Annabelle had relapsed, hard.
In November, we introduced her to pork (bacon, sausage, tenderloin and ham). When her body began to respond to the new protein, it started attacking itself. We didn't know what was happening until it was too late. Annabelle has lived a life of pain, so for her to complain of hurting is nothing unusual.
Around Christmas she got worse.. shortly after Christmas she began crashing and we started watching her body slow down. She couldn't run or play, she could hardly stand without falling or being dizzy and her blood pressure began to show signs of distress. Annabelle stopped eating.. we bumped up her tube feedings. Then her pain became so violent, I was calling Cincinnati almost every day pleading for an appointment or some type of guidance to help her. Minutes felt like hours and days felt like an eternity. Once it got to the point we couldn't even send her to school as she could hardly stand, move or cry - her team began to weigh whether or not we needed to admit her to a local hospital or flea towards Cincinnati Children's. We decided late that evening that we would find the earliest flight and by the next morning, Annabelle and I were in route to getting her the help she needed.
January is hard to reflect back on. I've wanted for months to share with you all what happened during those weeks in the hospital and following during her recovery but the words are hard to find.. and sometimes, just not expressing them is easier to mourn what's happening to our daughter. So I thank you for understanding. It isn't often that I throw in a towel for complete privacy on Annabelle's Journey (although I don't share nearly as much as it seems sometimes), but during this time - I haven't been able to process what happened enough myself as mommy, let alone find the appropriate words to share.
That being said and my heart full of gratitude for your understanding - I do want to share where we are now.
Annabelle is still recovering from the relapse. It took months for her immune system to improve. During that time she was left susceptible to every germ and virus in the county.... and she caught it. With every illness, we held our breath. Knock on wood, she has been healthy for a few weeks now finally and we are counting our blessings.
While we navigated the waters of illness after illness, we've also had some meetings with her school and phone conversations with her medical team.
SCHOOL
Unfortunately, the physical demands of a relapse take a huge toll on how Annabelle performs academically. When she's in pain, when she's fatigued etc she cannot and does not concentrate or focus. When your body works so hard fighting for your health, developing new skills, concepts and learning a world of new things becomes very secondary as a priority for the brain. Our Neuropsychologist explained in great detail the direct correlation between chronic illness and learning. As a result, we are seeing the affects in how Belle performs academically. While her health is a top priority, normalcy and being a child has also always been a priority for us too.. we want our daughter to excel in school, at least to a point that she doesn't struggle, frustrate and begin to dislike school. I don't need to go on as to the importance of prioritizing school / structure / learning / friends etc, but I did want to share that at this point, AK and I were left with some big decisions in how we will balance her health vs education.
Annabelle needs as much classroom focus and attention as we can give her. For that reason - we decided to cancel all our food trials and any testing or doctors appointments until school is over. She also needed the medical break and we didn't think her weak immune system should be pushed much more right now.
MEDICAL
Because we've decided to cancel food trials, that leaves Annabelle with very little protein in her diet. Protein is critical and our next food trial was going to be trialing another form of protein (she choose fish! ) So now, that option is gone and were left continuing to balance a weak diet. At the same time, her system has been having a harder and harder time digesting Elecare (liquid medical food we tube feed her with). We're at the point that we dilute the Elecare each night before bed, otherwise she will spend most the night crying in pain from a full belly. We're not doctors so clearly we have no idea where the pain is coming from, but diluting the formula seems to be providing some relief so we're going with it.
She is also having a more difficult time getting rid of gas in her GI system. We haven't had to "make bubbles" (we do this by connecting her g-tube to a long 'straw' like contraption called an extension and then a 60cc syringe. Once we remove the plunger from the syringe, there is an open passage for any air to escape her stomach thru the tubing.) Annabelle has a Nissen, where her stomach is sewn snug around her esophagus, preventing her from being able to burp or vomit. For a while she was doing better with her body filtering the gas but recently a lot of gas is getting stuck in her tummy and were required to extract it by tubing multiple times x day.
We have a few more things going on.. such as the weakness in her legs is getting worse and we've noticed her struggling in new ways that we haven't seen before. Her depression is getting harder to manage (hurry up summertime and pool weather!!) and her anxiety is skyrocketing but all in all.. it's just another day with our Annabelle.... and not to mention a 5yo old going on 15 ;)
... so that brings us here.. to the purpose of today's post.. the update that literally has tears dropping from my chin as I type..
Insurance has again denied all of Annabelle's Genetic Testing. We received our denial letter a few months ago and I immediately appealed. I have appealed thru my employer with HR, I have appealed directly with the insurance company and we have had doctors in the hospital contact and appeal the decisions as well. Despite our frantic efforts at fighting this decisions, we are at a dead end in Annabelle's "Answers for Annabelle" Journey and simply don't know what to do.
As parents, we are grieving.
- We are grieving the absence of a diagnosis that we prayed would give us some answers for our daughter.
- We are grieving the heartless decisions made by a corporate health system that looks at our child by a dollar sign and not a human needing help.
- We are grieving the loss of words when our children ask "Will the boo-boo's go away?" "What will make Annabelle better?" "Will she ALWAYS be in a wheelchair?" "Is Jesus going to let Annabelle die?" "Why can't the doctors fix it?"
We don't have answers for family.. friends.. doctors.. the school during an IEP / 504 meeting. We don't have answers for our children, we don't have answers for recreational sport teams, we don't have answers for one another as we look into our spouses dark eyes of confusion and terror.
We are mourning as a family.
Genetic testing is astronomically expensive and is not affordable for us. The purpose of this blog is to share Annabelle's Journey with those that love, support and pray for her as she moves mountains and overcomes some of the most heroic things a child never should have to. I won't share finances here, but I will share this: supporting, caring for and fighting for a chronically ill child has to be the most financially destructive path a family can endure. We make the best decisions to align our children's lives in a good school, good home, healthy food, kind friends and warm church - those are the foundations that will hold us together regardless what lies ahead. Everything else is to support Annabelle, and let me just say, she has drown us. She is worth every single penny... bc heavens knows she's taken it, but there becomes a balance in which we still have to preserve what is best for our family. Every trip to Cincinnati costs our family no less than $1,000.. last year we traveled to Ohio eight times. EIGHT. That does not include the out-of-pocket wheelchair, medical supply, endless prescriptions, etc. I don't care how much money you make, I don't know anyone that can afford this financial burden.
That being said, we cannot afford to pay cash for Genetic Testing on our daughter. Without this test, our Journey to finding our official diagnosis has ended. . . and we are broken. Numb. Hurt. Utterly terrified. Confused. Nervous and just.. broken.
Our fight for keeping our daughter healthy, comfortable and stable is not over. We will continue to do that each and every day as her parents. We will continue all our care in Cincinnati Children's Hospital as they are truly the best of the best when it comes to managing her Eosinophilic Disease. We will continue to blindly navigate the muddy waters when she relapses, even when we don't know why. We will continue to react and fight when her body mysteriously crashes. And with every step in the future, we will pray that God leads us to safety with our daughter, even if we don't have answers or a 'user manual' on how to keep her healthy. Our faith is being tested but it's getting stronger. Our family is broken but our snuggles are tighter. Our worries are heavier but our priorities are more clear.
I will continue to update and I hope those that have always loved our sweet Annabelle will continue to pray for her and our family. We are blessed to have you walk this journey with us.
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