"What's up, Doc?" - Bugs Bunny

To All:

Three months in Phoenix, one week in St. Louis!  We have been discharged with a diagnosis, Ethan gained a pound in six days in St. Louis, and he is eating by mouth.  Actually, he is eating everything by mouth.  If you enter a room with either food or drink in your possession, he is immediately interested in partaking and will be sure he lets you know.  He's loving the pancakes too!

His diagnosis is called infant Refusal to Eat (RTE).  This sounds like a simple enough problem, but can actually be quite an issue as we have learned.  Doctor's are not fully sure why it happens, but there is speculation regarding neurological triggers as well as other things.  It's a long and drawn out story, but the RTE combined with substantial over-treatment in Phoenix led to more complicated issues.  Here's the rundown:

1.  Ethan likely needs more calories in the day than the average munchkin which is why he failed to gain weight initially.

2.  Combined with the refusal to take solids for some reason (likely reflux aspiration), he began to lose weight.

3.  Then we started treatment at Phoenix Children's which led to feeding him into his intestine.

4.  "House" in St. Louis stated that intestine feedings are often not effective, especially when done improperly.

5.  Phoenix did them improperly -- in that they were pumping as much as 2000 calories per day into his intestine which led to malabsorption and renal issues and further "shutting down" his system.

6.  St. Louis immediately had concern with the amount of calories and adjusted them Day 1.  Ever since he has been taking less calories into his intestine and has been eating food by mouth, he's been gaining weight.

7.  In one week, we are completely off of the central line TPN feeding, and are now feeding by mouth and are feeding by drip into his stomach only, not his intestine.

8.  He is tolerating very well and is off of all medication.

9.  We are not out of the woods.  He could have a G-tube line feeding into his stomach for as little as months and as long as years.  This is a serious issue that can re-occur, and we have been warned that he could eat like a horse and then shut down again for no apparent reason.  

There is much, much more to this story and this is definitely a Reader's Digest version of the story.  When we get home and settled, I will provide a longer version on the blog.  What we learned is that there is not only a significant difference in the quality of doctors but also in the approach to diagnostics and care.  I will say that Dr. Keating ("House") lived up to his reputation and we can't imagine not having come to St. Louis.  

I must also give a special mention to our pediatrician, Dr. Jeff Siegel.  He was the driving force behind us looking for care elsewhere, and demonstrated not only unbelievable care, but he seemed to be significantly more knowledgeable than many of the hospital doc's we worked with.  

I must also mention that our friends and family have extended themselves in ways unimaginable.  Our church family has shown that the roots of a church extend far beyond the shadow of it's branches, and their love and support is a testimony to how God does extraordinary things through ordinary means.  

Unlike our other discharges which left us feeling incomplete and insecure, this one seems much more permanent and the change in Ethan in one week is unbelievable.  His eyes, skin tone, attitude and energy are all significantly improved and his spirit is as pure as ever.  

We hope this to be the beginning of a full recovery for Ethan.  Like Dr. Siegel said, if this diagnosis sticks, it's a home run.  All of the other possibilities at the top of his list didn't have good outcomes.  

So with hope and excitement, we conclude this update. . . . . . We'll be coming home from the midwest on Friday, July 9th!

God Bless, 

Matt (and Robin, Jacob, Nicholas, Andrew, and Ethan)

"All the art of living lies in a fine mingling of letting go and holding on." - Henry Ellis

To All:
So the risk of sharing our good days and bad days is that there are both. Yesterday wasn't as optimistic as the other days were, but we remain confident in our care in St. Louis and feel like we're being handled by the best. As I was flying back to Phoenix to leave Robin, Ethan, and my other boys (which is hard enough), the news I got before I left wasn't the greatest.
First of all, please pray for Ethan, because in a matter of an hour or so he will be getting a spinal tap to test his spinal fluids. He has to go under general anesthesia for this as well, so we pray that all will be well.
Also, Ethan's red blood cell count is steadily dropping. The "steadiness" of the drop I think is what is of greatest concern, and the word transfusion came up. We're not to that point yet, but that's a scary word to us, and it will be required if the trend continues.
The good news is that he continues to eat food, albeit in very small amounts. They did a barium motility test to watch his stomach digestion, and essentially his stomach is not digesting very much. It digests so slowly that it wasn't observable in the test. This tells us that though he is no longer aspirating on his food, he also isn't digesting correctly, so if we were to go to feeding three times per day by mouth, it would come back out. It is a reminder that we have big, complicated and serious issues we're dealing with. Like the neurologist told us, there's a long list of possible issues, with the rarest being ranked at the top right now.
When we first arrived in St. Louis, it felt like we would be there a week -- heck, Day 1 and he was eating! But the reality that there is a larger issue is starting to settle in for us, and the doctors are hard at work trying to figure out what it is.
His intestinal line (J-tube) has become displaced (again), and is all coiled up in his intestines. This time it's so wrapped up that Interventional Radiology can't fix it (the easy way!). They are going to get through the spinal tap and some more feeding to determine what to do, which will either be a complete replacement with a stomach "button" or an endoscopy to fix the existing line. Either way, another bummer (and general anesthesia) for Ethan!
We are trying to balance our worries and what we have thought to be true from the care in Phoenix with the different approach of the doctors in St. Louis. We are trying to remain Ethan's number 1 advocate while at the same time not intervening in the doctoring process. It's a delicate balance for sure.
Thank you all, and keep praying. . . . .
God Bless,
Matt

Ethan Eating

"Yummy, Yummy, Yummy!" - The Wiggles

To All:
My updates have transformed into more of a journal as time has progressed, and I have shared our trials both medically and mentally. There is so much going on at St. Louis Children's Hospital (SLC), however, that I am going to return (for today at least) to my bullet points to highlight what's going on.
From our perspective, it looks like Phoenix Children's Hospital made a critical mistake in Ethan's care. They stopped feeding him by mouth months ago for valid reasons, but never tried to feed him again. Three months is a long developmental period at Ethan's age, so SLC thought they would simply try. They repeated the barium swallow study, and the aspiration wasn't showing, so they started feeding him by mouth again. As they stated here, "it may go horribly, but we are obligated to at least try." It didn't go horribly to say the least, and we have a boy eating by mouth again.
What is he eating you ask? Days 1 and 2 was mostly testing foods and textures, but we're on Day 3 now, and he has no restrictions. So, he's eating bananas, baby food, graham crackers, and blueberry muffin, and he's loving every minute of it!!! I cannot explain how high our spirits are with just this milestone -- we forgot how precious food stuck to a baby's face and hands is, and it's a reminder that we have missed many "standard" milestones and that they have come and gone. With all of that said, here's the rundown on the GI side of things:
1. He is off of central line lipids completely
2. They have reduced the caloric intake into his intestines (J tube feeding) and he has not had diarrhea since yesterday (first time in months).
3. They are reducing his TPN (blood stream) feedings gradually and he may be off of central line feeding altogether by early in the week.
4. His energy is VASTLY IMPROVED. He is pulling himself up in the crib, waving to everyone, babbling, and laughing. He still sleeps a lot, but he is coming around.
5. GI will be doing a barium CAT scan on Tuesday, because the intestines did look a bit distended and they want their own images to go off of.
6. He has two consecutive days of weight gain!!
SLC has divided his care into two areas: 1) Getting his gut working; and 2) Dealing with his caloric absorption (why he isn't growing). So the GI doctor, who we found out is also the best they've got, is getting his gut working. So now for point 2. . . .
In Phoenix we had a neurological doctor, here we have a team. No less than four neurologists have seen him in the past two days, and they did a much more thorough exam than has been done in the past. From that and his records, they want to run some tests. They told us that generally doctor's come up with a differential diagnosis first, that is, a list of potential problems, that hopefully gets narrowed to only one problem at the end. His list is still long, with rare disorders topping that list. Here's what's going on:
1. They took two blood tests, both with long names, to help determine absorption as well as screen for some mitochondrial issues.
2. Monday or Tuesday, he will likely get a spinal tap (and yes, general anesthesia) to test his spinal fluids.
3. Other assorted tests which will become more clear early next week.
So we have busy days and a busy week planned for Ethan. Luckily, he's eating again, so hopefully he'll have the stamina for it all.
The other boys are being very well taken care of by my sister, the only adult I know that can match their energy! I come home for work at the end of the weekend, and pray that everything goes well for my boys and wife while I'm away. I'm trying to make it back to St. Louis as I can, which is a balance of frequent flyer miles and work schedule. I'm hoping to get back on weekends as I am able.
I feel like there's more to share, but I will wrap it up for now . . . .
From the Humid Midwest and God Bless,
Matt

"Men ate the bread of angels; he sent them all the food they could eat." - Psalm 78:25

To All:
We are in St. Louis and have Ethan admitted to St. Louis Children's Hospital. With our limited experience in the several hours since we've been here, I can say that the care is an order of magnitude better than in Phoenix. In fact, it's dumbfounding that the care is actually so much better.
We checked in at 11:30am this morning, and by 12:15pm we were in a Care Conference with Dr. Keating ("House") and his team which included doctors, nurses, and speech therapists as well as specialists in multiple disciplines. From that meeting, they have a clear plan for the next several days which includes a neurologist visit.
When the GI specialist heard how many calories he was receiving into his intestines, he immediately attributed his constant diarrhea to that. Needless to say, his formula has been changed that is going into his intestine, and the TPN into his central line will likely be adjusted tomorrow. We'll see how that goes, but interesting that they have some changes to make right off the bat.
But wait, there's more!!! As I sit here typing, they have him eating Graham Crackers and baby food -- the first time anything has gone into his mouth in three months!!! Keep in mind, we have been here under 5 hours. How his stomach handles the food is still to be determined, but the fact that he's eating actually brings tears to my eyes as I type this.
The level of focus, cross-specialty communication, and care for Ethan is literally "off-the-charts". At this point, we can only imagine that our prayers are being answered in a very specific way, and that we have come to this hospital by the hand of God. But God ordinarily works through ordinary means, and the relationship my brother-in-law has with the hospital president has certainly made a difference. We were greeted as we stepped out of the van to get into admissions, and the nurses and speech therapist said that when Dr. Keating talks, people move! And people are moving, and Dr. Keating is a very pleasant person as well.
The risk of writing these updates in somewhat of a journal form is that you get the ups-and-downs of our journey as they happen. So today is a great day, and we hope that this continues. I am overwhelmed with emotion right now, and we hope and pray to keep the good momentum going. I never thought seeing my son eat food would choke me up.
On another note, my sister and brother-in-law who live in St. Louis have taken on the babysitting project of our other three children. The boys went swimming, caught lightening bugs (my sister pays 5 cents per bug!), and went for ice cream last night. Today they visited the zoo and got snow cones, and they have plenty more activities lined up. Needless to say, they are not going to want to come home!
Thank you everyone in all ways big and small -- we just couldn't do it without everything we have been blessed with. It has also been a huge blessing that my work has allowed me to get Ethan to the hospital and my boys settled in St. Louis, and that through the generosity of a family in our church, we were able to all travel over here together. WOW!
That's the news for now. . . .
God Bless,
Matt

"God does not give grace for the imagination. When you imagine your worst case scenario, you never imagine God's grace in that scenario. God gives grace for today."

Thank you for the continued outpouring of love and generosity for Ethan -- it certainly appears as if he is responding to all of the prayers!

In the past 24 hours, he has started to look, act, and feel much better. We are really dealing with three issues: 1) the acute sickness of the blood infection; 2) his GJ tubes and gut-related stuff; and 3) getting a diagnosis of what is actually wrong. I'm pleased to say that the terror of the blood infection sickness seems to be passing, and once we move beyond that, we can again begin to focus on the larger issues. His blood sugars are still fluctuating (low of 60, high of 400 -- so still serious) and there may be some issues with his central lines that we need to figure out, but his blood pressure, oxygen, heart rate, and temperature are all settled to where they should be.

Because Phoenix Children's Hospital has done literally everything they can, we need to get Ethan to another hospital. As I stated in an earlier update, we know people in St. Louis and they also have one of the top cross-speciality diagnosticians in the country (who they actually call "House" because of his ability to diagnose problems in children that others can't). It seems to us and all involved that this is exactly what is needed.

"House" is currently reviewing Ethan's medical records, and is hoping to have a diagnostic plan by early next week.  I spoke with him on the phone today, and he was asking questions about Ethan that ensured me that he already has a keen focus on Ethan's issues.  This means that we may go to St. Louis on Thursday of next week. The antibiotics Ethan are on are very specific and need to be given every six hours, so we will have a window for travel. Fortunately, our church has stepped up and is helping us coordinate his transfer through the efforts and generosity of other church members.

Like everything we seem to be facing, all of this is subject to change. We are still waiting for insurance pre-approval at St. Louis Children's, and Ethan will need to continue to have negative blood cultures and a central line that can stay in and not need to be replaced.  The unknown of all of this remains one of the most difficult aspects to handle both spiritually and logistically.

Many friends, family, and church members have remained very flexible in helping out at a moment's notice -- which is happening frequently enough that we feel guilty about the burden we're requiring others to take on. Thank you seems like a currency that will only take you so far, yet the help keeps coming. There are many that we have met in the hospital without the same network of helping hands and prayers and it is evident, and I don't know how we would do it.

We have been told that due to his intestinal issues combined with his central line makes for a bad combination for blood infections, so we pray that we will avoid another experience like the past several days, and will get to St. Louis with as little fanfare as possible.

If I could foresee all of what we have gone through when I was 20 years old, I wonder if I would have made the same decisions. Yet here I sit terrified for my son and I wouldn't trade it for the world.  The stories and lives and help and friendships and love that have been woven together over these past months tell a far deeper story of purpose and plan that truly goes beyond anything that I could ask for or imagine, or foresee. I'm learning to leave the foresight to God and worry more about my relationship with Him right now.  Foresight or imagining the future only matters if I could do something about it, and it has been made evidently clear that I can't.

So, with today in mind, I ask for prayer for Ethan that this today is the best today he ever has . . . until tomorrow!

God Bless,

Matt

"My comfort in my suffering is this: Your promise preserves my life." - Psalm 119:50

What a couple of days it has been!  Ethan is a child who rarely cries, and after all that he has been through, always greets you with a smile and a wave.  But not these last couple of days -- his pain and sickness are readily apparent.  His suffering has taken a toll on him and a toll on the hearts Robin and I.  He cries or whimpers a lot, and it's difficult seeing all of the tubes coming out or going into him all over the place.

The doctors are continuing in their struggle to maintain blood pressure, heart rate, and oxygen, and we are fighting against a very aggressive bacteria in his blood.  A typical blood infection can take up to 48 hours to culture -- Ethan's took only four.  This means that it's aggressive, and his body shows it.  He is filled with fluids to maintain his blood pressure, and keeping his fever down has been a constant challenge.

There is an immediate need to get this blood infection under control, but once we do, we have some good news.  Through my sister Cheryl and her husband Dave (it's not what you know!), we have been in contact with some excellent medical staff in St. Louis who are currently reviewing Ethan's medical records, and pending insurance pre-approval, is where we will be taking him as soon as we can get him stable.  I'm sure that many people have had good experiences with the overall medical care at Phoenix Children's Hospital, but we are not those people.  Aside from great nursing, we have not been impressed, and it's time to "get out of Dodge".

I remain amazed that our other boys have held up so well -- the support of many of you has surely helped.  Unfortunately, our chaotic lives have become somewhat normal to them, which depresses both Robin and I a bit.  And we fear that their summer break won't be as memorable as some have been -- but that's small change in the bucket all things considered.

I just want Ethan better, and I have never wanted something so much and felt so helpless to get it.  Just a diagnosis would be nice.  And he just can't catch a break -- if something can happen, it seems like it does.  But onward we press, trying to balance work and day-to-day living while dealing with the insanity of uncertainty.

So our prayer is now this -- that Ethan would be healed from this infection, stabilized and safely transferred to St. Louis.  Of course we also dare to pray boldly that indeed a miracle would happen, and that God would work above every ordinary mean to heal Ethan completely.

Thank you friends, family, church family, and those near and far who have reached out in various ways big and small but all important and just as we have needed.  I fear that we have asked many for too much, often receiving more than we asked for, and it really is beyond my understanding why so many have given up so much for us.  Perhaps it's the best argument for the existence of God that can be made.

Until next time. . . . .

God Bless,

Matt

Back to PCH

To All:

I know some of you have been following Ethan's story through other sources, so some of this may be repetitive, but I thought it was a good time to provide an update.

Last week, Ethan was discharged from Phoenix Children's Hospital (PCH) again -- this time with a PICC, or central line, which was providing his feeding into his blood stream and bypassing his gut so that he could get nutrients directly into his blood and gain some weight.  

Yesterday (Sunday) afternoon, we had to rush him to the PCH Emergency Room due to a fever.  Things went from bad to worse in the ER, with his fever running over 105, he began to twitch and convulse which is probably the hardest thing I've ever had to watch in my lifetime.  After drawing blood samples and stabilizing the fever (at 102/103 -- the lowest they could get it), we were admitted.  Things didn't improve after admission too much, and then we had the preliminary results of the blood test.

There is a risk when you have a central line (line to the heart essentially) that you can get a blood infection. Ethan now has a blood infection, and it was a long night.  He is on oxygen, his fever is high and not breaking, his blood pressure is high, and his heart rate is inconsistent.  He is being constantly monitored at this time, and all we can do is provide fluids and antibiotics in hopes that this gets resolved.  

The little guy needs all the prayers in the world!!  He is breathing SO fast and he is really struggling.  Please pray that he heals quickly and that we can get him stabilized and then get him off to either Boston Children's or St. Louis Children's hospital as soon as possible. 

Thank you all for following our story, and thank you for all of the support.  

God Bless, 

Matt

"Blessed is he who has regard for the weak, the Lord delivers him in times of trouble. . ." - Psalm 41:1

To All:

Robin and Ethan visited the doctor this morning, and the news is definitely not good.  Ethan is down another half-pound, and the situation is now much more critical than it has been thus far (he is now 10 months old and weighs over a pound less than he did at 4 months of age).  Our doctor is gathering records and conferring, and we will be sending Ethan to one of the top hospitals in the country.  That list includes Boston Children's, Cincinnati, and UCLA -- where he goes depends on what they decide after conferring as well as who will take us on very short notice.  

If we can't get him in this week, we will be admitting him here locally in the next 36 hours to get a TPN feeding for immediate nourishment until we can get in to another hospital.  This poses several immediate needs and concerns for us, including getting Robin and Ethan to the hospital and managing my work schedule and associated work travel while taking care of the other three boys.  One of my sisters has volunteered to fly in and watch my boys (thank you Cheryl!!!), so that is a huge step in managing the travel and care.  Robin is also scared to be going out-of-state and having to deal with all of the emotional burden so far from home. 

Frankly, we are very scared.  It is so disheartening to not know what the problem is, and to watch him get weaker and thinner week after week.  We ask for your prayers -- specifically that we will find ourselves in the right hospital quickly, and that we will have a diagnosis and some sort of care plan.

Thank you all for your prayers and support thus far.  We will continue to keep you updated. . . . 

God Bless, 

Matt

"And the saga continues. . . " - George Lucas

To All:

I had no idea that my updates were so loved!  Thank you all for your support and faithful reading.  I was going to start blogging about our adventures, but many have requested that I keep sending the updates via email -- so like a good little boy, I'm going to do what I'm told.

We have been to the doctor a couple of times since we've been home to keep an eye on Ethan and his weight.  Unfortunately, I have bad news -- my wife just called after leaving our pediatrician's office today, and Ethan has lost a pound in one week.  He is currently calling our GI Specialist to see what to do next.  That's a lot of weight for an already little boy to lose, so we ask you all to keep him in your prayers.

For those of you who have seen him out and about, you would never know it.  Ethan keeps smiling and hardly ever cries -- he's simply a happy camper.  But the numbers don't lie, and we need to really focus on his weight gain.  There are some "next steps" being considered -- including visits to Boston, Cincinnati, and Denver hospitals for care.  We are also chasing down some "leads" from friends about possible rare diseases (mitochondrial, EGID).  Decisions about where to go and what to do may have to be made sooner than later given his weight loss.

We were so desperately hoping that he would get home, be happy, and gain weight.  Two out of three isn't bad, but we need all the prayers we can get for him.  It has been great having the family together again after two months of disjointedness -- but as with all news we seem to get, it's been bittersweet.  Work is really picking up for me, and I am very busy, so I also ask that you keep Robin in your prayers as she tries to keep the whole circus on the train and moving in the right direction!

If anyone knows how to genetically transfer my ability to gain weight to Ethan, please let me know.  That would certainly be a win-win situation. . . . 

For Now,

Matt 

"I've had my fun, baby I'm done, and I wanna go home." - "Home" by Michael Buble

To All:

Last night, Ethan came home!!!!!!!  I can't tell you how good that feels!  But we still have no diagnosis and the saga continues . . . I can't tell you how bad that feels. Two months to the day in the hospital -- wow!

After discharge orders were placed at 9:00am on Friday, it took a long day (because of communication errors of course!) to come home.  Last night we got home around 9:30pm with Ethan in tow.  I can only think that home will help his healing process -- we sat him on the floor and he started patting the carpet and laughing.  Seeing his brothers was also very exciting for all parties involved. 

It became apparent very quickly that we have our work cut out for us as we had to fill his feeding bags, prime the lines, and prepare his pump.  Robin is a seasoned pro at this -- me . . . not so much!  Ethan slept like a rock last night, the first uninterrupted sleep in two months.  He woke up happy this morning as well.

Where we go from here we still don't know -- a doctor friend from the Mayo has recommended UCLA, so that may be next.  For now though, ETHAN IS HOME, and today is the only day that matters!

This journey is far from over, so please keep the prayers coming.  After two months, he essentially weighs the same, and unlike two months ago, he now has tubes sticking out of him and diarrhea.  In many ways, he is worse off than when he went into the hospital, so it's important that we keep him gaining weight as we work through this.  If we can't keep him gaining weight, we will end up back on Floor 3 of Phoenix Children's Hospital.  

We have made some great friends in the hospital that we continue to keep in contact with, and the support everyone has given has been overwhelming and come at just the right time.  Thank you all as you have prayed, helped, loved, and followed us on this crazy ride.  I will do my best to continue the updates, though likely in a blog so you all don't continue to get pestered with my emails.  I would hate to end up in your junk email filters!

Well, I've got to go change a diaper (haven't done too much of that lately!) and make breakfast.  Robin spent her first night in a bed in two months last night -- I wouldn't be surprised if she surfaces out of the bed sometime Monday!  

God Bless, 

Matt

"When all is said and done, there's more said than there is done."

To All:

It has been a while since the last update, and I left everyone hanging regarding the outcome of Ethan's progress as well as my mental health.  I would love to say that it's getting easier, but this has been a long process, and it doesn't look like it's going to be easily resolved and I think we're in it for the long haul.

Since the last update, I called a "Come to Jesus" meeting with the medical staff (formally called a Patient Care Conference) to get everyone on the same page. Luckily I was prepared with an agenda and a seven page document, because the doctors weren't prepared to lead the conversation. My general assessment after two months with Ethan in the hospital is that doctors are generally poor communicators and are not very business minded (an apology to all of our doctor friends who frankly have been better about following through with us than the hospital).

The result of the meeting was that we were going to stop doing procedures every two days on Ethan, and we outlined a plan for his care which all of the doctors agreed to.  With that said, Ethan had a GJ tube inserted into his side last Wednesday, in which one tube goes to the stomach (to drain content) and the other goes to his intestine to feed him (which seems backwards I know).

The procedure itself went well, but he has been in a lot of discomfort ever since and can't lay on his tummy where the tube is. The goal was to get four days of weight gain with this in place, and then continue treatment from home to try and figure out what his issue is. The doctors have confessed that he is an absolute mystery, and his symptoms present themselves in such a way that they can't even say if he has something common or something rare, so maintaining a direction of care is difficult.

To make a long story longer, up through yesterday Ethan still wasn't gaining weight. Yesterday, they changed his feeds to something called Progestimil which is easier to digest. Today he had weight gain, so three days to go!  The opening in his torso where the tubes go in (the "button") has been leaking disgusting fluid (that's as graphic as I will get for the faint-of-heart!) for the past couple of days, and is inflamed. We're keeping an eye on it to determine if he is simply leaking stomach fluids, or if it has become infected.  Hopefully he just sprung a leak and he will close up and be ok.

Every expert in the hospital has an opinion, and even after our meeting it has been difficult keeping them focused on Ethan's care plan without deviating.  But now that I know where the shortcomings of the hospital are (communication), I have been able to stay on top of them a bit more and keep them focused. I have been trying very hard to balance my Type-A personality with a calm and understanding demeanor. On days when I'm tired, that's much more difficult than when I'm rested and a bit more sane.  The "new" doctors on rotation today think he'll be fine to go home tomorrow with a low grade fever, oozing fluids in his stomach and only one day of weight gain, and crying in pain when he moves.  Though we would like to be home, we disagree with their assessment and we're letting them know in the most positive way possible that Ethan has a Care Plan, and that we are going to stick to that plan unless they can adequately explain why they are changing the plan (the elusive doctor-patient communication!).

I write this email on an airplane, with my other boys at our friends house.  It's difficult to leave town on work and carry on with business as usual when everything is so up-in-the-air, but life must go on.

I am learning that there are levels of trust in God.  In that learning, I'm realizing that there are a lot of levels where I don't trust in Him.  The deeper the levels, the less the trust, and that's not a discovery that I'm particularly relishing in right now.

Please focus your prayers toward Ethan gaining weight and staying infection free, and for Robin, who is really feeling the effects of her rheumatoid arthritis on the hospital couch (she still hasn't missed one night by his side).  Her health is critical to our family -- I've learned that I'm neither willing nor able to handle what she does every day.

As always, thank you, thank you, thank you. Our community of friends has come along side us and helped bear our burden in ways big and small and all desperately needed. And the prayers and emails have come from far and wide, and we feel the prayers and read all emails (though I'm starting to slip on responding to them, sorry!).

I keep telling myself that I'm going to start a blog for this, but still haven't gotten around to it.  Maybe soon.

God Bless,

Matt

“Is not your fear of God your confidence, and the integrity of your ways your hope?" - Job 4:6

To All:

I have debated whether to write this update now or let my spirit "settle" before I compose it.  Yet in the spirit of the honesty in which I have sent the past updates, I'm going to provide the update as it stands today through the looking glass that I am using right now.  Like many of the updates, there has been much activity that has gone on since the last, and now is a time of particular frustration for us.  Last week when I wrote, we set an optimistic goal for release this week, which we have done in the past.  I think it's time that we stop setting goals and just focus on the "here-and-now" to avoid the accompanying despair when we are still in the hospital week after week.

Before I get to my standard bullet points, I find it necessary to vent a bit.  I woke up this morning to the start of a bad week.  In addition to all that Ethan is going through (which I will get to), Robin has laryngitis and has been feeling the effects of sleeping on a hospital couch with rheumatoid arthritis.  I was to start a new job today (for a company that I have worked with before), yet due to some confusion with paperwork, that hasn't completely happened.  Normally not a big deal, the health benefits I was to receive from my new employer were not activated May 1st, and we didn't pay for COBRA for May because I was to have other benefits.  This can be a big deal pretty quick and I'm trying to figure it out.  As some of you know, I got in an accident (with the hospital parking garage) when admitting Ethan over six weeks ago.  After 20 years of faithful payments and NO other incidents on my record, I received a love note from the insurance company stating that I was being dropped due to my "driving record".  So here I sit potentially without auto or health insurance.  It's been a bad day . . . . 

I vent because I want to tell the moral of the story.  I was having the worst day of this whole journey this morning, and didn't want to go home, didn't want to go to work, and really didn't want to do anything.  I felt justified in my self loathing and was just done with everything, not wanting to talk to anyone (which means things are really going bad for me!).  Then, the phone rings.  A colleague called to say welcome back to the company that I was starting with again.  Yet this colleague is a man who was hit by a car riding a bike 8 months ago, and is wheelchair bound now as a result.  Though he lives across the country, he also happens to be an elder in the same denomination of my church, and the updates that his family provided through his ordeal served as a testament to how faith in God is really applied in times of need.  I don't know that I would have picked up the phone if it was anyone else, yet when I saw his name pop up, it was a pretty powerful moment for me.  There are very few people that I would listen to this morning, and he is one of them.  Needless to say, he has reset my moral compass for the day.  I think I can summarize our lengthy conversation in a few words -- emotions come and go and are not always properly aligned, so in times like these simply rely on your understanding of who God is and what He says is true.  Your emotions will change, His Truth will not.  

I know that things could be much worse for us, though not many things are going all that right either.  Yet we are still blessed, and are receiving blessings every day, which is more than we deserve.  

So now for the rundown:

1.  Remember the bad drug that I didn't like (Reglan) and had Ethan taken off of?  Well, they accidentally put him back on it again.  I was furious, and to make a long story short, he's off of it and I doubt that he will be on it again.

2.  Last Friday, we were supposed to have several procedures done on Ethan at one time and under one general anesthesia (since this would be number 7).  He was to get his GJ tube, a muscle biopsy, and a bronchoscopy.  

2.  On Thursday, we were told that he wouldn't get a muscle biopsy, but maybe a a skin biopsy.  Then we were told by the new pulmonologist on rotation that the bronchoscopy was a good idea, only to be told 20 minutes later that it wasn't necessary (we suspect a scheduling conflict for her change of heart).  Then we weren't going to get a skin biopsy and we were just going to get the GJ tube.  Then they weren't sure about the biopsy and were looking into it.

3.  Then I said, "STOP".  Enough is enough.  On the advice of a Mayo Clinic doctor that goes to our church, I called a Patient Care Conference and put all procedures on hold until that occurred.

4.  So, tomorrow will be the Care Conference at 2:00pm.  This will be a sit-down with all of the involved specialists (pulmonology, GI, neurologist, geneticist, pediatric, nursing, etc.) in one room.  We will hopefully clear up our questions, get them on the same page, and help them refine their approach and pay closer attention.  I received a list of questions from one doctor, and we will have another doctor friend sitting in with us for an extra set of ears.

5.  Hopefully following the conference we will have a clear direction on where we're headed and what procedures can, should, and will be done.

SIDE NOTE:  If anyone ever needs to go to Phoenix Children's Hospital for any length of time, here are my thoughts:  The nursing care is for the most part phenomenal; the doctors for the most part are above average; and the communication I would rate as poor to completely failing.  You need to be your own communication manager -- period.  You would expect that there is one, but there isn't.

Insurance, health, job, concern for my wife and child -- not sure what else there is to be stressed out about and hope I don't find out.  Your prayers mean more than anything right now, and they are valued.  Robin has been encouraged by the visits as well, and it helps her break up the day and keep her spirits up.  It is times like these that help clarify the relationships in my life -- whether family, friends, school, church, or work -- and also makes clear who really cares.  Fortunately, we're surrounded by wonderful people both near and far, so thank you.

I think that's enough for now.  Until next time. . . . . 

God Bless, 

Matt

"O Lord God of hosts, who is like You, O mighty Lord? Your faithfulness also surrounds You. You rule the swelling of the sea; When its waves rise, You still them." - Psalm 89:8-9 (Psalm 89 was written by Ethan the Ezrahite)

To All:

I have learned that there are two types of victories -- the one's that you win, and the times when you don't lose.  Today we have a small victory, unfortunately it doesn't get us any closer to knowing what's going on, and it's not about what we won but more about not having bad news (and that's good news!).  Since my last update, there has been much activity but very little progress, but let me get to the meat and potatoes. . . .

1.  There were neurological tests scheduled for last Friday, but due to an oversight in taking him off of his feeds, he couldn't go under anesthesia on a full tummy.  So it was rescheduled.  The next available time?  Today.  So after another long weekend of hanging out, this morning Ethan underwent the neurological EMG and NCV tests.

2.  Herein lies our victory.  The results came back this afternoon negative, so there are more neurological issues that have been counted out!  Thank God -- this was a big deal more so emotionally than anything else!

3.  We are still on the pattern of a couple of days of weight gain, followed by a couple days of loss.  He seems to really like to weigh around 14 pounds and not want to get any heavier.  Even though we're heading into swimsuit season, we told him that he didn't have to worry about being fashionably thin.  We'll see if that helps.

4.  Ethan now as a PIC line instead of an IV, which in my opinion should have been done long ago.  Major improvement over blowing IV lines every day or two.  His formula has also been changed out to the more easily digestible stuff, and he is still receiving feeds through an "NJ" tube into his intestines.

5.  I insisted Ethan be taken off of the drug Reglan which was prescribed to help his motility, but I also believe the drug is garbage and has been proven to have neurological side affects.  The majority of doctors agreed, so I'm not sure why he was on it in the first place, but he's off it now.

Before ever dealing with complicated medical issues, I always assumed that the doctors knew about almost every condition out there, and it was just a matter of whether it was treatable or not.  After having Ethan in the hospital as a 7, 8, and 9 month old, I have learned from our stay (as well as the stories of other patients that we have met) that there is much that is still unknown to the doc's.  I suppose it's a testament to the complexity of the human body -- one that is not here by mere time and chance but by creative design and purpose. 

As with every update, there's a story to be told about what's been done to Ethan and what they're going to do.  So here's what the rest of the week has in store:

1.  Tomorrow (Wednesday) morning, Ethan is getting a CAT scan of his lungs to ensure that the aspiration hasn't damaged his airways.  If it has, there will be another bronchoscopy to determine the issues, and likely a fundus surgery (Nissen Fundoplication for those who are preparing for the quiz) which will tighten the esophageal chamber and (hopefully) prevent reflux and the accompanying aspiration.  This prevents everything from coming up, including when you have an upset stomach, so it doesn't sound fun.

2.  On Thursday or Friday (I'm guessing Friday) they are trying to coordinate a "surgery day" where they can do multiple procedures under one general anesthesia (which will be number 7 or 8 at that point).  He will likely get a "GJ" tube, where they go in through his side and attach his stomach to inside his torso and put a tube into his stomach (G) and one into his intestine (J).  They will also do a muscle biopsy while he's "sleeping", and a bronchoscopy if necessary.  

3.  Once the GJ tube is in, we are pretty much committed to feeding him via tube for an extended period of time.  Ethan will likely not take any food or nourishment by mouth for 8-12 months, and we will have to re-train him how to eat when he does.  We will go home with the machines and all -- so it will be a long haul.  

4.  Unfortunately this still doesn't answer what is going on, so we'll be doing all this just to continue treatment at home while we still try and figure it out.  He needs to consistently gain weight, or we will find ourselves back in the same situation again.

5.  Guess what?  We're not getting out this week, if you haven't pieced that together for yourselves already.  So as always, we'll make an optimistic goal for release early next week.  I make that goal with great reserve, but a goal nonetheless.  

I now formally deputize you all as Honorary GI Specialists!  

I will conclude with an uplifting note.  Ethan has an amazing spirit, and his smile and attitude have infected the entire medical staff.  Today, he was fully sedated with an oxygen mask on after his procedures and Robin went to move his arm and he awoke.  Coming out of deep anesthesia he looked around, smiled, and waved.  When we got back to our floor, the nurses asked how long he had been back because they couldn't believe that he could just come out of anesthesia and a procedure with an immediate smile.  It's a reminder to me that a good attitude can go a long way in serving as a witness of my character to others.  If a 9 month old can do it, so can I!  The greatest testimonies are often those when no words are ever spoken (which is particularly difficult for me!).

Thank you all for following along with us on our journey and supporting us in so many ways -- too many now to even try to adequately list out.  We feel blessed beyond compare, and have made many new friends and deepened our existing relationships.  I have heard from many that this update now reaches across the country and has hit prayer lists in states all over -- WOW!  I feel a burden to improve the quality of my writing so that everyone stays captivated!

Until next time. . . . 

God Bless, 

Matt

"When it rains, it pours . . . " - Noah (very loose paraphrase!)

To All:

Thank you all for your continued support and prayers throughout all of the trials with our little Ethan, which continue to drag on.  As I type, two of my other sons, Jacob and Nicholas, as well as myself, now all have pink eye, so we are staying home for the day so we don't contaminate anyone else.  With each update, I think my hair gets a bit more gray, and I might start pulling it out soon!  It's been a long haul, and unfortunately it doesn't look like it's getting any shorter.  Last week we hoped for answers, possible surgery, and maybe even release this week -- but I think that was more optimism than reality.  Here we are on Wednesday, and it doesn't look like we're getting out any time soon.  We are on roommate number 12 and counting.

Ethan's conditions have remained a constant source of frustration and a bit of a mystery to the fleet of specialists we have working with him (Pediatrician, GI Specialist, Pulmonologist, Geneticist, Neurologist, and Physical Therapist).  Here's the rundown:

1.  Ethan has been on an NJ tube for a week-and-a-half which puts his feedings directly into his intestine to hopefully avoid the aspiration issues.  Last Friday, he had a bronchoscopy (again) to see if the results would be better in his airways than when he was getting food into his stomach.  We didn't get the results of that test until today, and they were not good.  His lipid count was actually higher than it was when stomach feeding, so he's still aspirating substantially.  If he had no lipids in his airways, they would have likely put a "J" tube surgically into his side for prolonged feeding.  With these results, they are not even sure what they are going to do next and are conferring as I type.

2.  The results of the bronchoscopy also showed that he had a bacterial infection in his airways, which he is on antibiotics for, which has given him diarrhea.  They believe that the infection is minor, and that if he was otherwise healthy, would likely not have treated it.  

3.  Ethan is on his sixth IV, and it is getting increasingly difficult to put in a line.  Two nights ago, they called in the "IV Team" and it still took them six tries (pokes) to get it in.  He is very bruised up.  His fifth line ruptured and filled his arm and hand up with fluid.  With that said, this afternoon he is getting a Picc line (or central line) which will provide an IV line that goes close to the heart in a larger vein and is much less likely to come out and can be used longer-term, and can provide TPN feeding in the future if needed (which I will explain in a later update if we get there).

4.  Ethan's muscle tone and lack of strong reflexes are now also of primary concern, and a Neurologist has been called in to deal with that.  He will be getting three tests from the Neurologist: 1) Nerve Conduction Velocity (NCV) Test which measures nerve conduction and muscle action; 2) an Electromyography (EMG) which tests the electric activity of the muscles; and 3) a Creatine Phosphokinase (CPK) blood test which is a stress test which I don't fully understand the purpose of.  For the first two, he will be sedated and as I understand it they are both invasive procedures.  

But wait, there's more. . . . .

5.  The Geneticist is running a DNA workup to test for issues related to peripheral neuropathy.  

6.  They are changing his formula through his feeding tube to something that digest more easily -- I forget the name of it. . . . He is on two medicines through his tube as well, one to manage the reflux and the other to help his stomach digest faster.  

We are confident that we have some of the most competent and intelligent doctors working on him, but the confidence in their ability and smarts doesn't translate into comfort and peace-of-mind for our boy.  I have gone from concerned to worried, and now I'm getting just plain scared.  It's that weak in the knees and numb in the fingers and toes kind-of scared, and it's not a great place to be.  Good sleep remains elusive for Robin and myself -- and Robin still hasn't missed one night in the hospital.  Robin has received many visits in the hospital this week, and that has really helped her pass the time and feel supported -- so thank you for that!

There is literally so much going on right now with him that I think this captures the main things, but I'm not fully sure.  Your continued prayers and support remain a source of encouragement, and the help we have received has been priceless.  This past week, I've had to make some last minute calls several times to several people for help, and they have eagerly delivered.  I hope that I can serve you all in the future the way we have been served.

I remember as a child my parents telling me whenever I had issues that they would take my pain for me if they could, and that I couldn't understand how much they loved me.  As a child those words always seemed trite, yet as a father myself, they are deep beyond measure.  I would literally do anything to trade places with Ethan, but know that I can't, so I just continue to hope, pray, and worry.  The immediate prayer is for a successful anesthesia and Picc line this afternoon, and of course the long-term prayer is that the doctors, nurses, and medical staff would be blessed to use the full measure of all their skills, gifts, talents, and abilities to bring Ethan to health.  And we know that God can work above-and-beyond all ordinary means to interject and work a miracle of healing in Ethan, and that He hears our prayers. 

Calling out to Him now and trying to remain faithful, 

Matt

The Saga Continues

"Truly I say to you, whoever does not receive the kingdom of God like a child will not enter it at all." - Luke 18:17

To All:

There are never great days when you have a child in the hospital -- though some are better than others -- and the ups and downs of all of the strategies, mysteries, and problems leave a feeling that you've always just stepped off of a medical roller coaster ride.  So here I stand at the exit of another day of roller coaster rides. . . . 

Today, Ethan had his second bronchoscopy to snoop around and take samples to see if he is still aspirating food into his airways while being tube fed into his intestines and not his stomach (NJ tube).  Unfortunately, since the procedure was done on a Friday afternoon, it's likely that we won't get the results until Monday.  Even more discouraging is that last week his airways looked good other than the results that he had fluid, and this week his airways weren't looking so good.  The pulmonologist said that the passage-ways looked inflamed and irritated, and they are testing for both fluids as well as viruses.  

In concert with the aspiration issues, the doctors have become increasingly concerned about how lethargic Ethan is as well as his lack of muscle tone.  What this means for Ethan is two things:

1.  He will get a physical therapist to begin working with him on his muscle tone; and

2.  We have been referred back to a Geneticist for further genetic testing.

His genetic/chromosomal testing came back fine, but he continues to display newborn sleeping patterns, sometimes sleeping 18 hours in a day.  The geneticist came to visit us this afternoon and was unable to get Ethan to show any signs of reflexes.  Last week he had good reflexes, this week he has none.  This means that we will now be doing a full DNA workup on Ethan to test for (among other things) peripheral neuropathy issues, or in common English, issues pertaining to his nervous system.  We really pray that these results will come back favorably, because if they don't, it could be a serious and incurable problem.

Several doctors are now openly admitting that Ethan's issues have been a source of frustration because they have been unable to pinpoint an exact problem and solution.  They continue to confer, so hopefully we will get to the bottom of all of this soon and we hope that there are not several problems occurring at the same time.  We are making the assumption that a surgical procedure is still likely for next week, but don't know if the DNA tests will throw off the schedule.

Ethan now has another IV in place, and had more blood drawn tonight.  When he was put back on his feeding tube tonight, he was regurgitating so much that he was having to catch his breath.  They stopped the feeding and increased IV fluids.  As I type, they are trying to get him back on the feeding while he sleeps.  He needs the calories and he needs to absorb them!  He is still not gaining weight, which has been one of the continuous causes of concern throughout.  Ethan has no choice but to fully trust in those who care for him, much as I am being forced more and more to solely trust in the Great Physician.

I type this on the eve of one month of hospitalization for Ethan.  Robin has not missed a single night with him, and has stayed by his side almost all of the time.  She gets rare breaks, but has really appreciated the visits.  It's increasingly looking like our goal of getting released mid-week next week is quickly slipping away, and we suspect that we're in until at least next weekend.  I will be traveling for work on Monday, and it is my hope that any surgical procedures or major tests will be done on Tuesday or after so that I can be there.  

I don't want to say thank you so much that it sounds trite, but it's all that I can do right now and it comes from the heart, so thank you.  There have been many who have gone out of their way to help us, and it has made all of the difference in the world.  There have been many more with open offers of help, and it's comforting to know there are places to turn.  Thank you all.

Now back to regularly-scheduled programming . . .

God Bless, 

Matt

Been a while, want to update everyone

To All:

It's been a while since I sent my last update, and people have been increasingly asking how Ethan is doing, so I wanted to update everyone.  It remains encouraging to have all of you take an active interest in our situation and to genuinely want to know what is going on.  There has been a lot going on since the last update, so in my traditional form, I will itemize the "big" points:

1.  Ethan had his gastric test, and the results were that his stomach digests food very slowly, which further supports the reflux aspiration theory.

2.  Ethan had an NJ feeding tube placed, which is a tube that goes into the nose and through the stomach into the intestine.  They want to see how well he absorbs food through his intestine and try and avoid the aspiration issue.

3.  On my watch, Ethan pulled out his NJ tube and had to have it re-done.  Every time he gets one, he has to go to radiology so they can video and watch where it's going to ensure that they get it in the right place.  Ethan doesn't like this process at all, and I felt bad.  

4.  He hasn't been doing great on the NJ tube -- he still refluxes quite a bit and they put him on a secondary medication (in addition to Prevacid) to try and get his stomach to digest faster.  He has also lost more weight several days this week, and slept all night Sunday night, all day Monday (except for 45 minutes) and all Monday night.  He was more active yesterday, but back to sleeping a lot today.  

5.  He is scheduled to undergo bronchoscopy #2 (and general anesthesia #4) on Friday at 12:30pm.  This will determine the level of aspiration still occurring with the NJ tube.  

6.  From there, a determination will be made about what to do.  If he is not aspirating with the NJ tube, it's likely that a "G" tube will be placed, which is a tube that is surgically implanted in his stomach area for long-term feeding.  If this is the case, it's likely that Ethan will not eat orally for 6-8 months, and will need therapy in the future to retrain him how to eat.  

7.  If he is still aspirating, a surgical procedure may be necessary.  We should have more clear answers as to the direction late Friday or Saturday.  

This Saturday will mark one month in the hospital for Ethan and mommy.  Remarkably, Robin is holding up unbelievably well and Ethan is the happiest patient ever to be seen at the hospital.  He almost never cries (except when undergoing a procedure), and waves and smiles at everyone all the time (when he's awake) -- his spirit is amazing.  This has been a long haul, but we have met many that have much longer stays and much harder situations.  There are a group of other parents and kids that we have become close with on the floor that are also "camping out" on Floor 3, and have served as encouragement and distraction during the day for Robin.  

If everything goes well, we may get out mid next week, but we've thought that a few times before!  We are on the one-day-at-a-time plan, so we'll have to wait and see.  The other boys are holding up well, but the effects are becoming more apparent, especially for the younger two, Nicholas and Andrew.  Andrew has become increasingly sensitive in the past few days, and has begun asking for his mommy and getting very tearful around bedtime.  The other night I asked him if he wanted a hug, and he said that he wanted his mommy and brother to be home again.  Nicholas shared the other day that he doesn't think that the doctors can fix Ethan, and if they could, they would have done it by now, and they're just kidding us into thinking they can help.  

It's my prayer that we can have Ethan on the mend and back home with Robin, and that our family can get some "normalcy" back -- whatever that might be for the Peterson clan!  I appreciate all of your continued prayers and support, I truly believe that they have served to protect Ethan and hold up Robin and our family during this time.  More than ever, we need the prayers!

Until the next update. . . . . .

God Bless, 

Matt

Breaking News

To All:

Other than the day-to-day litany of tests being conducted on Ethan, we think we may have found the issue! Like everything we have gone through, there is good and bad news in the discovery. . . .

The doctors just came in to talk with Robin, and the results of the bronchoscopy are back.  It turns out that Ethan has a significant amount of fluid and lipids in his lungs, which very likely means that he is reflux aspirating his food.  What this immediately means is this:

1.  He is to stop tube feeding immediately and go back on IV's for all nutrition and hydration;

2.  He will still be undergoing the Gastric Swallow Test tomorrow in Nuclear Medicine to see how he absorbs food and where it goes;

3.  He will be getting a "weighted tube" inserted directly into his intestine for food, hopefully bypassing the stomach and avoiding the aspiration; and 

4.  We will go from there.  We don't know how to correct this problem, as the doctors were cautious to say anything to us without conferring and having GI and the pulmonologist get back to us after the test tomorrow morning.  In discussions several days ago, we heard that surgery could be involved if this was the issue.

Ethan will not go home with a weighted tube, so it is likely that our long stay is being extended further.  

We really ask for prayer right now that the solution to this problem will be the easiest to fix, whatever that might be, and that God's hand will be upon Ethan and our whole family as we address this issue in the days to come.  This is a bizarre feeling I've never had before in my life where on one hand I'm relieved to know what the problem is and on the other hand scared for Ethan and possible surgeries, etc. 

Thank you all for your support as always -- it looks like we're finally finding something specific that we can put our heads, hands, hearts, and prayers around.  Thank you also for remaining so consistently faithful -- everyone has continued their support throughout this long and trying ordeal, and the continued help and love has meant so much.

God Bless, 

Matt

18th day

To All:

Hello again, it's me!  We are continuing on our journey heading into the 18th day at Phoenix Children's Hospital.  

This week, we tried to take Ethan from drip tube feeding to feeding him four ounces at a time (bolus feed). That didn't go well (reflux; aspiration; discomfort; etc.), and today he lost more weight, so as expected we are on to the next step.  Here's the short version:

1.  We are now under the care of a Pulmonologist (breathing/airways) to add to our list of specialists. 

2.  Tomorrow (Thursday) morning at 8:30am, Ethan is going to be put under general anesthesia for the third time and undergo a bronchoscopy in which they will put a tube down his airways and look around and take biopsies to see if and how much he is aspirating and look for any other issues.

3.  On Friday, he will be undergoing a Gastric Swallow Test, in which they put a dye through his feeding tube and watch on some kind of magical device while his stomach digests the food.  They want to see how fast/slow he is digesting and where it's going.  We will be checked into Nuclear Medicine for this procedure, so I don't know if this adds another specialist or is headed up by the GI doctors.  

4.  Also on Friday they will be putting a tube down his other nostril and doing a test on his stomach acids.

5.  We are still awaiting the results of the genetic/chromosomal tests . . . . 

We are fortunate that Ethan remains in good spirits when he is awake, and that his brain, heart, and vital organs (including hopefully lungs tomorrow!) have checked out o.k. and remain in good condition.  Robin continues to be by his side almost every moment, and I get over when I get a chance.  Thank you to those who have helped with our other boys -- it's helped me have some time in the mornings and evenings to get over and visit with both of them.

Ethan has been in the Children's Hospital so long now that he has met Disney characters, professional wrestlers, Arizona Cardinal players, and more.  Many stop by to say hi to the little ones, and it's great to see how many people and organizations care.  I remain amazed at the outpouring of love and support from all of you and so many more.

Thank you for walking on this journey with us, and I hope that I'm not too verbose in my updates . . . .

God Bless, 

Matt

Happy Easter, and welcome to Day 15 . . . .

To All:

 

So, it's been a long and busy weekend trying to juggle Easter weekend festivities with hospital visits and caring for Ethan.  This is getting a bit repetitive at this point, but a giant thank you to all of you who have helped us -- which feels like most of the Phoenix valley at this point and a big chunk of the rest of the country.  You have all been amazing, and people I don't even know have dedicated their time and efforts, prayers, gifts, meals, and love, and it really continues to amaze me how much everyone has cared for us in every way.  

Robin's parents were able to cover for Robin on Saturday so that she could make a surprise visit home to paint Easter eggs and spend some time with the family -- and that was really special.  I was able to cover for her on Saturday evening so that she could go out to dinner with the boys and her parents.  Knowing that we wouldn't all be together for Easter was a bit overwhelming, but we made the most of what we were given, and the boys all enjoyed their Easter immensely.  The nursing staff has been great and they had a heart for our situation, so this afternoon they "unhooked" Ethan and turned off his baby alarm and let us "wander" to the lobby of the hospital where the boys could see him.  This made everyone's day, particularly for Ethan, who was laughing, clapping, waving and smiling at his brothers.  We were able to get some family Easter pics in, albeit in the lobby of the hospital, and I've attached a couple of them to this email.

Now on to the meat-and-potatoes:

1.  Ethan continued to lose weight until Saturday.  On Saturday and today, he hasn't lost any weight.  That's the good news.  The bad news is that he hasn't gained any either, but we'll take what we can get.

2.  In concert with not losing weight, he has been staying awake for longer periods, and as always, is happy as a clam.  The nurses love him -- whenever they come in he waves and gives them a big smile.  He doesn't spend too much time fussing -- which has been a blessing for both he and Robin (and our roommates).  He still is far short of the time he should be staying awake, but it seems like we're making progress even though there is still no diagnosis.

3.  We ended up getting an echocardiogram, and it came back "mostly" normal.  Ethan has an extra artery, but we're told that this is not all that uncommon and really affects nothing and has nothing to do with his issues.  I guess if we were all to be scanned and prodded as much as Ethan has been, we'd all find interesting things about ourselves!

4.  We're still waiting the results of the genetic/chromosomal tests . . . . .

5.  If he can gain some weight, we will go to bolus feeding -- giving him 6 ounces of food at a time 4-5 times per day through his feeding tube instead of on a 24 hour drip.  

6.  There is some talk that he may be experiencing reflux aspiration -- which means he refluxes his food, but only high enough to then aspirate on it (goes into lungs).  This is another thing to look at, but it would require his third general anesthesia and a bronchoscopy (tubing into his airways and gathering some biopsies) to determine if he's aspirating.  They want to get him on bolus feeding to see his reflux results before doing that, so there is a little tail-chasing here to get him to gain weight.  

7.  They came in tonight to say that they will be doing more blood draws, but we're still trying to figure out looking for what.  We didn't know there was any other way to look at his blood, but they're getting creative at this point.  The doctors have conferred and they have admitted that this is challenging to them, but that there are a few avenues to still explore.  

8.  His second IV line blew today as well, and he will need another.  Bummer.  His arms are pretty dotted up, and he has a skin burn from the tape adhesive.

That's what we're looking at for the next several days.  So what are we thankful for?  Here's the short list:

1.  Ethan's heart, brain and vital organs continue to look and work great, and he even has an extra artery for spare parts!

2.  His spirit is amazing, and his smile and laugh is contagious.

3.  All of you!  I will not be able to say it enough, nor will I stop trying to do so.  THANK YOU ALL.

4.  Robin!!!  An unbelievable mother and wife, she has been an absolute pillar of strength throughout this.  If I was spending every night on that "couch" for 15 nights straight, these emails would be more focused on how I felt than on how Ethan was doing!  She never complains, has taken her two rounds of chemotherapy in the hospital room, and rarely leaves Ethan's side.  There is no better mommy than her!

I never thought that I would measure the success of my children in mere ounces, yet we are now measuring daily weight differences of Ethan in grams.  I am continually reminded of two things: 1) Life is precious and is sustained by God alone; and 2) I never really knew how powerful the love of friends, family, church, co-workers, and neighbors was until witnessing everyone single-mindedly thinking of our boy and family.  You know it's there, but to witness it in action is a whole different thing.  

So that will conclude my Easter ramblings.  I will update again in a few days, or if circumstances warrant I will send out sooner.  

God Bless,

Matt, Robin, Jacob, Nicholas, Andrew and Ethan

"Surely I have composed and quieted my soul; Like a weaned child rests against his mother, My soul is like a weaned child within me." - Psalm 131:2

To All:

As always, thank you for the outpouring of love and support -- it continues to be an absolute blessing.  This has been a much longer road than we had imagined it would be, and we're certainly not done yet.  When Ethan was admitted to the hospital, we were hoping to be in and out within five days with clear instructions on what to do and a definitive diagnosis.  Then we set our sights to be out by this past weekend.  Now, I think Easter weekend is the next realistic goal.  The lack of diagnosis combined with the absence of a discharge date has made the whole process very tense, but thanks to all of you, it has been much easier.  I can't imagine going through all of this with no place to turn, and it seems like half the world is praying and helping at this point!

So I need to backtrack a bit to the last update.  When I sent the email, it was my understanding from the doctors that they discovered an intestinal virus that may have been partially to blame for his problems.  The next day I found out this wasn't the case.  The intestinal virus was almost certainly "caught" in the hospital, and only added to his problems, but didn't help answer why we admitted him in the first place, it just complicated matters.  With that said, here's the bullet points:

1.  Since early last week, Ethan has been throwing up every day and night.  They couldn't take him off of his food, so he would constantly get a slow drip day and night, and constantly throw it up.  They believe the sickness was caused by the virus, and we were going to need to let the virus take it's course until they could get back to analyzing his situation.  

2.  Ethan stopped vomiting yesterday morning, and has been on a slow feeding tube drip all yesterday, last night and today.  Even when holding his food down, Ethan lost more weight at today's weigh-in.  

3.  With the GI workup primarily complete and problems persisting, it looks like we're on to the next step.

4.  It is likely that tomorrow we will go under the care of a pediatric metabolic/genetic specialist to determine if he has a metabolic issue processing nutrients from the food he eats.

5.  Ethan is very lethargic at this point, and sleeps almost all of the time.  When he is awake, he still smiles, but is very limp and "noodle" like.  When I visit the hospital, we'll play for 20 minutes and then he'll sleep on me for two hours.  This is certainly not my experience of eight month old activity that I witnessed from his older brothers and it's hard to see him so weak.  

6.  We have been moderately encouraged by another mother on the floor that Robin has been talking to.  When she described her boy (losing weight, lethargic, always liked to sleep, gained weight at first and then stopped, etc. . .), it sounded like she was talking about Ethan.  That boy was diagnosed with a metabolic disorder, so we hope that we too can get some definitive answers.  We also got the mother's name and number for information and support.

7.  They have asked for the results of the stool sample to be expedited, and we should have the whole set back tomorrow.  Rotavirus has been excluded, so we'll see what comes up.  If they can nail the virus down and determine if it's gone, he can come off of contact isolation and be free to look out the windows and sit in his favorite hall seat with mommy and daddy again.  

8.  Robin continues to "hold down the fort" at the hospital with only minimal relief from me (she went out to dinner with the other boys twice and that's the only time she's left the hospital in 10 days).  She continues to be an absolute rock, and I can only attribute that to the Lord.  

So that's where we are for now.  I'm sorry if the updates are too long, but I have to admit that there is a bit of therapy in typing these.  It helps put my thoughts in order as well.  Thank you to all who pray, help, visit, read the updates, bring meals, help pick up the other boys from school, watch the boys, etc. -- we couldn't do it without you.  

God Bless, 

Matt, Robin, Jacob, Nicholas, Andrew and Ethan

"When my world is shaking, heaven stands." - JJ Heller ("Your Hands")

To All:

We have received support over the past week that is unmeasurable in any way at all -- through giving, meals, prayer, calls, email, helping with our other boys, etc. . . . I don't even know how to show how truly thankful we are, and a simple thank you isn't nearly enough.  Yet all I can do right now is say thank you, and we hope that we have the privilege to serve in the future as we are being served now.  It's comforting to know that our roots to family and friends are deep.

With that said, we actually have some news.  It has been a long week, and Ethan has been poked and prodded in every way imaginable.  We have discovered that he is a durable little guy and has won the hearts of the nursing staff with his attitude.  So here's the rundown:

1.  Ethan didn't tolerate the feeding well and yesterday (Thursday) morning, they took him off of feeding through the feeding tube and put him on full IV.  

2.  Yesterday afternoon, he went under general anesthesia and had a GI scope and biopsies done.  He didn't come out of that too happy and cried for about 3 hours.  Luckily Pastor Billy and Phil Hunter were there to pray for him when he calmed down.

3.  Also yesterday, his sweat test for cystic fibrosis came back negative, which was great news.

4.  Last night, they put him back on a slow drip for feeding through the night.

5.  He made it through the night on the feed drip, which was encouraging, but by mid-morning was throwing up again.

6.  Tonight (Friday), the speech therapist came in to work on his mouth feeding which went really well, although he really didn't take much food, he showed her that he does have age-appropriate eating skills.

7.  And finally tonight, the biopsies came back around 5:30pm.  They came back normal with no allergies, but did show signs of an acute intestinal virus.

So with the news of a possible virus, we are now on "contact isolation" which means baby is confined to his room and can no longer walk the halls and look out the windows with mommy and daddy.  For those of you who have seen the room, it's a tight space to be confined to.  The nursing staff will also now come in fully garbed with masks and all.

The doctors don't seem convinced that the virus is the answer, but the combination of the RSV, ear infections, pulmonary aspiration, and intestinal virus have all added up.  Because he hasn't gained weight since four months, the doctors think there may be something else as well.  There is still an issue with his urination, and he has been taken off of the IV tonight to see how he does.  If that remains a problem, we'll work on that next.  

We are waiting for Ethan to go "number 2" so they can analyze the stool sample for the virus, which could take up to ten days to fully analyze.  Ethan doesn't like to go "number 2" and may not do so for several days, so the clock won't start until he does.  

If we can get him retaining food through the feeding tube (which I've learned how to place through the nose -- not fun for either of us!) and urinating regularly, as well as gaining weight, he may be able to come home for outpatient care.  If we can't, metabolic testing is next. . . . 

So in summary, though we have some (possible) answers, we still have many questions.  We are hoping for weight gain without the IV's in, that he holds his tube feedings down, and that he goes number 1 regularly and number 2 soon.  We want him home, but we also want to try and avoid coming back, so we want to balance getting him home with getting him stabilized.

Thank you all for being so concerned and caring so much.

God Bless, 

Matt 

and Robin, Jacob, Nicholas, Andrew and Ethan

The Beginning

To All,

First of all, I want to say thank you to everyone for their prayers, support, and concern for Ethan. Having friends, family, co-workers, and a school and church community that care so much is truly touching.

Most of you on this list have been getting updated frequently, but I'm forgetting whom I'm telling what to at this point, so I thought I would provide a summary of events for those who haven't heard, and an update for those who have.

Here's the rundown so far (from the beginning):

1. Ethan has not gained weight since his four month checkup (he's now eight months old), and three weeks ago was diagnosed with RSV, double-ear infections, and bronchitis. Since December, he has been losing weight, culminating last week with daily weight loss. At four months, he weighed over 15 pounds. Today he is somewhere around 12 pounds.

2. Ethan was admitted to Phoenix Children's Hospital last Saturday, March 20th and was diagnosed with "failure to thrive" and wasn't receiving the nourishment he needed. Even though he would consume the correct amount of formula every day, he continued to decline in weight and became more and more lethargic, sleeping most of the day and night.

3. Since admission, he has undergone a series of tests including blood, sweat (for cystic fibrosis), and urine analysis, chest and stomach x-rays, a radiation swallow test, and a test for pancreatic function. Primary organ function remains good (brain, kidney, liver) other than some signs of dehydration and lack of nutrition. We are still waiting for the results of the pancreatic function and the cystic fibrosis.

4. It was determined that he does have some issue with pulmonary aspiration (food going into the lungs), though it seems very minor and should be fixed by thickening the formula mixture. This doesn't answer the primary problem of why isn't he absorbing nutrients from his feedings, but it is at least something that was answered in a week that is filled with many more questions.

5. He is currently on an IV, feeding tube, and a catheter at times. He has not been going "number 1" regularly, with stretches longer than 22 hours, sometimes even with IV fluids.

We have been trying to feed him by bottle first, and if that doesn't work, they put the formula mixture into the feeding tube.

6. Last night (Tues, Mar 23), they put him on an all-night drip to get him food over 8 hours. Even with the all-night feeding, he lost more weight.

7. Today (Wed, Mar 24) things got a bit worse. We tried to feed him in the afternoon, and he began gagging immediately with the bottle. When the formula was put in via feeding tube, he began vomiting so heavily that it required nurse and GI doctor intervention. They let him go to sleep, and tried to get food into him while he was sleeping through the feeding tube, and he awoke and began vomiting heavily again.

8. As I type this at 10:20pm, I just got off the phone with Robin. They are again trying a very, very slow drip through the feeding tube for 10 hours this time. If he awakes and vomits in the night, he will have to go on full IV's for hydration and nutrition, and will undergo a GI scope (up and down) tomorrow.

So that's what I know so far. We have been receiving food from the church, and our friends have been more than gracious to help out with our other three boys whenever necessary. There is nothing that we are in need of at this time other than prayers for Ethan and Robin, who hasn't left his side and sleeps on the hospital couch/bed next to his crib. She has been a pillar of strength, and hasn't said a word about her rheumatoid arthritis, which I know is bothering her.

Again, I can't thank you all enough for your continued support and prayers.

Sincerely,

Matt

on behalf of Robin, Jacob, Nicholas, Andrew, and Ethan