Sunday, November 27, 2016

Surgery Update

Surgery is in a little more than a week!  Finally! Earlier this month, I had a consult with both the nurse and Dr. B from Interventional Radiology [IR].  It all went well and several of my questions were answered.  The biggest one involving the "state of her colon" where if her colon is not in the right state, the surgery is postponed or even canceled.  The doctor does want her completely cleared out.  As in no stool in the gut.  However, there can still be liquid in the colon and this is dangerous.  Air is pumped into the cecum (upper colon) during the procedure and if there is fluid, perforation of the gut is likely.  So it is important for the colon to "dry out".  Upon clearing out the colon, Ellie can only be on a clear liquid diet until after the surgery.  This is to prevent the formation of stool which would defeat the purpose of the bowel prep.  Fortunately, from past experience, I know that we can get Ellie cleaned out.  I am not looking forward to the clear diet part.  How to you reason with a developmentally delayed child that she can only have water, juice, broth, and jello?

Of course things couldn't be easy scheduling-wise.  After all, nothing has been easy about this journey so far.  A journey that started nearly 6 months ago.  Gastroenterology is in charge of the bowel prep.  Interventional Radiology is in charge of the cecostomy procedure.  GI wants to admit her on Friday for an overnight hospital stay to administer a gallon (at least) of GoLytely through an NG tube (a tube that goes from the nose to the stomach).  Surgery would commence on Monday.  However, the GI doc is out of town on Friday.  We didn't know this until after the office visit was scheduled.  It does look like we can have the visit on Thursday afternoon and still be able to admit her on Friday as planned.

Surgery is/was scheduled for Monday 12/5.  I get a call earlier this week.  Dr B is not going to be in on Monday.  Surgery is moved to Tuesday 12/6.  To say that I am annoyed is an understatement.  I know that pushing it back one day doesn't seem like a huge inconvenience, but that is one more day that we have to starve Ellie.  No food from Friday - Tuesday post-surgery. We are starving a child who has failure to thrive.  Where each pound gained has been an ongoing battle and now we deprive her of food for over 4 days! I am trying to negotiate with IR and GI, but with the Thanksgiving Holiday I am still waiting.  My hope is that they will let her eat Friday.   Or that the GoLytely will make her feel full on Friday and Saturday.

Eight to 10 days later Ellie will have a post-op appointment with GI.  After this visit, we should be able to start the antegrade enemas.  Basically, we administer a ridiculous amount of either water, salt water, or ducolax crushed into water through the cecostomy tube.  This allows us to clear out Ellie's colon from the top rather than going rectally.  Six to 8 weeks post-op, Ellie goes into day surgery for the placement of a permanent catheter called Chiat Trapdoor.  After that, we should be good for 11 months which is when the catheter will need to be replaced.

I am nervous.  Nervous about her pulling it out.  This must be a common thing because at the consult, the first thing the IR nurse talked about is what to do if the catheter is pulled out (you insert a feeding tube into the stoma and then call IR for tube replacement the next day).  I am nervous about the dressing changes.  She is going to be so sore and I know she won't want us fiddling with it.  My thought is that it will take both Andrew and me to perform the dressing change.  Drew can hold her down because he might gag when he sees the cecostomy.

I am hoping that the next time I update y'all Ellie would have had her surgery.  Please pray or send positive vibes that her surgery does not get delayed. . . again.  That her bowel prep goes okay and her colon is in the "right state" so that surgery can proceed as planned.

 photo IMG_2291_zpsudykfi0h.jpg

Follow us on Facebook!

Monday, November 7, 2016

Communication or Lack There Of

Will she ever have a conversation with me?  Will she be able to order off a menu at a restaurant?  Will she ever be able to tell me about her day?

These are the questions that circulate through my head on a regular basis.  A few days ago, I came across this blog post: loving a child who cannot speak and I really identified with it. You see, Ellie is predominantly nonverbal.  She has a handful of words that for the most part, only I understand and even then, it must be paired with a sign.  So I suppose you can say that I don’t understand her verbally, but I sometimes understand her signs.

Will she be able to tell me who her best friend is?  Will she be able to tell me if she is being teased, bullied?  Will she be able to contact someone in case of an emergency?

Ellie communicates via sign language and vocalizations.  Her signs are rudimentary meaning they are gross approximations of actual signs from American Sign Language.  In fact, some of them look nothing like the ASL sign at all.  She also makes up signs.  This leads to great frustration - both for Ellie and myself.  What does she want?  What does that sign mean?  She attempts to vocalize if she knows the sign.  If she doesn’t have a sign, there is no vocalization.

Baby, ball, mama (the most important word!), dada, horse, bus, cracker, bye bye - these are the words that she can say clearly.  The words that are understandable to most strangers.  Words that I am so proud she can verbalize.  Yet, these words will only get her so far in home.  With friends.  In the classroom.  In the world.  I worry.

Will she ever be able to say her own name?  Her address?  Phone number?  What if she gets lost?

It is my hope that with enough speech therapy, she will be able to communicate beyond one word sentences. That she will be able to be heard. Understood.  That she can communicate her personal needs and wants.  Yet sometimes, I find myself in despair.  Lowering my expectations, which is something that I am ashamed of.  Shoot for the stars.  She will surprise us. She will speak. Yet, I doubt and I don’t want to.  It isn’t fair to Ellie. I want to have those high expectations.  I don’t want to limit her.

Vantage Lite.  LAMP.  Proloquo.

The above are communication programs and apps.  Speech augmentative communication devices such as an iPad or a device specific for the production of speech can greatly help a person “speak”.  Communicate.  It has been recommended by Ellie’s teacher and speech therapists that she get a communication device.  The thought is that working on speech, using sign language, and augmenting with a communication device will help Ellie develop speech.  A total communication triad.  I am hopeful because even if she remains nonverbal, she will be able to converse, order food off a menu, state her name and contact information through this device.  The communication device will give her a voice.

Right now we are waiting.  We have applied to various places to get either the Vantage Lite device or an iPad with the LAMP app.  Of course, I hate waiting.  I want the device now!  I am ready for her to have a voice and I imagine Ellie is ready too.  It is time for me to erase those low expectations.  To raise them up.  For Ellie can and will do great things.

 photo IMG_2291_zpsudykfi0h.jpg

Follow us on Facebook!

A mask for kids with Down syndrome

Do you hear crickets?  Yes, we are here!  We are alive!  We are safe and healthy!  We haven't been inside a restaurant or store since m...