Tuesday, September 14, 2010

He Did It Again!

that's right, the littlest cowboy has done it again!  Wyatt has made a full recovery from our latest trip to the icu. his diagnosis was severe GERD.  the solution was to change his G tube into a G-J tube.  and he hasn't vomited once since Saturday Sept 4th!  we are holding our breath, as we always do, hoping that this streak of good health holds out for a longer stretch.  the J tube requires a different feeding schedule, he is on a pump for 20 out of 24 hours a day now.  honestly, i find it easier than planning around the 6 daily feedings that we were doing with his G-tube.  we are able to be a bit more spontaneous, meeting dad at the park on the way home from work, taking a trip to the local farmer's market and going for walks.
there is always a sense of mourning when we take another step away from what is "normal".  in the beginning i was very resistant to most permanent medical interventions, such as the g-tube, the j-tube and the fundoplication.  but knowing that Wyatt is more comfortable afterwards makes all the difference.
thank you to everyone out there who sent text messages, emails, phone calls and comments on the blog.   we appreciate all of the support!  and now that i'm not mopping vomit off of every surface in our house, maybe i'll have some time to post some pictures on this darn blog!

Monday, September 6, 2010

A Message of Thanks (from the inside)

it's no secret that i go to see a therapist a couple times a month.  being a therapist, it was hard to deny that my (our) situation would certainly benefit from a trained third party's experienced views.  and she has been amazing. and it has definitely helped me through some rough spots.  one topic that comes up from time to time is support.  support from friends, family, how ben and i support each other. i'm sure it's no surprise (especially to anyone who has experienced a tragedy, or something comparable) that when a challenging event is presented, many times those close to you go running for the hills.  and when my therapist asks how we are doing on the support side of things i have a lot to tell her.

and its the truth, ben and i have experienced something much different than what we've heard is typical.  we have marveled at the amount of support that we are offered by those close to us.  and we couldn't be more thankful. so this post is to say a quick word of thanks to everyone whom we hold dear.  and there are a lot of you.

Wyatt's grandparent's, far and near, are loving, accepting and sometimes even smothering.  in a good way.  they dote on him, spoil him and think everything he does is amazing.  just as grandparents should :).  Wyatt's aunts and uncles do many of the same things.  stopping by the house for an hour or two to play with him while we run an errand. they are known to outfit him in some pretty cool gear and let him stay up way later than he's allowed when mom and dad are home.  our friends are amazing too.  we are touched by offers to come learn Wyatt's needs, to sit with him, to be involved.

we love you all for it.  we love that you read about his diagnosis, that you ask questions, that you talk to us about how hard it is.  and we love that you bring your kids to play at our house, that you buy him carefully thought out gifts that he can enjoy.  we love that you send emails of support, that you don't hide from our difficulties and that you share yours.  we love you all for it.

and a surprising, but no less touching, gesture, the one that really got me thinking about how wonderful everyone is, was coming home from the hospital for a quick shower yesterday to hear the sounds of yard work being done.  no biggie, we live in the city and sometimes when the neighbor is string trimming (fancy word for weed whacking) in his yard it sounds like its in our yard.  but, wait, it IS in our yard.  i walked out the front door to find our 60+ year old neighbors cutting our grass and even sweeping our sidewalk.  'we know you have your hands full' they say.  i wanted to cry.  they didn't know we were at the hospital.  they thought we went away for the weekend.  and they still decided to help.

so when the therapist asks if i have enough support.  yes.  i think i do.

Saturday, September 4, 2010

Life on the Inside

here we are, again.  back at children's for the foreseeable future.  wyatt's vomiting and respiratory problems became unbearable for him (and us) through the night last night and so we packed up and have parked ourselves in the PICU.  i am already sick of the PICU.  don't get me wrong, the staff, docs, nurses, therapists, social workers, everyone, is fantastic.  but i am tired.  and so is ben.  and so is our sweet little cowboy.

his battle with the vomit has become increasingly challenging over the summer.  he had a fundoplication done (to stop the vomit) in April and is worked for hmmmm, about 2 months.  then back at it.  he had adenoids out a month ago, in hopes of decreasing airway obstruction and guess what?  he snores worse than ever.  hmph.

so we had planned for a voluntary admission on Sept. 8th to get these issues sorted out.  all the tests condensed into a 3 day hospital stay.  but we didn't make it.  and here we are.  saturday of a holiday weekend and you know what that means.  no one is here to do the tests.  double hmph.

please send a large helping of love and healing thoughts to little wyatt.  he is struggling, but still his smiling self.