The following is a snapshot of what goes into keeping KayTar running on a daily basis when she is healthy and functioning at her BEST*.
5am: I wake up and mix her Nexium (and sometimes Culturelle), 1 packet of medicine and 15ml of water, rinse 2 syringes (It takes 2 to give the meds and 1 to flush the tube, but Josh leaves one rinsed and ready for me) and give it to her in her sleep.
5:45am: I wake up again (on the days I can actually fall back asleep), mix her Miralax and cornstarch with water, pour 8 ounces of Elecare Jr.** from the mixed jug in the fridge into a baby bottle for measuring purposes and add it to her feeding bag, along with the cornstarch/Miralax mixture. I attach the extension tubing to the feeding bag and prime the line. I rinse another syringe and draw up 7ml of Augmentin. I go upstairs, give her Augmentin, plug her into her feed bag, and start the pump.
7am: Josh dresses KayTar in her sleep. She is NOT a morning person. I refill her feeding bag with 8 more ounces of Elecare and then reverse prime the line so all the formula goes back into the bag before priming it regularly to remove all the air from the bag so it can be packed into her feeding backpack for school. Josh makes her lunch (which she often does not eat, but we always pack just in case). Yesterday her lunch was water, pepperoni, Lay's Classic chips, and a slice of crustless Parmesan cheese bread. It always consists of some variety of water, meat, chips, and an additional carb. Depending on the day, she receives 7ml of Claritin (or 10ml of Benadryl if she is very congested), 2 puffs of Advair, and/or 2-4 puffs of Albuterol.
7:45am She brings her feeding set to the nurse to be stored in the fridge until it is time for her feed. On Mondays, I bring her Augmentin into the nurse's office to be stored in the fridge for the week.
11:30am At school, she has her glucose checked daily before her feed. The nurse gives her 7ml of Augmentin and starts her tube feeding, which she wears to lunch in the cafeteria.
(12:30pm Fridays only: I pick KayTar up from school, drive her to occupational therapy. I drop her back off at about 2:15pm and pick up her Augmentin and feeding set from the nurse, run it back home to the fridge before running back to the school to pick up the kids.)
3:30pm After school, I add 8 more ounces to her feeding bag and rinse another syringe, draw up/give her another 7ml of Augmentin and start her feed. If she wants it in her backpack, I have to get the air out of the bag and re-prime it. She usually has a snack, generally a few chips while doing homework. After homework, we haul her and her IV pole downstairs. I hate moving the IV pole back and forth and I almost always have a bruise or two on my legs from accidentally smacking myself with the base.
5-8pm At some point in this timeframe, KayTar either successfully goes #2 in the potty or I discovered she has had an accident. The odds here are roughly 2/5. Either way, I'm cleaning a tushie. ;) Also, she usually has a little "dinner" in this window, typically 1-2 still-frozen chicken nuggets. Some nights she doesn't eat anything, of course.
7pm 10ml of Benadryl for congestion (almost every night). 2 puffs of Advair.
7:30pm Rinse another syringe and give 7ml of Augmentin, bring IV pole back upstairs, and give another 8 ounces of formula plus 3 teaspoons of Miralax. KayTar goes to sleep during this feed.
8:30pm Josh unhooks her from her feed and turns the pump off. He disconnects and rinses the extension tubing for the next day.
9:30pm Josh mixes/gives KayTar a dose of Nexium (and sometimes Culturelle) in her sleep. I rinse her formula jug that has been filled with/soaking in soapy water and mix her formula for the next day. 27.5 ounces of water and 22 scoops of powder. Shake well! I collect the syringes and fill a cup with hot soap water and draw it into each of them to let them soak overnight. We get 8 per month and use more than that daily! I fill the jug her formula was in that day with hot soapy water and shake it up, let that sit overnight, too, along with any bottles I used for measuring.
10pm Josh sets out the things I will need for the next morning. A cup with 15ml of water for her Nexium, a cup with 1 tablespoon of cornstarch and 3 teaspoons of Miralax, a clean syringe, and a escargot fork for mixing/stirring water into the Miralax/cornstarch mixture (seriously, they work the best!), a clean baby bottle for measuring, and a feeding bag.
*When KayTar is not at her best, there are a LOT of extra steps to this process...this is an example of the simplest life ever is with her at this point in time, the bare-boned skeleton of life with KayTar. Earlier this week, we were doing five tube feedings a day and not too long before that we were doing EIGHT tube feedings a day. That schedule really consumed the day, even when she was healthy. Adding in some of the illness related work, Benadryl every 4 hours, cough meds, fever meds, Zofran, nebulizer treatments of Albuterol and Pulmicort, multiple glucose checks and urine ketone checks...just to name a few of the possible additional steps. Yeah, it gets a little busy at times. ;)
**KayTar started a trial of Elecare Jr. on Sunday. It is an elemental formula, meaning that it is already broken down (like the proteins are already in amino acid form) so her body does not have as much processing to do. The hope is that it will be easier for her struggling gut to digest and will relieve some of her gastroparesis symptoms. So far, so good!! She has been back on 8 ounce feeds since Thursday and hasn't felt "too full" or "like [she] is going to throw up" or had tummy pains at all! It will take longer to tell if it is as successful as we think it is, but there have already been definite improvements! Plus, she says her burps now taste like Lay's Classics, which is awesome in her opinion.
Wow- that is an impressive amount of work. Kaytar is very lucky to have such devoted parents :)
I get tired just reading this schedule! No way to get an extra
IV pole, and more syringes?! I understand washing syringes, but it seems that a few extra could make things a little easier.
Ooph. That is a lot of work. Also, what Katrynka asked - can you get a 2nd IV pole and more syringes?
I'll be honest, I had absolutely no idea how much work went into all of her feeds. I know it is totally worth it though when she is thriving and feeling well.
Insurance only provides 1 IV pole every 5 years, but we are trying to get a portable one via the Oley Foundation. It is kind of like Freecycle for medical stuff! We also can't get additional syringes through insurance, but if we ever get into a real pinch, we can order a box from Amazon or Ebay.
Kyla, you truly are Super Mom and Josh is Super Dad! KayTar and BubTar are very blessed to have parents like you!
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