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!
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.
We head towards Ohio tomorrow (via Dallas).
We found out unexpectedly that Kate has some sort of infection. We thought we were just following protocol getting her tested because of her upcoming test requirements. We assumed that it was just a formality and would come back clear. Well...our assumption was wrong. She'll start antibiotics today and hopefully that will be end of that!
Monday she will undergo two procedures. The hospital is still saying that she is not going to be sedated. I told them to have 5 people on hand to hold her down! It will be a rough day for sure.
Tuesday and Thursday will have clinic visits. We'll check out what the results from Monday and decide if we need to make any changes to her current regimen. I'll update as we know more.
Thank you all for your continual prayers and support.
Several have asked for an update...so here we go! (Including a new trip to Ohio in January...)
The life of a child with chronic medical issues is never "done". We have learned through this adventure with Kate that we are in a bit of a forest. It's very easy to get overwhelmed with the size of the forest. But our experiences at the WONDERFUL Nationwide Children's Hospital has encouraged us to just focus on chopping one tree down at a time.
The port they placed in Kate's tummy/belly button last May has been a God's send. For those that don't know, it's called a Malone, or M.A.C.E., and sometimes called an A.C.E. Each day she puts 3 kinds of medicines into a large gravity bag and let's it run in through her port, taking about 45 minutes to an hour and a half, depending on the day. We've had to do several x-rays the past 3 months (including one tomorrow) because she has been backing up a bit. But they are just tweaking her "recipe" as needed. This is not entirely unexpected as she grows and changes. Things in this department seem to be holding fairly steady. SO much better than a year ago!!
The next tree we've been working on is urology. Things have improved some, but they are not getting to where the team would like it. They've adjusted bladder meds several times with little to no improvement. Because of this, we will have to go back to Ohio at the beginning of January for a week for some additional testing and clinic visits. We've done these tests at Cook's in the past, but Nationwide said it's time to re-do them. I'll admit-- they are NOT going to be fun ones...very invasive/no sedation. One of the tests they will repeat is called the VCUG, which is the test that originally caught her unilateral kidney reflux. They are curious to see if the other kidney/ureter is causing problems. They will also do a video urodynamics study where they will check nerves, muscles, bladder capacity, etc. Please be in prayer for those tests. Not just for good results, but for Kate's little heart throughout them.
We have applied for another flight through Miracle Flights and for a room at the Ronald McDonal House. Please pray that they have openings. The holidays are sometimes hard to get funding/openings.
- Dyslexia therapy-- SOOO GREAT! She's making great strides!
- ADHD meds- We have been working on these meds in hopes that they can help Kate coordinate all the things her body needs to be doing. The new med is going so-so. We've found one with less of side effect of irritability/aggressiveness. But it has affected her appetite (which is not good for her already low weight), sleep, and skin picking. But you should see her art work. :)
- Genetics will re-run her test samples sometime in the next 2-4 months to see if any new developments have been made in the genetic field. They were focusing on some of Kate's extra genetic material.
- Our new insurance stinks. Not covering what we need. Kate has had to drop occupational therapy and pelvic floor physical therapy because of this. Not the best, but it'll be ok for now.
- Kate's medical supplies and medications were also somewhat compromised with the insurance. Our church family has been blessing us with help in this area.
- While we are currently holding at $21,000 (oy!) in medical debt, we are doing ok so far with the month to month medical expenses thanks to some generous donations. Again...we refuse to be held hostage by our "forest"! :)
Thank you all for continually asking about how Kate is doing and for all who are supporting us through prayer and even finances. Your blessings to our family do not go unnoticed. We pray thankfulness for each of you!
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.