Trinity's Health Mystery Solved (We're 99.87% Sure)

Twice now Trinity has gotten what seemed like a regular kid-infecting virus that sent her crashing and to the ER. The first time caught us by such surprise that she was in a coma and coded three times at one ER before we got her to CCMC. We hoped it was a fluke since the doctors couldn't find a definitive answer, that is, until we went back 8 days ago with the same symptoms.

Thank God we sorta knew what to look for and got her in earlier this last time!

So the same doctors did even more tests last week, finally letting her go on Friday. This time I was starting to get the idea that the doctors—as brilliant as they are—were so narrowly focused on their particular specialties (i.e., doing their jobs) that they were over-complicating the diagnosis (or lack thereof). Talking with Trin's doc who's the bio-chemist/metabolic geneticist/MD/PhD is when we probed the most and got the best answers. My understanding of ketoacidosis, metabolism, etc. was greatly broadened during those visits.

So I thought, why not apply the simple deductive reasoning popularized by Sherlock Holmes? That is, when everything else has been eliminated as possibilities, whatever remains, no matter how improbable, must be the answer. It seemed highly improbable to the docs that Trinity got a garden-variety virus and crashed this hard—twice. But all the text-book causes had been eliminated. So I went over the sequence of events in both occurrences:

Trinity "seemed" to get a virus both times. Her body vomited like many people do naturally to get rid of the virus (if it was a virus). Then she couldn't keep food and water down, and "somehow" developed ketoacidosis and dehydration, causing her systems to shut down one by one.

Other facts I considered are these: Even when she was in a coma last April, her blood sugar "somehow" tested as normal. And even through that week of being unresponsive, when she came out of it (by removing the excess acid through dialysis that time), her brain and all other functions returned perfect working order. What can explain all this? Through visits with the docs and our own compulsion for in-depth research, here's what we have learned:

When you are sick and vomiting (and therefore not taking in calories) your body is in a type of fasting mode. And at a certain point in fasting, your body begins breaking down its own fatty acids and muscle tissues to maintain your blood sugar (if everything is working right, like insulin production). That natural process, known as ketosis, produces ketone bodies, which a healthy individual can regulate just fine through production of bicarbonate. Extreme ketosis becomes ketoacidosis, and can result in coma and/or death. Vomiting and dehydration can exacerbate this process. And it becomes a vicious cycle.

Our friend the bio-chemist/doc explained that generally the body can reverse ketosis by ingesting simple carbs like fruit, thereby eliminating the need to breakdown your own fatty acids to regulate blood sugar.

So really, since Trinity's body was going into ketosis and her blood sugar remained pretty constant, and even to the point where her higher brain functions and other less vital systems began shutting down to keep the vital organs going back in April, it seems her body was going through the natural processes God put in place to keep her alive. The problem seemed to us (Sarah and me and the aforementioned doctor) more and more like Trinity simply had a nausea problem when she needed to get those carbs going again.

So the doc prescribed Zofran, a very expensive anti-nausea medication (thankfully the Wal-mart generic was about 1/5 the price). The strategy was if we could help Trin control her nausea and keep fruit juice down after a vomiting spell, she could both rehydrate and refuel, and avoid ketoacidos and the ER/PICU. She also told us to get ketone test strips so we could monitor her ketone level at home when she is ill.

We hoped it would be months before we needed to test this strategy. When I got off stage yesterday with my praise team and looked at my iPhone, there were a number of texts yelling that Trinity was vomiting and they needed me home. AHHH!!!!!! I rushed home, got the Zophran prescription, and flew to the pharmacy.

Long story short: Trinity did get the same flu-type sickness her brothers had, but her genetic difficulties with extreme nausea (her mom and aunt get car sick at the drop of a turn signal) caused her to vomit several times. She took the Zofran tab around 11 and hasn't vomited again 22 hours later. Thank God! We got some fruit juice and water in her through many sips. Her fever was never super high, but she was pretty miserable for hours. The first ketone test showed trace amounts. Later tests showed zero ketones. Yes!!! It was working!

I kept her sipping water and juice all night after Sarah worked with her all day. This morning she sat up on the couch and said, "Dad, I want some strawberries!" "Do you want me to take you to the store to get some?" "Sure! I do!" she exclaimed gleefully. It was barely light and very foggy, so I was not so gleeful (except for the fact that my darling daughter was so much better!!).

We're very thankful for Doctor B. at Cook Children's for suggesting the Zofran, fruit, and ketone tests, as well as the other great docs we worked with. And we're thankful to God and all our friends for providing for our needs during this time of trials.

May we all have a happy Thanksgiving! I know we have much to thank God for. We think we have this figured out and under control. :)

Trinity should go home today!

The nurse just took Trin's central line out, we're getting one last thing done, and Sarah already signed discharge papers!!! Woo-hoo!!!!!!!!!!!

Trin's in a private room, and Dad's looking for more work

Taken earlier today!

We are no longer living like refugees (Tom Petty told me I don't have to you know). Moving to a private room from the very-busy-around-the-clock PICU is like moving from the lobby of a HOJO to a room at Holiday Inn Express. Except for that part where there is no lock on the door and all that.

Trinity moved tonight while I was at RHCC for Summit and praise team practice. Sarah got to be with Trin until she fell asleep in the new room. Now it's midnight, I'm working, and Sarah is home sleeping so she can work again tomorrow and then again on Friday. It works better for me to stay here with our very healthy daughter at night to work since they said Sarah could not bring her grand piano to the room to teach her students here. My computer is just a little more portable. :)

Why are we still here? Because somebody has ordered samples of Trinity's poop. She has no IV, no monitors, no nothing. She is completely back to normal. But we will still be here for a couple more days (or more?). They want to run more tests on her and her stool while she is strong and eating normally. We still get the same answer from all the specialists: they just don't have an answer.

To quote Tom Petty again, "I need to know!!" They're back to "square one" and "I won't back down" until we are in "a higher place." We do have a workable strategy to keep her from "free falling," which is better than knowing the cause and having no way to combat it. My little "American girl" belongs "among the wild flowers," so we wanna tell this condition "don't come around here no more." It's "wake up time," 'cause all this is "hard on me." "The waiting is the hardest part," and until we get a definitive "breakdown" on cause and resolution we are just "flirting with time." "It's time to move on." If you have never had a really sick kid, "you don't know how it feels to be me." "Here comes my girl," my "saving grace." "It's good to be king" of my domain, because my royal family is so full of life and love. I thank God for all the moments I've taken to spend with my kids these past seven months, knowing my time with them will not go on forever. I'm not just "running down a dream": I am taking more time to cuddle and instruct and worship with my children. When I see their pure hearts praise God, like when Trin dances before God who will "listen to her heart," I definitely feel "something in the air."

Okay, I'm over my Tom Petty kick for now (at least on this post: I'm about to crank up my Tom Petty playlist on iTunes now that his music is on my brain).

Since so many people who know and love us are reading this, I want to put this out there: I am a Web applications developer and Web site designer. I have been doing this professionally for a decade, even while working other jobs (twice as a full-time minister, and also while working as Associate Director of Information Technology at Cascade College). Since 2006 I've gone full-time and brought on a partner to manage operations and support. We've worked with some great clients, including Richland Hills Church of Christ (www.rhchurch.org) and Rochester College (www.rc.edu). And our company's income is greater than our business costs; the business does not have major debt.

However, starting from the time Trinity got sick back in April, we have not gotten enough new projects to pay two of us and quickly get debt-free as planned at the same time. It's obvious that our business model, which worked well three years ago, does not work as well with all this "hope and change." So we are learning and adapting. Our new strategy includes allowing the business to continue to grow, pay off debt, and build up reserves while we both work elsewhere. At the right time we'll begin furthering development with contractors and eventually hire ourselves back. Or maybe we'll just retire and let other people work for us. Yes!! Truly, our company and our products being developed have a very promising future—if we are wise stewards.

Long story short, I am looking for another job in the Fort Worth area. If you have a lead on a job for a senior web application developer and/or senior web designer who has broad experience in all major areas of information technology (and can quickly learn additional technologies) as well as graduate training in research, organizational growth, leadership, and conflict management, please forward it on to me. You can post the info as a comment, which I will not publish.

I'm up for short-term contracts, long-term contracts, or full-time jobs. While I prefer to stay in Fort Worth (and many projects make no difference in where I live), I am willing to consider great opportunities within half a day's drive from here. To set potential employers at ease, I don't have a set time frame for cutting and running, and if I find the right job, I would keep it as long as my employer and I are benefiting from my work.

It's hard for us to talk about all this publicly, as family finances is a taboo subject in American culture. But I'm past the point of having pride about this or worrying about what others will assume and gossip about. I know we're not the only small business struggling in this market. I also know we don't have a spending problem at my house: we have an income problem. I don't qualify nor would accept a tax-payer bailout for the same reasons I wouldn't accept VC funds: I don't want an outside funder controlling what we develop, and I don't expect other people to reward a business for continuing a business model that does not currently work so that they don't have to change and adapt. (Can we say "Government Motors"? And what about churches who keep cultural church/business models after they no longer work? That's another topic for another blog!)

The fact that we are struggling personally so much is a great lesson for us. Financial stress is one of the leading causes of divorce, and this time has helped Sarah and me see many of the weak spots in our bond. I'm happy to say that it's actually making us stronger by the grace of the God of covenants and relationships. The enemy has been attacking us relentlessly this year, yet we know that our Redeemer lives. We know full well God has bigger things in store for us, and we only need to be faithful in the few things we have now. The God who took the evil attack of Joseph's brothers and redeemed it so that Joseph became the leader of Egypt to save the world from famine—that same God is going to redeem the hard lessons we are learning and the attacks we are enduring to help the world some way some day. We say "blessed be the name of the Lord."

I like the broccoli!

Trin is awake and doing okay. I gave her a monkey bath (something my mom called a quick cleaning with a wet rag back in the day, a term that just stuck with me). We brushed her teeth and I got her a new cup of organic grapes and the staff brought her a wonderful raw salad.

Now she's watching Bolt. And as usual, she's quite entertaining to the nursing staff. Trinity gets at least 10 "she's so cute" accolades an hour. Yes, she is! What's even more special to we the parents is the many "she's so sweet" declarations they give her. It's because when she hurts and you say, "I'm sorry," she says with tears "that's okay!" And "I love you, mom." And "I miss my brothers." And "Oh, thank you for helping me."

In the hours since I started writing this post, she has been so fun. No more tears today. Just our happy Trinity beaming and proclaiming, "Oh, I feel much better today!" Thank you Jesus! Thank you Father! Thank you Spirit!

That girl is my world. Certainly I love my wife and my two sons just as much, but she's the one that the four of us are focused on right now. "When one part of the body hurts, the rest of the body hurts along side it; and when that one is happy again, the whole body is happy together" (JKV: James Kevin Version).

What kid do you guys know that volunteers these words: "I like the broccoli!"? :)

UPDATE: Trinity just took a break from eating her salad to say, "Dad... It is a great day!" Yes it is, sweetheart.

Trinity's body is slowly getting back to normal

Yesterday Trin slept off and on throughout the morning and was wide awake from noon until 9-ish PM. We loved seeing her so alert and communicative— she had not been that lucid since Friday (she did not show signs of sickness until Saturday). It was a good sign that when, her brothers were here for a visit, she really wanted to get out of bed and play with them. Of course she can't yet, but it is still a good sign that she wants to do so.

I had hoped her internal clock would reset and that she would sleep last night. Thankfully, it was so. Around 9:00 PM I put her DVD of RHCC's "Jonah" Summer Spectacular awesomeness in her DVD player, and she began drifting off. Around 10:00 I sang her favorite chorus, "You Are My Sunshine," prayed with her, and turned off the TV. She was soon fast asleep. Sweet!

I continued to work beside her until around 1:30 AM. Then I slept until around 5:00 and I'm online about to work. Trinity has been up to use the potty and is now back asleep. That's closer to normal. She generally sleeps from 8-something until 7:00 AM.

There were no significant changes overnight. Her labs had improved greatly by evening, and we're hopeful that they will be even better this morning. She might get to ride around the hospital today in one of their spiffy wagon+IV-tree contraptions.

The boys got to sleep over with one of their best buddies. After sitting with Trin nearly non-stop since Sunday, Sarah finally went home last night to get some rest herself, as she has a full day of teaching and activities for our boys. She'll take over again later tonight, and I'll head on to Richland Hills Church of Christ to sing with the Yellow Team at Summit—that is, if things continue as well as they are with Trinity (and there's no reason to think otherwise right now). [Wow, I thought it was Wednesday, but it ain't! So no, Ryan, I won't show up 24 hours early for Summit after all!]

What's on our prayer list? An answer! What causes her to crash like this? A number of MDs/PhDs and the Parkers want to know. Her docs have been scratching their heads since the April episode, and are again contacting colleagues around the country and scouring the Internet researching this medical oddity. I'm praying that we find an answer before we leave, and that said answer is not a new condition named "Trinity Syndrome." I have the utmost confidence in the competence of her doctors.

Please pray for the definitive cause to be discovered so our little princess never has to go through this again.

Trinity is eating solid food again

Miss Trinity learned that Great Uncle Teddy and Great Aunt Charlotte brought her lots of food, including strawberries, and then she confidently exclaimed, "I want some strawberries!"

This is the first solid food she has kept down since Saturday morning. That's good stuff!

We appreciate your continued prayers and visits and love. I'm anxious to once again blog that Trinity has been discharged. But we're probably a few days away at best.

As you pray for Trinity, please also pray for our family. I have to visit with the billing office to try to work out some issues of wrongly denied claims between them (as well as North Hills Hospital) and Blue Cross/Blue Shield of Texas. We have catastrophic insurance that covers hospitalizations, but not doctors' office visits. That's great because everything was done last time (and this time) here in the hospital under doctor direction. The problem is, our insurance company has denied 10s of $1000s of the charges simply because the doctors' names appear on the bill (claiming they are "doctor visits" and not "facility charges"). You'd think BC/BS of TX would have worked with other clients at Cook Children's and other Texas hospitals that word their billing this way, but we have made no progress thus far.

The good news is there are ways we can go after them to live up to our policy. I thank God that we have not had to ask Uncle Sam if we could do X, Y, or Z to save our daughter—in fact, billing hasn't even come up in her treatment. They (like they and North Hills did back in April) instead have done everything they can to save our daughter, leaving billing to be handled later. I have friends who think government-run health insurance/health care will help families like ours who are struggling financially and don't have "great" health insurance, but under any government-run system in the world currently Trinity would be dead. As it is, any E.R. we can reach will treat her or any of us. Why change that? I'd rather be in debt forever with my kids alive than have health care rationed and my children denied (or put on those crazy-long waiting lists). And with the sweeping changes being pushed, many of our best medical professionals are retiring early or choosing other career paths. Please, let's keep the best of the best working to keep us alive! Also, I want the people inventing all these awesome machines and medicines and techniques to get crazy rich doing it. I thank God for their innovations and contributions.

This is not a political issue for me: it's life and death. I was more sympathetic to the idea of universal health care when it was more abstract to me, but it is now so real. As Forrest says, "That's all I got to say about that." (I.e., rant over for now :)

I salute all of you nurses, doctors, technicians, volunteers, EMTs, chaplains, and toilet scrubbers: anyone working to save lives is a hero to me wherever they fit in the organization. You value life, so we value you.

Thank God my daughter is improving!!!

Trinity is back in the hospital, so this blog is back, too

I'm sorry to report that Trinity is back at Cook Children's Medical Center with very similar symptoms as those she had back in April.

She started vomiting Saturday after we had gone to a wedding. So we kept her hydrated and I stayed up with her all night Saturday. It seemed like a common case of gastroenteritis to me, so we monitored her closely and kept the sips of water and grape juice coming.

She seemed to get better Sunday morning, but by the afternoon that seemed to reverse. Given our fears from her last hospitalization here, Sarah insisted (and I agreed) that we bring her back to Cook Children's without delay. It's good that we did.

Trinity did not fall as far and as hard as last time because we brought her in quickly. But she was in fact quite acidotic and dehydrated. We thank God for Cook Children's, and we are so glad to report that Trinity has been stable since we moved to the PICU last night. She did not fall into a coma (but probably would have if we delayed even another day). She has been awake off and on, though they had to sedate her quite a bit to put in a central line after she pulled out her IV and they could not get another started. Poor baby!

She's alert and watching Minnesota Cuke currently. I'm in the lobby working after having grabbed a few hours of shut-eye. Her brothers are fine (thanks to our great neighbors and our small group friends for taking care of them for now!).

I had hoped not to touch this blog after I got used to having Trinity back home and whole. She has barely had a sniffle in the seven months since she went home. While so many kids around us have gone through the seasonal crud, she has remained well and vibrant.

So—and I mean this quite literally—what the hell is causing this??? Is she allergic to something? If so, what is it? The doctors are playing the various characters from Little Red Hen, claiming "Not I!" when asked if their area of specialty is the "cause" of all this. The metabolic specialist says it's not metabolic, maybe kidneys. The kidney specialist says it's not her kidneys, maybe it's metabolic. All her labs are getting better, and there's again no indication among these world-renowned specialists that she is missing anything essential in her diet, exercise, etc.

Please pray that she continues to improve and that we get a definitive answer as to what causes her to crash like this. Whatever it is—even my house or right arm—I will gladly cast away to protect my little princess.