Quietly, Quietly, Quietly Making Noise…since 1995

Life in the PICU

I just left the hospital for the evening and spoke with Mighty Joe’s two primary PICU doctors. They are both very happy with his progress and have assured us that Joe is quickly on the upswing. And what goes better with good news than photos from our day in the PICU. Hope they give you a glimpse into Mighty Joe’s day…


“Sleeping sweetly this morning”


My best friend Eric came down to visit this morning”


Every super hero needs a cape! (Thanks Auntie Lisa!)


This is definitely something you don’t see everyday (That’s me with Nurse Melissa and Uncle Sam).

Several of you have asked about the accomodations. What can I say? The motorhome is killer and it’s right next to the hospital.


It hardly qualifies for a motorhome


And this is how close we are to the hospital! Cool huh?

I think we mentioned that Joe had a room change today. It wasn’t the room change we wanted, but we are hoping that he gets to move downstairs today. Anyhow, here are Joe’s new digs (had we known there were rooms this big, we would have asked last week…).


It is like a suite, just without the mini bar.

Quietly Making Noise,
Fletch

Hey Fletch…can I read your notes?

Last night, Kendra confessed that she never considered the severity of Joe’s illness. It was God’s grace, because it remained at the forefront of my mind since arriving in the PICU. Since we want to chronicle this event in the life of our family and remember how God answered our prayers and spared Joe’s life, I took the time to research the enterovirus. Back in school, I would occasionally share my notes with classmates (except for Dr. Jody Burkes…JBB was smarter than me, and my notes would have hindered her advancement into medicine). Anyhow, I thought you might want to cheat and look at the notes I have taken this week, it’s a bit medical, but remarkable when you consider the potential.

The Human Enterovirus:
How do you get it?
“…(a family of viruses) found throughout the world, which are transmitted from person to person through fecal-oral contact…”

What is it?
The Enterovirus family includes the Polio virus:
“…Polioviruses, the prototypic enteroviruses…has been eradicated in the United States”

The Enterovirus family also includes a variety of Non-Polio viruses:
“The non-polio enteroviruses continue to be responsible for a wide spectrum of disease in persons of all ages, although infection and illness occur most commonly in infants and young children.”

In adults, the Enterovirus can cause really bad diarrhea and vomiting, but what does it do in babies like Joe?
“…Although many enterovirus serotypes cause the same self-limited clinical syndromes in neonates as they do in older persons…some are capable of producing fatal disease in the newborn infant…”

“…The group B coxsackievirus serotypes 2 to 5 and echovirus 11 are most frequently associated with overwhelming, systemic neonatal infections…”

“…The outcome of neonatal infection is strongly influenced by the presence or absence of passively acquired maternal antibody specific for the infecting enterovirus serotype…”

“…Early symptoms may be mild and nonspecific, including listlessness, anorexia, and transient respiratory distress. (Note: this is how Kendra found him on Thursday morning last week). Approximately one-third of cases have a biphasic illness with a period of one to seven days of apparent well-being interspersed between the initial symptoms and the appearance of more serious manifestations…” (We now believe that Christian, Caroline, Kendra and I all had minor versions of this virus in early June and probably harbored the virus for a few weeks before inoculating Joe).

“…Generalized enterovirus disease in the newborn most often occurs in one of two characteristic clinical syndromes: myocarditis or fulminant hepatitis. Neonatal myocarditis, which is often accompanied by encephalitis and sometimes by hepatitis, is characteristically a manifestation of group B coxsackievirus infection. Fulminant hepatitis presents with hypotension (low blood pressure), profuse bleeding, jaundice, and multiple organ failure…” (Joe had representations of both syndromes, plus the potential of long term damage to his brain).

“…The management of neonatal enteroviral disease is supportive. (This was the case with Joe, they couldn’t do anything to cure him, they only treated him by reacting to his symptoms). Infants in congestive heart failure require judicious fluid management and administration of inotropic agents and diuretics. The profuse bleeding and coagulopathy that result from hepatic failure necessitate frequent replacement therapy with packed red blood cells, platelets, and fresh-frozen plasma. Vitamin K should be administered intravenously in pharmacologic doses…” (Joe had each of these given to him throughout the week)

“…Large doses of IVIG, which have been reported to improve outcome in at least one case, may be justified given the extremely poor prognosis. Pleconaril, an orally administered experimental anti-picornavirus drug, is undergoing evaluation in infants with serious enterovirus infections. It is available on a compassionate use basis from the manufacturer, ViroPharma Inc., Exton, PA…” (Again, they treated Joe proactively with IVIG and when they researched the availability of Peconaril it turned out that it is no longer even being made, so it was not an option - even for compassionate use!).

I hope the information helps! asked our doctor today about Joe’s continued prognosis and he said that it could have gone either way. We are thankful for God’s goodness!

Quietly Making Noise,
Fletch

Go Go Go Joseph!

“For the LORD your God is God of gods and Lord of lords, the Great God, Mighty and Awesome.” Deuteronomy 10:17

Take a listen to my theme song:

 
icon for podpress  "Go, Go, Go, Joseph!": Play Now | Play in Popup | Download

I am back home again and doing my best to manage the other seven Fletchers and my dental practice. For those that think I’m doing it all by myself…don’t be fooled!…grandmothers and grandfathers and friends and employees are making this week possible! (Thank you all again and again!).
Kenj is spending her days with Joe and I am driving down every night to see my Mighty little guy as he slowly edges toward recovery!

My mom and I made a quick trip down to the hospital last night to drop off the three girls with Kendra’s folks. I was able to have a quiet dinner with Kenj (thanks Mom!) and then we all visited with Joseph. I took a few pictures for you and I have taken the time to answer a few of your questions.


“Holding Hands With Mom”


“Sleeping in the PICU with Mom and Grammy Cookie”

…and now for a few of your questions…

Several of you wanted to know what the captions were on the photos of Mighty Joe’s bed. We put them there, because we wanted the doctors and nurses to know who Joe is and why we want him to get better. At the same time, it softens a tough situation and makes the entire experience more personal for all of us.


“My family portrait”


“Healthy Joe”


“My big brother Christian”

A few of you have also asked, does his room have any decorations? Well thanks to a few guests there are some pictures and cards, but his favorite decoration so far is this balloon from Auntie Lisa.


Hello, I am Joe Fletcher’s grandson!

Quietly Making Noise,
Fletch

Good News and More Photos!

Therefore the sisters sent to Him, saying, “Lord, behold, he whom You love is sick.” When Jesus heard that, He said, “This sickness is not unto death, but for the glory of God, that the Son of God may be glorified through it.”
From John 11

Personally, I want to thank you for your prayers and your concern for Mighty Joe and for us. Let me preface my comments by saying that we want him to get well (and quickly!). But, like this verse says, more than healing we desire that this entire experience and it’s outcome be used primarily to bring more glory to God.
If you know God and are a follower of Christ - we hope Joe’s struggles causes you to worship Him more. If you don’t know God or if you have strayed from Him, maybe Joe’s trials and his struggle for life will cause you to seek diligently after God! If you are waiting and reading the “Joe Updates” everyday and you are looking for good news - I want you to know that there is already really good news (better than anything I could ever write here!).

Favorite Phrase of the Day: “You have a strong son!” uttered by Dr. Jorge Montes during morning rounds.

Least Favorite Phrase of the Day: “Is that the father or the grandfather sitting with him?” uttered by a ridiculously inept and partially blind medical staff person looking into Joe’s ICU suite where I was sitting with him.

Interesting Facts: Our doctor has seven kids. The rug in the reception room to the hospital is round and decorated to look like the world (it cost 1 million dollars)…so far, our stay here has probably paid for the section of Greenland.

And now for a new section of theMangoTimes that I like to call: “Photos from the PICU” (for the full affect, please pronounce it “Pick You”).


“Mighty Joe and Kendra in the hospital together - Day one of life”


“Mighty Joe and Kendra in the hospital together - Week 8 of life”


“Mighty Joe - Master of Urine!”

This is how Joe greeted me this morning…eyes wide open and looking around his room with a bag full of pee (yes…it is still “Stupid Pee”…but we are still on hold for dialysis!).


All the grandparents were here yesterday to see Joe.

***Note***Grammy and PopPop also dropped off their killer motorhome so Kendra can stay in the hospital parking lot (say it with me…”suhweeeeet”). This morning I felt like Cousin Eddie from “Vacation” parked in front of Clark Griswold’s house. I walked outside with my robe and slippers and waved to all the arriving doctors that park nearby.


Pastoral visit from my co-elders at CVP

I received word from the PICU staff that one of the elders has been added to the “watch” list for any future visits! Can you guess which one?


Joe’s PICU Suite

PICU Bed = $5,000/night
Cardiac Monitor = $2,500/hour
Pampers Diapers = $85 each
Getting to hold your child for 5 minutes in the midst of 20+ tubes/monitors = Priceless


“Pumping the drugs”

So if you know my wife, she doesn’t like to give the kids Tylenol at home. Joe, on the other hand, is getting two kidney medications, an antibiotic, a stomach medication, heparin, sugar water, and occasional blood products.


Helipad at 95 degrees

This is one of my favorite parts of Joe’s room, this is the view of the helipad where we get to watch the other trauma patients arrive from around the state. Give him about five years and this will be Joe’s favorite part of the room too!

Quietly Making Noise,
Fletch

And now for a break in the tension…

The serious updates can still be found over at Kendra’s blog, but we also wanted to take a break and answer some questions and make you smile…

“How did this happen?
Many of you have asked how Baby Joe could have gotten this virus (which we are now referring to as the “Enter-oh no!” virus). Here’s the deal…we don’t know how he got it, but we have a few guesses as to where it might have come from:


“Christian, those jelly things are Joe’s eyes…”


“What do you mean, Did I wash my hands?”


“One of these days I am going to grow up and whoop yo butt!”

“Favorite Phrase of the Day”
I love to hear the doctor with the East Indian accent say: thrombotic thrombocytopenic purpura. Go ahead, I know you want to try it…it just sounds funny!
I also love to hear very specialized critical care doctors say the term: “stupid pee.”

“What’s going to happen to Joe…I mean…uh…?”
A few have also hinted or indirectly questioned if this is potentially life threatening or if Joseph might die in the hospital…I know it is a weird thing to ask, so I thought I would address it head-on. So, if you are wondering…there are no guarantees in life (ever…for Baby Joe or for you…). However, the general mood that we’ve picked up by the doctors in the ICU is that they expect recovery and it’s not just the power of positive thinking. Typically, even little babies recover from the “enter-oh no! virus.” We just don’t know what “recovery” means yet…

“What is it really like in ICU?”


Here is Dr. Kallas - He rocks!. He is not really into blogging, but he is on very little sleep, so in a moment of weakness he agreed to being on theMangoTimes (He is also the one that coined the term: “stupid pee”).


This is me with Nurse Kelly (Her heart rate is fine by the way) She is having a hard time working with me around and I think she is sick of hearing me say “thrombotic thrombocytopenic purpura” in an East Indian accent.

Thanks for walking this with us!

Quietly Making Noise,
Fletch

Waiting on the Lord

To keep this easy, we will maintain the updates on Kendra’s blog (www.preschoolersandpeace.com)

Some of you know that when I’ve counseled folks through life-threatening sickness or death occur, I have a favorite saying: “I don’t understand what God is doing, but I trust what God is doing.” I am not sure if it brings comfort or not, but it has always grounded me in the truth of God’s sovereign control and what our response should be to Him.

These past few days, I’ve reminded myself that I don’t need to understand God’s ways, just trust Him. We’ve got great doctors and nurses and machines and drugs and everything else…but it has always been God that heals. Even as I watch them pump our little guy full of medicine and fluid (think tiny Sumo wrestler, or for those closer to us…think Kjeldgaard baby), I realize that I am helpless to do anything for him. We cannot pay for any better care, we cannot research and provide any better treatment. I’m sure this would frustrate some people to bitterness and anger.

My experience has been much different. In the midst of a raging storm, I am at peace with each diagnosis and questionable prognosis. I trust God.

King David wrote it better than me:

Psalm 33
20 Our soul waits for the LORD;
He is our help and our shield.
21 For our heart shall rejoice in Him,
Because we have trusted in His holy name.
22 Let Your mercy, O LORD, be upon us,
Just as we hope in You.

Quietly Making Noise,
Fletch

Updates on Baby Joe!

To keep this easy, we will maintain the updates on Kendra’s blog (www.preschoolersandpeace.com).

I updated this to the church website this morning:

They have prepared us for the long haul (both in and out of the hospital). Joe will be in the PICU for a good portion of next week at least. He has multiple systems affected. They have completed CT Scans, Spinal Taps, Viral cultures, and EEG and they want an MRI. He has a personal nurse in the room and a doctor within 10 feet of him and Kendra at his bedside.

Thanks for your prayers for us. For those wanting to pray for doctors: Dr. Montes and Dr. Kallas are making the decisions. Our nurses are: Lisa and Kelly.

Kendra’s folks are at our house with the kids and I assume my folks will be heading home today. I appreciate everyone who has volunteered to care for our kids. We will be calling you!

I keep reminding myself that this is the same God I woke up with on Wednesday, He was in control then…and He is still in control now!

We covet the prayers of you and your children.

Many of you have called to ask how we are doing? I hate to take these verses out of the context of Paul’s letter to the Romans, but this is how we are doing…
Paul asks the church in Rome: “What then shall we say to these things? If God is for us, who can be against us? He who did not spare His own Son, but delivered Him up for us all, how shall He not with Him also freely give us all things? Who shall bring a charge against God’s elect? It is God who justifies. Who is he who condemns? It is Christ who died, and furthermore is also risen, who is even at the right hand of God, who also makes intercession for us. Who shall separate us from the love of Christ? Shall tribulation, or distress, or persecution, or famine, or nakedness, or peril, or sword?”

Baby Joe in the Hospital!

This is a duplicate of Kendra’s blog…

Our 7week old…Little Joe…took an ambulance ride to the hospital today. When Kendra woke him, he was unresponsive, white and struggling to breathe.


Pray for Me!

Our local hospital continued to be worried with Baby Joe’s responses, so he was transported to a Children’s hospital about two hours south of our home. He’s in the Pediatric ICU and they continue to run a bunch of tests to determine what’s going on in his little body. The current theory is that he has a systemic bacterial infection or “nasty” virus. They are running tests tonight and should know more in the morning. He’s getting the best care we can give him and the doctors/nurses working on him had me so confident that I snuck Kendra away for a few hours sleep.

For those that will go to the Lord on our behalf:

Praise God:
The admitting staff at our local hospital knew us and took great care of us and all of our needs.
The doctors/nurses recognized that we needed to be transferred.
The transfer team was top notch and cared for him in route to the Children’s hospital.
The doctors/nurses treating him in the ICU are fantastic. He’s getting one on one attention with the pediatric specialist and nursing staff.
Kendra’s SIL is an RN at this specific Children’s hospital and her brother/family live about 10 minutes away.
Kendra’s folks came to stay with our kids and their house was equally close which gave us a place to catch up on some sleep (and still be close enough if they needed us!).

Pray with us:
For a complete and correct diagnosis.
That his fluids would regulate and all of his blood numbers would stabilize (he’s all over the map with his lab results).
That the test results would be conclusive.
For our kids at home.

We have great internet access and we will update as we can.

God is good…all of the time,

Fletch

Here’s something you don’t see everyday…

You may not know this, but about once or twice a month I run out of gas in the VW. This morning was another one of those days…ran out of gas on the way to work with two mangokids in the car. It is just part of classic VW ownership (they are quirky cars…with mine, it’s a faulty fuel gauge and broken odometer…so I try to drive by “the force” and “sense” when I am getting low on gas…typically I am pretty good, but occasionally I fail). Thankfully, I carry a spare tank of gas. So, today at lunch, I decided to run by and fill up the tank with gas.
I’ve been driving this car because it gets good gas mileage (and it’s permanently topless…), but I still complain each time I pump 4.58/gal gas into the tank. Well, I am not going to complain as much anymore…because while I was filling up my car I looked over at the pump next to me and watched this guy pull up and hook up to the diesel…
Expensive Fill-Up
You would think they would have a special place to fill-up school buses? Since when do they drop by the local Shell station. I half-expected a fire truck to show up behind him and fill up as well.
Quietly Making Noise,
Fletch

Incommunicado

So we were gone this past weekend. You can guess if you want, but I’ll make it easy and just tell you that we were in blazing hot Sausalito. Three years living in San Francisco, it never got over 80 degrees. This weekend it was about 95…with no wind and no fog. Great weather…and for a second I almost considered living there again.
We ate good food, slept in a posh hotel, lallygagged around town and had a nice visit with an orthodontist friend who just moved to Napa Valley to make some great wine. Check them out…
I know what you are wondering though…who watched the other kids while we were gone, right? Well wouldn’t you know it…my best friend Eric and his wife ponied up for the commitment to watch all seven mangokids. He gave them some great adventures…check it out: pictures of the mangokids shooting guns!
With my time away, I had the chance to work on a few posts…coming later this week: “i’ve been published”…”orthodontists who make onesies”…and a few other treats…
Quietly Making Noise,
Fletch