"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