Our issues lie mostly with the fact that we are limited to trips to Cincinnati Children's Hospital only every few months, so the time we are there is absolutely slammed packed. We are at the mercy of the hospital and pray all the stars align, every time. Before we ever leave our visit, we discuss our follow-up game plan for our next trip, we discuss the work we will do while at home and plan a strategy to maximize our visits.
And then it comes down to actually getting those visits on the books.
Before we can even get an appointment confirmation, we must first jump thru all the hoops known to man to make sure, 'Said department has all the information they need before we can speak to someone in scheduling'.
- Referrals
- Physician Orders
- Insurance Approvals
- Prior Authorizations
- "New Patient Questionnaire" completed and submitted
- Preliminary labwork/tests
Our next trip is slowly making it on the books. Here's our agenda while we're there April 9th-14th:
- Surgery. Upper and Lower Endoscopy and Biopsy's
- Sleep Study
- Gastric Emptying Study
- Dermatology
- Wheelchair Clinic
- Sleep Medicine, clinic visit to discuss Sleep Study findings
- Gastroenterology, clinic visit to discuss Biopsy Results and Gastric Emptying findings
Surgery must be performed on Monday, April 10th. It's the only day our physician performs surgeries and they're always done on Monday's so we can have biopsy's back by Thursday in time to review the findings.
The Gastric Emptying Study must be performed prior to the surgery. Although it can't be done the DAY BEFORE the surgery because during that time, we are in the process of cleaning out her GI System in-patient. It needs to be done two days before, but they don't perform them on Saturday's. We are waiting now for approval to do the study two days *after* the surgery and hope there isn't an issue.
Sleep Study is performed overnight (6pm-6am), but we can't do it during the night we're doing the GI clean-out. (Obviously waking a toddler every hour on the hour to perform painful rectal irrigations isn't conducive to determining why she doesn't sleep and rest well at night). She needs a peaceful night of sleep during the sleep study. The only day they have available to do the Sleep Study though is on Sunday night, into Monday = The day were already booked for GI Cleanse / Surgery.
Dermatology and Wheelchair Clinic are both wild cards. Both essential (ESPECIALLY the wheelchair clinic), but both are very tricky to schedule with. Wheelchair Clinic only books on Thursday afternoons, we have that time slot already booked for a follow-up with the Sleep Clinic.. and Dermatology needs a referral but we don't have a doctor in Cincinnati that's addressed this issue specifically.
So, as you can see, it's a mess. It's just as exhausting to read as it is to coordinate, but I know things will work out as they should. I just hope we can maximize our time and secure all our appointments while we're there.
On the Annabelle side of things, she's worrying us. She is persistently complaining of her tummy hurting.. regardless who she's around. Some times I take the complaint with a grain of salt and offer her a distraction, and sometimes, the look in her eye validates her pain and no distractions can make her forget about her tummy. She's having a hard time sleeping at night and the only coping method she seems to know is to drink her 'milky' (medical food / formula that we serve in a cup and also via gtube). She's waking 4-6x night crying for someone to help her. Last night she slept in our bed and it took her over an hour to fall asleep, after we entertained all her requests (milky, venting her gtube with an extension and 60cc syringe, rubbing her back, holding her hand, etc). She swore something was inside her tummy making her sick but there's nothing we could do to resolve it.
She cannot have a BM without an enema any longer. She just simply cannot go. This battle has been ongoing for years and I am at the point that I'm demanding an answer come hell or high water. That's the reason for this next scope. Dr. Putnam promised us in October that if her BM issues hadn't resolved over the next few months, we would move forward with treatment. In order to do so, he needs her scoped and the Gastric Emptying Study performed. I hope these reveal some sort of answer as to why she's having such a hard time. Because we can't stand to see her suffer in this pain and I am tired of the trauma it's doing to her every couple days (I won't go into details... just know this poor kids bottom is a mess :(
When we left Cincinnati the last trip, I came home with a heavy, heavy heart over the wheelchair conversation. I continued to fight it for a few days until I accepted it. Now that it's been a little over a month, I am recognizing all the times and opportunities that Annabelle does need a wheelchair. At school, she only lasts about 2 hours until she's pleading to come home, and when she does, she goes to sleep. At home she plays well, she runs and jumps, but when the height of fun is over.. she crashes harder than anything you've ever seen. Annabelle is 4.5yo and she wants nothing to slow her down.. but this disease is doing it. I am watching the works of how this disease destroys lives, in slow motion, I am watching it take down my baby girl. It's paralyzing to witness something slowly evolve into something you hate, and you can't do anything about it. I am just grateful that she's young, she's resilient, she's a bull when it comes to being weak, but she's adaptable and will take pride in her 'wheely-chair'. The stigma of being in a chair isn't part of her mindset, yet. She has an opportunity to embrace and fall in love with all the things her wheely-chair can do for her, and how much independence it can give back to her, well before she learns that being in a chair isn't ideal.
On that note, the reason we are going back to Cincinnati to the Wheelchair Clinic, is that I've hit roadblocks in Richmond. They want her assessed by all their own physicians, tests re-run and performed over again, and their doctors to determine whether or not she needs a wheelchair. After that, I will be assigned OT/PT and we can move forward to scheduling a date to discuss chair options. And since we're talking about Richmond, that means were talking months and months down the road. First and foremost, I am NOT putting Annabelle back thru any more testing. She's done all the leg work she's needed to do. We put her thru tests every several weeks in Ohio for other various reasons, I won't force Annabelle to be subjected to another doctors series of tests. I'm also not paying or making my insurance pay for it. Not happening. We have the BEST physicians in Ohio that have made their decisions, collaboratively together, for Annabelle and we support their opinion. I'm not jumping thru Richmond's hoops so they can get their money out of us and traumatize Annabelle any more than she already has. Plus, I trust Cincinnati Children's more than ANYONE in Richmond anyway. So there's my rant on why, once again, I hate Richmond and we're carrying her right back to Ohio to pick out her wheely-chair.
Life is wild. It's hectic, busy, frustrating and painful, but it's a blessing. Our family has been thru many things over the years with Annabelle, and we recently climbed yet another hurdle - thru all the hurdles and climbs though, one thing remains. We are blessed, we are loved and we are strong. Together, our family can challenge and overcome anything in our path.. even when we don't see the path ahead, somehow we find it. Madelynne reminds us every single day, how blessed we are. Annabelle reminds us every single day how valuable life is. Her little body has fought more battles than you can imagine, she has disproved doctors over and over and over. She continues to wear a smile and the best laugh, even when her little body is hurting and aching all over. She is wise beyond her years and speaks a medical language that most children should never understand. She is growing to become an advocate for herself and stand proud despite the world pulling her down.
She is so brave. She is so smart. She is so sweet. Annabelle is such a blessing.
I told her a few days ago, "Annabelle sweety, I made our next appointments for Cincinnati and we will be leaving in a few weeks." Her response, for the first time ever, was: "Okay mommy. I can't wait to see the bridges over the water, see Dr. Putnam 'oh! maybe he can change my tubby when he gives me the sleepy medicine so it won't hurt!' and maybe, mommy maybe they will tell me what is wrong with my body and why it's broken with so many boo-boo's inside..". I told her, "Gosh hunny, that would be really nice, huh?! I hope they can give us some answers this year, probably around Halloween time, we will do our big tests and they can tell us.... Are you scared of this next trip, do you have any questions?"
"No mommy. I'm not scared anymore. I know they are going to poke me and it will hurt, it always hurts. I know we're going to have to see a lot of doctors so we should bring my kindle so I don't get bored. But I know you and daddy have found the best doctors for me and one day it won't hurt anymore. I can't wait until I can be like sissy and my friends, and play, and go to school every day. My doctors are going to fix my booboos and I am going to be just like everyone else.
Don't be scared mommy, I'm not scared."
The conversation while driving down 295 on the way home, made the world stop. Everything was silent around us and I couldn't speak, I couldn't breathe. I pray a miracle heals her entire body, but the reality is that this disease will continue to manifest, I pray she finds peace and happiness and that her body aligns with whatever she defines as 'normal', I pray her heart and the love and happiness that fulfills it, lives forever!! She is heeling and saving us more than we are for her some days. Count your blessings every single day.
