All Over Again -- Catastrophic Part 4

Here we are again.

And may I just say, the support we have received has touched us and blessed us immensely. Thank you.

But there's still so far to go.

As encouraging as it is to know we have people ready to rally, repeating the complications of our circumstance can cause emotional exhaustion. So here we are to lay it out and let you in. Because we need you. We will not make it without you.

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Approximately twelve minutes after I arrived at work on Saturday night, Caleb calls me. I ignore it because I'm sitting in a meeting. A few minutes later, I listen to his message.

"Hey babe; my fever is spiking. So is the redness, tenderness, swelling, and pain. I'll be at the ER when you get done with church tonight. Seth is taking me there now."

God bless Seth Barker.

Despite the fact that Caleb showed every single sign the doctors had told us all along would be "major red flags for infection," I felt strangely calm. Just over a year before, Caleb had driven me to the ER for appendicitis. It was my first time as a patient in the hospital since I was six years old, and I sobbed the whole way there. I also nearly passed out each time they started an IV, fought nausea when they pushed drugs through said IVs, and cried all over again when they suggested Caleb could not stay in my room with me overnight.

I have come a long way since then. Funny how trauma does that.

I immediately told my coworkers I needed to leave to meet Caleb at the hospital. I nearly laughed as I left. I went home, changed into my favorite hospital sweatpants (because a year of this will teach you a thing or two), packed a small bag in case we ended up there overnight, and stopped for a drive-through cheeseburger on the way. At this point, I was not yet three months pregnant, and cheeseburgers were one of the few things my changing body and growing baby could agree upon. The panic, anxiety, and trembling these visits had brought me the year before were nowhere to be found.

A variety of nurses, PAs, and other hospital personnel rotated through his room over the next few hours. They all had a similar look on their faces: confusion marries deep concern. I could feel their thoughts as they stared at Caleb's lower right leg. His combination of symptoms was "alarming," and they clearly indicated a raging infection underneath the skin.

Problem was, his test results were less clear about what was happening beneath the surface. A culture on fluid pulled from his ankle joint, blood tests, an ultrasound, and a CT scan suggested an infection was possible, but they gave no clearer answers. With mild worry written all over their faces, they prescribed Caleb an oral antibiotic and sent him home.

When we followed up with a PA later that week, he informed us that the personnel in Grand Junction would not be able to handle a solution to whatever problem was brewing in Caleb's leg. We were being transferred to a team in Denver.

I really should say teams. A few weeks later, we drove to Aurora, CO for a series of appointments with a plastic surgeon, an infectious disease specialist, and an orthopedic surgeon. Their comments and conclusions brought simlatneous relief at having answers and newfound overwhelm at the extent of the issues we were now facing. Here are their reports as they unfolded in each appointment that day in June:

Plastic Surgery

After nearly thirty minutes waiting in a patient room, a cheery doctor in teal scrubs bursts through the door. His black hair is slicked back, and his smile is bright. He introduces himself and shakes our hands before jumping right in.

"Here's why I think I'm being brought in on your case, Caleb. There is tissue that has sustained a tremendous amount of trauma in the last year, and there is concern with its ability to heal should it sustain more. And it needs to sustain more. So let's see what we're working with."

He grabs his doppler and holds Caleb's ankle, propping it on his knee while he listens for blood flow. He proceeds to rub and tap every part of Caleb's ankle, foot, and lower leg, repeatedly asking, "Can you feel that?"

"Unfortunately," he begins again, "the vessel that supplies the top of your foot with blood is not working. That's why you have numbness up here and why there is discoloration. Your other two vessels supplying blood down here are working. My job is to figure out if we can safely tap into one of them in this next surgery so we can return bloos flow to your new tissue. We have to evaluate this because loss of all vessels would mean no more blood in your lower leg which would mean we have to amputate. But that's probably not more than a 5% chance."

Amputate? That's the first time in a year that word has come up.

It's ALSO the first time in a year we've heard anything about blood flow issues. Why have we never heard this before?

"So here's what I would do," he continues. He uses his fingers to draw imaginary lines around all of the scar tissue on Caleb's shin. "I'm going to cut all of that off. It's essentially dead. Then I'll do a major flap. I'll take tissue from the thigh and cover this whole section. We'll need to get it blood flow."

Ew. That's far more than I was anticipating.

"So you'll need 5-7 days in the ICU after that procedure so that you can receive one-on-one care. We need to be sure your body acepts the tissue, no infections arise, blood flow works, etc. Then we'll keep you under observation as a regular hospital patient for up to 5 days after that. You'll 2-3 hours of skin rehab every day for up to a month once you go home."

I'm sorry; What is skin rehab? I didn't ask. There was so much overload already.

We were only one appointment in, and this was already far more than we had anticipated.

This surgery has been rescheduled for September 23rd.

Infectious Disease

"Hey Caleb! I've been talking with your doctors from this last year, and I feel very confident I know what this problem is."

The PA could not have set my heart at ease more in a single moment.

"During your surgery on Halloween last year, Dr. Cota took two cultures. One of them grew. He had assumed it was a surface contaminant, but that's why he gave you the two weeks of oral antibiotics just to be safe. I believe this was not a contaminant from the surface but that this skin bacteria was in your leg. It has now been growing for eight months and finally hit a tipping point. Everything you've described with sudden pain and dramatic symptoms overnight is classic for how a bacteria like this would behave and the problems it would cause."

I'm sorry; You mean we could have done IV antibiotics eight months ago and solved this issue?

She continues: "I'm very confident we can eradicate this bacteria from your lower leg. The antibiotics you're on will help keep a bandaid on this bacteria, but it's not a solution for healing. Here's what we'll need to do: I'm going to suggest a total hardward removal if the orthopedic surgeon thinks that's feasible and safe. Two weeeks before that surgery, stop taking the antibiotic. We want your leg to be angry when you come in. We will take two cultures from the hardware and let them grow for a couple of days to be sure we're attacking the right thing. Then we'll clean out everything inside there, hopefully have no hardware left, treat your leg with antibiotics inside, and also start a 6-week IV antibiotic treatment through a pickline. You can administer it to yourself at home, or we can arrange to have a nurse come by every day."

Six weeks with soemthing attached to the outside of Caleb's body? That will be miserable for him. He's done that in varying ways already.

I love her confidence, and she answered all of our questions, but I'm left with a feeling that care for Caleb this time around will be even more intense than last year.

These surgeries have been rescheduled for September 16th and 19th.

Orthopedic Surgery

"Caleb, you're with the best. I am confident we can solve these issues and get your body healed."

I like this guy. He's matter-of-fact but confident in a way that's absent of arrogance. Facts are, he's the best.

"We've got a couple of issues we'll have to solve. First is the infection. It's no wonder you haven't seen the healing they expected for you. Your body can't heal when it's infected. So we'll need to schedule several debridements to remove the hardware and eradicate the infection."

Debridements? I look it up. It signifies the removal of dead, damaged, or infected tissue.

Ah, yes. He has lots of that.

"Of course, with all of the hardware gone, you'll be left with a bunch of holes in your bone. We'll need to put some kind of external fixator on to secure your lower leg while it's in such a weak, compromised condition."

Another ex fix? More poles sticking out of Caleb's body?

He carries on with the news that shocks us the most deeply. "Then depending on how you heal from this first set of surgeries, we'll need to bring you back to fix your ankle."

I'm sorry; What? I thought this was fixing the ankle?

We must have looked as confused as we felt. He pulled up the x-rays to show what we had never seen on an x-ray before.

"Your leg is crooked. It's great that your ankle got reconstructed, but it hasn't healed right. It's like you've got brand new wheels that aren't adjusted. It might work for a little while, but if you keep going on it, you're going to destroy it all."

I don't want to even imagine the measures they will have to take to straighten a crooked lower leg.

"We're having a baby in December," Caleb says. "How long is all of this going to take?"

The surgeon and his team beam at us. "Congratulations! I can't say exactly, but I would guess we'll be done with surgeries by then, but you will still be on crutches." Then he adds, "I'm making you non-weight bearing effective immediately. I'll get you a knee scooter prescribed."

Perhaps that was the most crushing blow for Caleb. No more walking? For probably six more months? His spirits deflate at the news.

The surgeon estimates that the reconstructive surgery will happen three months after the first surgery. That leaves us at mid-December. We are HAVING A BABY in mid-December, so that will not work for us. Does that mean Caleb suffers with an external fixator for an extra month? Is it possible he could heal particularly well and have it in November instead?

We don't know. And that is perhaps the most crushing blow for me.

Help

I am beyond thrilled to be expecting! The joy we have experienced as God has grown this precious life within my womb has brought us more happy tears than anything else in life. Her closet is already full of pink clothes. Her parents adore her and pray for her daily.

But this is not what I had imagined. I am barely able to keep up with caring for myself. Am I eating enough? Am I healthy enough? How much time is too much time on my feet? I thought my husband would spend nine months caring for me through pregnancy.

Now I not only have to take care of myself, but the daily tasks of home life are on my shoulders once again. Have you ever tried carrying a bowl of cereal to the table while also on crutches? It doesn't work. So now I also need to be a full-time caregiver for my husband.

My poor husband. He wants to be free. He wants to adventure alongside friends who have traveled and hiked and camped together without him. They have done AMAZING at working a Caleb-friendly plan into every adventure possible, but that doesn't mean there aren't challenges or relational changes.

He wants to be a provider, and now he's out of work for at least six more months. He wants to take care of me, but doing so would destroy his chances of healing with the ankle he has. He wants to help with errands, but he's not supposed to drive. He wants to have a life with more options than sitting at home alone all day.

The details immediately overwhelmed me. I walked along the creek that ran by our hotel after Caleb's appointments that day in June, and I struggled to breathe. Tears poured endlessly and breath came laboriously. Lily needs you to calm down, I kept thinking to myself. Feelings of stress and overwhelm are not just bad for me, but for the life within me too.

Caleb will spend 2-3 weeks in the hospital for this first round of surgeries in September. Follow-up appointments will happen on Thursdays for a couple of weeks after the initial surgeries. Who will take him to those appointments? Not just the ones in Denver, but the ones he'll need every day in Grand Junction as he goes through "skin rehab" and gets antibiotic treatment?

Gasoline. Lodging. Food. Time away from work. An incapacitated, six-foot-three husband. A baby on the way and dwindling energy.

Am I supposed to be able to handle this, Lord?

Obviously not. It is more than I can handle. God gives us more than we can handle. But He never leaves us there alone.

All that to say: we need you. We need your presence on our giant couch eating popcorn and watching a movie so Caleb knows he's not alone. I need a second pair of hands around my home and in my life. I need some time I can spend by myself so I don't lose my mind. I'll need meals in my freezer for the days I don't have it in me to cook after work. I commit to being honest and asking for specific help in the moments I know I'll need it.

I'll also add that Caleb's sister has put together a GoFundMe for us. We have been wildly blessed so far, and we just want to say thank you so much. It's overwhelming to think of the expenses we could run into. If those roadblocks come and we need that too, I commit to saying the word. Until then, this is here to help fund what we do know we'll have to cover: https://www.gofundme.com/f/caleb-and-rylees-medical-and-life-expenses?member=35639897&sharetype=teams&utm_campaign=natman_sharesheet_dash&utm_medium=customer&utm_source=facebook&fbclid=IwZXh0bgNhZW0CMTEAAR2JX20ChnkinYbmEDWNRkbGWPGf95kLluCb3mf0PKkrr1sHAm__-90xqtM_aem_uS9cxlgTxhFQlAsvmWzZdQ

Prayer Requests

• Pray that Caleb's body has no issues accepting the tissue transfer from his thigh to his shin.

• Pray HARD against any kind of infection during the procedure or following the skin flap.

• Pray for no surgical mishaps. Caleb feels like he has been the 5% through this whole expereince. He has had every complication they warned could happen, and the fear is that this time the complication would result in amputation. We do not want to end up there.

• Pray for eradication of the bacteria and no new bacterial introductions.

• Pray for a timeline that does not require a postponing of Caleb's surgeries any farther!

• Pray that reconstruction can happen before our baby girl arrives in December.

• Pray for a healthy baby and smooth pregnancy!

• Pray for the details of transportation to work out in advance as we will need multiple trips to Denver over the coming months. There will come a time when I am too pregnant to make the trip, and there are some days I have firm commitments in Grand Junction. Medical transportation is not something we ahve had to deal with yet, and Caleb's case manager is hard to get ahold of when we have questions like this.

• Pray for an insurance solution for Rylee and baby Lily. Neither of us have covered care at the momentm and I don't qualify for anything I have looked into so far. The one insurance provider I received a quote from asked for 25% percent of my monthly income which is absolutely out of the question. I need a solution.

• Pray for clear communication from Caleb's case manager through worker's comp so we are not left confused and holding stacks of bills.