I've drafted about 5 different blog posts. I have posts that were drafted while we were still in Ohio and then another that I wrote on our drive home. But I cringe with every word I have to write. I want to share how the rest of our week went after the procedure, but the truth is that it was awful. I am so, SO tired of updating here just to share with you that we aren't doing well. I hate it!
Above anything, I don't want to share the post that I am about to share. It's updates like these that rob our family from the lies that 'were living happily ever after' (what a tricky lie we tell ourselves, to enjoy the moment). We wear a smile until the truth is revealed and all that happiness is stolen from us because of this awful frickin disease! I hate it, I hate it, I HATE IT!
The skinny on our update is that the rest of our trip in Ohio took a traumatic downhill turn by Wednesday morning (2am to be exact). Annabelle began showing signs of bacterial traechitis which landed us in the Emergency Room. This was a result from the surgery and the anesthesia team changing our anesthesia plan mid-surgery without mine or AKs consent. They performed a new procedure on Annabelle that we never would have approved and the result was the irritation and damaging of her trachea. Those wounds were then exposed to bacteria that resulted in an infection that her body struggled to fight.
By Thursday, we were able to perform the Sleep Study. Annabelle did wonderful while being hooked up but she hated the nasal cannula. Once that was placed and taped securely to her face, she was able to cry herself to sleep. She wanted that thing gone more than anything and we couldn't help, we couldn't hold her because of all the tubes and wires she was connected to. We couldn't lay in the bed with her because of the monitors. She had to be left alone, still and immobile to sleep the night by herself. She was still trying to recover from traechitis, coughing, gasping and moaning. God she was just a mess. It was a hard night for all of us, AK nor myself slept at all that night.
Friday was the day we ordered her wheelchair. This process wasn't as painful as we expected it to be once we got in the room. The OT and Vendor quickly led us thru the process of selecting the right chair for Annabelle. Our requirements were:
- Lightweight enough that Annabelle can push it alone
- Frame can adapt to add power options to the chair later, if we need
- Collapsible so we can transport it in our current vehicles
- Sized appropriately for Belle now and will also last us 5 years (insurance will only allow 1 wheelchair every 5 years, so it has to fit her hiney now all the way until she's 10yr old!)
- Versatile so we can personalize it to our needs
What we landed on was a chair called a Ti-Lite, Twist. Annabelle choose a purple frame and hot pink seat. http://www.tilite.com/chairs_twist.php
Once we choose the wheelchair itself, then came time to customize everything that Annabelle needed for it to serve her.
- Transport brackets to allow Annabelle to be transported in the chair (school bus, metro, etc)
- High back seat cushion. This is necessary when transporting and will also provide more comfort for when she needs to rest.
- Hip protectors. To prevent her clothing, fingers etc from falling into the wheels right beside her hips (This is about the moment I began asking why the hell do chairs NOT come with most of these things?!)
- IV Pole. To hang her feeding tubes, pumps, bags and fluids.
- Removable, washing seat cushions. Having a child with a GI disease = lots of messes. Why wheelchairs don't come with removal seat cushions and washable inserts, is beyond me.
All these things were upgrades to the standard chair. Our #1 upgrade that we did opt to do were Annabelle's wheels. We bought our baby 22's!! haha ;) The wheels we upgraded were significantly lighter which allows the chair to become much lighter to push for Annabelle (and us) and also to lift to put in a vehicle. Since we upgraded to the low-profile, lightweight wheels, we were also able to angle them on the chair to allow Belle to be much more comfortable when resting her arms beside her when pushing the chair. You wouldn't believe the world of a difference this made for her. I am so happy about this upgrade (but holy crap, the cost was painful).
We choose NOT to add power to the chair at this time. Honestly, it's just so expensive and we can't afford it. The wheels that deliver the power were too heavy for us to lift (well me, really. It made the chair almost 100 pounds!) and, it was a bit too tricky for Annabelle to use. We also didn't like the way it forced her to position herself and her arms in the chair to use it. At a price tag of additional $7,500, we couldn't do it.
This wheelchair, while it was painful to accept, build, order and purchase; I know will provide our little girl with more independence and the cause for so many smiles to come. She will be able to keep up with her friends, play and laugh along side everyone again. As a parent, I look forward to not carrying her everywhere we go, I look forward to knowing that if she wants to play and run for a minute, that when she crashes and cannot stand that she will have her chair beside her to help keep going. As her mommy, my heart SHATTERS that my 4 year old is going in a wheelchair, but it BURSTS that our medical team was wiser than I and made this decision on behalf of our family. I know we will love it and own it, just like we do our adjusted lifestyle and feeding tubes. It will quickly become part of us . . . . the road is just a bit wee bit intimidating.
So that was the short summary of our week, except our GI Follow-up...
:sips wine:
:gulps wine:
I knew it would be bad when Dr. Putnam ignored my very first question to him: "How do the biopsies look?" He response was, "She doesn't have any active disease in her colon.. but we need to talk about it. Her colon is extremely dilated and damaged.."
AK and I anticipated this, as in her lower GI, being a large part of our conversation during this visit. We listened with open ears, but a pounding heart.
What we're dealing with is something called, "Involuntary Encopresis with Chronic Constipation". Basically, her damaged body doesn't know when to pass stool, so it holds onto it and as the stool builds up, it stretches her colon. By the time she is so 'backed up', the stool is entirely too large for her to pass on its own. In between the times she has a BM, some loose stool/fluid will leak around the impaction.. resulting in leaking stool, constantly (very frustrating for us all).
We don't have a lot of options with how to address this new diagnosis. But we choose to give it our all and attempt to repair the damage done to her colon, without having to remove it. AK and I are committed to working our asses off at home for our daughter, in an effort to avoid more loss of her poor little bodies function. Our homework is to clean out her GI system, FULLY, every 24 hours. It's been years since we've attempted to do this at home, but over the last month, with the help of a LOT of drugs, we've actually been quite successful. We are disappointed to have her back on medications, but I am relieved to see they're working and Annabelle is able to get a bit of relief.
The downside is that it takes 6 months to repair the amount of damage Annabelle's body has done to her colon. If we fall off the bandwagon and something happens to where she doesn't fully empty her colon every day, the clock restarts for another 6 months. Unfortunately, we've been given only 6 months to make substantial progress before her medical team moves to next steps of intervention.
When we return to Ohio, we will follow-up with the Neurogastroenterology and Motility Disorders Clinic where they will help us navigate our next steps in treating this newest diagnosis. Our goal is to be able to alleviate how dilated her colon already is by emptying her GI daily, and then when we meet our new doctor and based on the surgical report, we will be able to repair the damage that is already done by performing Botox Treatments to the damaged areas. That is our stretch goal, rainbows in the sunshine, perfect happy ending, goal. If we fall short anywhere below that, we are looking at removing Annabelle's dying lower GI system, just like we did to her upper GI, 2 years ago.
Then, we got on the subject that makes me nauseous to even reflect on.
:finishes bottle of wine:
Dr. Putnam: "I am really sorry. But the biopsies did show eosinophils in her esophagus and the active disease has returned."
Those are some of the hardest words to ever hear.
.. this means our mission for finding Annabelle's diagnosis has just ended. It means we cannot keep searching, testing, meeting with doctors and narrowing down our search window. We get skewed and pointless results if Annabelle has relapsed, and that's where we are..
.. this means we've lost control of her disease once again. For 10 solid, fun-filled, happy months, Annabelle was free from this disease, and now it's back. We have absolutely no idea why it's back or what has set it off. And honestly, it doesn't matter anymore.. it's back..
.. this means a clock starts ticking again. A bashing loud, haunting you from your dreams, robbing you of laughter, fogging your wishes for your baby, awful fucking clock is ticking..
.. it means we stop, refocus, reflect and live for right now.
That's what those words mean to our family. We left Cincinnati, Ohio with no treatment plan or advice from our medical team. We came home to a quiet home, surrounded by loved ones that were happy to see us home but blind at the news we had just received. We came home to continue to live life the best way we know how.
It's been a month and we are still adjusting. Last week we took the girls rootin' / 4-wheeling in the mud. The somber depressing rain was drowning our smiles that were already hard enough to find, so we decided to make fun in a horrible situation. We took the 4-wheeler out and played. The look on the girls faces when mommy and daddy began having a mud fight, was priceless. We were all filthy, but we had such a wonderful time.
I've called the school to begin the process to get Annabelle registered for Kindergarten. Honestly, Annabelle hasn't even made it to preschool much in the last month since we've been home. She's made it to school about once or twice x week but doesn't seem to have the energy to attend much more than that. In the grand scheme, she doesn't need to go but she wants to ride the bus and be like her friends.. so darnit, she's going.
She sleeps late in the mornings and tires very quickly. Her mood is shifting a lot too, she's angry and frustrated with us nearly all the time, her patience is so thin which tells me she is uncomfortable and in pain. She cries almost every single day that she hurts, and I just can't imagine what she must be physically enduring. Her tiny body is failing her and rotting from the inside out, and all we can do is give her a hug and remind her how much we love her and how strong she is.
My prayer is that you love one another. That you see the best in one another, even if that means you have to dig down deep to find it. My prayer is that you don't spend your lives in frustration, guilt or anger but that you spend it building and loving the ones around you.
My prayer is that you consciously seek to find the beauty in all situations and not take a single day for granted with those that you love.
Sit down, listen to the children around you, have a conversation with your grandparent and hear what they have to say, be still in the chaos and appreciate how alive the world is around you.
In the blink of an eye, your life can ground you so quickly that it makes you physically ill, every minute you live without smiling and appreciative in this life, is a minute you won't get back.
Hold your babies when you're together.
Walk away when you want to scream, but run back for a hug and kiss when you're collected.
Watch them sleep with their eyes closed and their chest rising and falling.
Feel their warm skin and drown yourself in their giggles.
Remind them you love them, every single day.
Pray for them, with them and to them.
And as a friend, my prayer is that you will always support one another even during battles that you don't understand. That you will allow yourself to be selfless in your friends needs and love without judgment.
Above all, laugh, enjoy the company around you, cherish your blessings and know that in the end, you led a life with no regrets, you loved without holding back, you respected yourself and family enough to fight for it and you're grateful for all you have.
No comments:
Post a Comment