Thursday, March 29, 2012

He speaks...

Another full day spent at the hospital. Familiarity all around, in faces, and parking structures, in rooms and routine. This is not exactly the type of familiarity that brings comfort. But, for now, it is what it is, and we are walking through it.

Brayden had a horrible night pain and discomfort all night long with little or no relief. He vomited 8 times between 1am and 7am. The medical staff was trying to avoid giving him morphine at all (as suggested by medical team at Mott), as it may exasperate symptoms that are already of concern (high blood pressure, nausea). So, they attempted to give him Toradol for pain, which did nothing. Also, Toradol can cause bleeding and since he began vomiting blood early on yesterday, they stopped giving him this medication. They later tried a drug called Ativan, a relaxant/sedative that has been successfully used with kids undergoing chemotherapy (can help with anti-nausea, and relax the systems of the body a bit). At first, we thought it was helping Brayden, but later realized it wasn't effectively managing his pain and was causing him to feel funny, dizzy, blurriness, etc. So, after vomiting over 40 times yesterday, mostly every 10-15 minutes, and having no real relief of pain for over 24 hours straight, they finally gave him morphine at 10:00 this morning. And it worked. Pain relief for a good solid three hours and, although he has needed a few more doses, he has not thrown up since that first dose at 10am. He's kept down ice chips, a popsicle, ice cream, and watermelon. These are good signs that we are moving in the right direction and the duration of this episode won't be as long as the previous two.

Because of the double vision Brayden has been occasionally experiencing this time around, they are going to do an MRI tomorrow morning and make sure nothing significant is going on in his brain. The double vision may very well be a side effect of one of these two new medications they introduced, but they need to rule out anything more serious.

I must admit, I've struggled a bit today. Fighting a bit of a pity party as the majority of Michigan is getting ready to vacation their Spring Break away. While some are basking in sun and white sand upon their skin, we are cooped up in a room with fluorescent lights and white hospital sheets upon our own. Not that we were able to take a vacation anyway, that seems a distant luxury at this point in our lives...but I'd rather the pendulum not swing to the other extreme. I don't need luxury, but I'd kill for falling somewhere in the about at "normal?" All I know is that if we can't find vacation and rest and sandy beaches in this earthly life, I better have a mansion parked right outside the ocean in heaven...where rest and beauty and luxury, without worry or pain, can be enjoyed for an eternity.

I was on the brink of meltdown anyway, and fought these emotions hard. With this in mind, the GI specialist came in this afternoon and shortly into our conversation he said "Expect this every month. Most kids with this are admitted about once a month, some more." And in a kind, yet certain voice, he said, "You will be back..." The weight of his words fell like a stack of bricks upon my chest. Everything he immediately said after that became hazy, and I felt that Texas-sized lump in my throat and fought back hard sobs, desperately trying to keep my composure and carefully trying to soak in everything he was telling me. Uninvited and uncontrollable, slow and steady tears fell from my eyes throughout our entire conversation. I wiped each one away as I struggled to push these fears aside for the moment, to fully listen and comprehend all he was saying. Once the Doctor left the room I had to sneak into Brayden's bathroom just to breathe. To let out a quick sob. Or two. Or three. And recompose. My mind kept racing back to his first words..."Expect this every month." Hospitalization and this nightmare monthly? Helplessly watching my son go through this misery monthly? This unexpected, can happen "whenever and wherever and last however long" nightmare? Oh, the reality of this takes my breath away. Disheartening is an understatement. It's crushing.

Only 2% of the population has Cyclic Vomiting Syndrome. An even smaller, tinier, almost minuscule amount of this population have Sato Syndrome (a more severe variant of CVS with the hypertension and rapid heart rate component). It is believed that Brayden is in this select few. Our GI Specialist suggested that we consult with a Doctor at the University of Milwaukee. He is a leading expert in Sato Syndrome (as much as one can is so very rare and research on it has been limited to the past 10 years alone). He has more experience with Sato Syndrome cases than anyone else in the country (and has at least treated 34 patients). Because this is a syndrome there are numerous symptoms that play into of the contributing factors is the elevation of certain hormones. It is thought that the brain of a person with Sato Syndrome overproduces these hormones. So, beginning this evening they are doing a 24 hour urine collection to see if there is an elevation of these hormones. They also drew more blood to check for elevated hormones. Our GI Doctor is hoping that if these hormones are elevated, it'll present a greater case to bring to this Doctor in Milwaukee that substantiates that Brayden indeed has Sato Syndrome and can lead us to further specialized care.

You may be wondering why they are backtracking and testing to confirm Brayden's diagnosis. Although he was diagnosed with this at Mott, that diagnosis didn't come until the day of discharge. Prior to this discharge day, the GI department (unassuming to us) had not yet been consulted regarding Brayden's case (hence, the long period of waiting with no answers). So, the head of the GI Department at Mott made this diagnosis of Brayden based on Brayden's medical history versus actually seeing Brayden in the midst of an episode or taking further tests to confirm Sato Syndrome.

Our GI specialist here suggests that when Brayden is better we travel to Milwaukee to consult with this Sato Syndrome expert. And then perhaps we will be able to come up with a better treatment and management plan to help Brayden during episodes and in the time in between. If this Milwaukee Doctor takes Brayden's case, then anytime he has a future episode, the doctors here in Michigan will be able to directly consult with this Doctor for advice and protocol, etc.

So, we are staying put in this hospital for at least another full day or two. I'm not sure what is tougher to watch, my son suffering physically or seeing the crushing of his spirit as he begs to go home and is told it is not going to happen.

Another whirlwind of a day. Heartsick. Heavy. Numb.

And then He speaks.

A short while after the GI team left, the pediatric cardiology team entered the room. Because of the high blood pressure, they had a heart ultrasound performed today to see if there looks to be any long term damage to his heart due to this hypertension. I hadn't even had a chance to wipe down my tear stained cheeks when they began this test. The cardiologist was pointing out and explaining to us everything the ultrasound technician was doing. Everything looked perfect and he said Brayden had an "olympic heart." This is the first real good news we've heard in a while, even if we weren't suspecting there to be heart issues, it was still nice to have a positive report. The cardiologist asked us if we knew what our last name meant in German, (which we did) "Writer." How appropriate for me to attain a last name through marriage with this writing and the passion to do so courses through my very veins as if it's as necessary to my survival as the blood that flows within.

The cardiologist then stated, " you know what this name means in Hebrew? It derives from the word 'bare' and it means 'healthy'...God should bless him and he should be healthy." At that moment I really felt like God was speaking to me through this Doctor (whether he knew it or not.) I told the Doctor this is exactly what we've been praying for and that God would take this illness completely away from Brayden. He told me he would be praying for this too. Did you catch this? Never before have I ever encountered a Doctor that A.) Mixes medicine with religion or B.) Out of the blue, offers to pray for me and/or my family. Before he left our room he made a point again to tell me he would be praying for Brayden. To me it felt like God was saying, I know what they are telling you. I know what you are fearing. But, I am God. I trump medical reasoning and I still remain in control despite what evidence you may hear or see before you.

And so I cling to this knowledge of truth as the world and it's logic sometimes, even without intention, tries to stifle out all hope. There is a God who is bigger than these issues. A God who knows the answers even when we don't. A God who works and moves even when we can't see Him. A God who comes, not always through rock or rose, but through people and encounters and gently reminds us that He is still here in the midst of our brokenness and chaos. He is a God who sees. A God who hears. A God who leads in, leads through, and leads out. A God who heals and turns ashes into beauty. A God who is for us.

In the middle of our whirlwind day, where medicine and science and technology try to make sense of everything, He spoke.
And I received.


  1. how beautiful...that cardiologist. i have never seen a cardiologist come to the bedside for an echo. ever. and the way he spoke to you, knew the meanings of your names...seriously, that was nothing short of a 'God'-encounter. after your meeting with the GI doctor, how merciful and loving of our God to rush to bring you comfort. He is with you, amanda. He is FOR you. He will see Brayden through this. And he WILL work this for Brayden's good. He promises.
    Hang on to your Daddy. Hang on with your whole heart. He loves you so much.

  2. At St Joe's (granted it's a Catholic hospital) the doctor that delivered Sara came back to our room later in the day after she passed to pray with us. Our own OB prayed with us at each doctor visit. To experience something tragic with strangers who have the same belief in God is powerful. The nurses and doctors in the room immediately after her birth all quietly told us that the presence of God was felt in our room.....all by doctors. scientists. Who, through Christ, can also know that ultimately it's His power that heals. I'm so glad you have a doctor who knows :) May God bless you all!!! Praying daily!