Holland...

So this post was SUPPOSED to be all about how good Lily was doing after a tough week. But as is always the case THINGS CHANGE QUICKLY. I had planned on a bunch of pictures and video of Lily smiling, and playing with her toys. But we are back in the hospital so this will be about the past week and how we got here yet again.

Last Thursday Lily had another procedure under anesthesia. She had an EGD, a sigmoidoscopy, and they had to remove her excess granulation tissue from her stoma. The EGD, and sigmoidoscopy are just probes with cameras that go down her throat into her stomach(EGD) and the other goes up her bum looking at the intestines (sigmoidoscopy). They took biopsies and pictures. It was her second time doing these tests. They had thought she had an ulcer inside her stomach but it turned out to be a HUGE amount of Granulation tissue. Granulation tissue (GT) is tissue that grows like a bubble out around the stoma. The stoma is the hole in her tummy that the g tube fits in. GT is painful and red and grows very quickly and bleeds easily. In most kids getting an infection in the stoma or in the GT is extremely rare but in Lily's case its kinda unavoidable...

Anyways, they burnt off the GT and the scopes went well, no complications...yet... Lily has a history of having delayed bad reactions to anesthesia. This time she woke up was fine for an hour then vomited everywhere. They assumed it was just the normal queasiness associated with anesthesia so they gave her zofran and sent us home. Over the next three days she kept NOTHING down. Friday night I was able to get her to tolerate pedialite at the lowest rate possible 1oz an hour continuously for 24 hours. It kept her hydrated so we didn't have to go to the hospital for an iv.

On Saturday She fainted twice. We are pretty sure it was just lack of calories. She had super loose stools. By Sunday she was keeping food down and the diarrhea had stopped. Monday she was playing and Tuesday her color was back. I thought we were free and clear... Hah... I should know better by now.
Wed morning the skin around her g tube was streaked angry red and was hot to the touch, her fever was back. Which meant her infection was back. Then she started vomiting again and had the worst diarrhea I have ever seen. She went through 8 outfits in 2 hours. But with the severe diarrhea the redness went down. It was like the infection ran right out of her. After that I stopped putting clothes back on her... The doctor was able to call in an admission for her so we could avoid the ER. So thats where we are.
Honestly the thought of coming here today was torture. I cried the whole way here. I hated the thought of being stuck in the little room and putting Lily through more pricks and prods.
The brightly colored walls close in so quickly. But we arrived and they sent us to our room and the simple acceptace of my situation settled in. I am not extatic to be here, Not even close. But I am accepting of where Life has landed us. A few different times I have come across a poem that describes exactly how I feel most days. Especially today...
Welcome To Holland
by
Emily Perl Kingsley


I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel.  It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy.  You buy a bunch of guide books and make your wonderful plans. The Coliseum.  The Michelangelo David.  The gondolas in Venice.  You may learn some handy phrases in Italian.  It's all very exciting.

After months of eager anticipation, the day finally arrives.  You pack your bags and off you go.  Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy!  I'm supposed to be in Italy.  All my life I've dreamed of going to Italy."

But there's been a change in the flight plan.  They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease.  It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language.  And you will meet a whole new group of people you would never have met.

It’s just a different place.  It's slower-paced than Italy, less flashy than Italy.  But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips.  Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there.  And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever  go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.