Archive | February, 2015

I love ya tomorrow

Kaitlyn, Jennaleigh and Gabi.  Kaitlyn is the 13 yo sweetheart battling cancer. Her pain was much better today :)

Kaitlyn, Jennaleigh and Gabi. Kaitlyn is the 13 yo sweetheart battling cancer. Her pain was much better today :)

I case you didn’t know…

GABI AND I ARE GOING HOME TOMORROW!!

 I am like a kid on Christmas Eve. I’m not going to be able to sleep tonight!

Our favorite OT, Megan

Our favorite OT, Megan

 

 

 

It was a much better day today and I apologize for my potty mouth in my last post. But sometimes, a girl’s just gotta get it out.

They did take the blended green beans off her menu, so small victories feel sooo good :)

She increased her calories taken orally to an average of about 750 a day so they took away more of her G-tube feeds.  She is down to only 2 small boluses a day! I am so excited and so proud of her!

There was supposed to be a family dinner night where Child Life orders in good food for the families here. We were all looking so forward to not having a eat another hospital tray.  But last minute, they canceled. Said it was some sort of date mix up. BOO!

Look at these sweet girls about to start "school"

Look at these sweet girls about to start “school”

But us resourceful moms just ordered pizza and took over the playroom instead. Got to talk to a group of such wonderful mothers and women.. We shared stories and dreams. I feel so honored to have met these families here. I wish you all could meet them and meet their amazing children!

I suppose these new friendships are God’s grace and I didn’t have to search for Him afterall.

I thank you all so very much for supporting us through this.  I can’t believe we did it. Going home and maintaining this routine will not be easy.  But at least we will be together and in the comfort of our own home.

The 2 princesses pretending to have a sleepover in the playroom.

The 2 princesses pretending to have a sleepover in the playroom.

14 hours and we will be discharged!!

SO much love,

Teri


And God is able to make all grace abound to you, so that having all sufficiency in all things at all times, you may abound in every good work.
2 Corinthians 9:8

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1. more. day

I am a woman at her breaking point.  I am tense, I am on the edge.

Thank you Auntie Lisa for Dora!

Thank you Auntie Lisa for Dora!

 

** WARNING** Potty mouth ahead.

With 2 days left, I am thrilled with Gabi’s progress.  We have learned so much and I feel like it’s going to be really hard on the outside but I am confident that she will continue to do well.

Because there are so many variables with feeding issues, I talked to our psychologist and got some clarification about how to tackle those variables. I wish she would have explained this to me from the beginning, but better late than never!

Our first goal is to wean from the g-tube so that means incresaing the volume of food she will take orally. Then we can slowly start to give her back control to feed herself. Then we will work on her chewing skills to get her back to eating whole foods.

So we go home with me spoon feeding Gabi and offering her controled measured drinks in a medicine cup.  It is timed for 25 minutes and I give her a bite, bite, then a drink. It is very controled.  All the food is blended up right now.  Ideally, this will be 4 times a day.  With school, I am not sure we can do 4 times.. it may be just 3 times a day. I have to measure and weigh the specific foods that we make for her and record every gram of food and drink and then send it to the dietician.  We will continue with outpatient therapy 2 times a week.

This is working but I am so done with the strict rules and hippa laws and ridiculous protocols that sometimes don’t even make logical sense, but the rules are followed anyway because “that’s just the way things are.”

Ms. S, one of our feeders, asked me if I was ok yesterday after her dinner hour. She said I seemed anxious.  I wanted to punch her in the face but also cry in her arms.  I told her I was having a hard time but I am ok.

But this is what I wanted to say:

“Of course I’m fucking anxious. I’m sitting in a 4×4 room with no windows spoon feeding my 5 ½ year old daughter that has half a heart and I have to say stupid shit like “take your bite” and “take your drink” with no emotion.  It’s not fair and I’m so fucking tired! And you’re all sitting outside this room taking notes on my parenting! I feel judged and I disagree with a lot of what is done here. But we have tried every other fuckiing option to get her to eat so I have no where else to turn! I’m stuck and I feel like you know that.  So you all have that power over me and I hate it. So, feel free to tell me that I seem anxious because I fucking am anxious and I am scared and I am tired and I didn’t choose this life and I don’t want to do it anymore.. but guess what?  I don’t have a choice!  So you go on home to your family tonight and I’ll see if I’m lucky enough that I can facetime with my family, get no sleep on the airmattress that lays on the nasty floor tile. Then I  will listen to my daughter breathing next to me, will praise God that she is still alive and then we can wake up and do this all again tomorrow with you fucking people!”

Ya, I would say I’m anxious.

Tonight they gave Gabi blended green beans to try. Blended up unsalted green beans.  She gagged. I tried again. She gagged.  I would gag too. She took the blended mac n cheese and her choc milk just fine.  So, I skipped the nasty green beans because that is disgusting. The feeder opened the door and said, you cannot skip foods.  I said, she doesn’t like them. It didn’t matter. I couldn’t skip foods.  Well, you know what?  I wouldn’t eat that shit either.  What 5 year old kid is going to eat that?  I skipped it anyway.  Please- kick me out of here! I’ve had it.

Max is sick at home and Ethan is being a kick ass husband and dad but he doesn’t feel like it.

I need a very large, ice cold, very alcoholic drink.

You know what the worst part is?  I read an email from our youth group leader ( who is great). Her email was a reminder for the kids to bring their bible and rosaries tonight.  I literally rolled my eyes and closed my computer.  A 13 year old girl here took a turn for the worse and is in terrible pain again from her cancer.  A paralyzed 2 year old girl here got emergency transported back to childrens because her cancer came back and it is more aggressive than they thought. She has a 25% chance of survival.  There is so much here. So much.

I can’t find God today. I shouldn’t be looking because he’s probably there waiting for me but I don’t even want Him to find me. I just want Him to leave me alone.

Science night in the playroom!

Science night in the playroom with our new dear friend :)

1. more. day.

Much love,
Teri

 

 

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Seriously I don’t know what day it is…

These last few days are sooo long. Soooo long.  The days are all running together and Gabi’s behavior is very predictable now. But we are almost there!!!

Four.
more.
Days!

As soon as the vital stim is placed on her throat first thing in the morning, she refuses everything.

Reunited and it feels so good

Reunited and it feels so good

She is scared of the wires and fights the entire time it is on. She won’t cooperate at all.

It is placed on by her SLP at 8 am and then is removed after her speech therapy session, which is usually about 10:30. It is on for an hour each day. During breakfast and during speech.

The good news is, I think I actually see some improvement in her ability to swallow.  We fill up a medicine cup with about 15 ml of thickened CIB(whole milk mixed with chocolate carnation instant breakfast and then thickened with SimplyThick) during her meals. It is like a milkshake consistency but doesn’t melt in your mouth. It stays thick. Last week, it would take her at least 8 sips to finish the cup but now she can finish it in 3 gulps.  So, each gulp is about 5 ml.  She can now drink up to about 6.5 ounces in one sitting!

They are not going to do another swallow study before we leave.  Her SLP wants to do another round of vital stim in outpatient then repeat the study. So it will be a few months with the thickened liquid for sure. Then we see if the vital stim improved her swallowing and stopped the aspirating. The hope is of course, that yes the vital stim worked and then we can try giving her thinner liquids.

IMG_7974This week is training me on their protocol so we can continue at home.  I am going to have be very structured with my time which I am not good at. It’s going to be a challenge for me.

 

 

 

I have lots of questions for them before we leave.

  1. What does this look like for school?
  2. When can she start feeding herself?
  3. What can I do at home to get her to strengthen her chewing?
  4. How will outpatient follow up fit into our schedule?
  5. Do I have to buy a rifkin chair for her to sit in?

Gabi is having fun with all the kids here but she is ready to go home. She is testing my patience in every way possible. The begging for presents, the whining, the complaining.  I am understanding and have loads of compassion for her but at the same time, I still have to hold my ground and be her parent. It is challenging when she fights the nurses when they need to check her vitals and every single transition is a drama scene.  I can feel the tension in my shoulders as I lay down on my super awesome and comfy air mattress.

 I am out of patience. I am done with the nurses checking to make sure she is pooping ok. I am done recording her urine output. I am done with tile floors. I am done with the gross coffee. I am done with the vinyl chairs. I am done with the TV’s that have 5 channels. I am beyond done being away from my family. And I am SO done with the nurses peeking into our room at night.  I asked them exactly what they are checking for and why it has to be every few hours.  To make sure we are breathing? To make sure we haven’t run away?  Believe me, I will let y’all know if we need anything.

Even though I rigged the door to be quiet when opening, the bright lights from the hallways still wake me up.

Our friends that went back to Houston.

Our friends that went back to Houston

new slippers from our beloved stephanie and new jammies from Ms. Suzanne

new slippers from our beloved stephanie and new jammies from Ms. Suzanne

The program has taught me a lot but in ways that I never saw coming. I have met friends here that I hope to stay in contact with forever. As some of our friends here have left, the kids have emotional moments saying good bye.

But I have to say I am proud of Ethan and myself. We advocated for Gabi but also respected their opinions because they are the professionals… even though some of their ways are stupid :)

God was with us all along here.

I have learned that this is going to be an ongoing battle for my dear Gabi.  My patience will continue to be tested but at least I know I am not alone.

Therapy dog night

Therapy dog night

Thanks for the love! 4 more days!!!!
Teri

Max and Ethan playing the courtyard

Max and Ethan playing the courtyard

 

 

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