Monday, March 29, 2010

"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

Friday, March 26, 2010

"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, 

and Robin, Jacob, Nicholas, Andrew and Ethan

Wednesday, March 24, 2010

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.


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