"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