"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