Thursday, March 1, 2012

Punch in the gut!

Ok..I am gonna try to sum this up fast, because I just typed a bunch and then it was all deleted and I am about to throw this computer through the window.

Ethan:  He was in the hospital last week for aspiration pneumonia.  He choked on a piece of food and Jackie had to do the Heimlich......well, it did not all come out and this is what he developed.  We have been through months of feeding therapy and he still struggles daily.  We do see progress, but very small baby steps.  What we did find out is that Ethan has a submucous cleft palate.  After 3 ENTs have looked in his mouth hundreds of times, it took Jackie and I researching and figuring this out.  The craniofacial doc confirmed this while in the hospital.  Then, when he said he may not do the surgery, Jackie's and my jaw hit the floor.  Get this....the doc said, " I would like to wait and see how much air comes out of Ethan's nose when he talks."  You freaking moron...he is nonverbal!!!  He does not talk.....  So, after talking about this multiple times, he is considering performing the surgery and we will meet with him sometime soon.

Throughout all this, we sit and continue to watch Nick deteriorate.  Why?  Nobody knows.   Since July of 2011 Nick has gone failure to thrive, his seizures have increased, his mobility has declined, spends part a day in a wheelchair, going back to AFOs (braces that go up to knee), does not care to eat, developed scoliosis and now it is impacting his heart.

We spent all day Tuesday at Children's having some significant heart work up done to see how the heart was functioning.  Well, we left at 6:30 in the evening and we already received a call by 10:00 AM the next morning......well, know what this means when you get a call this fast.  We were told that the official results were not back, but we needed to get all of Nick's doctors to send in everything they have one him.  Well, today, I had a long talk over the phone with the cardiologist.  What the MRI showed is that Nick's heart is showing "a decrease in function" and that " his heart is fighting against a bigger process".  So, the heart is not causing all this to happen to Nick, but whatever is is effecting the heart.

Then, I caught myself off guard as I was saying words that I never would thought to come out of my mouth...  "Is he dying?"  I asked the doctor to be completely honest and do not sugar coat anything.  She responded with "we don't know!"  I froze for a second and thought, did that just come out of my mouth.  A few tears rolled down, but then had to regain because we now have to figure out what is next. She did say that when the time comes to talk other measures or issues, she will never hold anything back.

What we do know is that he is not in any immediate danger.  No cardiac meds are needed right now and we have to sit and wait, and wait, and wait.  There will be more blood and then more blood.  We go in for the next EEG next week and then it was recommended that Nick have a EMG.  From what I gather, they will have to put him under, stick needles in his muscles and shoot electrodes into him.  This will attempt to figure out which and why the muscles are declining.  This doc is amazing.  She is walking the walk with us and says she will not give up until we figure out what is wrong with Nick, why his body is deteriorating, and how can we stop this.  After that, then maybe a muscle biopsy.  Then we should have both boys' blood back from Houston in 12 weeks.  We sent off their blood a few weeks ago to cross reference any and all issues with them.  Nobody, not one of 19 total doctors, can tell us what is going on with our boys....

Then there is my wonderful wife.  Her belief and hope gives me strength everyday to face a new one and ready to fight....fight the system...medical, legal, financial, etc....  She is the true glue to this family.  Without her, and her amazing strength, we would be broken in this physical world!

With Nick, it is hard to take this all in.......I pray....pray so hard.  I went from the why him? why is this going on? Give him strength, give us strength, pray for no pain, pray for happiness. 

Lord, be with Nick.  and I know he is.  Nick is so happy.  His threshold of pain with his AU is amazing and he has no idea what is going on.  Even though he struggles and I cringe when he attempts to walk now, he keeps going like everything is fine and the same.  This is how I know my God is an AWESOME God. 

We pray for answers, we pray for doctors, and we pray for a MIRACLE!


  1. Everytime I read your stuff it makes me cry. I thank God that he brought you into my life. I envy your strength and passion and you make me want to be a better parent and teacher.

  2. As I go thru a similar experience of unanswered questions about k's health and prognosis, I too just pray that she will not b in pain! There is a bigger plan for your family and mine, but answers would b nice....that's where I struggle with my faith. Love to you and the family