Just like that

We’ve finished another year of teaching.   It’s amazing how long the days are and how fast the weeks go by.   Each year I think I cannot ever love a group of students as much as I’ve loved this one. No possible way.    Then I find that I can love  more.   I struggled so much this year with my own defeats that I wasn’t sure that I had made the relationships with my kiddos that I have in the past.   I was wrong.  It is a gift to have so many young adults care for you.    A true gift.  That’s part of what we cling to during the darker days of the school year.  

   I view the glory of the end of this year with tinted lenses. Several of the students that Libby went through school with have graduated from college. This really hit me yesterday, last day of school,  as I went to give Libby her 6am feeding and start getting her dressed.   Her feeding tube was out- again.   Last day of school when grades are due and mandatory check out procedures have to be completed.   That didn’t matter as much as desperately trying to coax the tube back into her belly to avoid the trip to the ER.  

    Called  our head  secretary Becky, who is amazing, and told her the funny news that we’re heading to the ER instead of school. Not funny, but you gotta laugh. 

 The attending doctor couldn’t get a feeding tube back in as the track was already closing up.  So off to radiology we go. Luckily Liberty feels pressure around her tube, but not pain. So grateful for that.  I had to look away several times as they had to stretch out the tract to get the new tube in.  Brutal.  

      I would give everything I have to take even a part of her conditions away.    If only it worked that way.   

      Don’t know how many more times I’ll be willing to put Liberty  through procedures like this.   The feeding tube is keeping her weight steady for the most part, but she still loses a little weight at every check in. It is necessary to help her get the additional nutrients she needs.  

     

Here’s the epiphany: while her peers are getting married, having babies, or graduating college Libby got a new feeding tube.  Could spend a lot of time being sad.   Instead, I have to acknowledge that and move on.   I have nothing but happiness and love for her peers.  Hope for where they are going and their our journeys. For us, this isn’t the life we dreamt of for her.  No parent would wish for this.  Not the life she asked for either. But it’s the life we have.   We are grateful for the days with her even the hard ones.   We are all changed by Liberty and her conditions.  All of us.  Our goals and priorities are different.   Everything is different. And that’s okay.   

   It’s okay. Sometimes it’s heartbreaking and sometimes it’s heart-taking, but this life remains beautiful.  And better than I could’ve imagined.  

The Escape of Tubi Wan

Let me tell you about a day we had this week.  This, like so much of our life, is not for the prude, nor the faint of heart...

Beautiful Thursday morning where I overslept and missed my early morning workout.   I was off campus in the afternoon for a meeting at Amarillo College and was able to pick Libby up little earlier than normal.  (I’m always excited if I can get her early.)

   At 4:40 we arrived  at the house and since it’s a Thursday I got her into the shower and prepared her for the poop assistance she gets on a very regulated schedule.  

  Bathing Libby sucks.  It just does. It has for years.  A good shower means that she will only cry a little and be mostly compliant- a conscientious objector limp limbs and all.  A bad shower means snot and drool induced wailing to the decibel that I am sure will one day get authorities called in.  This day she was medium level crying.  I’ll take that. 

  Showers are important not only to get her grownup smells taken care of, but also because  I need this time to get an overall inventory of her body and note the changes. 

  Usually I can get her showered, onto her potty chair, mostly dried off and at least a shirt on before the poop fest ensues.  This also gives me a chance to change the dressing and tape around her feeding tube.  I leave the tube covered and taped while showering. This was not usual. 

  As I started changing the dressing I noticed  a lot of extra ooziness.  A lot.  Then I realized that there was a lump under her tape.  It was the balloon that’s supposed to keep the dang tube inside of her precious belly.   

  Her tube was out- AGAIN. I don’t know if taking the tape off hurt more or she felt her belly, but now she is ugly crying, and it is a blood and belly ooze palooza.  

   She doesn’t stay safely on her potty chair by herself for very long. I tried to cover the belly hole a little and put a  gait belt on her.  Then I ran into the kitchen and got out the emergency “tool” box.   Grabbed extra gauze, peroxide since there wasn’t any rubbing alcohol, and a straight pin.   I washed off the tube and pin with hot water, peroxide and lots more water.   

   I ran back into the bathroom where she has continued her show stopping aria- rightly so.  The ooze palooza had abated a bit and I get the belly hole cleaned up a bit.    Then I squish the feeding tube’s balloon, pop it with the pin, squish it some more and try to guide the tube back into its tunnel into my kid’s stomach.   (I didn’t have the right syringe to deflate the tube’s balloon.) 

   It took several tries,  and Libby was not best pleased.  I used my left arm to hold her left arm and torso back while I eventually got the feeding tube back.   It- went- back- in.  Pulled a bra on her, a shirt and grabbed a feeding syringe to see if we are in luck.   Amazingly, her tube flushed perfectly.  No extra fluids squirted out, and the tube stayed in!   I taped the bejesus out that tube entry point and tried to get pre-scheduled poop out of the way.   Seriously laughed out loud.   After the pooping she calmed down. 

  Right at 5:00  I had started making the necessary phone calls to her primary care doctor, then her surgeon and then the appropriate ER.  Primary care doctor said to take her in after calling the surgeon.  

   I fed her the solid food dinner that we put into the oven when we got home between getting her fully dressed, packing up pills, my school bag, change of clothes for her and her feed supplies. We were loaded into the van.  Then Grandma Linda and Jennifer showed up.   Jennifer was bringing the kids to Happy for the the weekend and Linda was coming over to help out for the evening.    I tried to explain what was happening and we hit the highway.  We were fifteen minutes north of Happy when the surgeon called back.  

  He was happy that I got the tube back in and that it flushed successfully.  As long as it works and there are no issues we didn’t have to go to the ER.  Awesome.    We turned around and headed home.    

  We were home by 5:30, and  I had a little cleaning to get done.  Rachael swims on Thursday evening and gets home around 7:00.  I’m glad she missed the palooza part of our afternoon.  I filled her in while she was on her way home.   

   I’m grateful the tube went back in and has been behaving thus far.   We are two days away from this spectacular happening, and it still cracks me up.  

   The moral for me is to not over sleep.   But seriously, Libby’s belly could have its own sitcom.  

Libby is still dropping weight, but not as fast.   She’s getting around 1000 calories a day just through her tube.  We try to get her to eat as much real food as possible.  So the tube saga continues on.   She needs the nutrition and fluids the tube gives her.   I will need to make a surgical appointment at some point to get a new tube in.   I hope we can wait awhile and let her belly hole get over it’s recent aggravation.  We got lucky this time.  Nah, we’re continually blessed.  

Love to all.  

That Feeding Tube Life

 Greetings from the between land of the holiday break after the holidays have passed.  This grey area is where the greatest of naps and movie binges flourish.  Our plans of eating, napping, painting, reading and working out were decimated when we discovered that Liberty had pulled her tube out sometime in the previous four hours.  She pulled it out.  Out. Leaving an opening straight into her stomach.  

We made it just shy of six weeks with the original tube. 

   First, know that I am not squeamish, but the sight of her feeding tube hole without the tube was unsettling- to say the least.  

   Second, didn’t really know who to call first. 

   Third, my need to cry and gag simultaneously was only overpowered by the sheer will to not puke on my kid. 

    Fourth,  trying to follow the surgeon’s advice and insert a straw into the hole to keep it open was not successful.  It just wasn’t.  Will be getting some smaller straws to keep just in case.  

    Fifth, realizing that there may not be enough tape on earth for me to feel confident that the F-ing tube stays in place is real.

     I had decided  to keep track of the many places I would be feeding Libby by taking a picture of each location.  My belief that this tube would not hinder our many activities remains solid; I’ll be much more aware of the downside of feeding tube life.   There are so many more things we want to do and continue to be a part of .  

     Here are some of the pics I’ve captured in the last six weeks.  

Restroom at Street Toyota whole the van was getting serviced. 

Pain doc repeat

Feeding after a swim. 

...Snack Shak

...Ronald McDonald house

...in the van.

...High Plains Food Bank

And in my classroom.  

We’re currently discussing names for this wonderful tube that has so much power over our lives.   Some of the current faves are:

Tubi Wan Kinobi

Freddie Tubar

F-ing Tube

Feel free to add your own ideas.  

 Now we’re going back to the land of grey bliss to breathe and cherish these last few days. Thank you all for your prayers and laughter as we traverse this tubular life. 

Complicated: We are all weird cases here

We are all weird cases...

We’ve now had two failed attempts to get a feeding tube placed in Libby.   Each attempt is more invasive and hopes get higher. 

The first doctor  said her bowels were up high.  The second said that her stomach is up very high in her chest cavity, and so he could not proceed safely.  Wait.  What?  I couldn’t listen to anything else- just need my kid to be able to get more nutrients into her body.  Such a heart wrenching fiasco. At that moment the why wasn’t as important as when we can try again. 

Next is a true surgery.  Full anesthesia.  We asked for the full surgical process for the feeding tube in the beginning.  She’s terrible to get an iv into- tiny squirrelly veins.  She doesn’t relax enough to be laid totally flat unless she is under anesthesia.  Fully knocking her out is the way to go, but protocol  states that we go from least invasive forward. 

Of course, I always want to be cautious where her health is concerned, but I have a sense of urgency here.  

While we wait I’m trying to not lose patience.   Coming from the land of pediatric hospitals where we are all weird cases to learn that Liberty is “complicated.”  They said complicated.  

Yes. She is.  She is strong. A joy. A fighter. A hope, and some days a pain.  But she’s also still alive because specialists in the pediatric realm listened to our worries, ideas and, dare I say, our gut.    

So here we are holding in a pattern until we meet this surgeon next week.  Meanwhile, she’s losing more weight and eating less at every meal.  

I know she will be okay until we can get some nutrients into her through the tube.   We fought the idea of this procedure for so long that since we made the decision to get it I’ve become more and more impatient.   Every bite, every meal is a fight.   Her favorite foods.  Her favorite drinks.  Doesn’t matter. It’s a battle.  It’s not supposed to be this way.  

Truthfully, the combination of the Parkinson’s and dystonia will only progress making her less able to chew and swallow food.   These same conditions cause her to be so very spastic that she burns thousands of calories a day.  That my beloved friends is a bad recipe. 

I know there is so much that is out of my control.  I can’t stop her stiffness.  Her loss of motor control.  Her loss of speech. Can’t stop so many things, but have been able to make sure that she gets food she loves.   Now we’ve lost that.  The feeding tube will allow us to get the nutrients into her body and then supplement with whatever favorites she can get down.   

So, she’s complicated.   And a miracle.  We’ve come this far on our bonus time, and I will continue to refuse to lose her this way.  Not this way.  

As we approach Thanksgiving I pray we get the tube by the first week of December.    It will just happen or another solution we present itself.   I will not be without hope. I refuse to give up. It will happen. 

In shared determination we send out love and hope, 

Ileana 

Feed

We have made it through another busy and somewhat hectic October. I love fall and the changes it brings all around me, but the grueling pace we set at the beginning of a school year often becomes a prize fight during this month.  The sheer amount of wonderful opportunities we’ve had to be with loved ones, work towards our goals,  serve our community, and kick the booty of our never ending to-do lists is astounding.   And we did it. November welcomed us in a surprising way. 

For the last year Liberty has been steadily losing weight. We have altered her diet, moved to soft foods, increased the thickness and calories of her liquids, and chosen to pulverize every meal she gets.  The amount of calories we can get into her body is not enough.   Her spasticity and the dystonia storms cause her to burn through whatever calories we can get in.  

This  battle is waged against a jaw and throat that has been attacked by Parkinson’s.   I call it her Parkinson’s swallow; doctors call it dysphagia.  Libby can’t tell how much she’s chewed what’s been placed in her mouth.  She will chew air like a boss, and then swallow another piece with any chewing- luckily her food is all mush.  Each meal wears her out.  Then add to that her lack of desire to eat at all and you get a battle for every meal.  Every single meal is a fight.  It’s ugly. I’m not the mom I’m supposed to be during meals.    

Several of our docs have brought up the feeding tube over the past years, and I’ve discounted getting this invasive procedure as she was still eating.  Since August Libby is down around 15 pounds.   15 pounds that she didn’t have to lose.  She’s under 100.  To me, this is emergency level.   

I got her an appointment with the local doc, told him what we believe she needs and he did order the swallow study That was completed two weeks ago. Since then we’ve played some Olympic level phone tag with several doctors and got to meet a pain management doctor who is lovely. 

Thursday I received a confirmation call for Libby to have the gastric tube placed Friday, 11/2, at 6am.  We were there. Did all the stuff.  They took her back. Less than an hour later a new doc came back with mixed news.  

Libby’s bowels were inflamed and her liver was in the way.  Partially because of her somewhat contorted body due to dystonia.  Her back is shifted so then is her torso. The doctor suggested that we reschedule and do the same placement procedure with a CAT scan for guidance.  That means we lost a day as did our family members who were there on such short notice.   I would rather be safe, but was still saddened by the loss of opportunity to get the nutrients into her body.   I’m telling myself that this was a training run.  Just a little practice.  

So, we’ll schedule again.    Praying it will be soon.   

The irony here is that we feed people.  Lots of people.   It’s natural for me.  There’s a reason that I serve through Snack Shak, High Plains Food Bank, Snack Pak and Key Club’s efforts to honor the campus; I believe in the beauty that happens when food is shared.   Yes, while I’m feeding so many others, my Liberty is diminishing everyday.   It’s a sad irony.     Praying we can get into an operating space soon.   

Much love to all.

Ileana 

Winning at the Mom Game

1. Kid is dressed mostly appropriately.

2. Clothes are mostly clean.

3. Parent is also dressed mostly appropriately.  

4. Clothes are mostly clean. 

5. Kid is fed.

6. Stuff needed for outing is attached to kid or loaded into vehicle. 

7. Kid and parent left house at a mostly appropriate time.  

8. Stuff in house is rigged so that a little less chaos occurs upon re-entering.  

9. Food, meds, homework, projects of dire importance are competed and changes of clothing are loaded; signed folders, papers, affidavits are packed and ready for launch. 

High Fives and Hugs

    Recently we spent a chilly Saturday morning serving at our local Buddy Walk, which benefits people with and supporters of people with Down’s Syndrome.  This is one of my favorite groups to work for and support because there is palpable joy within their community.  

     There are games, bouncie houses, face painting, dancing, and local businesses there to bring a smile, advocate and share. 

     For the last few years the volunteers have lined up along the walk route to cheer and high five the families as they complete the walk.  There were at least a hundred volunteers lining up to chant, cheer, high five, and hug the families and participants.  

       This is the best part.  The most important part to me.   For me.   Every year it is the family and supporters of the wonderful people with Down’s Syndrome that I am captivated by.  

         This year I saw more new moms than ever in the family line up. Maybe I just haven’t noticed before.   There were several families with babies who have Down’s that passed amidst our cheers, and I noticed one mom crying as she passed.   Then another.   By the time the third family passed with a little blessing triumphant in the stroller I was bawling.   (I don’t cry very well.  I know it’s an issue- a dam that needs to hold.). 

      Ugly crying. I excused myself for a bit to get myself together.   I realized I needed to cry with them.   They have a beautiful and hard life ahead, and I somewhat understand the overwhelming fear.  Understand the joy.  Understand the desperation and need for answers to questions they don’t even know to ask yet.  

       I believe that at some point every parent needs to feel a community cheering them on, ripe with high fives, smiles, and hugs.   Many of us get overwhelmed and fearful.   More so those with children with needs beyond the normal.  

        In these beautiful moments, I realized that what so many of us need is some cheering on. Don’t be afraid to tell a parent, family member, caretaker, etc that they are doing amazing things.  Tell them that every minute of every day may feel like a test, or the final leg of a gauntlet, yet they’re getting through.  They’re doing it.  Tell them.   Cheer them on.    Don’t be stingy with the high fives and hugs. 

         We all need them.