As soon as I got home, I got to work on compiling some pertinent information for Josh. A lot of it was already fairly accessible, as I keep and online copy of the start of her medical binder on Google Drive and a physical copy by my bed, but it wouldn't have helped him any since I've never mentioned it to him or shown him where I keep it. The medical binder already had the following info (and the physical copy also has her latest notes from clinic, sleep studies, audiograms, ect):
-List of physicians/therapist/insurance case worker and all contact infoIn addition to this, I wrote up a walk-through of an "ideal" day in KayTar's life, a non-sick, run-of-the-mill sort of school day:
-Copy of her insurance card and SS number
-List of all meds, what she takes them for, when she takes them, and if they are PRN or daily, as well as her formula and oxygen information
-Equipment and supplies list (and I added what HHC handles what equipment and when to contact them, as well as how to find her glasses script info online)
- An updated Visual Guide to KayTar
5:00am NexiumI also wrote a "troubleshooting" guide for if she is sick, kind of the thought-processes I go through when deciding how to treat her when sick. It won't cover everything, but these are the most frequent things we encounter:
6:15am Give 7 ml Augmentin and start feed ((dose) 240 ml @ (rate) 480ml/hr) of 8 ounces of Elecare 3 tsp Miralax, and 1 tbsp cornstarch
6:45am Feed over. Get dressed. Turn off O2. Brush hair and teeth. Pull hair into ponytail. Give 2 puffs of Advair. Socks/shoes on. Prep school feed (8 ounces Elecare, 1 tsp of cornstarch and water). Make sure glucometer bag is packed and is in the front pocket of feeding backpack. Pack lunch. Write note for her jacket pocket.
7:20am Leave for school. Bring backpack, lunchbox, jacket, pulse ox, and feeding backpack. If it is Monday, bring O2 tank and supplies (check with Mrs. H about the Augmentin that stays in the clinic to see if/when she needs more.). Drop pulse ox, feeding backpack, and oxygen in clinic.
11:00am She gets her glucose check and tube feeding at school.
3:05pm Dismissal. Pick up pulse ox from clinic either before or after dismissal time. On Friday, bring home O2 tank and supplies.3:30pm Give 7ml of Augmentin and start another tube feed. Do homework. She does her handwriting work on the paper that I have stored on my computer. [My Documents->My Pictures->September 2011->Hi-Write Paper] Most things she can do on her own, but she often needs help remembering the steps for ABC order. We do it this way (if you don’t understand from reading it, just read it to her and she’ll show you what it means): Write the alphabet on the paper. Go down the list and circle the letters of the alphabet that the words start with. If there are multiple words with the same first letter, then she writes 2, 3, 4, ect. near the circled letter. Then she goes down the alphabet and stops at every circled letter, finds that word, gives it the proper number. After all the words are numbered, then she puts them in order on her blank paper.
6pm Shower or Bath. Pajama time. Braid hair. Teeth brushing. 2 puffs of Advair.
7pm Give 10ml of Benadryl and dose of Nexium. Reading time.
7:30pm Bedtime and cuddles. Start oxygen at ¾ liter.
8:30pm Mix Elecare; 27.5 ounces of water + 22 scoops of Elecare. Lay out clothes for next day (both kids).
9pm 7ml of Augmentin and tube feed.
This is an ideal day...we both know it doesn’t always go like this, though! :) On the weekend, it all gets shifted around. Feeds are typically 4 hours apart, so set an alarm until it becomes second nature. Be sure to check her oxygen saturations periodically, if she is BELOW 96, start her on ¾ liter of oxygen and increase until sats are appropriate.
Ketones/Hypoglycemia:I put all of it on Google Drive and shared it with Josh. I also showed him how to braid KayTar's hair...you know, the important stuff. ;) It isn't everything and I don't think I can EVER cover all of the bases, but I feel like I got enough of the important stuff down in writing to make it considerably easier for everyone if something were to happen to me. I probably should have done it ages ago, in all honestly, but thinking about and preparing for your own death just feels sort of grim. Realizing how quickly and unexpectedly something terrible could happen was the little push I needed to finally take care of this!
*When KayTar is sick, periodically check her urine for ketones. If positive, check every urine until they resolve and occasionally thereafter.*Check glucose in the morning when sick and when she is symptomatic during the day (lethargic, nauseated, dizzy/wobbly, “legs don’t work”). If lower than 70, give 2 ounces Gatorade. Recheck in 15 minutes. Give 2 more ounces of Gatorade. Continue until glucose is appropriate. If below 50, go to ER at Children’s Memorial Hermann and give them her protocol letter.
*First line of treatment is Benadryl (10 ml every 4 hours) and Albuterol (2-4 puffs if coughing is not bad, a nebulizer treatment if it is bad, every 4 hours.*If the cough is not responding well to that, you can give her 10ml of Triaminic Long Acting Cough (dye-free). The other OTC cough meds make her manic, beware! If you ever have to use a different brand, do not give it after 2pm!*If coughing does not resolve after a viral illness or if she gets better (no more fever) and then spikes a new fever 1-3 days later, take her to see Dr. H...she either needs oral steroids or has pneumonia. This is her pattern.*When sick she needs increased oxygen support, make sure to increase her oxygen dose so her sats are in range and keep her on 24 hours until she is doing better.
*Give 5ml of Ondansetron every 6-8 hours for vomiting.*If she feels too full after a feed, draw some out with venting/decompession tube.*If she is not tolerating formula feeds due to illness, slow the rate down (try 120ml/hr). If she still is not tolerating it, try slow drip Gatorade instead (a rate of 60ml/hr and a dose of 240ml will run in 8 ounces of Gatorade in 4 hours. Try to get 2 of these in during the day. Then run the pump overnight at 30ml/hr with a dose of 240 ml and she will get 8 ounces over 8 hours to keep her glucose up. Try formula at this rate the next day. When running formula over long periods of time, hang an ice pack with it. Continue to work the rates up from there until she is back to (or close to) normal, which is rate of 480ml/hr with a dose of 240ml.
*I do not usually give meds for fever unless it is at/above 102 or she is bothered by it.*First line of treatment is 10 ml Motrin every 6 hours. *If Motrin does not break the fever or if it spikes back up prior to the 6 hour mark, you can give 10 ml of acetaminophen every 4 hours. Write down what time you give which med, it gets confusing in the middle of the night. If you know she needs both meds to keep the fever down, try to get into a schedule of alternating them every 3 hours.
*If she is feverish and ketotic/hypoglycemic and not tolerating feeds...or if she stops urinating or isn’t cognitively herself...take her to the ER at Children’s Memorial so they can manage her.