in the meantime I thought I'd put this up.
I've had many comments regarding the blog, so I thought I would share how it came about.
The day after TJ entered the hospital I realized that there would be hundreds of people simply within his organization that would want to know what was going on. Because I already had a Blogger account I knew it would take about three minutes to set up a new one. In fact, the longest parts were coming up with a name and the look for it.
The basic idea was to provide a way to communicate with lots of people (TJ's organization and family) without sending out six to twelve emails a day. The idea of the blog was basically a whim - minimal energy to try.
I wasn't sure whether it would be helpful or not, so the next day (Thursday) I threw up a hit counter to figure out whether people were visiting or not. Within 24 hours there were over 500 people visiting it -- a pretty strong sign that it was worth keeping up.
Since that day, we have yet to have dip below 1,000 (in fact, I think 1,500) hits in a day. None of us had an idea of what was to come. Even on Christmas we had 1,600 hits (somebody looking at the page), I was sure it would dip down to 500 give or take that day.
As of right now we have had 9,200 different people visit the blog, and this does not include situations where couples or families have one computer and visit it at once. After considering the "family factor" we might be above 15,000 different people. Moreover, we have had people visiting from 75 countries, I suspect more for countries that go through the U.S. for security reasons.
I don't know why what is happening is happening, or what 'higher' purpose this blogs serves, but it's difficult to believe that there isn't a reason we can't see yet. That I can't see yet.
Many people have commented that the blog is a blessing to them in some way or another. Honestly, the number of people and the huge number of comments are an enormous blessing to us, as we know how many people petition the LORD to support us through prayer. Blogging has become our privilege.
As an econ major numbers make sense to me, and they say that more is going on than we can realize. And that means a lot when you walk in to see your dad or husband barely able to respond to the simplest of questions.
My dad's life life mission had been to glorify God and to build the church. I am sure we would not have chosen this path, but if this serves to build the church and glorify the Father, we'll take it. We'll argue, we might be upset (and that is ok), but we'll take it if it accomplishes God's will.
So to return to the topic, the blog was a whim, and has blessed us enormously. To all those who tell us it has been a blessing to them, I am glad. The truth is, I don't think any of us really know why (in a higher sense) the blog was started.
P.S. The highest number of hits we had was on December 13th, 5,400, I am trying to figure out why it spiked that day. Any ideas?
P.P.S. To Jon and Mandy who thought I might be being facetious, I'm not. That wasn't the only day bad things were happening to TJ. 12/12, 2,600 hits, 12/13, 5,400, 12/14, 4,500, 12/15, 3,100
I went in a little later today and saw the pulmonologist, the infectious disease doc, and the family practice doc who all said that there is slow steady progress upward. I asked the Family Practice doc what the chances would be that TJ could do rehab right at United Hospital on the floor run by the Sister Kenny Institute, and he said, "about 100%." Yeah!
The highlight of the day was when four very close friends visited and showed TJ a photo album of black and white pictures he had taken as a kid in Hong Kong and another picture book of Hong Kong. The bed was in the Lazy-Boy sort of position and he focused on all the pictures and reacted non verbally to each picture and the comments of our friends who have been to Hong Kong with us. I am hoping he decides to be as interactive with the speech therapist tomorrow! He was very tired after that exertion.
I have printed off a sheet of Winston Churchill, one of TJ's heroes, quotes to start reading to him. Someone asked about reading to him. I have been assuming that he has heard everything and talk to him every day about the date, the news, and what God is doing, and how he is doing. We have been reading scripture and try to vary the stimulation with CNN, CD's, and talking to him. Thank you for the suggestions -- it is helpful and encourages us to do what needs to be done.
The evening nurse commented on what a strong person he must be because "he surprised us all". I think she meant by surviving. I told her about this blog the thousands praying (and that he is the most self defined person most of us know!).
The specific prayer requests would be for continued progress with general physical strength and healing, and increasing mental clarity. Second for our family as we all have had that "hit by a mack truck" feeling the past couple of days. We are amazed about stories we are hearing about how God is using this whole situation in other people's lives. I am amazed when I think about what He is doing in my life and my faith in Him alone (being in a hospital that I know and trust is huge, too!). The verse that came to mind today is 2 Corinthians 12:9, " "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me." Amen!
This will be the last update for tonight.
Blessings and gratitude,
Mary Ann
The good news: TJ's vitals stayed good all night, and his sats were staying up even after he was off the CPAP and not on any O2.
The bad news is even with two shots of morphine and valium he didn't start sleeping until around 5 AM, around the same time I konked out.
The PT came in and tried to get him to move his arms and squeeze her hand. Of course he did neither for her, but promptly moved *both* arms to scratch his face.
The doctor that made it in while I was still there said his lungs sounded good.
When I left an hour ago or so he was still sleeping as best as one can with people poking you and sticking you. Basically, he has ICU jet lag. Not helpful at the moment...
TJ isn't really sleeping yet, light rest at best. He looks restless and opens his eyes every couple of minutes.
Pray that he gets some real rest tonight. That could be the biggest factor to boost his mental status.
The night nurse asked TJ if he was in pain or if his legs were bothering him because he was looking a little restless. He shook his head no (a good sign) to both. She asked if he was anxious and he nodded. So after a small morphine shot he's geeting to sleep.
Vitals are all looking good, with the only aid being the CPAP machine, I don't even think he is on the blood pressure medicine anymore.
So you can all pray that he rests well, and that tomorrow brings us more blessings.
Uncle Jon spent the night with TJ again and emailed me about it. To his credit, it was emailed long before it is getting posted.
I'll try to give a more timely report today.... At 10PM when I came in TJ had just been given a little morphine and Tylenol, as he had indicated to Deb that he was feeling some pain - she thought in his neck. The CPAP was put on at 10PM. Deb and I talked with TJ for about an hour; he was responsive with head nods and some expression. He was lifting his arms - like he was trying to stretch. At 11 we left TJ alone and he has slept most of the night. He was given another dose of Tylenol at 5AM. He is starting to wake at this point, so I predict today he will be more alert than yesterday. His temp has stayed been between 99 and 100.A few minutes ago I asked him how he was doing. He started talking.. minus the vocal cords... I'm not sure what he was saying but it was so good to see him communicating. The miracle of healing continues to unfold before us. Praise the Lord.
I have not been down to the hospital yet, but it occurred to me this morning that it could be helpful to do a non medical overview. TJ has been in bed for 25 days, and after he was intubated on 21 days ago did not even have his feet touch the floor except for a few minutes the day before yesterday. The physical therapist thought is was great that he could support himself
sitting for a whole 15 seconds! His arms a legs look thin, his right arm is still a little swollen from the clot, and his face looks gaunt because the whole time he was intubated he did not use his facial muscles as well as any other surface muscle in his body. The ET tube looked to be to be about 3/8 inch outer diameter and that was through his vocal cords so when he tries to speak he croaks and it hurts. The inside of his mouth hurts from being open due to the ET tube for so many days and repeated suctioning which was required. When he tries to smile it fades quickly but his eyes still twinkle when he tries to do that. He has not lost the TJ eyebrow lift and uses it generously with the nursing staff. For about 22 days he was on a insulin drip and therefore every hour finger sticks to check blood sugars. He has had 4 deep IV lines (the genesis of the clot) and a thoracentesis and a spinal tape, plus numerous arterial sticks to check for blood gas readings. Since he has a working PIC line most of the blood draws can be done through that. He also gets several medications subcutaneously so by a small shot. He once had a total of eight drips each on an individual pump, a chest tube attached to a water vacuum devicewith a scar on the side of his chest to remember it by, an NG tube, 2 feeding tubes with a feeding pump, oxygen support ranging from a nasal cannula to a variety of masks to the ventilator. He occasionally has a racking cough that is obviously painful. He has been on a cooling vest that is chilled by a small refrigeration unit. Every piece of equipment in the room has an alarm. There is another tube that we don't need to discuss. His poor nose is pretty raw and extremely tender and stuffy to boot. When rehab starts in earnest it will include gaining strength and coordination to sit and walk and do stairs. Speech therapy to work on swallowing and speech, and probably OT to get his hands functioning again. I put a diet coke in his had the other day and he did not even move it! Turning, working with PT, or when I mess with him to wash his hair with no rinse shampoo leaves him visibly fatigued. He has an automatic blood pressure cuff continually attached to his arms with two tubes coming from it, 4 monitor leads with wires, and and oxygen saturation monitor taped to a finger. He has had at least 4 echocardiograms, 3 MRIs, 4 cat scans, a doppler study of his arm, a sigmoidoscopy, an endoscopy and almost daily chest xrays. In his room it is never quiet and some light is always on. Either a pump is beeping or staff are in and out, or there is noise at the nurses station (it is a circle unit). This is simply life in the ICU.
The final analysis of all this is that GOD IS GOOD! TJ has gotten the best care available in modern medicine and even with that, he is alive due to God's intervention. We are so thankful to be where we are today and are trusting in God's grace for the long road ahead to FULL recovery. I am so grateful for the support from all of you. It seems that when I get discouraged just the right message or comment comes through and gets me refocused on our God and not the stormy sea around me. Without exaggeration, I do not think we would be at this point without the earnest prayer of so many of God's faithful servants. I am humbled and grateful. When I tell TJ about the blog and the numbers of people praying he really cannot get his head around that yet and looks really puzzled. I can't quite get my head around it and at least in theory, I have been conscious! We have had incredible support from family, our church, RG, friends and neighbors, and the staff at my school.
Grace and blessing to you all.
Love, Mary Ann
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