Mama Bear Business: The worst hospital stay

As I enjoy the relative calm and clarity that 2018 has brought me, I’ve looked back over my blog and I see gaping holes where stories have yet to be told. This one has weighed on me for quite some time. This entry is regarding a hospital stay in February of 2017.

Jeff and I had taken a a rare opportunity to get breakfast together at his favorite diner that Saturday morning. We arrived late to Ronin’s basketball game and the rest of the family was already seated. I went straight to greet Keira and sat down so that I could take her from my dad and cuddle her a bit.

Eternally hypervigilant, I almost immediately asked, “How long has she been breathing like that?” The gap at the base of her neck, between her collar bones* was visibly coming and going as she breathed. I pulled up her shirt and saw that her belly, too, was laboriously contracting with each breath. Apparently, this had come on rapidly, as my parents had not yet noticed and said she’d been fine all morning. True to form, Keira seemed happy enough, but this type of breathing was concerning (this was a precursory symptom the time she rapidlydeteriorated and ended up in a medically induced coma for 10 days), so I took Keira home right away to check her oxygen level and to remove her from the chaos of the gym.  

It was hard to get a good reading on our pulse oximeter. Thirty bucks on Amazon, it’s sure better than nothing, but isn’t necessarily efficient and/or accurate like the ones at the hospital. Historically, we’d been told that we should take her to the ER for anything under 90. I got a 92, then an 89, then a 96, then a 91.

My decision about whether to take her to the ER waffled in sync with her pulse ox readings. “I’ll wait till Jeff gets home and then we’ll go.” “I’ll go right now and Jeff can meet me there.” “I’ll just wait and see what happens.”

Within the hour, Keira was making grunting noises with each breath, so I called Jeff to come home and join me to go to the ER. We knew that this would likely result in a hospital stay, so I grabbed the necessities: phone chargers, heavy socks, vending machine money, and a toothbrush. We positioned our troupes-- Janie and Dave were ready for action, my folks and good friends were on deck if needed--and off we went.

1:29 pm

Me: Headed to the ER. No rest for the weary.

Katie: Who? Can I help?

Me: K. Labored breathing. Low oxygen. Nothing at this point. We are all in good spirits so far. I’ll keep you posted.

Katie: I’ll await info. If you need anything, food, kid care, milkshake, let me know.

Me: You’re the best.

Katie: I hope to be. You deserve good friends.

Me: Heard a great quote yesterday…”The people who help you, they might not be who you thought or wanted. They might just be who show up.” I’m so glad you showed up.    

The service was prompt. Nothing gets you into the ER faster than a kid in “respiratory distress.” They hooked her up to check her vital signs. Her pulse ox was fine. 98, in fact. As we spoke with the the nurse, the nurse assistant, and eventually the doctor, filling them in on the basics of Keira’s ongoing “condition,” they each, in turn, relaxed when they listened to her chest and observed her vitals. All signs were pointing to sending us home. However, as we sat there, I observed that Keira was progressively working harder to breathe, looking more fatigued, and was starting a little fever. The doctor agreed to run a test for RSV, but figured it would be safe for us to go home. I explained my concern to the doctor, telling her that in the past, Keira had been very strong until, suddenly, she wasn’t and had to be intubated. I could see that her vital signs were good but I was concerned about how hard she was having to work to maintain them.

While we waited for the RSV test, I texted with Keira’s pediatrician. She told me to have the ER physician call her to discuss Keira. Later, the ER doctor came back and in that moment, Keira happened to be looking quite perky. The RSV test was negative, but after talking with Keira’s pediatrician, the ER doc had agreed to admit her “overnight for observation.” It was clear to me that the ER felt this was unnecessary and I hate, HATE being the pushy mom, but I was relieved that she would be admitted.

Up in her room on the pediatric unit, we settled in. I remember that there was a baby, a little boy of maybe 10-12 months, in the room next door, alone. The door was left open and every time I walked by, he lay there, by himself, quietly playing with his toes in his crib. I wondered where his family was, if he even had a family, and took pause to count my blessings. Took pause to count Keira’s blessings.

In turn, we met the nurse (I’ll call her Clair), the nurse’s aid, the social worker, the doctor, and the respiratory therapist (RT) on duty. In turn, they displayed poorly masked surprise that Keira had been admitted to the hospital. I guessed at what they were thinking: “She doesn’t look too bad. This will be an easy patient. Makes for a light shift!” Whatever.  I’m just relieved that she’s been admitted. Now, at the very least, we can monitor her vital signs and have oxygen at the ready.

I remember pacing the west hallway, walking to satisfy my new Fitbit while Jeff sat with Keira in her room. I updated Keira’s pediatrician and some friends, finalized some details with members of the CMV team regarding our upcoming hearing.  

9:22 pm

Katie: Wishing you a good night.
Me: Thanks. Had to talk them into admitting her. She’s worse. So hard to breath but her oxygen Is good. I don’t get it.
Katie: Good work. Mama bear for the win. Sleep well.
Me: It’s a very strange sport, this mama bear business. 

Meanwhile, Keira’s breathing was getting worse, but the staff was all calm. Her oxygen saturation (“sats”) was near 100%, so there was nothing to worry about, or that was what it seemed the staff was implying.

I googled about oxygen and texted some good friends who are also nurses.

Me: Is it dangerous to put a kid on oxygen when their sats are ok?

I was trying to find some rhyme or reason to why the oxygen supplementation wasn’t being used.

Hannah: “I’d think it would be ok. She could relax and not have to work as hard.”

The next time Clair comes in, I suggest that oxygen might be helpful.

“Her sats are good,” she said.

“But she’s working so hard.”

“We don’t give the kids oxygen if their sats are good.”

“I know you don’t know what she’s like typically, but she’s not mobile. So this amount of effort is enormous for her, like running a marathon.”

“I’ll keep checking on her,” Clair said.

Time passed and I used the call button again.

“She’s working so hard to breath…” I repeated.

“The doctor ordered a UA and they’re going to do some blood work to rule out any kind of infection, so we’ll get to working on that.”

9:36 pm

Me: Anxious. Mind if I bug you? K is working SO hard to breathe. But her oxygen sats are good. What would happen if we put her on oxygen?
Hannah: Sometimes a little CPAP pressure is good…to help with the work of breathing. Do they do blended oxygen in Peds? I feel like they do now. It’s a good question to ask. Are they giving breathing treatments?
Me: No. Her lungs are fine. Don’t know about blended oxygen. I remember CPAP pressure! Thank you so much. I will ask.
Me: Doc is going to come look at her. Will only do CPAP on PICU. This is the sickest she’s ever been on peds unit.
Hannah: Let me know what they say
Me: PEW (is that right?) score is 4. Trying ibuprofen because her fever has spiked. They aren’t worried because sats are good. I’m worried cause she has a history of going downhill fast. How long can she work that hard?
Me: They’re going to do more tests. Urine. A more in depth influenza.
Hannah: Hopefully the ibuprofen will help her feel more comfortable and rest. They will keep a close eye on her sats and intervene when appropriate…
Hannah: Poor thing won’t get any sleep…hospitals suck for that. I’m sorry.
Hannah: I just looked up the PEW score, as I’ve been out of Peds for 11 years, I like it. Hannah: And a 4 means she will have an extra close eye on her
Me: Good. Thanks for the encouragement.

Clair came in to insert a catheter to obtain a urine sample. I mentioned to her that Keira had hardly taken any fluids for all. Unconcerned, she went ahead with the catheter. Keira wasn’t happy, but she’s tough and I stayed at the head of the bed to comfort. Clair fiddled around with the catheter, mentioning difficulty locating some or another part of the anatomy. She withdrew and started over. Again, she wasn’t able to get what she needed, saying aloud, “I’m almost sure I’ve got it in the right place.” Keira, the exceedingly patient patient that she is, was crying now. Clair went out and brought back with her a second nurse with her who tried the catheter a third time. They were sure it had been inserted correctly now, but were not able to get any urine out. Keira was now furious. Screaming. Inconsolable. She’d now been catheterized 3 times and they were still fishing around for a sample. I mentioned again that Keira hadn’t had any fluids in some time. Keira looked scared and panicky, but the nurses had no idea that this wasn’t just another kid crying in frustration. Keira needed to be rescued. A third nurse came in with a little machine that she turned on and said it was, “like a little ultrasound. We use it to see if there’s any urine in there.”

“Where was that machine BEFORE you attempted a catheter THREE times??!” I blurted, unable to hide my frustration.

The nurse said something conciliatory; “It’s not always accurate,” or “Usually there is enough urine to get a sample.” Clair avoided eye contact with me and said nothing. I was angry and they knew it. They were unable to get a sufficient sample for the urinalysis. They gave up and left. Keira had been consoled but the episode had made her breathing worse, not better. My poor baby had a blank, dazed, shocked look on her face.

“It doesn’t help for you to get an attitude with them.” Jeff, had who witnessed everything from his seat behind me, piped up.

“Are you kidding? Of course it does!”

“No, it doesn’t.” Silence. Now, I was livid. And hurt.

“It tells them that I’m paying attention and they can’t go about her treatment willy nilly” I was flabbergasted. “Seriously? Did you see how upset Keira was? They weren’t listening! I TOLD them how long it had been since she had eaten anything! Somebody has to be her advocate!”  Silence. “Haven’t we been told over and over that ‘parents know best’ for kids like Keira and they need to lean on us for medical decisions?”

I was really bent out of shape about the incident and perhaps even more so that Jeff seemed critical of my response to it. That he’d suggested I should have just sat by, passive. That we weren’t on the same team about this. That he thought I was overreacting. The air between Jeff and me was thick, but he gave me a casual apology and a kiss before going home for the night. 

I stayed at the hospital. Apparently, Clair had decided to let the UA go altogether, which was a relief, but her demeanor was icy whenever she came in for her obligatory checks. Clair didn’t ever address what had happened and never talked about a new game plan. We pretended nothing had happened. I didn’t know what else to say and didn’t figure it was my job to fix the break in our rapport.

Why did I care so much that she was mad at me? Granted, I started out this whole day in high gear, emotionally on the rocks. At this point of the day, letting things slide felt impossible. Especially since Keira was struggling so much.

Jeff and I texted back and forth and he apologized for reacting the way that he had and not being more supportive. This brought relief, but I still wondered whether I had overreacted. Were the nurses just doing their job or had they been negligent/neglectful?

Clair rarely came to check on Keira. She still seemed to think that Keira was just like any other of the dozens of kids she’d treated with respiratory concerns. Keira continued to struggle. The hours went by and as Keira’s eyes would finally shut from exhaustion, her sats would drop. This would only last for a few seconds before she would wake with a start, her breath catching. Her little rib cage was working so hard. Moving more, in effort to breath, then we had EVER see her move in “real life.” Doing anything. I mean, when she is at her most animated, kicking and laughing, she is not working as hard as she was right then. Just breathing.  I pushed the call button a couple of times. I wanted Clair to observe Keira’s effort and exhaustion. Each time she came in, I suggested that some oxygen might help. She mostly ignored my proposal and went about her rounds.  

Again, I pushed the red call button. Clair stuck her head in. Just her head. She said nothing.

As calmly as I could muster, “She just keeps getting worse,” I said. “And she’s so tired. Historically, she’s been really ok until all of a sudden she’s not. I wonder why we couldn’t give her some oxygen?”

“We don’t do oxygen if their sats are good.”

“I understand that, but her sats wouldn’t be good if she weren’t giving it everything she had. Could you maybe ask the doctor what he thinks about it?” The doctor card. Experience tells me that asking the nurse to ask the doctor can be offensive to the nurse. And it can really rub them the wrong way if you ask them to do it in the middle of the night.

“I can ask him.” She left again.

She didn’t come back. A good while later, I pushed the call button. Again. I imagined her swearing at the nurses’ station when seeing our room number light up.

“What does he think about whether oxygen would help her be more comfortable?”

“He didn’t say anything about oxygen.”

3:30 am

Keira still couldn’t asleep. She’d barely eaten in a day. She couldn’t even cry because it took too much effort just to breathe. I felt like I was watching my child drown. She was like a person trying to come up for air, but who kept sinking back down. It was a nightmare. It was as if the lifeguard was watching the drowning, too, saying, “she’ll be fine,” between puffs on a cigarette.  

I resolved myself and pressed the red button one last time. I waited, trying to breath calmly. Several minutes later, Clair poked her head in the door. “Yes?,” she asked, failing to mask her irritation.

“Hi. Keira still hasn’t fallen asleep and she’s working so hard to breathe. I know her stats are still ok.” (I gird myself, trying to sound composed and rational). “Could you please help me understand what we’re waiting for? Why can’t we put her on oxygen now? Is it dangerous? Are we waiting for her to go into crisis? Do we need a doctor’s prescription? Please help me to understand what the plan is.”

“Fine! I’ll put her on oxygen!” She let the door fall shut behind her and flipped on the light. She said nothing more to me. She stepped ON my cot and over it in order to get to the tubing supplies. She ripped open the bags, plugged in the tubing, thrust the cannulas into Keira’s nose and turned her back to me to do the charting. She flipped off the light and closed the door behind her without another word. Finally, finally more comfortable, Keira was asleep before the door clicked shut.  

Whew. I was so relieved for Keira, yet I was a mess. What did I do wrong? I tried my absolute best to try to be on the same page with Clair. To try to work together. To try to understand the plan. Did I do something wrong?

Clair did not come back. Twice, an aid came in to check on Keira’s vitals and asked sweetly if I needed anything. “No, we are fine now. Thank you.”

7:00 am

The shift change report was conspicuously NOT done per usual at the bedside.

Hannah: How was the night?
Me: Awful. Had to really fight for the oxygen. The nurse, finally, basically said “fine”, and threw the cannula on her then avoided us. But the oxygen helped her promptly fall asleep for 3 hours. Still breathing REALLY HARD. I’m so tired of fighting.
Hannah: You keep fighting…you’re awesome. I know it’s exhausting. Hugs to you. I’d come relieve you if I wasn’t working today, if you’re still there tomorrow, let me know.
Me: The more sensitive RSV test came back positive. Weirdly, I’m relieved. I hope this gives us some direction.
Hannah: It will help, but I’m sorry. RSV has been tough this year.
Me: Thanks. I’m guessing it will get worse before it gets better. I hope they move us to the PICU, but it’s not been discussed. I’m just so frustrated that they keep looking only at the numbers on the board and not at how miserable she is. She is working really really hard for those numbers! And I don’t know how long she can do that. I just got home. I’m going to take a nap and Jeff is with her. Thanks, Friend. It’s nice to vent to someone who knows what this is all about.
Hannah: Anytime friend. Get some rest.

Once Keira got on oxygen and the RSV was officially diagnosed, the rest of the hospitalization was more or less routine. But the week was a storm. That morning, Sunday, I went home and suddenly got violently ill. Like, so sick that I was afraid to be left home alone because I thought I might lose consciousness. I couldn’t see Keira the rest of that day, but we had a village to help watch over her.

On Tuesday, Keira was on the mend and I left her at the hospital long enough to travel 3 blocks down the road to the Idaho Capital to speak at the hearing that finalized the creation of our CMV bill. And yes, I shamelessly milked the fact that she happened to be in the hospital with CMV-related complications at that very moment.

 

Celebrating our success at the Statehouse

That same day, Ronin had to stay home from school. I didn’t know if he really was sick or if he was just worried about his sister. In any case, neither Jeff or I could care for him and he stayed with my gracious friend, Hannah, who gave him some TLC while her own two boys were at school.

When Keira finally started resuming her feedings in the hospital, after several days of primarily IV fluids, she began having an alarming amount of blood in her stomach. We could see it in the tube when we burped her but it was also in her stool. Not sure what was causing the issue, we (meaning the GI specialist, the dietician, the doctor, Jeff, and I) figured it was as good a time as any to switch her to a different type of food, which seemed to resolve that crisis.

Feeling better

In the days after, I continued to mull over that first night in the hospital. The issues with the oxygen and with the catheter. I spoke with my nurse friends about it. “Help me understand this,” I said. “Was I out of line? What should I have done?” They were reassuring. At the very least, I gathered, the way the nurse responded to my concern was unacceptable. I ended up reporting the events through the appropriate channels at the hospital, but of course have no idea what became of it.

Finally home and covered in get well cards from the sweet kids at church

In the months following, back to her “normal” self, medically, Keira demonstrated a marked change in her behavior at doctor appointments.  They used to be one of her favorite things, a time in which she basked in the attention and cooed at the doctors, winning the favor of anyone in a lab coat or scrubs. But now, Keira was getting panicky and scared at one appointment after another. She’d throw her arms out in shock when I tried to set her down on the examining table (moro reflex). She became tense and even cried when approached by nurses, even if it was simply to take her temperature. I really believe that the thrice failed catheterization process was a trauma to my dear girl. Bless her heart. A girl who was dealt a hand that includes healthcare visits 5 to 8 times per week and smiled through them all as if it were her birthday. A girl who had rarely cried at a blood draw. A girl who, at times, has cried for two hours when she was supposed to be napping, but forgave me with the most brilliant smile as soon as she saw me, the tears still wet on her cheeks. That hospital stay broke her little spirit. Now she was afraid of the doctors' office. It broke my heart and made me upset about the incident over and over again.

Fortunately, experiences like that one are very few and far between. In fact, I have no other stories like that one to share. Frustration upon frustration? Yes. Lack of knowledge/expertise/perspective? Sometimes. But a healthcare providers who are indifferent to my daughters comfort? No. Never. For the most part, I have been pleasantly surprised by the level of care that Keira, and consequently I, receive, given that the resources in our area are limited. Thankfully, with lots of love and support, Keira’s anxiety at the doctor has subsided quite a bit over time. We still find her to be a little suspicious of health care providers at first, but willing to trust you if you earn her favor. She’s a pretty good judge of character. Atta girl!

*Word of the day: That’s called your suprasternal notch—you’re welcome