Chesed

Liam had to be NPO (no food or drink) after midnight, but his surgery wasn’t scheduled until 3:15. He and I needed to be at pre-op by 1:15. I hate when kids don’t get surgery first thing in the morning because they are even stricter about no clear fluids with kids than adults, but when your surgery is an add on it can’t be helped.

We got an Uber to get there and it was like God gave us a hug. The driver showed up in a minivan with a wheelchair lift! It was amazing! He simply wheeled Liam in and strapped his chair.

The first surgeries of the day went much, much longer than expected and Liam didn’t go to the OR until 7:30! That is a long time to go without food and water when you’re a kid and a very long time to hang out in a pre-op bed.

When anesthesia came I asked if he’s getting an epidural and he said, “I don’t know. I don’t see one slated.” I assumed the surgery must not be very intensive. They had told me I could stay since it was under three hours; but Liam said it made no difference to him so I opted to go home after the nurse liaison promised me repeatedly I’d be allowed back in.

We ate dinner, had a prayer meeting for Liam, and gave the kids baths and tucked them into bed. It is both a gift and heartbreak that this has become so normal for the little ones. They hardly know a life without Liam in and out of the hospital and living life mostly on the recliner and a mama who is there and not there in about equal parts.

But there are smiles and minutes of normal in our days because of them. Bella prayed that Liam’s leg wouldn’t look like a peanut anymore. 🙂

Our Uber driver was as astounded by our five acres of property in the country as we are by the highrises. He asked a lot about Liam’s leg and kept saying, “It’s going to be fine. You’re in the the place. Everyone comes here, even from all over the world. You’re in the right place.” And then he went back to our life in the country. “But you said you drive everywhere in the country instead of walking? How are you so skinny? You drive and you’re skinny? Country women are fat.” I burst out laughing. Big house and five kids keep after, I said.

Hard as it is for Liam, I am honestly grateful for this experience of city living for our kids. I wish it weren’t happening now because it is so incredibly hard on him; but I am so thankful their worlds are being expanded. I think we all become more gracious, well-rounded people the wider our life experiences are. We’re far less likely to see things only from our own narrow perspective, to be broken of some of our provincialism. In these days of not being able to travel, I’m so glad our kids get to experience a vastly different corner of America. I only wish Liam were whole and well and we could explore the city in wild adventures.

Surgery took much longer than the two hours they said and finally I told David just to take me back. When I got there they wouldn’t let me in because one of the patients had locked himself in a bathroom near the urgicare and fired a gun. Much of the hospital was on lockdown. Finally his surgery was over and the nurse came down to get me.

I went to the PACU (only later did I realize what a gift that was! Last time I wasn’t allowed) around 11:30 to find a child who was in horrific pain. They were only giving him fentanyl which wears off in five minutes and he was arching his back and crying, “Help me.” It was HORRIBLE. Finally the nurse from the next room came over to prod his nurses and they went to find the doctors and gave him dilaudid. He finally relaxed and got quiet. When they went on lunch break around 1:30 he came over to me, introduced himself and said, “How long have you been up?” I don’t know. Maybe since 7:30. “I’m going to go get you a stretcher so you can sleep.” I told him I’d be fine, but he insisted and said he’d get it right next to Liam so I could still be with him. He rearranged the room to get a stretcher right next to Liam. I almost cried. These days are stretched so thin that the smallest acts of kindness simply reduce me to tears.

When we got upstairs the nurse said, “Where are you from?” I said, “Virginia,” and Liam said, “How did you know we’re not from here?”

“Because your mom is way too nice.” She got the doctors to start a PCA for pain, but the dose wasn’t nearly high enough and Liam had so much pain overnight.

The next morning the pain team apologized and said, “I’m so sorry. This should never have happened. We never put our pediatric patients through a surgery like this without and epidural.”

I said he’s still in pain and she said, “I know. I’m taking over.” The day shift nurse told me she called the patient reps and they would call. “Please make sure you speak to them,” she said.

Hopefully that will never, ever happen again. Not to Liam. Not to any child.

I am the God who stirs up the sea so that it’s waves roar. Isaiah 51:15

God watched His son suffer incomprehensibly. He knows our pain. And He has showed us that He can bring incredible redemption through suffering.

I always think of God as bringing peace and protection. Or I remember the story of Jesus who calmed an angry sea with three words. When I read this verse in Isaiah, it helps me remember that God is also in the storm. He isn’t missing or looking the other way just because the storm gets more violent.

With man, this is impossible. But with God, all things are possible. — Jesus

I feel this sureness that no matter what happens to Liam, he is safe with Jesus. That is my bedrock of comfort underneath all of this. How my heart longs for him to be healed completely. It’s not mine to choose.

Our lives, the lives of our children … they are a gift. Every day is a gift. Our desires and longings are legitimate and divinely inspired and we should hold onto them. But they aren’t rights. We can support our bodies to live and live well, but no one has ever gotten to choose to live longer than God gives them breath.

No matter how many times we say those words, we don’t really comprehend them until we are faced with their reality. Today I am grateful for this day. This gift.

He has borne our sorrows. He has carried our grief.

It is the crushing things in life that have, in the long run, enlarged and softened my heart. These things that break us, that crush our spirits — they do not consume us. Our edges are etched and shaped in fire as the smoke blinds us, stinging our eyes, making it hard to breathe, sometimes temporarily paralyzing us with helplessness. But they do not consume us. In the end, we will not be ashes.

Fear not, for I have redeemed you; I have called you by my name, you are mine. When you pass through the waters, I will be with you; and through the rivers, they shall not overwhelm you; when you walk through the fire you shall not be burned, and the flame shall not consume you. For I am the Lord your God, the Holy One of Israel, your Savior. Isaiah 43: 1b-3

God didn’t say we wouldn’t walk through fire, but He did promise we would not be burned.

Oh, Jesus, take and keep every anxious thought and replace it with peace and love. So much love coming from a deep, settled place of rest.

On Sunday afternoon David drove back home to Virigina. Our friend, Lindsey, came to spend a few days with us to help out. We’d probably survive, but it is so much help to have another adult in the house whether it’s homeschooling or bedtime or needing to leave for another doctor’s appointment and not knowing how long it will take.

Bedtime feels like a circus sometimes with the three little ones already and then Liam needs help getting into bed, having his bandages checked or changed, remembering to do the limb lengthening and adjusting pillows until his leg is comfortable.

We’re learning the rhythms and I’m getting faster at locking the wheelchair and manipulating the foot rests out of the way or in place and then lifting Liam’s leg so that it doesn’t hurt so much while he is in the process of sitting down; but I still don’t always get it right. And every time I don’t get it right, he hurts that much more.

On Tuesday Liam and I headed out in an Uber to see our surgeon for the first followup. I was so ready to be seen. One part of his incision didn’t look good to me at all. I’m not a wound care nurse. We used to joke that the CCU stood for Closed Chest Unit because none of us liked wound care all that much. This is the biggest incision I’ve ever seen in my life. It starts about an inch or two below his hip and goes the entire way down past his knee. There’s a second incision on the side where they cleaned out the biopsy track. And then four stab wounds where they inserted the rod and fixator up along the top of his leg and into his pelvis.

When the doctor came in he sat down. A few preliminaries and then he said the incision wasn’t healing well and there was a hematoma in his knee that would need to be surgically cleaned out. “But I’d need to go in anyway because we got the pathology report back and there’s still some cancer cells left in the portion down close to your knee.”

Breathe. I told myself. Breathe. In. Then out.

He went down all of our options again. Donor bone. Rotationplasty. Amputation. Or he can take off another two centimeters and hopefully this time we get clean margins. I knew in my head that the safest route at this point was probably amputation, but my head was swimming and I was having to tell myself to keep breathing and it was clear Liam wanted to continue the plan. So did I.

He was reasonably sure he could get clean margins. Last time the quick frozen section had looked clean, but when they decalcified it in the lab and looked at it, they saw cancer cells.

We were already pushing the limits with a twenty centimeter gap. I didn’t see how they could possibly take more and make it work, but I’m not the one who has any knowledge of this.

But he wasn’t finished. Liam had very poor necrosis (cell death) so he would likely need to switch to a more aggressive chemo. I asked him if they gave him a percent. He looked at me and held up his hand as though he couldn’t bring himself to say the words. Five percent.

5%

Breathe, I commanded myself again and even as I did, I heard a voice in my head say, “I shall not die but live, and declare the works of the Lord.”

I’ve heard “poor necrosis” and terrified parents in the osteo groups and they’re usually talking 30-40%. This was 5. The single most important factor was getting clean margins and we hadn’t gotten them. Yes, we’re going after them again, but we didn’t get them which means they were opened up for distribution in the mean time.

I have no idea why it feels as though God continues to speak to me of a miracle and medically speaking everything goes in the wrong direction. But until I no longer hear it, I will hold faith in a miracle. Because to do anything less would feel like idolatry.

On the way home our turban clad Uber driver asked why Liam was in a wheelchair. When I explained he said, “You pray to God and everything will be alright.” Pause. “You keep going to the doctors and do the treatmen, but you pray and pray and pray and everything will be fine. That’s what makes the difference.”

Friends who live about thirty minutes away came to spend a bit of time with us at a playground. They brought several meals and flowers and a delicious cheesecake; but most of all they brought themselves! It was so good to see someone we know.

Right before they left Heidi told me that when she was as Whole Foods a woman walked up to her and said, “May I bless you?” She was a bit taken aback, but said yes.

The woman opened her purse and started taking money out. Heidi protested, “Oh, no, no, we’re fine. Save it for someone else who really needs it.”

The woman looked at her intently and said, “This is a blessing from God.”

Heidi suddenly remembered why she was there in the first place and told her she was buying food for a friend and explained why we’re here and that she is making food for us. The woman gave her the money and told her to be blessed.

When Heidi got to the cash register she reached into her purse and realized her wallet was missing! The cash completely covered her groceries.

I cried. I realized then that God has felt so silent and far away since after surgery. That story gave me a profound reminder that He will see us through the unknown that lies ahead.

“Take Courage, my friend, your redemption is near. The battle belongs to the Lord.”

I don’t have a word for 2021. Kind of feels like the world stopped on July 29th with a single X ray and we have lived in a small, wildly spinning, encapsulated world within the normal world.

We went through the motions of Christmas and New Years Eve; but Christmas didn’t feel like Christmas and today doesn’t feel like New Years Day.

There were no Christmas cookies baked or eaten, few carols sang because I kept praise and worship music going almost constantly to combat the anxiety that hung heavy around the edges. And even though we stayed up until midnight and drank sparkling grape juice, my body seems to have no concept of whether it’s December or January or February. It’s just “the endless middle.”

Everything led up to surgery in an intense, emotional whirlwind fight. And now we are in the aftermath. Hoping and believing Liam’s body is NED (no evidence of disease, but not knowing until we get the pathology report. Meanwhile, we’re staring down months more chemo on top of surgery healing and post op physical therapy.

There’s less chatter about this stage in the osteo groups online and I feel unprepared both physically and emotionally. My body and mind feels so tired. Mind numbingly tired.

I sleep at night. It’s not that. It’s a weariness from months of living at what felt like adrenaline based, wide-open only to get difficult news and or need to mobilize urgently over and over and over and over.

My entire existence seemed to be taken with researching ostesarcoma, implementing supplements and foods to support his body, aid with chemo effects and kill cancer, finding and fighting for the best surgical option available and watching him like a hawk to help keep him from fracturing his femur or the tumor. And praying. So much time interceding for a miracle.

A few days before surgery I was praying and felt in my spirit the words, “the work is done.”

I felt confused. We hadn’t even had surgery yet. I’m slowly learning to pray what I feel. Not what I think I should pray in a situation. I have no divine way of knowing whether I’m right. It feels more like an infantile trust and belief that the Spirit of God is speaking to me and following that. Sometimes I pray desperately for God to speak truths to me. I can trust His voice. But sometimes I fear that it’s not Him — that it’s just my own grief-stricken mind wanting a good outcome and I catch myself imagining the devastation of feeling misled. Except it wouldn’t be misled because God never does that. It would be “mis-followed.”

And all I can do is reign my mind back in and live and believe and trust. Later, without knowing any of these thoughts, a friend messaged me and said, “Here is something I learned recently, ‘When God gives you a promise, faith stops asking for it and begins thanking Him for what He said He would do’.”

Today is Monday who knows what. My body and brain feel shell shocked. Everything feels locked down. I can’t really feel anything. I keep getting frustrated and edgy.

This is supposed to be the week of pause. No appointments. Staying home and gently recovering from surgery. David even decided to stay for the entire week. I imagined this week to be filled with so much laughter and celebration and instead I can’t even get out of bed until 11 some days. My body is just completely exhausted. Probably from the last two weeks of not getting great nights of sleep, but it’s more than that. It’s exhaustion from the fear and dread and constant adrenaline rush and trying to remember every detail since July 29th because really it’s a matter of life and death. It’s emotional exhaustion and physical exhaustion and the fact that now that I don’t have to for several days in a row, my body has forgotten to ask my permission and decided not to function.

I realized it was last Christmas that our family stood in front of church and sang, “Is there room in your heart?”

How little we knew.

Our little air b and b apartment in New York City felt like a gift from God. And really it was. We had a few things we were specifically looking for. Three bedrooms to accommodate our family. No stairs because Liam wouldn’t be able to navigate them for awhile. A laundry in the apartment because there is no way I was going to have time to go to a laundromat. And reasonably close proximity to the hospital.

We searched and searched and searched and in the end, only this apartment met all our requirements. NYC is an incredibly expensive place to live, particularly the area near the hospital. The apartment was significantly reduced because of covid and even so, it was five times our mortgage payment. But God had already taken care of that and between donations from friends and strangers and a few fundraisers that was a non issue. If you’ve ever wondered what you can do for a family who has cancer, send them cash. People have blessed us so much. In a life that is filled with crushing things, it is an enormous gift to know that whether it’s an apartment that costs thousands to rent or the eighty dollars worth of mepilex for two dressing changes, takeout for dinner or the hundred dollar walker, God’s already provided through His people.

But the apartment had a few sweet surprises. Two of the bedrooms had queen size beds and the room with a mountain mural that was perfect for the boys had two twins. There is no way Liam would have tolerated sleeping with someone. I couldn’t even sit on the bed to watch a movie with him anymore because any movement or shifting caused him so much pain.

It also had huge windows, plenty of closets, and was located on a relatively quiet street. Relative because when you’re accustomed to the country, the entire city is loud.

It was so sweet to be together again! Our church family and someone who follows his update page on facebook had sent gifts along. It was a treat to be together for Christmas Day even if nothing about the entire month felt very much like Christmas. I know that there were many, many families who didn’t celebrate Christmas together this year because of Covid, but my heart breaks especially much for the families who wondered if they would ever get to celebrate another Christmas with all their loved ones.

Liam struggled a lot with pain. It’s so much harder to do life at home than at the hospital. You have to walk to the bathroom every single time and it’s a further walk. The bed doesn’t lift and reposition for you. It’s just different.

It’s harder as a mom, too. There are no nurses to answer call bells at night if you’re exhausted and sleeping. No nurses to do bandage changes and no surgeons to reassure you that the wound looks normal for this stage of healing. It’s all a big worry guessing game.

We tried hard to get him out the door once a day on a walk for fresh air and mental health although the mental health may have been more about me than him. He loved getting out, but the next day was always so much more painful.

About five days after we were home we walked to Central Park. He rode in his wheelchair until we got there and then took off on his crutches. It is so hard to know when to let him go and when to slow him down. I love his spirit; but goodness, he needs to let his body recover a bit instead of setting himself back.

Days four to seven turned into a blur of chills / fevers / sweats and repeat. The surgery team showed me how to use the limb lengthening device on his leg. It wasn’t difficult, but everything felt so new and scary. How much could I move his leg without shifting anything inside? How would I put his brace on and off without sending him into spasms of pain? It was a huge learning curve to determine exactly where to hold his leg and how to lift and transfer it, how far to lower it if he just needed to use the bathroom to create the least pain. Getting in and out of bed was a challenging, multi step process. His leg needed to be supported the entire time and when he was ready to get back into bed he needed a stepstool brought over and stabilized while he used it to push off with his right leg to get back in. How in the world were we going to do this at home?

Physical therapy would get him up once a day. On day four they pulled the epidural and he walked down the hallway a good distance. He was almost sweating with the exertion, but he powered through until she made him stop.

When we got back to the room she realized his heart rate was sky high. That afternoon the epidural continued to wear off and his pain level escalated rapidly. They started him on a very low dose of narcotic since the only other time he’s had them was after his biopsy. It wasn’t nearly enough and he was miserable. At bedtime the nurse and I spent almost an hour making microscopic half inch adjustments with his leg until my own back was on fire, adjusting the pillows over and over trying to get him comfortable.

That night felt so low. Liam was in so much pain. There are almost no private rooms at Sloan and the ones they do have are reserved for bone marrow transplant patients. Our roommate was young, maybe five, and he cried and cried that his belly hurt. “I’m going to die. I want my mom. My belly hurts. I need more pain meds. No, it’s not going to help. Help me. My belly hurts.” Meanwhile his dad ran video games or the TV eighteen plus hours a day. When he went for a CT I thought surely we’d have at least a few hours of silence, but nope, he left it all running in their absence. Liam and I felt so sorry for his terrible pain, and simultaneously wished so much for our own selves to have silence. Hospitals should never be built without single rooms for everyone. No one feels like sharing a room with a stranger. It’s a thousand times worse when you’re sick.

It really started hitting me what a long haul we’d signed up for and how very far away I was from almost everyone I know. I missed the nurses at UVA who knew us and would stop by to chat even when Liam wasn’t assigned to them. I missed our oncologist. Everyone here is so nice, they’re just all still new.

There’s also a different feel in the hallway. It’s heavier. I suspect if it weren’t for Covid there might be an even greater camraderie since everyone is fighting cancer; but Covid is reality and you hardly ever see anyone. There’s less laughter. It’s just heavier.

Late that night our roommate got transferred elsewhere. They came in to clean the room at 4 AM which meant super bright lights. That was it for sleep for me. Within a few hours we had a new roommate who was much older than Liam and mercifully both he and his mama were silent.

On Day 5 Liam walked even further down the hallway in spite of how much pain he was having from the epidural being gone. He knows that movement is the key to recovery and full range of motion and nothing stops him. He came back and was sitting in the chair for less than twenty minutes when the pain and muscle spasms increased so intensely I didn’t even know if we could get him back to bed. The nurse was trying to help him stop hyperventilating and coaching him through our transfer. It was awful.

The pain team came in and got him on meds for nerve pain and muscle spasms and increased his oxycodone. The surgeons told him he needs to back off a little on his activity. It’s going to take a bit for everyone on his team to learn to back him down instead of letting him go his own pace, but less encouraging him to do more! That day was a rest day.

Finally by seven in the evening I felt okay about going downstairs for a coffee. He was back to smiling and messaging friends. I realized again that we’re going to be ok up here. It’s crazy the way a mama’s body just shuts down when her child is really ill or in significant pain. I can hardly move. I don’t want to eat. I can hardly make myself walk down the hallway to go the bathroom. And as soon as he feels better, the entire world looks better.

Day six we were back to making progress. A nice long walk down the hall. He started eating a little better. And his pain was down to a 2-3 if he held perfectly still in bed. We learned that he needed to stay down at a 2-3 in order to be able to move. He can hold still in bed with a 4-6, but it takes all his coping skills and he has no reserve to sky rocket even higher with movement. Even so, he sometimes hit an 8 or 9 on a scale of 0-10 with walking. He is so tough!

That day back in Virginia, David and our friends loaded their maxi van with boxes and boxes and boxes of our stuff and our mini van with the kids and moved us to New York City. I can’t imagine driving with the four kids, alone, from Virginia to New York with three of them being so little and one of them not even two. My hat is off to him. The trip was fairly uneventful until they were about a mile from the apartment. They got stuck in a traffic jam and Harrison got car sick and vomited. Bella took one look and followed suit. Which meant David was moving into the apartment four floors up without me, and starting it out with two puky little ones and car seats.

I was so grateful our friends were still there and Janelle bathed the little ones while the men unloaded the vehicles.

Day seven was Christmas Eve and we got our Christmas Miracle on 67th Street! Liam had his JP drain pulled from his leg and we were cleared for dishcharge as long as all went well until afternoon. I went downstairs for a latte for me and a hot chocolate for him. We donned reindeer antlers and recorded part of, “I want a hippopotamus for Christmas,” and in the afternoon Child Life took us downstairs to the basement where the engineers have set up a phenomenal Christmas light show! He loved it and it made the time go so much faster!

At four our ambulette drive arrived to take us home! He was quite taciturn and tried to make me pay an extra $65 for going alone. I had no backbone left from sheer exhaustion, but the nurse said that’s ridiculous. She called the discharge liason while he kept saying he’s just doing his job. I wasn’t in the mood for a grouchy driver, but I’ve learned you don’t mess with nurses. They will advocate for you when you can’t do it yourself and the next thing I knew the driver was handing me his phone and I was explaining to the owner that I hadn’t requested a solo ride, I’d just told them I have a lot of equipment. He could pick someone up if he wanted to, but we had two suitcases, two backpacks, a box, a suitcase with the limb lengthening device, a wheelchair, crutches, and a walker. “Ok, you don’t have to pay and there’s no one else looking for a ride right now so you’ll be alone anyway.” OOOOOkkkkkay?

We headed down with our mountain of gear. The nonplussed driver took Liam around to the back to get him loaded and strapped in his wheelchair while the nurse and I waited with the cart. When he got back to load the gear he was shaking his head and laughing. “That boy just told me he thinks I look like Lamar Jackson,” and he chuckled again. Once again, Liam had charmed someone within minutes. The entire way home he and Liam discussed everything from football both professional and how they both played for fun, the music they’ve played, and facts about New York City. “How old are you?” he asked. “Twelve.” “You are very mature for a twelve year old.” And then they chatted some more until you would have thought they were old friends.

And just like that, we were “home.” I’ve never been so happy to hug my people and rock my baby to sleep!

I had a much better night. I honestly didn’t expect to sleep because of feeling as though I needed to keep a vigilant watch over Liam. Instead, I crashed so hard, I didn’t even always find out when the nurse came in.

A friend of mine sent a box of Christmas decor with us. It made our room so cozy, especially at night.

Liam looked so much better in the morning. Every twenty-four hours makes an exponential difference. They gave him another unit of blood (his fifth for the admission) and his heart rate finally came down to 113! We were so thankful. Dr. Healey stopped by and said he feels certain the fever spikes are related to blood loss, not infection. Typically your body could recover over time, but because he’s getting chemo again soon he has a very low threshold for transfusing.

If you’ve ever wondered what you can do to support cancer patients, donate blood if you can. It’s truly a life-giving gift.

It’s amazing what a difference twenty-four hours can make. Liam’s pain control is so much better. Physical therapy came by at 10 again and he tolerated movement so much better.

He still got so dizzy and lightheaded, but he pushed through. He even managed to get to the chair with a walker. I was completely in awe. Around 36 hours past a fourteen hour surgery, 20 centimeters of missing femur, epidural, and pushing on through. He sat in the chair for an hour. Eyes closed. Head leaned back. His misery only trumped by his toughness. Reese helped me get him washed up and changed his sheets. He was starting to do the chill / spike high fever / break fever / massive sweat cycle so common after major surgery and it was amazing to have clean sheets.

The activity completely exhausted him, but he looked so much better!

I had a cultural experience when I walked down to the gift shop for a coffee. I walked onto the elevator, pushed the button to go down to one. Instead, we went up a floor. I thought it odd, but expected I’d read the arrow wrong in my sleep deprivation. Until the button for the next floor up lit up, and then the next and the next. Finally, we reached the top floor. The doors opened and instead of seeing typical hospital doors, they were furbished with rich wood. Perhaps where the very wealthy are treated? After coming down a floor or two, one floor at a time, I felt a bit disconcerted. This elevator seemed to have a mind of its own.

I got onto the next elevator and told the staff person who joined me that something seemed to be wrong with the elevator on the left. She looked to where I was pointing and said, “Oh, that’s the Sabbath elevator. It stops at every floor. Maybe just try to avoid that one.” I was completely fascinated. It stops at every floor so that if you are Jewish and need to visit the sick on the Sabbath, you will not need to do any extra work by pushing the button for the floor you desire. I’m not Jewish, but I love that they honor people groups here. Besides the Sabbath elevator, there are also kosher and halal menus available.

That afternoon he spiked as high as 40.2 and his heart rate shot to 150. He was back on oxygen and somnolent. They started a second antibiotic and simultaneously started talking about transferring him to the floor.

I was t.e.r.r.i.f.i.e.d. I knew that every fever over 38.5 gets cultured and in my head all I could see was him getting shuffled out onto a busy floor and going septic.

Reese took one look at my face and asked what’s wrong. I said, “Nothing. I’m fine,” but she knew I was lying and came around and hugged me. “I can’t send you out there if you’re not comfortable.” I started sobbing. “Look at him,” she kept saying. “He looks amazing.” The doctor asked what I’m afraid of and I told her my fear about him going septic. I heard Reese mutter, “Oh, shoot, I keep forgetting you’re a nurse.” It’s one of those times when some knowledge adds an extra measure of knowing it would be easier not to have. Most of the time I’m so grateful for the little bit of experience I have. But in certain moments, I wish I wouldn’t know what could happen.

They talked me through all the preventions they were taking and reassured me of how the nurses handle fevers. I knew he no longer had any parameters to stay. No arterial line, no norepi drip … but he seemed so fragile, especially to a mama who’s just been incredibly sleep deprived.

The tears helped and I was ready. They ended up keeping him for his antibiotic because of the possibility of cross reactions and by the time it was finished I was ok. Reese came back with a snow globe for Liam and box of tissues for me. She is such a dear. And I think Liam finally believed me that she really liked him.

She’s a classic New Yorker. When she told Liam he was going to the floor she told him she found the worst nurse for him and told her he’s the whiniest, most demanding, needy kid ever. Thankfully, I’d already told him she’s a New Yorker and not going to tell him she likes him so she’s telling him the opposite.

I’d taken our things over to the room on the floor before his antibiotics and it smelled so bad even through my mask I was afraid Liam would vomit when he wheeled through the door. I let friends know and they started praying. An hour later we rolled in and room 31 literally smelled like it had just been cleaned. Thank you, Jesus!

Liam spiked to 42 (107.6) minutes after rolling through the door. They did a full sepsis rule out again, gave him a fluid bolus, and hung his tylenol early. Post surgery fevers are unlike anything I’ve ever encountered in normal life.