Sunday, July 14, 2013

I Fought the Tube and the Tube Won

I imagine that a big part of the reason I have not blogged much lately is this post.  I rarely like to blog about discouraging things.  I like to wait until the storm is over before I write.  I guess, in a sense, the storm is over.  Just not the way I had envisioned it.

This has been on my heart and constantly on my mind for two and a half years.  It all started shortly before Davin's 18th birthday.  The boy who ate so much and so happily began to refuse to eat.  Shortly after that, his eating became incredibly unorganized and he was coughing repeatedly during his meals.  He would not eat any kind of food and we went to only feeding him Ensure.  He was maintaining his weight, but eating became a huge chore.  For Davin and for me.  It took a long time to feed him each time and there were often tears.  Most of the time, they were mine. 

I prayed.  I asked God to restore Davin's eating to what it once was.  I asked others to pray.  They did. 

Things got better.  Things got worse.  Things got better.  Things got worse. 

We spent a year and a half living in upstate NY and things were okay.  Eating was not great, but it was okay most of the time.  Davin started to be a little bit more interested in eating again and began eating applesauce and yogurt on a regular basis.  I felt like we were making a come back. 

I prayed.  I pleaded.  Please take this from Davin.  Let him enjoy eating like he used to. 

By the time we moved to NJ, I wasn't comfortable with him being fed at school.  I knew that although his school in NY fed him with no issues, the school in NJ would have big problems with his eating.  They had problems with his eating when he had no problems eating.  So, I made the decision at the beginning of the year to pick Davin up and feed him myself every single day.  I figured that would give me time to get some things figured out for Davin.  He had a hip out of socket.  His asthma had gotten much more involved.  He needed a swallow study.  It was time to ask for some help.  As much as I hated to ask for it.....

We got Davin taken care of physically and figured out that he needed more asthma medicine.  I know that all of these things work together, so was hoping that the feeding would follow suit. 

And sometimes it did.  And sometimes it didn't.  Each day was different.   Sometimes weeks were different. 

Recently there were some weeks where my nerves literally did not have time to recover before we headed into another feeding.  Davin was refusing to eat and I needed him to get the calories.  I was doing everything I could possibly think of to help him, but he would choke and gag and it. was. awful.  Yet, I still didn't want to give up.  There was still a chance.

Many months ago, I started asking God for big stuff.  I knew I was asking for a lot for Davin to be restored to what he was (feeding-wise) and I knew God could do it.  I heard a preacher say to ask God for the big things!  Watch Him move!  I asked and I asked and I asked.  I believed and I believed. 

Tuesday was Davin's swallow study (why it took so long is a rather long and boring story).  It was time.  I needed to know what we should do after this and I knew in my heart that it would shock me if they did not recommend Davin getting a g-tube. 

Do you know how you can know something in your head, but your heart is just not there yet? 

Davin was cooperative and helpful through the swallow study.  It was an accurate reflection of what feeding goes like.  Davin aspirated to some level on every single thing they gave him at some point.  The Doctor administering the test actually gasped. 

In my wildest dreams, this scenario did not come up....

"Well, we have a real situation here now.  We can't let you go home with no safe way to feed Davin."

And then things just came crashing down.  I sobbed.  Davin looked at me wondering why I was so upset.  I so didn't want him to think that he had done something wrong. 

Our pulmonologist was called and came down to radiology to talk with us.  Again, crying.  I. Was. Crushed.  I. Was. Devastated.  The. Fight. Was. Over.  Our sweet, sweet pulmonologist (whom I just love) just softly whispered that she was so very sorry.  She was so very sorry.  I felt raw.  She waited for me to compose myself and shared our options.  They were pretty much the same. 

1. Be admitted into the hospital immediately and have the surgery to place a g-tube. 

2. Get an NG tube (down his nose) and go home to wrap your head around everything.  Come back, be admitted into the hospital and have the surgery to place a g-tube. 

I told her it seemed like they both ended at the same place. She nodded.  It seemed silly to go home when we were going to think about it and dread it.   I asked if I could call my husband and cancel Davin's therapy for the next days.  We made the decision to be admitted. 

The doctor told me that we would be in the hospital through the end of the week.  What????  It was Tuesday now.  The end of the week? 

Davin ended up having an NG tube placed while tests were being run and his surgery was scheduled.  On Friday Davin was wheeled away on a stretcher (while he was shouting and hollering and waving his arms all excited for some reason;-) and he had surgery.  Davin now sports a g-tube out of his adorable belly.  He was brave.  He is relieved. He is.  I can see it.  The huge burden is lifted off of his little shoulders. 

I am trying to follow Davin's lead.  I am trying to look for the positives.  There are many and I will share them a bit later. 

I asked God to do a big thing.  He said no.  I don't understand that.  I am a little disappointed and somewhat upset to be honest. 

Now we are on to Plan B.  We are ready.  After a week in the hospital, we are heading home to conquer this and incorporate it into our lives and find a new normal. 


Martha said...

I have tears too. I love you much and you are in my prayers. New normals are hard, but God knows that too. He is there.

Anonymous said... guys will all do just fine! It will take a while to get use to this "new normal", but you will adjust. I love you too, miss you, and I'm praying!

Big hugs!

Anonymous said...

I have watched you over the years handle one challenge after another. I want you to know how incredibly strong I think you are as a woman and mother. I am so proud of the incredible family you have raised! I think about how things were when we were kids and the fun I had with my best friend! Even thoughtime and distance has come between us please know I still consider you my best friend! I will continue to pray for and miss you much!

Aunt Jina said...

Heather, I had no idea what was going on with you and davin. I think of you so often and will pray for all of you.

Brenda said...

Heather - Wow - what a week Davin, you, and the rest of your family have had. When I read about Davin shouting and waving being rolled to surgery it made me smile - that is so that boy , a blessing from our Lord that Davin faces the obstacles with such grace and you my sweet friend will face this new normal with grace, sweetness, and joy perhaps not every time and perhaps not whole heartedly at first but you will with His help get to that place. Will be praying for you all! <3 Brenda

Anonymous said...

What a burden you have born! I have a granddaughter with a gtube. She's had it for 5 years. While she currently isn't fed through it, she gets meds through it and it is a lifesaver to not have to struggle twice a day to get a young child to take terrible tasting medications. She's a typically developing kid with health issues and she goes to public pools etc in a bikini and knows how to deal with people's questions and stares...and last week after helping with her meds, her younger brother said, "your gtube is beautiful!" If only all of society could have the perspective of this sweet boy. I hope you find, like we did, that the gtube IS God's answer, HE knows how to help you and your child stop suffering!

Rachel said...

Heather, after reading your facebook status today I came here to see what was going on with Davin. I am in tears too, so sorry for what he and you have been going through. What a relief it must be (even though it's not the outcome you had anticipated) to sense the relief in him. Praying for you guys and wishing the best for all.

Christine said...

Big hugs Heather. You are such an amazing Mom. I would have been crying too. Hope things get better from this point on.

Martha said...

You have a heap of wonderful friends and a super great family beside you every step of the way. And you are getting more blog followers! (That's always a plus.)

Heather said...

You are right, Martha. I am so thankful for the support that Davin and I have. We will get the hang of everything. I know it will just take time.

The extra blog followers was definitely a bonus that I wasn't counting on. I am definitely adding that to my blessings:-)

Summer said...

You are a warrior woman. You are inspiring. You amaze me.

Thank you for sharing your journey.