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May 18, 2012

Updates on Kaitlyn's Health #PrayForKaitlyn

Update #13 at 1:30p.m. Saturday:

We are home with Kaitlyn and this parental nightmare seems like it is coming to an end.

Last Saturday, Kaitlyn started to get a rash after five days of fever. Then, after ten different doctors, seven days in the hospital, five possible diagnoses, and a couple of scary moments, we are home and in the recovery and recuperation phase. That should take a week or so more, assuming all goes well.

So, although Kaitlyn is still under treatment for eight more days, we are home. Home sweet home.

She is drinking fluids, but still not eating well-- but is doing a little more each day. She is making forward progress. I've been paying $1 per sip and $5 per bite-- so I am out about $80 (the best money I have ever spent).

We will follow up on the heart issues and still have some tests to get (to actually and finally confirm Rocky Mountain Spotted Fever). However, those should not be major things.

We won't be alarmed if she has to go back since recuperation takes a while but, as long she progresses, we will have no more overnights in the hospital.

I might post one more update on this blog post. Kaitlyn's story will probably be in the news tomorrow, but you never know with news cycles. If she is, I will post it here.

Thanks for all your praying. Please keep praying for her full recovery and for her to have no long term complications.

Update #12 at 1:30p.m. Friday:

Just got a good cry out with Donna-- but it was a good cry-- the kind you want to have. We are seeing some light at the end of the tunnel with Kaitlyn. It is like we can breathe again.

The heart issues that knocked us for a spin aren't necessarily related to the illness-- she may just have a big heart. ;-) And, it is not that much bigger than normal.

It is something we will watch, but about 5% of kids her age have a left ventricle this size-- and she is all heart! Grin. I am glad they took it so seriously-- with two rushed tests last night and then some concern about enlargement-- but I am very relieved at this point.

Sometimes they find things like this because they are looking so closely, but they were always there. Also, there is also a chance that it is related to high fever (which she had for almost ten days). Either way, the heart issue is no longer a major concern for the moment (and probably not a concern long term-- though we will follow up).

So, here is what we know now about our sweet Kaitlyn:

  • All the docs are (now) pretty much on the same page that this is Rickettisial and probably Rock Mountain Spotted Fever (RMSF). As such, she is on the right treatment (doxycycline). It is working slowly, but it is working.
  • Since this does NOT appear to be Kawasaki, the most dangerous time has passed (it was very scary for us Wednesday morning-- I might share more on that later, but not now).
  • She is slow in recovery probably because she was late in getting treatment, due to the late presentation of the RMSF-indicating symptoms.
  • She is drinking pretty well (no IV for 24 hours) and she is eating a little. I was feeding her French Toast this morning-- not much, but some.
  • Her fever is pretty much down-- it pokes up a bit now and then, but nothing like the 103.9 we saw peaking Wednesday. We are "post fever," which is great news.
  • We are not going home today, but tomorrow is a possibility if she eats and recovery continues. That is big news. Once the Kawasaki issue (and possible related heart issue) was resolved, this can resume back on a slow but positive trajectory.
  • Her doxycycline treatment will go on for ten days and we expect her to take her time in getting back to full strength. We will be nearby, watching for relapses or other symptoms as these things can be quite complicated (as many have shared in the comments).

So, now we are moving ahead-- and it feels like progress. She is getting a little better each day (and has been for a couple days), but it is still frustratingly slow. But, with a firmer diagnosis, the Kawaski/cardiac issues behind us, and her getting a little better each day, it feels like this nightmare is slowly coming to an end. We are very hopeful about going home tomorrow-- and that is motivating Kaitlyn as well. She thinks seven days in a hospital bed is enough! (We agree!)

Kaitlyn is still very week, sleeps most of the time, and is not up for visitors, but she is moving in the right direction.

Thanks so much for all the prayers-- please keep praying for Kaitlyn.

Update #11 at 7:30a.m. Friday:

Day 6 in the hospital... day 11 of being sick.

She is drinking more and now eating a little, so we have some good news.

But, like always, we seem to have not-so-good news as well. We just received word that her cardiac tests point to an enlarge left atrium of her heart. That could be related to the disease or it could be just that she has a slightly enlarged heart.

I don't know much of that that means right now since I've been focusing my attention on Erlichia... then Rocky Mountain Spotted Fever... then Kawasaki Disease. Also, we are expecting specialists to come by with more details before noon.

We've had three doctors visit thus far this morning. Once the big Infectious Disease doc comes by I will update one more time.

More consults, and hopefully details, coming today.

Please keep praying for Kaitlyn.

Update #10 at 9:30p.m. Thursday:

The big news today is that the Infectious Disease (ID) team is involved and pursuing another avenue (Kawaski Disease) while the pediatric docs are pursuing Rocky Mountain Spotted Fever (RMSF).

As far as I am concerned, let's treat her for EVERYTHING and get this thing over.

Dear readers from the Vandy hospital staff: I am not upset by this-- all ideas are welcome and the first one who figures it out gets a big hug from me.

As odd as it sounds, I am hoping for RMSF (an expression I never thought I would say). If it is Rocky Mountain, she is over the worst (Wednesday morning) and getting a little better each day. The reason the ID people are pursuing Kawaski is because she is only getting a little better each day and the symptoms for Kawaski are actually pretty similar to Rocky Mountain.

I am thankful that Kaitlyn must be the most prayed for girl in America right now. Hundreds of thousands of people have seen tweets and blogs and, I hope, prayed. Our "elders" prayed Wednesday and since then we have seen slow improvement.

Tonight, though, were the new tests-- cardiac tests. (I really had a hard time watching them do two cardiac tests on my daughter.) Tomorrow will bring more blood tests. This is all because of the Kawaski Disease concern. Please pray with us for no cardiac damage (they have consistently heard a heart murmur, but that is not uncommon in severe times of illness). We need a good, clear heart reading and some good bloodwork tomorrow.

I just cancelled my trip to the Philippines and Japan. Jaclyn and I were supposed to leave tomorrow. I was speaking at Victory Church in Manila on Sunday, an amazing church with over fifty thousand people at all their sites on a weekend. Then we had some groundbreaking meetings with the leaders of several national Christian organizations and some conferences in Manila. Then we were off to Tokyo to preach at Tokyo Baptist Church and help make connections for church planting in partnership with the Upstream Collective and the IMB. I have sent my apologies to all involved. To be transparent, I do not understand what the Lord is doing in all this, but I trust Him regardless.

To be even more honest, someone else can preach, teach, and lead this weekend. I am very disappointed, but only I can be dad to Kaitlyn. Right now, I am about to go to bed in her hospital room, just 6 feet from her. At 1a.m. and 5a.m. I get up and try to get her to drink and eat a little. Only dad can do that. I am privileged to do that.

Please pray that tomorrow we will get great news on cardiac tests, continue to progress, and start talking about an end date to this long nightmare.

Update #9 at 4:30p.m. Thursday:

We had some progress and some new problems.

The good news is that she is drinking better and eating a little-- enough that the IV is out for the time being, though she has to drink 2oz. an hour or they put it back in. I am giving her $1 each time she drinks it! Seems like money well spent. ;-)

The new problems have to do with an unclear diagnosis and more tests. The Infectious Disease team is now more heavily involved because, although she is doing better, she is not doing "better enough" (my terms). If this is bacterial, the antibiotic should be working better by now. But, it is hard to tell for sure at this point. Either way, having four infectious disease doctors in the room is both comforting and disconcerting. They say we may be at the hospital for a while-- certainly through the weekend.

We are about to undergo new tests. If it is Kawasaki Disease (now back on the table), we need to do heart tests, blood tests, etc. But, they don't know what it is or why she is not responded better. So, the treatment is: keep treating as if it is Erlichia or Rocky Mountain Spotted Fever, but begin some defensive medicine in case it is Kawasaki Disease.

Needless to say, we are a bit demoralized by the whole thing today. However, it is not like Wednesday morning so we are glad for that.

We are about to start some heart testing right now.

Please keep praying for Kaitlyn.

Update #8 at 9:30a.m. Thursday:

We are on day 5 at the hospital and day 11 with this illness. This morning's blood tests came back indicating some progress-- levels are trending in the right direction. However, there are still concerns and they are bringing in some specialists today.

We don't have any hospital release date at this point-- Kaitlyn still does not want to drink or eat, sleeps most of the time, and is very lethargic. However, we are not as alarmed as we were Wednesday morning. She is still very sick, but yesterday morning was really bad, and we are better than yesterday morning. That is good. Now we want to move to "better."

We are meeting with some infectious disease specialists today for a few reasons. First, Kaityln is on the wrong side of the bell curve for recovery. In other words, most people would be doing better at this point. Second, we really don't have a conclusive diagnosis and some tests are confusing. (They are operating on the basis of Rocky Mountain Spotted Fever with lots of good reasons for that diagnosis.) Finally, they are probably going to run more tests for addition clarity-- but the infectious disease folks are going to order those.

I will post again when we have more information.

For more information on our location situation, I talked to Tom Wilemon, a reporter for The Tennessean, yesterday to get some details about his recent story.

Some excerpts:

Cases of tick-borne Rocky Mountain spotted fever are up 533 percent this spring compared to the same period last year, the Tennessee Department of Health said Thursday...

Symptoms usually appear two to 14 days after a bite from an infected tick...

Rocky Mountain spotted fever can be a severe or even fatal illness if not treated in the first few days of symptoms, according to the Centers for Disease Control. Doxycycline, the first-line treatment, is most effective if started before the fifth day of symptoms.

Be sure to read the whole story here.

I wish I could say that we started the Doxycycline during the first few days-- we did not. We were not really into full treatment until the 6th or 7th day as she did not have the symptoms until then (as the article says, symptoms appear between two and 14 days). The timing may explain why she is on the "wrong side" of the recovery bell curve as we did not have adequate symptoms and tests until Sunday.

In talking to Tom, I learned that there have been other cases in the area. We had heard (and I wrote below) that Kaitlyn was the first of the season, but that appears to be wrong-- or perhaps she was the first child or the first here at Vandy. I don't know for sure.

Lots of folks have commented on these diseases and the need for specialists, etc. For those who know me personally, they know that I am not a subtle or a passive man. However, Vanderbilt is one of the best and they have a strong reputation in many areas, including pediatric infectious diseases. I assure you-- I am making certain that I get my questions answered and the treatment is very appropriate for how things are progressing. We feel we are in very good hands. And, for the Vandy staff who have read this, all is good with me. ;-)

Thanks for your comments, notes, and suggestions. I read them all, but we are not up for visitors now.

Please keep praying for my Kaitlyn. Today is the day we want a big turnaround.

Update #7 at 5p.m. Wednesday:

Some good news and some irritating (though not necessarily bad) news.

First, the good. We had some improvement this afternoon. The morning was her lowest point yet in the nine days she has been sick and the four days in the hospital. However, the afternoon was more positive-- and the first time things stopped getting a little worse each day.

Kaitlyn actually ate two small meatballs, her first food in three or four days, and got in a wheelchair and Donna drove her around for a bit-- then Kaitlyn even walked around for a little while. That's good news. We were very concerned this morning but she rallied a bit this afternoon. The doctors (and the Stetzers) were pleased.

Second, the irritating. The frustrating news is that the tests I mentioned below came back as "inconclusive." This is not uncommon, I am told, as the "markers" take time to show up-- they want to test again in two weeks. However, based on the course of the disease thus far, they are quite convinced it is Rocky Mountain Spotted Fever. Based on my newly acquired Ph.D. in Wikipedia, WebMD and the CDC, I think they are right. ;-)

Regardless, I've requested (and I think they were going to do it anyway) to meet with more infectious disease specialists in the morning.

I am with my other daughters and we just got out a good cry-- which was kind of nice in a weird way. Now we are ready for an even better day tomorrow. Tomorrow will be the fifth day at Vanderbilt and the tenth day she has had a fever... and we'd really like it to be our last.

Tomorrow is key for the turnaround our elders prayed for today-- please pray for Kaitlyn that she drinks, eats, and continues to recover. Thanks to all of you for your prayers and kind messages.

Update #6 at 2p.m. Wednesday:

Well, we really are ready to get some confirmed information and really could use some good news.

A quick update: Ricetssia is also a possibility and we are hoping for test back tomorrow or Friday. That is also when we expect the Rocky Mountain Spotted Fever test to return. We've been told to expect a hospital stay of several more days unless there is a major turnaround today-- still no eating, drinking and she is doing lots of sleeping. Also, if she does show some improvement today, I've "requested," and they've agreed, to bring in another Infectious Disease specialist tomorrow morning.

Today, we called for the elders of our church (our Grace Church staff, basically), anointed her with oil, and prayed for a complete and total healing. This probably freaks some people out as they equate this with a "last ditch" effort. We don't-- it is just a biblical thing to do-- and we are not at a "last ditch." We just think that when you are really sick (and after four days at the hospital, I'd say you are), you are sick enough to call in the elders.

James 5:13-15 says:

Is anyone among you suffering? He should pray. Is anyone cheerful? He should sing praises. Is anyone among you sick? He should call for the elders of the church, and they should pray over him after anointing him with olive oil in the name of the Lord. The prayer of faith will save the sick person, and the Lord will restore him to health; if he has committed sins, he will be forgiven.

(Thanks also, to Rick Warren and Eric Geiger for praying with me on the phone today... and for all of your praying out there as well.)

So, we are praying and I/we are getting a bit more aggressive with what we do next... keep praying for my girl, Kaitlyn, please.

Update #5 at 11a.m. Wednesday:

We've been here going on our fourth day at Vanderbilt hospital. As of now, Kaityln is not making much progress. Actually, she is slightly worse from our (uninformed) view. She is having a lot of head and joint pain, and this is a new development. She is still covered in "spots," still sleeping 22 hours a day, etc. Our hearts break just seeing her there.

The second round of blood tests have come back and said that she does NOT have Erlichia or several viral pathogens for which they tested. The Rocky

Mountain Spotted Fever (RMSF) test is not back yet-- they did that one later in her third round of blood tests. Sometimes I think we are just searching in the dark, though the fits many of the symptoms of Rocky Mountain Spotted Fever (though this is the third "probably" diagnosis thus far and the first two were wrong-- not uncommon, but frustrating nevertheless).

It has been days since she ate anything and only sips her drink with medicine. We really need a turnaround today. Please pray with us.

If it is RMSF, she will have the (rather dubious) honor of being one of the first children in the state of TN this year-- 8 people out of one million get RMSF. However, we've been told that another patient has since been admitted and they suspect the patient has RMSF. They are about to put out a projection of a huge increase in the disease this summer (due to the very warm winter).

Please keep praying for Kailtyn so she can get back to being my fun and sweet little girl.

Update 4 at 10p.m. Tuesday:

We had a couple of bright spots today but also some disappointments. Kaitlyn's temp is up again tonight and she has not eaten for a couple of days. She only drinks when we give her medicine and she has to swallow her pills.

Right now, we need the temp down and to see her drinking and eating. That is what the doctors tell us it will take to see her heading home.

Praying for a better day tomorrow.

Update 3 at 6p.m. Tuesday:

We just were updated by the doctor. Kaitlyn has been moved from from "observation" to "inpatient." That means we are not expected to be going home in the immediate future-- she has to start eating, drinking, and turning a corner.

See the last update (below) for details on how things are going-- no change since then. Keep praying for my girl.

Update 2 at 3p.m. Tuesday:

One of the more frustrating realities with these kinds of infections is that you don't know what they are but have to treat based on symptoms, not the actual conclusive blood tests. So, at this point, they have consulted with some infectious disease specialists and think she (probably) has either Erlichia or Rocky Mountain Spotted Fever. Having six doctors in the room discussing the diagnosis is a bit disconcerting but also comforting in a weird way.

Needless to say, I have read lots on these things in the last few days! The symptoms sound most like Rocky Mountain Spotted Fever. Wikipedia explains it this way:

Rocky Mountain spotted fever is the most lethal and most frequently reported rickettsial illness in the United States... The disease is caused by Rickettsia rickettsii, a species of bacterium that is spread to humans by Dermacentor ticks. Initial signs and symptoms of the disease include sudden onset of fever, headache, and muscle pain, followed by development of rash. The disease can be difficult to diagnose in the early stages, and without prompt and appropriate treatment it can be fatal.

I've never heard of Ehrlicia, but I think that everyone has heard of Rocky Mountain Spotted Fever. According to Wikipedia (which is often wrong, I know), only about 800 people get it in the U.S. each year. We are getting "prompt and appropriate" treatment at one of the best hospitals in the world.

We do not remember a tick (which is pretty common they say) but all the symptoms are there. So, at this point, we are doing everything to treat as a bacterial infection. After nine days of fever and all her symptoms (she's covered in the red spots, etc.), they are being pretty attentive.

The weird thing is that it takes five days to determine if it is one of those things and you can't wait-- so we are treating as if it is one of those tick borne illnesses.

Kaitlyn has not eaten in a while and is only getting fluid through an IV, so that is the big thing we want to pray for now. She can't go home until she is eating, drinking, and making progress-- none of which is happening yet.

Please keep praying.

Update 1 at 11a.m. Tuesday: Just got word that we will be staying at least another night at the hospital. Kaitlyn is struggling to beat the infection and, to be honest, is having a hard time. We are still operating on the assumption this is a tick-borne bacterial infection and treating it as such. I will spare you all the medical symptoms. So far, she has not responded to the medication, but that generally takes time.

Please keep praying for my little girl.

Original post:

So, I was supposed to be in Atlanta at the National Conference on Preaching today. I was the guy holding Andy Stanley's Bible. Then, I was headed to the ReFuel Conference in Lynchburg, VA, where I was going to have a long talk with Jonathan Falwell and James MacDonald about keeping things exciting.

Well, I am at neither of those events. Instead, I am in a hospital room right at this moment with my 7 year old daughter, Kaitlyn.

I first tweeted about this on Sunday, though my daughter has been sick for a week (the folks at Grace Church know about this since I took a moment and prayed for her on Sunday).

Well, Sunday afternoon things got bad, and we spent about eight hours at the emergency room. They gave her an IV, diagnosed her with some sort of nebulous tick-borne ailment, and we started on some antibiotics. (The diagnosis has been uncertain at times, but it is still a variant of a tick-borne illness.)

We went home about midnight Sunday night thinking she was on the road to recovery.

Monday morning did not turn out well-- high fever, lethargy, etc. We saw the pediatrician in the morning, and she sent us right to the emergency room and we have not left the hospital since.

I debated whether to blog this and figured it was better to give the details because my wife put it on Facebook, and I assume they will mention something about it in Atlanta and Lynchburg, and I don't want bad information out there.

I called the folks at the National Conference on Preaching and ReFuel and they were so gracious. My church family at Grace Church is such an encouragement. My co-workers at LifeWay are great. So, if all goes well, we will head home today. If not, it might be a couple of days.

I appreciate all the kind Twitter and Facebook messages. Though I can't respond to them all, know that I do read them and appreciate them.

By the way, this picture was taken the day before she broke out in the Rocky Mountain Spotted Fever "rash." She felt fine so I took her to Red Robin (the manager Shane comments in the thread below). If you look closely, you can see the swollen lips and her eyes:
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Posted:May 18, 2012 at 12:00 am


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Updates on Kaitlyn's Health #PrayForKaitlyn