Ears

CMV is a leading causes of childhood hearing loss. It's a leading cause of a lot of problems, actually, but ENTs and audiologists have their finger on the pulse of CMV whereas other specialties don’t. One of the few official standards to follow when it comes to medical supervision and care of kids born with congenital CMV is to monitor their hearing. Kids born with CMV often fail their newborn hearing tests. Some pass their newborn test but lose their hearing later. Many suffer progressive hearing loss.

Starting from birth, Keira has had her hearing tested every 6 months. She's had tubes placed a couple of times; not because of ear infections, but just to keep them clear of fluid and pressure so we could get adequate hearing test results. Keira has actually had very good hearing. In fact, I found it somewhat annoying that so much focus in CMV research and literature was in regards to hearing. Hearing, I felt, was the least of my worries. When you've got a child who can't see well and can't speak and can't walk and can't eat, hearing loss doesn't seem like the most urgent thing. But the truth is, many kids born with CMV have hearing loss and no other unfortunate disabilities, so hearing is of utmost importance to them. I get that.

In October, Keira had her first sedated ABR hearing test. This was a bittersweet milestone. Until then, Keira could have all of her hearing tests done while she was awake (by putting probes on her head and reading the brain responsiveness to various sounds). However, she has recently gotten too wiggly for a non-sedated test. The increased movement is awesome, though the flip side of that is that now she has to go under general anesthesia for her hearing tests.

The results of her first sedated test were bad! Her right ear tested normal, but her left ear tested as moderate to severe hearing loss. That was a huge decrease in under a year's time. It was a pretty big blow. Once again, when things felt somewhat steady and predictable for Keira and for us, we were reminded of the precarious nature of her health, her fragility, and of course the idea that she could rapidly decompensate and leave us for good. 

I wasn't altogether surprised about the hearing loss, but the audiologist surely was. The audiologist thought that we were pretty much out of the woods, believing that the longer Keira went without hearing loss, the less likely she was to ever have that happen. I wasn't so confident. One think I knew best about CMV was that it causes progressive hearing loss in children. Plus, I'd heard Dr. Park's recent updates regarding his vancyclovir studies.

When Keira was born, she took vancyclovir, a dangerous antiviral medication, for 6 months because Dr. Park had shown that this reduced the incidence of progressive hearing loss for children born with CMV. It was (and still is) the only standard recommendation for treatment of babies born with CMV. Keira took the medication with no problems, took her routine hearing tests, and worrying about hearing loss was put on the back burner.

In September, I attended the national CMV conference in Vermont. I listened to Dr. Park speak about his updated research. They were beginning to find, unfortunately, that the vancyclovir was not so much preventing hearing loss as it was delaying it. The children in his study were still losing their hearing, but it was happening later. This is unfortunate, but the vancyclovir is still beneficial because it is of huge importance for kids to have their hearing early in life to help understand language and communication.

So I thought that his lecture was interesting and within weeks after returning from Vermont, we got this negative result from Keira's ABR. In response, I shot Dr. Park and email. I basically said, "You know that thing you were talking about? Yeah, we just saw that happen with our daughter." Dr. Park responded personally and informed me that he was doing some new research on a treatment method that was showing some modest results and he'd be happy to talk to us about it if we were interested. Jeff and I made plans to go and meet with him at Primary Children's in Salt Lake over Christmas.

In the meantime, I went into high gear, trying to do anything and everything I could think of to help Keira in the event that she went completely deaf, like, tomorrow. I got super critical of her current speech and language therapy and decided they were moving too slowly. I got her started with a 2nd, additional speech therapist to do some supplemental work with Keira. I got her on the waitlist to see a 3rd, one who is renowned across the valley for expertise in AAC (alternative and adaptive communication). We got in contact with the Tobii Dynavox company, one of just two that makes AAC devices with eye gaze tracking. We initiated a 4-week trial of a "Tobii" device. "Just to see."

After Christmas, we left the boys with their aunt Shelly and cousin Sam and took Keira Salt Lake City. We met with Dr. Park, which was quite satisfying. As someone who knows CMV, he agreed that it’s likely Keira could lose the rest of her hearing in both ears and quickly. Bad news, yes, but so encouraging to have my suspicions validated. I felt like the doctors in Idaho thought I was overreacting. Park told us about a study he is doing that was just, I mean JUST, proving to have some measurable results. After following his protocol, some kids were not only having their hearing stabilized, but actually improved! 

The protocol is this: As soon as we got home, we put Keira on a 3 week regimen of oral (G-tube) steroid (prednisone). Then, after a few weeks we’ll have her hearing tested again and if there is ANY improvement, they will put tubes in her ears and we’ll give her steroid ear drops indefinitely. He also recommended testing her hearing every 3 months. 

Keira survived the oral steroid. Park told us that most kids take that dose without issue. I didn’t tell him that Keira’s mother once had to discontinue a steroid eye drop, an eye drop!, because it was making her crazy. During the first week especially, Keira was cranky, flushed, and sometimes inconsolable. But it got better as we tapered her down. Plus we got some interesting results right away. 

We had to coordinate the care protocol with a local ENT. While at that appointment, the pressure in Keira’s ears tested normal! Normal! That hadn’t happened in years, if ever, and is most certainly due to the steroid. This gives us hope that she will test well enough to get tubes and ongoing intervention. 

In the meantime, Keira received her very first hearing aid. It’s been unremarkable. She tolerates it swimmingly, but we don’t really notice any difference in her hearing or her behavior. And we did her 4 week trial of the Tobii Dynavox. 

Keira's response to the Tobii was really incredible. It broke my heart and made it soar all at the same time. 

To train her to use the device, first we have to teach her how it works. It came equipped with several games for that purpose. For example, on “Pie Face,” there is a small picture of one of her family members in an otherwise black screen. When she looks directly at the picture, it triggers animation of a pie in that person’s face then switches to a new photo in a different portion of the screen. 

The Tobii is basically a glorified iPad that has a strip across the bottom that tracks her eye movements. When setting it up and calibrating it, you can see where exactly she’s looking, which was fascinating. We saw that when trying to purposefully look for something, she was really only using one eye, her right eye. Then we observed that she had a hard time looking at things on the left side of the screen. To compensate, she would use all of her strength and rapidly move her head to the left, trying to capture the picture with her right eye. After 10 minutes of this, her face will be flushed with the effort. But, oh, was she ever proud of herself! She was controlling something in a way she never had before. And in spite of her visual impairments, she was getting it!

Eventually, the idea is that Keira would graduate from the games to communication boards. With her eyes, she would choose pictures off a grid to represent what she wanted and the Tobii would “speak.” We’ve got a long way to go with that. Just like any computer, the Tobii has its glitches and limitations. The programs available for young children are few and with the eye-gaze adaptability even fewer. What I had anticipated was an experience like we’d had with the boys on the iPad. I thought we’d be able to choose from a variety of apps featuring cute, colorful characters teaching the alphabet and manners and rhyming. I was sorely mistaken but found instead that I can create these programs myself. (Insert picture of my head exploding). Great. I’ve always wanted to dabble in computer programming and curriculum building. Not. 

I practically kicked my heels when I was able to finally put that damned machine back in the mail. It felt like so much pressure. It’s much more cumbersome, too, than just asking Keira which thing she wants and waiting for a response in her expression. But, she may not be able to hear us always, so we’ll keep on keepin on. In fact, we expect a delivery today of the PRC, the other option in AAC eye-tracking equipment, to begin another trial. 






So all this brings me today. As I write, Keira is getting sedated for her ABR. If the results are what we hope, she’ll have tubes put in her ears. While we’re at it, she’s also going to have Botox injections, xrays, and dental work. 

If K’s hearing has not improved, then we'll just deal with what comes as far as her hearing is concerned. The worst case scenario is more hearing loss, another hearing aid, and eventual cochlear implants. 

She was as sweet as can be this morning. She gets nervous at the point that we go into the pre-op room, but she understands what we are telling her enough that we can visually see her trying to stay calm. She chose peach chapstick for her mask this time and she has Lovey and Peppa along for the ride. 

Turning 6

Just like that, another year has gone by and, as is the case with all kids, year 6 brought some interesting changes.

First and sadly, Keira graduated from (read: "aged out of") the intensive therapy program that we fought so hard for her to be a part of. I've probably mentioned it before, but it's a program that Keira attended 3 days per week, for 3 hours each day. It included PT, OT, speech, and feeding, plus lots of social interaction with kids much like her.

The program is open to kids ages 3-6 who are in need of all the services I listed. Though I fought long and hard from the time Keira was 2, she wasn't actually accepted into the program until she was about 4 1/2. The excuse I got was that they didn't know if she had the stamina to endure 3 full hours of therapy at a time. I didn't know how they could be so confident that that was the case and I was frustrated when child after child, often not even 3 years old yet and/or with higher functioning entered the program ahead of her. Note that this is the only program like this in the area and it can only accommodate 12-15 kids at a time. Keira finally got into the program when we agreed to have a one week "trial" to see how she would hold up. She blew them away [gasp!] not only with how she "held up," but how hard she worked and how much she enjoyed the program.

So, at age 6, the program lets kids go and helps support the child's transition into public school. Keira attended preschool last year at the same place where the "medically fragile" kids from our town go to elementary school. As such, I was pretty familiar with the school program and personnel and felt pretty good about her spending more time at school. For one, I perceived, we would spend a heck of a lot less time in the car, driving her back and forth to appointments every day. And Keira would be able to continue seeing all of her therapists, just less intensely. Just an hour per week for each of them.

Keira and Grandpa at the tea party

Still, I was sad for the program to be ending. Who else in Keira's life, I wondered, would ever provide her with the experiences that this place did? While in the program, Keira played with dolls, went camping in a tent in the middle of the group room, had a tea party, was in a play (complete with speaking parts, sets, and costumes), went on an Easter egg hunt, and played baseball. I was stupefied by how they managed any of these things.

Once early on when I picked Keira up, her therapist told me how much she had enjoyed playing with dolls that day. "How in the world?" I asked, because, naturally, my first thought is that I should try to duplicate this at home. Well. Picture this. One therapist to hold Keira in a sitting position and support her head. A second therapist to manipulate Keira's arms. And a third person to move and manage the doll, bottle, and other play materials for her. I was so happy for Keira to get to experience this "typical" childhood activity, but I also realized, and mourned the fact, that these types of activities could not be duplicated in "real life." So when the program's team asked me about how I was feeling about Keira graduating, I was nearly in tears when I said, "Who else is ever going to do these things for her in her life? Ever? I mean, how will she ever play baseball?"




As each child graduates from the program, they have a special ceremony that is unique to the particular child. This was the cutest. thing. ever. Jeff and I, and Grandma and Grandpa sat in the chairs on one side of the group room while each member of the group gathered on the other side with their personal therapist. Keira was rolled to the front by her therapist and her smile grew as she noticed all the familiar faces watching her. The therapist held her green pre-recorded speech button next to Keira's head and with one head nod and one phrase at a time, Keira said something to the effect of, "Welcome to my graduation! Lately, my favorite thing in the program has been playing baseball! So, today, we are going to play baseball. But first, we are going to sing! Repeat after me!"

She began "Take me out to the ball game..." Which we all repeated in song. Keira bumped the button with her head for each phrase in turn, something that they had been working on very recently. And she mostly got the turn-taking idea, but sometimes went ahead with a solo rather than waiting for us to repeat her.

"Now it's time to play." She reported which kids were going to be on which team....

"My team is up to bat first. Who gets to go first?"...

"I do!"

Keira's therapist helped her to hold the plastic bat in her hands. Everyone in unison shouted "One, two, three," at which point Keira was helped to knock the large bouncy ball off of the tee. Keira's therapist pushed her through all the bases while the crowd cheered. The smile on her face was to die for.

Each kid participated in their own measure. Some in wheelchairs. One kid was in a walker/gait trainer. One was lying prone on a skateboard-like contraption, propelling with his his arms. A couple were fully capable of walking, but needed lots of assistance to follow the instructions of the game. The "outfield's" job was to pick up the ball and put it back on the tee. Everybody was a winner.

It was just adorable to see how each kid participated in their own way and with their therapist's assistance. Each kid looked so proud and so engaged. It was a beautiful thing. I wished I could share that moment with the whole world.



After the game, the kids lined up and Keira was guided down the line and, in trick-or-treat fashion, each kid presented her with a laminated page that included his/her own photo, message, and artwork which was then compiled into a very special "goodbye" book just for her.

Soon after that sweet day, Keira started Kindergarten. I was so pleased that, without me even suggesting it, the IEP (special education) team decided that Keira should spend the mornings with an assistant in the general education classroom since she thrives on social interaction. I loved this idea, since most of the other medically fragile kids are unlikely to speak with or interact with Keira much at all. Keira is happy to go to school. Happy to ride the bus. Happy to come back home. And that's all I want. Learning is a bonus.

Here is a picture of Keira when we went shopping for her to get a new backpack and lunchbox for school. As usual, she's cracking up at Liam.

This summer, I discovered that Keira LOVES strawberries.


So for her little party we had a strawberry theme, ate homemade strawberry ice cream, and she wore her strawberry pants. We were happy that Papa felt well enough to join us. Papa is one of Keira's favorite people (and I think the reverse may be true as well) and unfortunately for Papa, the two had a lot in common what with their eating problems and hearing aids. Keira's favorite gift this year was probably her "baseball," bat, and tee.
 

Isn't this the sweetest photo? I'd all but given up on school photography, but I feel like somehow, this photographer captured her. Kindergarten!

Merit badges

Last year, on our first drive to Salt Lake City for Keira's baclofen pump surgery, Jeff had me in stitches. I was telling him it felt like we'd reached some rite of passage, like we had "leveled up" somehow as special-needs parents. I mean, in one trip, we were going out of state for a surgery AND staying at a Ronald McDonald House for the first time. This had to be worth something. Jeff suggested that we should be earning badges left and right. Where scouts earn badges for camping, cooking, and emergency preparedness, we started creating badges all our own. In our spare time (ha!), we'll totally create these unique badges along with very special sashes for all of us in the special needs scouting program.

When the boys were young, I used to get stressed out by hanging out with other moms of similar-aged children. The reporting, bragging, and questioning that went on between us moms felt competitive and it exhausted me. When Jeff heard about it, and sometimes experienced it himself, he likened these discussions to a fishing derby (more recently called it a "developmental derby"). "When did your son walk? 14 months? My daughter was walking by 9 months." "You put cereal in your daughter's bottle? Oh. We are doing absolutely no solids until 12 months. It's better for their development." You know these conversations, right? Mostly they aren't ill intended. They are mostly just sharing and commiserating from parent to parent. However, if you are like me, a lot of those conversations leave you with feelings of having succeeded or failed as a parent in various areas of your kids life.

It's kinda funny, but I've witnessed some similar conversations between special needs parents. "We don't do that medical food because it's full of sugar." "We put our son in this therapy program when he was 9 months old." "We only go out of state for that medical specialty." "We drive 200 miles a week to therapies." Again, it's not all bad. We want the best for our kids and, for better or worse, we want acknowledgement for the hard work we have put into caring for them when we have very few role models and often conflicting information on what to do for them. And though I don't necessarily think that parents of typical kids should get badges for things like walking before one year, breastfeeding till age 2, or Montessori participation, parents of special needs kids may be due some extra credit for their endeavors. Plus, if we don't laugh a little, we'll cry a whole lot.

Here are some of the special needs parenting badges we had in mind:

• Out of state medical care badge
• Ronald McDonald House badge
• First IEP badge
• 5+ medical specialists badge
• 10+ surgeries badge
• Participating in special needs legislation badge
• Made a wish (Make a Wish Foundation) badge
• Adaptive equipment designer badge
• Firing a therapist badge
• Honorary RN badge
• Honorary MD badge
• Honorary service coordinator badge
• Honorary secretary badge
• Honorary therapist badge
• Unrecognized medical discovery badge
• Wheelchair worth more than your car badge
• Snake oil badge
• Using your child as a scapegoat to avoid unwanted social activity badge
• Handicapped placard badge
• Near death experience badge
• Successful insurance appeal badge
• Lawsuit filed badge
• Still married badge
• Typical siblings are reasonably well adjusted badge
• Blogger badge
• Advocacy/prevention/awareness badge
• Home medical equipment badge
• Home modifications badge
• Clinical trial participation badge

How many have you earned? 

Keira’s remodel

Just the other day, I watched the contactor fill the last hole in the grout and our remodel is complete! A round of applause is warranted.

After years of planning, sketching, researching, calling, interviewing, etc, etc. we found a general contractor who was willing to take on this job! Turns out, most builders do not prefer remodels. They are even less likely to want to do an ADA compliant remodel and they may as well have laughed in my face at the prospect of doing major plumbing work on a house built on a concrete slab. I lost track of how many builders and contractors that I introduced the job to and never heard from again. I'm sure they were wondering why we didn't just build a new house (Maybe you are, too, but that story is for another time). By process of elimination, we came down to one great contractor who seemed to buy into what we wanted to do for Keira and our family. He didn't promise speed, but he promised good work at the right price.

The goal of the remodel was to create an accessible bathroom for Keira with a big, jetted tub and a roll-in shower. In order to do that in our current home, we had to basically demolish the center of our home, about a third of the square footage. This included both existing bathrooms, the hallway, and the existing laundry room. They started the work at the beginning of August, purposefully coinciding with our family trip to the coast and my parents month-long overseas vacation. That way, they could get most of the plumbing work done while we were either out of town or could freely come and go from my parents' empty house across the street. Of course things did not quite go as planned, so we were using toilets and showers at my parents house until about Halloween. It wasn't so bad. Especially for the boys, who didn't mind "watering the lawn," but we were happy with every inch of progress.

Aside from the timeline, there weren't many big, unexpected obstacles like you usually hear about with big remodels. I suppose when you're already going down to the studs and digging up concrete and dirt INSIDE your house, there's not many more surprises to be had. At one point, it looked like they were digging graves in there.



Let me give you a tour...

This is the view through my kitchen into the old laundry room. We removed that door as well as the door from the old laundry room into Liam's room. The laundry room wall got pushed back a little bit and the old laundry room became the new guest bathroom.

This is the view from the living room, down the hall to the "big" garage (where the new laundry room is). In the before picture, you see the laundry room door and the old guest bathroom door. On the right, you see the new guest bathroom, then just a wall, with the now-widened hallway.

This is the old laundry room turned new guest bath. Not quite through with the decorating yet, but I really like it.

Now down the hall, into the master bedroom, so you can see our new and improved master bathroom. As you can see, we took a big bite out of our bedroom and added a wider door. There is now room if we need to install a lift and/or track system in the future. Keira could also live in the master room eventually if needed, but for now Jeff and I will enjoy the proximity to the "fancy" bathroom. 

Simple before and after of the master bathroom. You can see it's a real small shower. I don't have a picture, but the former guest bathroom was pretty basic. It had a tub/shower, but it was difficult to maneuver and too small for her shower chair.


More pictures of the new space. There's a theme. Can you see it? I could call it "echoes of a dancer" or something like that. The pink is truly the same pink as my first pink leather capezio ballet slippers. The tile above my sink is called "arabesque." The shower curtain has some sequin-like shimmery detail. And the framed pictures. Two of them are of beautiful naked dancer feet. One is of a ballerina in tutu taking a final bow. Lastly, (Thank you, Lisa!) is a picture of the staircase that leads up to the ballet studio where I grew up.

Now out the back door into the garage and you can see where we have built in a whole new laundry room. Our house has two garages and this one, that my dad build many moons ago is big enough to house my laundry room as well as Keira's van. We had the contractor build in a linear drain in the garage floor so that when it snows (not this year, I guess), we can get Keira in and out of the car inside the garage without flooding the garage with snow melt. (In the foreground is a project Ronin is working on. He's building a "skate park" out of scrap materials for his finger skateboards.)



I love, love, love my laundry room. I was able to put whatever I wanted in there because, truth be told, Jeff NEVER goes in there anyway. So, ha! I just love my wallpaper. I have never had such a functional laundry space. I'm convinced that with the lighting and the utility sink and the rack for hang drying, our clothes will be cleaner! Also, my friend Wade built me these great cabinets that MORE than make up for the loss of my linen closet earlier in this process. 


And THIS is how happy we are about the remodel.

Water is one of Keira's favorite things. Baths, showers, pools, you name it. It is now much easier to give Keira baths and showers. Easier because there is more space and she can be in her bath chair  in the tub and the shower. Easier because it's less awkward boosting and contorting of MY body to maneuver her around and safely support her the too-small bathroom. Getting Keira ready for bed after that first soak with the jets and all, her limbs were so relaxed and loose. I mean, we'd probably only seen her that way one or two other times in her life. I texted Jeff, "We did a good thing. This was so worth it."

Welcome back!

It's been too long. 

I want to update all of you. I want to air my dirty laundry. I want to be honest and open about what this life is like. 

I've found it increasingly difficult to write, though. Obviously. 

I think there are a lot of reasons, but one of the biggest is probably the fear of offending someone. There are so many people in Keira's life now, for which I am eternally thankful. And there are a lot of hard things. And the hard things, inevitably, include fallible people. By publishing the cross-my-heart honest truth, I run the risk of offending and/or alienating people who work hard for Keira. 

And I'm afraid I resent that. I wish everyone could just pull up their big girl/boy pants and be adults about everything, but it's not always that easy. Sometimes my frustrations are justified, and sometimes I just need to vent. I, too, am fallible and even though I know that, I typically try pretty hard not to burn any bridges. The sheer effort of that alone feels exhausting sometimes.

So, you see, I have conflicting goals. One goal is to create as big a support group as I can for our little girl. The second is to be an open book about the ins and outs of life with a medically fragile child.  

I don't believe that one necessarily precludes the other, but it's risky for sure, and with my limited time and limited energy and limited -je ne sais quoi- sanity (?!), it's been easiest to avoid the writing altogether.

But here I go again. Because I think it's worthwhile. And I hope you think so, too. So much to share. Stay with me!

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