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It’s been a very interesting year for the Traver girls. Shortly after the 2016 Cycle for Life, Lilly’s BMI crashed from the 60th percentile to the low 20th percentile in a month (that’s roughly a loss of 2 lbs). Throat cultures showed pseudomonas (the bad bug that we work hard to prevent) and MRSA. Pseudomonas has been found to cause long term lung damage in patients with CF. The long term effects of MRSA is still unknown, however, we decided to try to eradicate that as well. Shortly before Thanksgiving, we began the eradication protocol. This involved everyone who comes in contact with Lilly having to use a mouthwash and a nasal ointment to kill off any potential bugs. We also wiped all toys down with Clorox wipes each night. Lilly was on 2 oral antibiotics for 2 weeks and then a new antibiotic for an additional 2 weeks after that. She was also on an inhaled antibiotic for the entire 4 weeks. At the end of that (just before Christmas) we found out that she had successfully eradicated the MRSA, however, the pseudomonas was still present. Unfortunately this meant that she’d have to get a PICC line and begin a course of 14 days of IV antibiotics, followed by another month of oral antibiotic along with 2 months of inhaled antibiotic. Being new to the PICC line game as parents, we were pretty determined to keep her inpatient at Cincinnati Children’s for the duration of the 14 days. Lilly had other plans and it doesn’t take a rocket scientist to figure out what happens when you lock a 3.5 year old child in a room with a parent for 14 days (answer: the child drives the parent crazy). We lasted 4 days before we asked about finishing the IV regime at home. We were home on day 6. We successfully finished it out with the help of Children’s Home Health care and went on to eradicate the pseudomonas just in time for Lilly’s 4th birthday.
Luckily, the spring was fairly uneventful. Both Lilly and Kaileigh have been gaining weight steadily and we had an awesome mid-June CF clinic visit. Kaileigh’s BMI reached a new high of 77th percentile and Lilly was on her heals at the 66th percentile. We looked forward to finishing out the summer and getting Lilly back into school. Then, 3 days later, the dreaded email came. Lilly cultured pseudomonas again. Another 28 days of antibiotic and we’ll be done. Not exactly. After the 28 days passed, her culture still showed pseudomonas. So, on 8/3, she had another PICC line placed and is now repeating the process that we started the year off with. There are 266 days from January 1, 2017 until September 23, 2017, the day of the bike ride. Of those 266 days in 2017 Lilly has been on an antibiotic of some kind for 152 of those days. That doesn’t include the 2 months in 2016 that she was on them either.
As indicated above, Kaileigh has been having a great year. Whenever one girl cultures for pseudomonas and the other one doesn’t, we always get the one who had the negative culture retested a few weeks later. Pseudomonas can transfer from person to person via air and surface, so we always like to be sure that one girl isn’t giving the other girl the “bad bugs”. In January, Lilly’s bugs were unsuccessful in penetrating Kai’s defenses. However, this late summer round ended up getting to Kai as we just found out that Kai now has pseudomonas and will begin phase 1 eradication with an inhaled antibiotic. If that doesn’t kick it, we will skip phase 2, and she’ll go right to phase 3 with a PICC line and IV antibiotics (same path as Lilly).
The girls’ CF doctor is very hopeful that the girls can start the Orkambi drug soon. This new drug will help correct the cause of CF at the cellular level, which will help the lungs function more naturally and get rid of the thick sticky mucus that harbors pseudomonas and other harmful bacteria. As of now, the drug is only approved for patients 6 years and older. It’s very comforting to know that because of scientific advances and funding from the cystic fibrosis foundation (CFF), the girls can start benefiting from it soon.
Cystic Fibrosis is a very complex disease. 60 years ago, we knew very little about it and patients barely lived to see elementary school. The CF gene was discovered (with funding from the CFF) in 1989. Kyle and I were 3 years old in 1989. It absolutely blows my mind on how far science and research has come in less than 30 years. The google machine tells me that right now the average life expectancy for a CF patient is 37 years. I cannot and will not accept that my daughters will die in my lifetime. That is why I raise money for and give money to the Cystic Fibrosis Foundation, the best, most recognized organization in the greatest country on earth that provides funding for a cure for Cystic Fibrosis.
Because of the advancements made on treating this disease by the CFF and its partner organizations the girls have the following:
Digestive enzyme medication to help them grow and be able to fight off infections better.
Gastrostomy tubes (G-tube) to help them achieve their BMI goals.
Air way clearance vests and a daily therapy plan in place.
Inhaled “maintenance” medications to help clear mucus from their lungs.
Inhaled and IV antibiotics to help them eradicate harmful bacteria from their lungs.
A potential “cure” or “symptom lessen-or” that treats the cause of CF.
Items 1 through 5 listed above have become a major part of the girls’ life. Every one of those items is reflected in some form in the girls' daily schedule. At a minimum, we are only 16 months from the 6th item becoming a part of Lilly’s life and to see what that medicine can do for her and her fight to be a normal kid.
If you have any questions, please feel free to contact me. We learn new things about this disease all the time and no question is dumb or stupid. I routinely find myself asking our CF doctor questions I’ve been asked by others (more specifically my mom) that I do not know the answers to.
For information regarding CF, what it is, and what is being done by the foundation, please see the following links:
My Personal Web Log
Traver Girl's Daily Schedule
I believe at one point I promised a daily schedule. Here is the most recent I have:
6 AM - turn off overnight feeding pumps, clamp off extention tubes and disconnect feeding tubes.
6:45 AM - prepare Kaileigh's Water, Prevacid, Miralax, and Treatment.
6:45 AM - Prepare Lilly's Water, Prevacid, Miralax, Levaquin, and Treatment.
7 AM - wake up Lilly (she needs to start her process around the same time each day)
7:10 AM - give Lilly prevacid via bolus tube- flush bolus tube with Miralax. Take Bolus tube off, put primed R-Angle tube on and administer Levaquin. Flush with water. Nose spray: Shake bottle before use. Place spray bottle at tip of nostril, administer one squirt per nostril.
7:15 AM - start Lilly's treatment. Give meds IN ORDER ABOVE. DO NOT give Saline & Pulmozyme next to each other--can be toxic. Total treatment time is ~1hour 15 min.
7:30 AM - wake Kai up, have Kai go potty, get dressed
7:45 AM - give Kai her Prevacid - flush bolus tube with Miralax. Nose spray: Shake bottle before use. Place spray bottle at tip of nostril, administer one squirt per nostril.
8 AM - Kai Treatment (Pulmozyme (clear nebulizer with full mask)) followed by TOBI. Total treatment time ~45 min.
9:30 AM -Kai Periactin (1.5mL by mouth)
9:45 AM - mix Kai's food (180mL (3 tubes)), 5 crushed pertzye enzymes, and 2.0mL aquadek (orange) vitamins
10-1030 AM - prepare Kai's tubes- make sure to prime the bolus tube before starting. Administer Kai's 1st Tubes (3 tubes). Give Lilly her Periactin (1.5mL by mouth). Mix up Lilly's tubes: (210mL (3.5 tubes)), 5 crushed pertzye enzymes, 2mL aquadek vitamins, ? jar beechnut meat, 2 Tbsp dry milk.
10:30-11 AM - prepare Lilly's tubes- make sure to prime the bolus tube before starting. Administer Lilly's 1st Tubes (3 tubes)
4 PM - Kai Periactin (1.5mL by mouth)
4:15 PM - mix Kai's food (180mL (3 tubes)), 5 crushed pertzye enzymes
4:30 PM - prepare Kai's tubes- make sure to prime the bolus tube before starting. Administer Kai's 2nd Tubes (3 tubes). Give Lilly her Periactin (1.5mL by mouth). Mix up Lilly's tubes: (210mL (3.5 tubes)), 5 crushed pertzye enzymes, ? jar beechnut meat, 2 Tbsp dry milk.
4:45 PM - prepare Lilly's tubes- make sure to prime the bolus tube before starting. Administer Lilly's 2nd Tubes (3 tubes)
6:45 PM - prepare evening treatments.
For Kai; 1 vial TOBI in Peri Nebulizer w/ mask.
For Lilly; 1 vial saline AND 1 vial albuterol in blue nebi cup (put in same one) + 1 vial TOBI in Peri Nebulizer w/ Mask. Prepare 7mL Levaquin for Lilly w/ R-angle tube
7:00 PM - give Lilly her Levaquin by g-tube. Start girls treatments. Kai only has TOBI. Lilly should do TOBI last.
7:30 PM - get night feeding poles ready. Moog goes on the right, Farrell on the left. Clamp the return clamp on the Farrell Bag. Get the package of relizorb out - do not open yet.
Around 8 PM - Bedtime
9:00 PM - Get night feeding ready: get out 2 cans of pediasure 1.5 & 2 nutren 2.0. For each girl, Add entire bottle of nutren to a measuring cup, fill up to 400mL with pediasure, get 3rd periactin dose (1.5mL) ready, as well as a water syringe and right angle extension tubes filled with water.
9:30 PM - if still awake- give them periactin by mouth. If not- connect right angle tube to her button & tape down on her underwear near her front opposite hip. Leave some slack so it is not pulling on her. Push periactin through tube then flush with water.
10:00 PM - add night feeding to Moog bag. Place cap on Moog bag. Next, disconnect moog bag from Ferrell bag and attach relizorb enzymes. Use green clamp (in pic above) to squeeze together and prime the entire line with formula. Place the green clamp inside the pump where it goes and shut the door. Clamp tubing when completely primed. Connect the tubing to the right angle extension tube on Girls. Push together hard, make sure the small medicine port is completely closed after connecting. Open both clamps on the right angle tube and tubing. Tape tubing down to her underwear on her butt. Start feeding pump.
**NOTE: IF either girl gets sick during the night- stop the pump, clamp the tubes, unhook her from the night feeding, take her extension tube off and THEN clean her up.
10:05 PM - make feeding for next day:
4 jars gerber meat food
1 container (4oz) bananas
1 container (2oz) bananas
1 container (4oz) sweet taters
2 containers (8oz) dannon yogurt
? container (4oz) pediasure 1.5 (use whatever was left from night feedings w/ nutren)
3 Tbsp sugar
2 Tbsp Dry Milk
1 Tsp Salt
5 Tbsp Oil
Mix together- add oatmeal cereal to desired thickness.
Kyle, of course, has this all typed up in a word document with associated, labeled pictures and diagrams. The blog formatting doesn't really allow for all of that so if you really have a genuine interest in seeing the whole document (this is kind of just a preview), please feel free to contact me and I'll email it to you.