Ok…..well….You know, I really wanted to sit here and write a fun rhyme about our trip today. Because today is a good day. And because being creative is something that keeps me sane. But honestly I am tired and ready for bed. We had four appointments and a pre-op visit today. That meant four check-ins, four escorts to our locations within the hospital, four waiting rooms, for weigh-ins, four runs downs of Avacake's medical records, and four explanations of what will happen tomorrow during Gracie's three separate procedures. And with the odds of all of those people whom I interacted with, in the later part of their work days, you would think that we would have come in contact with someone who was not in a good mood. And yet, EVERY. SINGLE. PERSON, was kind, patient, and focused on my daughter. They interacted with her. They encouraged her. They gave her things to keep her occupied during this very boring day. They answered my questions and if they didn't know the answers they got someone who did. They loved on us, and treated us like royalty.
There were several times that we needed to call our pediatricians office in OKC and talk to our referrals manager for one code or another and each and every time she took our call immediately, and did anything and everything that she could to help. We spoke to our pediatrician multiple times, on her day off, on her personal cell phone. We were surrounded by the love of medical experts that have not only studied books and earned advanced degrees but have studied my daughter and made themselves experts on her.
We have been prayed over by our medical teams, and prayed for by countless blog and Facebook followers, friends, and family. We have felt that love and those prayers. My husband was given a ride to and from work today, our youngest was picked up after half-day pre-k from one of my best friends who loves my kids like her own, and Brendan has off tomorrow which means he will have the house to himself in the morning when Liam is in Pre-k and that he will be doing my regular routine (minus Avacake) without me. He always makes our separations fun for the kids and I am so thankful to have such a hands-on father for my kids!! (maybe I will come home to a primed bathroom? hint HINT lol)
Anyway, back to the regularly scheduled program.... These procedures are in no way as dangerous as the neuro-surgery she had in November, however tomorrow will be a very long day of three surgical procedures (meaning general anesthesia for three separate procedures in three separate areas of the hospital) all without coming out of sedation. She will be intubated and monitored very closely as she moves from one team to the next. And with any surgery there are risks.
At 6am we will be in pre-op getting IV's and meds. 7:30am CST is when she will go under general anesthesia for a T3 MRI. This will be the easiest of the procedures but intubating and putting a person with heart issues under anesthesia is risky. She will then move to get her g-tube put in (they switched the order as this was supposed to happen last but this is a HUGE answer to prayer) and from there they will move her to get her heart monitor (a loop recorder) inserted. (She should be done with all of this by around noon-2pm).
The biggest risk for Avagrace is of course her heart. Aside from that the only other concern we have is that she will get some sort of infection in or around the devices that are being put in. Her body has always healed so fast that she has an actual over healing of sorts. The being said, we had to change the way we will insert the g-tube because of the scar tissue and history of her previous stomach surgery that she had as an infant. (and yikes, I have not had to take care of a g-tube for 9 years and it will definitely be a re-learning experience). The area in which the loop recorder is being placed is very close to were her VNS batter pack was. So, we are hoping that the scar tissue there will not be an issue.
All this is to say that first and foremost we covet and appreciate your prayers as tomorrow will be a long day for our girl! And secondly, that this is something for voters to consider. Us leaving our doctors is leaving the experts of Avagrace. And this blog is not even half of our experts. We have speech therapists who is as close as family, we have our physical and occupational therapists whom we love and adore. We have nurses in several different hospitals that we look forward to seeing when we are inpatient. We also have a phlebotomist that has NEVER needed to stick Gracie more than once and she is always excited to see our girl. When a family of a special needs kiddo, especially ones with such MAJOR regular needs, is forced to move to another state/country just so that they can get the medication that their entire team of medical professionals recommends to SAVE. HER. LIFE. and get her off of Hospice…..well that is not only a terrifying thing as a parent, but it is opening our girl up for errors in care, lack of care, and more. Aside from that it will make it that we are without oxygen, suction, pulse-ox machines, and other "Durable Medical Equipment" that we rent because we will have to transfer to the state, then transfer insurance, then wait for the new insurance to be turned on, then wait for the referral for these things to be approved in our new state, and then wait for them to bring out the equipment and set it up. This could take weeks or even months. Meanwhile, we will have to take her to the ER every time we need these things and that will open her up to more infection which leads to more seizures and more needed ER trips….it is a terrible cycle.
These are not things that I am complaining about. These are things that have to happen to fight for my daughter. But there are things that voters, politicians, journalists, lobbyists, and so many others need to think about. This is why we need ALL STATES to approve cannabis and medical marijuana so that our children can stay safe and with the doctors that know them best.
And just to drive my plea home I will share a personal story as a final note. You see, we had a fabulous doctor in Oklahoma, whom we love and miss terribly. This doctor was the soft hearted man whom loved my daughter so much that he said he would name his first daughter after her. He was the doctor that I sat across from during my Gracies "D" day (diagnosis day). But life happens and he had to move to a different state. So in comes a new doctor to the office that we had visited so frequently for 2 years. This new doctor decided that the medicines that Avagrace was on were not the medicines that he thought that she should be on. So he changed her medicines multiple times (against my repeated attempt to keep her on her medications). BUT, he was a leading expert in my daughters diagnosis. And so I trusted (at least on the outside). But after many months of continued decline and no action and no "fighting for my girl" I finally got approved to come back to Cook Childrens as a "second opinion" and it turned out that I had every right to be worried and every right to doubt. Medicines were changed again and progress was made. But at the end of the day, no matter what medicine is prescribed there has to be a healthy balance of the right doctors and medicine and if you don't have it, you won't have the quality of care that is needed to battle rare or challenging conditions.
I really pray that God will make a way for every child to have access to the medicine that has proven itself time and time again. I also pray that my peace is coming from the Lord and that when we move, and others move, we will have an awesome team that can be equal to this team, and that when we move her equipment and prescriptions and deal with the insurance red-tape, it will be a sweet and easy transition.
So this is yet again another long blog and if you got to then end leave me a comment, I would love to read them while I am in the waiting room trying not to worry tomorrow. Thank you all for loving my family! We couldn't do it without you!