Kate Ciardi Medical Expenses
At the top of her medical list, Kate has problems with her bladder and bowel systems. She suffers from severe chronic constipation and has problems with muscles and nerves in the bowel and bladder areas, which have caused her to be bladder and bowel incontinent. She has seen many doctors and specialists, undergone major surgery for kidney reflux, and has had countless tests and procedures. Her daily life at home revolves around medication, timed voiding schedules, accident management, bowel clean-outs, physical and occupational therapy 3 times a week, and more. Her doctors know that these problems are important…they affect her health, as well as other systems, and of course, her quality of life. But her care has not progressed in the way that all have hoped.
Kate has been selected to be a patient at Nationwide Children’s Hospital in Columbus, Ohio.
Nationwide has a program that specializes in a collaborative treatment for children with problems like Kate. The hospital offers an 8-day outpatient program called Bowel Management Week. Kate and her parents will meet with a team of doctors and nurses from several departments: colorectal, GI motility, urology, and others. The team has already outlined an initial plan of care for Kate including 2-3 days of testing before they begin the week’s protocol. The rest of the week will include daily medication adjustments, X-rays, and visits with the care team.
She will be scheduled for the next possible Bowel Management Week, as soon as her arrangements are finalized.
Kate and her parents will need to fly to Columbus, Ohio. They hope to stay at the Ronald McDonald House if there is availability. Otherwise, they will have to stay in a hotel. The family needs help raising the cost of all travel expenses. Donations may be made on this crowdfunding page, or sent to:
South 11th and Willis Church of Christ
3309 South 11th Street
Abilene, Tx 79605
Please put in the memo line: Kate Ciardi
Please help the Ciardi family get Kate to Columbus, OH. They are so grateful for all the love and support that has already blessed Kate and their family.
Please share this page. This is an amazing and necessary opportunity for Kate!
Well....it has certainly been an "interesting" week for many reasons. Today was LONG. Kate had 4 hours worth of things at the hospital. Her x-ray was disappointing. For some reason, she is backed up again. So they are going to alter her Malone "recipe" a bit...she is maxed out on one med, but they will double another. I'm REALLY hoping that doesn't induce nausea and vomiting (which is does for some). Guess we'll find out tonight! Kate will have an outpatient surgery tomorrow at 3:30, under general anesthesia, to revise her Malone stoma some. Afterwards, she'll have that external catheter sutured to her tummy, but we've done that before so I don't think it will be a big deal. I will be by myself with all 3 girls, but I think the hospital has worked out some extra help in hour and a half increments. I'll just be getting some extra steps on my imaginary pedometer. ;) Her urology team is having us do some reporting and documenting of things without her TENS unit (for nerve stimulation) and withOUT her TENS unit. We'll see how that goes and then make decisions for the next step after that time. We are also going to try a different drug again (our old insurance denied it....new insurance approved it!! Only problem is the $80 copay, haha.). But we'll wait until we get back to Oklahoma to tackle that.
We hope to be on the road by Saturday afternoon or Sunday to head to New York, depending on when Kate's released for travel. But for now, the girls are enjoying the many joys of the Ronald McDonald House!
We've had a pretty good week, but we are ready to go home!
- All urology stuff is almost the same. See changes below.
- Kate's xray showed some backing up again, but it's not terrible. She's not showing any symptoms of it causing problems, so we're not making any adjustments right now.
- Her Malone port is going GREAT. If we can convince Kate to cooperate, we'll try transitioning off the plug some...a little at a time. She's not convinced that's a good idea, haha.
- Insurance has denied the new bladder med. We will be starting a new one (that has similar side effects as the current one), but they said having done 2 in one med family will give us some "ammunition" with the insurance company. I'm not surprised at this since we've already had such major issues with our insurance. We'll start the nerve therapy after a few weeks on the new med so we know what is and what is not helping.
- Kate's kidneys are not growing as they should. They will re-check them in 6 months.
- Our clinical nutrition appointment gave us a lot of information. The dietician was concerned with where she is on the growth chart and the fact that she has been loosing weight. Apparently they would like her age to gain 4-8 pounds a year...Kate's going the opposite direction. Her BMI is under 1% and weight is under 5% on growth charts. She will start some high calorie supplements as well as really getting some high iron/protein/calorie foods when she is eating.
We will return in 6 months for re-checks.
You are a wonderful mother (and family) to that precious little Kate. I ache for all of you. Wishing you endurance and patience and a healthy daughter! Love.
Thank God for loving parents, friends, doctors and nurses. Thinking of you, Minda, and all who have supported my own daughter and Type 1 grandson. What would we do without that marvelous support system! Things will improve. I know it. Love you.