Hope that is seen is not hope

To read Part 1 of Hope’s story, READ THIS POST!

When Hope was about 5 weeks old, we took her to the ER with respiratory distress. She had been bottle-feeding fine for a couple weeks, but had all of the sudden started aspirating over the previous 24 hours. One of the first things they did was a CT scan to check for a shunt malfunction. The shunt was fine. At some point later that night, a doctor mentioned Chiari. Something we didn’t even know she had and certainly didn’t know what it was. We educated ourselves, but were told many times that neither of those seemed to be the problem.

After a long hospital stay at MCG where doctors – which included several residents, surgeons, interns, attendings, specialists, etc – spent 5.5 weeks chasing rabbit trails and treating symptoms without looking for a real overall cause, we came home with a trach, a feeding tube, a bunch of equipment, home nurses and more questions than answers.

Our pediatrician was not at all pleased with the answers we did or did not get. Having a grown child of his own with Spina Bifida, he has became one of Hope’s greatest advocates. We are very thankful that God placed him in our path (that is another story, but we have not doubt that it was providential). He suggested we seek a second opinion on her condition from a pediatric neurosurgeon. He was fairly convinced that her Chiari II was the major factor in most, if not all, of her problems. We had the same feeling all along.

According to The Spina Bifida AssocitationNewborns and young infants with [symptomatic Chiari] tend to present difficulty swallowing that leads to poor feeding, weak or poor cry, inspiratory stridor (noise on breathing in) frequently exacerbated by crying, arching of the head and possibly facial weakness, among others. When severe, the symptoms may result in insufficient breathing to maintain life. (Emphasis added). Additionally, other sources also list an inability to gain weight, periods of apnea, and aspiration. All symptoms she has/had. The doctors also knew she had the Chiari malformation, so why was everyone so insistent that it’s NOT Chiari? Seems like common sense, right? (I mean, ever heard of Occam’s Razor? “The explanation requiring the fewest assumptions is most likely to be correct.”) Apparently not. Like I said, they just wanted to treat symptoms and spend a week worrying about acid reflux. Frustrating to say the least. She had CT scans, EEGs, sleep studies. All along we were told she’s fine. Her shunt is working fine. It’s not the Chiari.

Toward the end of our stay, at the urging of our pediatrician and with the neurologist finally on board, they finally did an MRI. However, the neurologist, radio-neurologist and neurosurgeon could not agree on the results. The neurologist was the only one that still wasn’t confident that “all was well.” The day before we were discharged, an MRA was performed – an MRI with contrast. We went home the next day not knowing the results.

A week later, we saw our pediatrician and he began the process of finding a pediatric neurosurgeon for a second opinion. Though we’d been in what is touted as an amazing children’s hospital, there was no pediatric neurosurgeon. (Nor was our experience in this “great hospital” all that wonderful).

Two days after that, we were back in the hospital with a trach infection. Back in the same hospital…as much as I didn’t want to be there. We were there 5 days basically waiting for cultures to grow and make sure she was on the correct antibiotics. The last day of that visit, someone finally shared the MRA results with us. Lo and behold, CSF (spinal fluid) was not flowing as it should be around the cerebellum and brain stem….the location of the Chiari. The neurosurgeon recommended we take her to see a pediatric neurosurgeon to determine if the surgery is necessary…something we were already planning to do.

It was thought that we would have to travel to Atlanta or Charleston. It turns out the chair of the neurosurgery department at USC in Columbia is a pediatric neurosurgeon which saved us a longer trip. A blessing, for sure. We made the 1-hour trip to visit the pediatric neurosurgeon in Columbia just this past Thursday afternoon.

We were his last appointment of the day. We sat in his personal office, my husband and I with our little one, for at least an hour. He proceeded to tell us that, yes, indeed, our tiny little 6 lb and some change, 3 month old baby girl needed this serious Chiari decompression surgery in which they would remove the top 2 vertebrae from her spine/skull in order to alleviate the pressure. He was honest. He was blunt. The surgery is dangerous. Not doing the surgery is dangerous too. He cited statistics. Pulled out textbooks. Referred to previous surgeries he’d performed. He told us the difficult truth. The symptomatic Chiari malformation is currently the leading cause of death in the Spina Bifida population, particularly in early life (The Spina Bifida Association).

The first part of the process is a shunt revision. Always make sure the shunt is working properly before doing the decompression. This is textbook. Of course, she’s had multiple CT scans. Her shunt is working properly. Nevertheless, the rules say, check the shunt….and while he’s in there, he’s going to replace most of it anyway. As my husband explained it, “It’s like taking your engine apart. While you’re in there, you might as well replace the seals.” So we scheduled the shunt revision for the following Tuesday and told him we’ll have a decision about the decompression surgery by that time. We need time to process, think, discuss and, most of all, PRAY.

Before leaving the hospital, he sent us for a new CT scan and x-ray to check placement and prepare for surgery.

The ride home was…quiet. The first few hours at home were much of the same. We tried to talk about it, but neither of us could remember much of the details. We were numb. We were overwhelmed. We were scared. We couldn’t even really understand what we’d been told. We’d asked every question we could think of, but left with still more questions. I finally started Googling. Thank God for Google. After much searching, I finally found the link that I’ve linked to several times above. It clarified everything he had told us in simple language that our very weary brains could understand. It was clear. It was what we had already known before we spoke with him, but had become muddled with fear and confusion. Satan’s handiwork, no doubt.

We talked. We prayed. We prayed for her. Over her. Together. Separately. We finally went to bed at 1:30am.

I awoke in the morning…praying. I read scripture. I prayed more. I wanted an answer…a very specific one. But I  also wanted to release my fear. I didn’t want to make a decision out of fear.

Everything I read, everything I felt can be summed up simply. “I’ve got this.” That’s what I was hearing. He’s in control. We’re not…something that is hard to admit at times. Ultimately, we have no control over her life or death….no matter what our decision. That is in His hands….so we let go. We began to trust. And we felt some peace.

We spoke with my parents, and they confirmed what we were already feeling. Do the surgery. You’ve known this is the problem. We’ve been praying for someone to come along with real answers. God has sent that person.

I think we had made our decision. We went about our day.

Around 4:15 pm, the phone rings. It’s the neurosurgeon. Not his office. It’s him. He’s just read the CT scan…by the urgency in his voice, just then. It appears her shunt is malfunctioning. What? Yeah, her shunt is malfunctioning. “What does that mean?”

“Most Chiari symptoms are actually shunt malfunctions.” His words.

It could have been malfunctioning all along, or just yesterday (though I think it was longer than that at least). There’s no way to know.

We are excited. Excited that her shunt is malfunctioning?! Yes! Because that could solve all her problems. Do we know for sure? No. But it’s a HOPE to hold onto.

So we go forward with the shunt revision, but rather than doing a Chiari decompression soon after, we will wait. We will wait, hope and pray that this is the answer. That it’s that simple. That this was the problem all along. Something we were repeatedly assured was not a problem. Because according to him, a shunt can look fine on the scans and still be malfunctioning. Hmm.

He decided it was best for us to bring her on to the hospital last night (Friday) even though surgery is not scheduled until Tuesday. Just in case anything else were to go wrong since we live an hour away. We saw him this morning. He hopes to move surgery up to Monday.

Praise God for well-trained doctors. For doctors who advocate. For doctors who look for real answers and pay attention to the patient. Praise God.

I’m actually excited about surgery. Excited. That’s crazy, right? But this could be the answer. It might not be, but that’s what hope is all about right? We have to hope. If we didn’t continue to hope….well, this journey would be much different.

Romans 12:12 – Rejoice in HOPE, be patient in tribulation, be constant in prayer.

Update: She had her surgery on Sunday. It went fine. Read later posts for further update.


2 comments on “Hope that is seen is not hope

  1. Precious blog, Donna Jo! Brings back so many memories of our journey with Caleb when he was 6 years old and the doctors couldn’t agree on his diagnosis after he began to have seizures. I was sitting in the waiting room at the hospital one day when Caleb was in ICU and begged the Lord for answers. I even said, “If you could just sit down with me face to face and tell me what to do.” There was a Gideon Bible on the table and when I opened it, the first verse I saw was Psalm 46:1: “God is our refuge and strength, a very present help in time of trouble.” I knew God was speaking to my heart that he was indeed our VERY PRESENT HELP! That He was with us. That began our journey of many trips to the doctor, many MRI’s and eventually brain surgery when Caleb was 20. He’s now 30 and still takes meds for his seizures, but through it all God has been faithful and blessed us beyond measure. I pray the peace of God that transcends all understanding will guard your heart and mind in Christ Jesus! I pray the shunt surgery goes well. God is your VERY PRESENT HELP! Bless you!

    • fullymothering says:

      You encouragement is a blessing to us. I can’t count the times the Lord has led me to the perfect passage for my needs. Thank you for sharing your story with me. It’s always helpful to know someone else can relate in some way.

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