Lyla's Home

Lyla was discharged yesterday :)) It was hard saying good bye to our new friends and Lyla's Speech and Occupatinal therapist.  our first day home was a little hectic. We arrived to our horrible goats that  I do not like. They are always causing trouble... Anyways we get home an the billy goat won't even let us get in the front door, he was chasing us off, standing on his hin legs trying to ram us. After he chased Amber and I back into the truck, he stepped far enough away for amber to grab the broom and  me grab a fishing pole to protect ourselves as we unload the car and Lyla. We had to chase him off several times and he chased us several times. But  we successfully got everything in the house without getting rammed. I was sitting on our couch for a spit second, just enjoying being home, when I happened to look out the window an notice one of my brand new Toms that I had ordered (but yet to see) silting in the middle of the yard. I ran out there to fit both shoes and the toms bag scattered across the yard, I had looked like they had been out there for days, Rained on, muddy, an faded. Guess how it happened... THE GOATS!!!! And I knew right away, because Trevor had called me a couple of weeks ago and said he had came home to the goats eating one of our other delivery boxes. I was livid! When Trevor got home the first thing he did was put the goats on the back side of the propery, which is fine with me, that had done their job... The yard was mowed!

Before we left we were able to wean 2 more hours off of Lyla's TPN, so now she gets it for only 8 hours (beat shes ever done) We were sent home with Lyla's first couple of meals, so I didn't have to rush making her something, I just feed her as soon as we got home, and she did excellent. Then after her nap we went grocery shopping. We got everything we need for her meals, including her favorite Elmo DVD: The Beat Of Elmo 2. It's a great reinforcement. I've had to divide Lyla's toys and will rotate them every month or so her feeding toys are not avalible all day long, and so she doesn't get bored. We are sticking with the protocol and so far so good, a couple of meals she was testing me, but not for long, an dinner was almost a perfect meal with only one refusal after I told her to take her bite, but the refusal was only for a minute or so. I am so proud of her :D

I had a lot of phone calls to make today, had to make 4 doctor appointments for Lyla, resume MDCP & CDS... Ugh I just remembered I forgot to call someone... Anyways, and had to call Cook Childrens Home Health, & Uromed Home Health called me. Lyla is getting her vaccines and flu shot tomorrow.
She doesn't see her surgeon until mid Dec. and her GI after Christmas, so I guess they aren't I. A big hurry to reconnect, which is a good thing, I would hate to of gone through this feeding program only for lyla to have surgery and be NPO ( not eating) a couple of weeks later, plus the holidays. I thinking surgery will be January. Which is still scary having lyla be NPO, 24 hour TPN after her getting this far. But it's what has to happen. And if for some reason Lyla needs feeding therapy after her recovery, I know who to call!

Here's a look into our typical day, so blessed to have Amber 5 hours a day!

300a- untangle lyla. add formula to pump. Empty Ostomy.

600a- Unhook TPN & Lipids, Ethanol lock.

730a-  Turn off tube feeds.Empty ostomy.  get ready for the day. 

800a- nursing visit/weight, Labs, cap change 

830a- lylas structured breakfast

900a- Meds:Prevacid 7.5mg, Iron 1.0ml, Erythromycin 1.5ml

915a- add formula to pump, turn tube feeds on, rate 20ml, volume 23ml. 

1000a- empty Ostomy

1030a- turn tube feeds off. Occupational Therapy

( Ot comes on Thursdays, other days I will work with her)

1100a-Speech Therapy (SP come every Tues & Tursday) on other days I work on speech with her.

1130a- structured lunch 

1200p- empty Ostomy. nap

1215p- add formula to pump, turn tube feeds on, rate 20ml volume 23ml

1230p- mix & prime TPN & Lipids

100p- meds:Iron 1.0ml, erythromycin 1.5ml

130p- turn tube feed off

200p- wake up from nap, empty Ostomy

230p- structured snack

315p- add formula to pump, turn tube feed on,  rate 20ml volume 23ml. 

430p- turn tube feed off

500p-med: erythromycin 1.5ml.  empty Ostomy bag.

530p- structured dinner

600p- withdraw ethanol lock, flush heprin lock, play with daddy

615p- add formula, turn tube feeds on, rate 20ml volume 269ml. 

730p- empty ostomy. lylas bedtime

800p- Prepare next day meals & formula

900p- meds:Prevacid 7.5mg, Iron 1.0ml, erythromycin 1.5ml

1000p- start TPN & Lipids. Empty Ostomy. Add formula. I go to bed.

Along with weekly Nursing visits for Lab draws & Weight, weekly/or as needed central line dressing change, Ostomy bag changes as needed, baths, doctor appointments, Supply deliveries... Throw in all the laundry,  cleaning, finding time for myself to eat, shower, make phone calls, and all the other mommy stuff!  not sure when I will have time for Lyla-Byes Boutique!!!