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As good as it gets in the hospital

By | Daily Life, Looking Up, Prayers, Uncategorized | 18 Comments

I’m sitting with Ashtyn watching Ratatouille and am feeling such joy.  Yes you heard me, joy.  Joy because of the day Ashtyn had.  Joy for the support that surrounds us.  Joy because of peace.  Joy because of hope.

Today was the best day yet. What made today so good?  Nothing went wrong.  On top of that, the day had a peaceful, fun vibe and Ashtyn accomplished much in her preparation and empowerment.

Last night right before going to bed we talked about the possibility of getting an NG tube today because she hadn’t been able to eat enough calories on her own.  She was adamant about not getting a tube.  Ashtyn had already had an NG tube placed when she got contrast for her CT scan and hated it so badly she didn’t want to do it again.  She had a cup of Top Ramen by her bedside.  With determination in her eyes and disgust in her face she forced a few bites of the noodles.  In a matter of minutes she threw it all back up. “Ashtyn, don’t worry.  We’ll try again tomorrow.”

She woke up this morning at 10 a.m. feeling good.  First thing on the agenda was to eat.  For breakfast I ordered some applesauce and toast.  She ate the apple sauce without a problem and forced down a piece of toast.  An hour later I sat with her entire healthcare team while they were on rounds outside her door. They discussed her progress and plan.  I asked if they would give her one more day to prove she could eat enough calories on her own.  They agreed though they didn’t think she could do it.  I was skeptical as well.  After talking with the doctors and dietitian I went back into the room.  I’m not proud to admit that I tried talking Ashtyn into an NG tube.  “I don’t want you to be stressed all the time trying to eat enough.  The placement of an NG tube isn’t that bad if you relax.  Once it is in you won’t have to stress about eating all the time.  You can eat as much as you want and whatever calories you are short, they will infuse into your stomach over night.”  She would have nothing of it so we figured out something fattening that would likely be tolerated to start building up her calories.  Cheesecake.  I hopped on to facebook and asked for everyone to pray that Ashtyn’s stomach would be able to handle 1800 calories.  She then began to eat her cheesecake with cherry sauce.  Ashtyn ended up eating the entire piece. After she was done with the cheesecake, she had an hour before her Dad brought a pinto bean burrito with rice, cheese, and sour cream from Cafe Rio.  I was amazed to see her eat ⅓ of it.  Those are big burritos!  Later for dinner she had 300 calories of Dibs ice cream bits.  My friend Rain brought her another Cafe Rio burrito for dinner.  (Apparently because I left her other burrito out in room temperature for more than an hour, I had to throw it away.  That’s good to know.)  Unfortunately after her Dibs, she wasn’t hungry for the burrito so I put it in the fridge for tomorrow.  For Ashtyn’s late night snack she had 3 popsicles mashed into a slushy.  (I took three red popsicles and separately put them in the microwave for 20 seconds.  I then mashed the wrappers a bit and poured the thick slush into a cup and threw away the sticks.)  That was a 210 calorie snack.  By the end of the day I estimated that Ashtyn consumed nearly 1500 calories.  Success!   Yesterday’s prayers were answered that gave her the desire to shower and eat.  Today, prayers were answered that calmed her stomach.

Yesterday I mentioned that right now is the time for Ashtyn to prepare for battle.  I sense that it’s my time to prepare as well.  I have come to rely on the support of Facebook messages, blog comments, texts, phone calls, visits, and the prayers of others.  I would panic if I didn’t feel rallied around.  I am strong for Ashtyn because everyone has been strong for me.  Today I had a couple moments where I got a glimpse of what it would feel like if I was doing this without Ashtyn’s Army.  The lonely feeling caused sudden panic.  I could not do this without the support I am getting.  I feel lifted by every single communication from each of you.

There is so much more I want to share with you.  I want to tell you about her inner strength that she is beginning to recognize.  I want to share with you the growth I have seen in her in only one week.  There are exciting coping skills she is learning.  I’ve noticed independence and emotional stability that I want to relay. There is clear proof that our prayers are being answered, but I am having such a difficult time writing, thinking, and feeling…. I’m tired.

I’ll end with this for now:

A few hours ago I asked, “Ashtyn, you had a good day today, right?”  She said matter of factually  “As good as it gets in the hospital.”  I started “lecturing” as I commonly do, “Well I want you to remember today.  Today was a really good day.  You will have lots of good days like these.  When you are having a really bad day, please remember today, and know that no matter what, you’ll have good days again.”

It doesn’t matter what religion you are.  A prayer is a prayer, and they are all being answered.