Some of you may know me; some of you may not. I am Jen Pollard, one of Kim’s good friends. Most importantly, to you, now, I am Kim and Dave’s consigliere, as it were, while Ben is in the hospital.
Kim and Dave LOVE getting all your messages of love and support–from both family and friends–whether they be simple messages just letting them know you care or messages asking for an update or whether you can do something for them. It helps them to know there are so many people out there rooting for them. That said, it can be overwhelming and exhausting to repeat the same message again and again or have so many people to which to respond. This time, they’d like to be able to focus all their energy on Ben and their little family of 4.
Here’s what I’ll do:
(1) I will provide updates as they are available. I will try to post to the blog and then get it shared on Kim’s Facebook page.
(2) Jones-ing for an update but don’t see one? Shoot me a message. You can email me at firstname.lastname@example.org (yes, I still use hotmail! one of the few!) or shoot me a message on Facebook Messenger (feel free to friend me!).
(3) Want to send your love to the Larricks? Here are your choices: (a) send it to me and I PROMISE that when Kim lets me know they are ready, I will share it with them or (b) send it directly to them, but they are in no way obligated to acknowledge it in any way. If you ask them questions in this message, please know that it is very likely Kim will shoot it over to me, so please just give it to me from the start.
Now, one final note, I apologize ahead of time that I do not have nearly the best-friend-talking-to-you style of writing that our dear Kimmie has. I’m more of a just-the-facts-ma’am type of writer, so bear with me!
A week from yesterday Ben will head to Johns Hopkins for his second bladder surgery. His first and only surgery to date was also a bladder correction and that was when he was four. Basically what was fixed in 2011 is back. He has a diverticulum on his bladder. From Wikipedia, a diverticulum (plural: diverticula) is the medical or biological term for an outpouching of a hollow (or a fluid-filled) structure in the body. Not only does he have this issue, but new ones have developed as well. Super! Apparently his bladder is half the size it should be for a kid his size. (Kind of like Ben in general. He’s really more like 2/3 the size he should be. Ha!). His body is also refluxing urine into his kidney. And that’s the main problem. All these things have to be fixed to protect his kidneys. Kidney damage is irreversible so we must act soon.
In 2017 Ben started experiencing a lot of UTIs. A lot. Antibiotics would clear up the problem and by the time he was done with that course of medication, another flare up would come. It was miserable. On two vacations that summer, Ben spent his days holed up in a dark hotel room refusing to go to the bathroom because of major pain, followed by a visit to vacation-urgent care. Good times.
Why does he have all this, you ask? Well, it can be summed up in one short word. Menkes. Frequent UTI’s are a common symptom for boys with Menkes and it has always been one of Ben’s biggest challenges with the disease. Unfortunately the eightish-hour surgery isn’t just over when he wakes up from the anesthesia. He will wake up with a device that will help to empty his bladder.
As you know, I am an open book our brutiful life (Doyle, 2013) is so much easier to bare when I share it with the world. Being understood is one of the biggest reasons I share our life so candidly.
But. As much as I wrap my own life up in my children’s challenges and success, it is not my life as much as it theirs. I want to respect their privacy and autonomy from their parents. I realize this blog is exactly the opposite of that. Ben is 11. He’s a Tween. He often asks when I take pictures, “are you Facebooking that?!” Usually I say yes and he blushes. But I don’t want to share more than he feels comfortable with. I don’t want to embarrass him. So while I will share, know I’m also trying to be considerately candid and also quiet for his sake. I’ll try to balance it as best as I am able…and not be “that mom.”
So. On Wednesday 2/13/19, Ben will have a real-long surgery. Eight hours at least. We will come prepared with Netflix and books and magazines and patience. When he is finished, he will be in the ICU for a couple of nights because of the nature of the surgery and his disease. Then, we will spend a week, as long as all goes to plan, at Johns Hopkins. We are used to this sadly. But happily we know what to expect, how to pack and how grueling hospital life can be. I like to be prepared. I like a plan. I HATE when the plan doesn’t go as, well, planned. But no plan and no experience brings even more anxiety. We have arranged sitters for Kelsey, received offers for care for Teddy (our new dog!), and volunteers for school events. We have care packages for Ben, Valentine presents and activities and DVDs packed for the long days. After we come home, Ben will have a long recovery. He will likely miss six weeks of school (seems to be the requisite surgery recovery period–six weeks)!! He’s happy about it now but I’m sure he will be ready to get back to a normal routine–you know I will!! Take the wheel, Jesus!
Until then, Ben has a big weekend of spoiling ahead. That’s the first thing he asked when we told him about the surgery–“Will I get spoiled?” Yes you will, my love!! He’s going to the movies on Saturday with some friends, having a family Valentine’s party on Sunday and pretty much getting whatever he’s asked for between now and then.
Currently he knows about having surgery, “like when he was four.” But that’s it. The surgery and recovery and lasting functions are more than we’ve let onto with him to protect his sweet heart from worry. We will tell him this weekend when it seems right.
What he is having done is not for the light of heart. Or the weak of mind or body. I feel comforted (and also saddened) by the fact that Ben is currently doing so well. He is so strong. He is so smart and brave and kind and pleasant and wonderful. This year he has matured in so many ways. Fifth grade has really been a delight and I’m sad he will miss so much. Last month we went to Florida for a warm winter getaway. Ben walked the entire airport and a large beach resort. He didn’t tire. He didn’t complain and didn’t need assistance. He was robust and strong and abled-bodied. He pulled his own suitcase!!!! This is huge in the Menkes world. It was amazing to watch…and also experience because we need someone else towing the line with our Kelsey in the mix.
I’m sure when you hear from me in the spring I’ll be praising Ben’s handling of all of this. He always handles his stuff better than I do. I obsess over the plan. Over people’s impressions and reactions to my actions, appearance and entire self. Always have. Always will. Therefore I obsess over people’s impressions and reactions to my kids. This is definitely one way this parenting life has taught me something. As our dear Taylor Swift tells us, “Shake it off!” Ben does and will, God willing. He does not sweat the small stuff and has a very high opinion of his cute self. Praise the Lord!
We will be ok, this I know. But it’s just one more example of how our family has to “embrace the suck.” I am currently reading Sheryl Sandburg (COO of Facebook) and Adam Grant’s book, Option B (2017), which describes her experience of losing her husband. She says,
“Just weeks after losing Dave, I was talking to (my friend) Phil about a father-child activity. We came up with a plan for someone to fill in for Dave. I cried to Phil, “But I want Dave.” He put his arm around me and said, “option A is not available. So let’s just kick the shit out of Option B.” Life is never perfect. We all live some form of Option B. This book is to help us all kick the shit out of it.”
So, once again this little Larrick Family will kick the shit of Option B.
Thanks for your prayers.
P.S. Â Kelsey update–She’s doing great! Just as one goes “down” the other goes “up.” Four months after her most catastrophic seizure yet, most all of her left arm function has returned since my last couple of posts. She can use her regular walker normally. I have never been more thankful for her independence with the use of the walker that we, at one point, despised. Now this isn’t to say that the last four months have been easy. They haven’t. Kelsey needed help with E.V.E.R.Y.T.H.I.N.G. It was like having a 40 pound infant around. But after eleven and a half years of parenting medically fragile children, we have learned that things tend to settle themselves. We had to be really patient and, don’t get me wrong, we were really worried and depressed with our current lot, but her arm function has come back and we are approaching our normal…just as we are about to shake things up again. Life is a real roller coaster, ain’t it?? Sheesh.
P.S.S. My blog website/format has been on the fritz and this is the tenth time I’ve typed this so forgive me for errors and lack of cute pictures. Ta-ta!
It’s been almost three weeks since the seizure that paralyzed Kelsey’s left arm.
And I don’t know what to do.
Let me start from the beginning in case you don’t follow me on social media or haven’t heard all the lovely, intricate details.
First, it’s important to start with the fact that on Tuesday, October 9th, Kelsey had a check up with her neurologist. We went and she showed off all the new tricks she had learned since our last visit six months ago. She walked independently and told the doctor about her Halloween costume. Her doctor noted Kelsey’s great improvements. Here’s a video from the morning of the appointment.
Despite the fact that Kelsey had gained almost 5 pounds since her last appointment, her doctor decided to keep her on the same dose of anti-seizure medicine she’s been on for about a year. She was on a “moderate” dose for her weight and the doctor thought since it was working, why change it? So we went on our merry way after setting our next appointment for March.
Then, two days later, on Thursday October 11th (I’m getting sick just thinking about it), I walked in to wake Kelsey for school around 7:40am and she was having a seizure. This presented exactly the same as the ones she experienced in September and November of 2017. It’s referred to as a tonic-clonic or grand mal seizure. Fully body jerking. Rigid arms and legs. Eyes rolled back. Rapid breathing. It’s exactly what you’d picture a seizure to look like on TV. It’s nothing like the seizures she started with as a toddler that were more like small, brief spasms.
I’m sick thinking about it because like the other two times, Kelsey was sleeping later than usual, and I was using the breather to drink my coffee more leisurely, make lunches and chat with Ben. All while Kelsey was likely seizing with no one to notice or help. I sleep with her baby monitor right next to my pillow but the sounds aren’t noticeable from the monitor. Our kitchen is about 25 feet from her bedroom but I couldn’t hear anything amiss.
So, I walked in to wake her and found her seizing. She had a bloody nose which is unusual for times when she’s seized before but not unusual for her in general (or me!). She had also gone number two during the seizure. Dave was out of town for work. All I could do was to yell for Ben. I told him to call 911.
God bless my sweet son. We’ve practiced this and he was there for seizures #1 and #2 so he knew what he needed to do. He found and unlocked my phone, called 911 and proceeded to tell the operator “She’s having a PROCEDURE!!!” Ha! I even managed to laugh at that despite the chaos in the room!
I took over on the speaker phone all whilst changing a dirty diaper and the pajamas the accident had ruined. I had to clean her up for obvious reasons, but also to administer the rectal rescue medicine we have on hand after the 2017 events. Poop, blood and rectal valium while on the phone! Good times!
After EMS was on their way, I called Dave’s parents who live next door (PTL!) and told them to come right away. By the time they arrived the Diastat had worked and the seizure had stopped. I have no idea how long she was seizing. Her pillow was SOAKED with sweat in addition to the other bodily fluids. That makes me think the seizure was happening for quite some time. The 2017 seizures clocked at least 45 minutes to an hour each. Those had trouble breaking even with meds. It seemed this one lasted awhile but stopped quickly with medicine. For which I was so grateful. Especially without Dave there. It is sheer agony to watch your baby seize continuously.
EMS took us straight to Hopkins which was another blessing. The last two times we had to go to Carroll County General first, only to be transferred which only makes a unbearably long day even longer. I think the fact the Diastat had worked was a big component in this decision. Also the fact that we had just been to see her neurologist two days earlier.
Regardless we arrived at the Hopkins ED and a number of tests were run. Long story short, we were released to go home because the seizure seemed to follow the pattern of the last two and we were sent home so Kelsey could recover. The dosage of her meds were increased. But that was it.
Because you don’t have all day to read my novel, I’ll continue to abbreviate where I can. The next day Ben went to school and Kelsey was still really sleepy and out of it. The seizure takes it out of her as does the Diastat. I felt like she was less like herself than the times before but Dave remembered a lot of the fatigue. I was concerned because Kelsey was having trouble drinking from a straw like she normally does and wasn’t really waking to play much or eating. While she and Dave were snuggling, he happened to noticed that she wasn’t using her left arm at all. Furthermore, her face seemed to have a bit of a droop to it. We notified the doctor and she told us to come right in.
So back to the Hopkins ED we went. We suspected Kelsey might be admitted overnight for monitoring and we were right. She had two tortuous MRIs that night and X-rays. She had blood work taken and an EEG in the morning. She was seen by orthopedists and neurologists and pediatricians. Everyone seemed stumped. Kelsey didn’t have a stroke. It wasn’t the polio-like virus going around. She did still have some activity that was different from her baseline on the EEG but nothing was done about it. After a good amount of discussion, we were sent home the next day (a Saturday) to spend the rest of the weekend healing and waiting for the use of her arm to come back at home. Sunday came and went.
On Monday we updated our doctor. We had seen no dramatic improvement to Kelsey’s arm or facial droop. Up until this point though, her arm was very limp. If you held it up, it dropped immediately. But by the time we called on Monday to update the doctor, Kelsey’s arm had almost gone the other direction, figuratively. Now it was super-rigid and tight. Clenched. The doctor said she’d like Kelsey to have a three hour MRI under anesthesia. Because of outpatient scheduling for such a thing, we would need to wait for an appointment to open later in the week.
In the meantime, that afternoon, Kelsey had another seizure. Her grandparents were visiting her after her nap and after Ben returned from school. I went in to get her changed and ready for dinner. She seemed “off.” Crankier than she had been. And not a minute later she had another seizure. Same deal. Rigid. Eyes rolled back. Luckily everyone and their mother (literally) was there and I witnessed the whole thing from start to finish. We gave her the rescue med and the seizure ended before we could even finish with the 911 operator. We decided to drive to Hopkins ourselves this time. And we knew she would be admitted again and given the long MRI. She was and had the MRI the next morning under anesthesia.
Side note. It is not a good thing when ED and PACU nurses know you well.
“Oh yeah…I was here with your son in August!”
“Not you, again!?!”
To try and speed this along, the long MRI that next day showed NO STROKE. No brain damage. Hallelujah. But what the hell!?! Why was she still seizing? Why couldn’t she move her arm and face? It was decided that the activity on the EEG was causing the seizures. The seizures were causing paralysis. We were given another anti-seizure med and sent home. Luckily that worked and we haven’t seen another seizure in two weeks. But unfortunately she can’t use her arm. It’s still tight. Clenched. Rigid.
I’m frustrated. Confused. Sad. We saw Kelsey’s doctor last week and we were told that it’s not unheard of to have paralysis post-seizure. It’s unusual that it hasn’t gone away yet but not undocumented. We asked if it could be permanent? That was neither confirmed nor denied. “We’ll have to wait and see.” You’ve GOT to be kidding, right??? This canNOT be her future, right???
The good news?
The facial droop is gone. Kelsey recognizes that her arm is not functional and it pisses her off. She picks it up and moves it with her right hand. She can control the clenched arm every so slightly. But she can’t use it to pick up or hold things, point, or “Give 5.”
Another positive is her school and teachers. They are always so accommodating and welcoming whenever she is ready to return to school. The get her new chairs to support her, walkers to use with an adult helper, and technology to help fill in the new gaps. And. Well, she’s still cute. Her spunk has returned and her constant questioning is already driving me bonkers.
Well…she can’t use her left arm. That’s pretty big. Dressing is a pain! Using the bathroom is a pain! And she’s definitely regressed in that area. She isn’t independently walking so it’s a lot of lifting and carrying. Playing is hard because, well, she’s used to two limbs. And the only thing we are supposed to do is wait, pray and do physical therapy–that is no longer covered by insurance because we only get 20 annual visits like “normal people.” Waaaaaahhhhhhhhhhh!!!!!
And the questions. What do we do? How much therapy is right? Should she miss school for it? What about falling behind in school? How will she trick or treat? Do we need a new mobility device? A motorized wheelchair? Should I start finding clothes that zip or button down since T-shirts are not easy? What do we do???? Do we seek a new acceptance? Is this our new life or an in-between? I always need a plan and this is so messy.
Thanks for listening. Thanks for your support. Thanks for the meals. They prayers. The texts. The hugs. I apologize if I haven’t/don’t comment back. Or if I’m quick to push back. It’s A LOT. All of it. I need to share. And I need to be silent and be alone.
I’m currently blogging from Kelsey’s bedside in 9 North of JHH. She had a major seizure on Thursday and has some paralysis on the left side along with continued weakness and fatigue which means we are still in the hospital for monitoring. I’ve spent a lot of long hours…days…nights in the confines of Johns Hopkins Hospital in the last 11 years and have learned a lot. Keep this list handy for the next time you’re planning a trip to the hospital!
Sleep is really hard to come by in the hospital. Vital signs are usually checked every four hours so forget about sleep overnight. That along with uncomfortable and unfamiliar beds, beeping machines, the occasional 2 AM trip for a second X-ray, and way too much light in the room–sleeping is tough. And personally, my roommate (at this point) has always been 5 years old or younger and used to being alone in a pitch black, dark room that sounds like a jet engine from the white noise machine. Most of that you can’t control…especially your own child. But you can control the light with a sleep mask. I threw mine in at the last minute when we headed in yesterday, predicting an overnight stay, and it really worked wonders.
This seems obvious but we came to the hospital by ambulance on Thursday. My mom came to hang with us and then bring us home and she only had a backless booster seat in her car for Ben. The ride home was already treacherous enough with rain during rush hour, but I’m pretty sure we should have been fined by the child-restraint police. Especially, come-to-find-out the next day that Kelsey didn’t have full control of her left side due to some post-seizure paralysis. Oops. #badmom
This is obvious but after Kelsey’s last seizure last November, which was the second one in two months where we spent the night in the hospital without warning, I went to Target and made myself an emergency toiletry kit to keep in a backpack, much like ones pregnant moms pack in preparation for their trip to the delivery room.
The bag has travel sized deodorant, contacts (thank goodness for disposables), face wipes, lotion (hospital air is so dry), shampoo and conditioner, body wash and dry shampoo. I was so grateful to find it on Thursday when we brought Kelsey in. I had forgotten it was in there and was so pleased with myself. It all came in handy for our overnight stay. And I didn’t have to send Dave home with a list of a thousand and one things to bring back the next day.
Comfortable shoes and clothes
When Kelsey and I stayed at the hospital in January for a week I really overpacked. Just like every trip I go on. Hotels or hospitals, I like to be prepared! But hospital rooms, even the big ones, are small. Storage is limited and there’s just so much going on in there that the less stuff, the better. Clothes that work as PJs and vice versa are best. Yoga pants, t-shirts, zip up hoodies–one outfit for every 24-48 hours. You can get lots of steps in at the hospital so comfortable shoes are good to have…I’m talking slippers not sneakers. Let’s not get crazy and think about burning calories. Calories don’t count here, people.
Sense of humor
It is so hard. Especially during the throws of tortuous, machine gun MRI sounds and watching your baby in pain. There is little smiling at those times. But most of the time at the hospital is spent waiting. Sitting. If you can’t laugh, you’ll cry, so find a way to smile. Even if it is at the expense of the hospital staff. Or even better, yourself…
All the devices
Speaking of the boring, waiting factor, I don’t know what people with chronic conditions (and their family members) did before smart phones, tablets and laptops. We use ours for communicating with all of you, for white noise during sleep, for googling new diagnoses, to blog, to work and obviously to Netflix and chill (get your mind out of the gutter people…I’m talking Friends and OITNB). Also, charging cordS. You can never have enough.
Y’all the hospital is EXPENSIVE! I bought a pre-prepared chicken salad sandwich for $9 the other day. Stupid. It’s not even that good. You can get the cafeteria meals but they are REALLY not good. So bring money because you’ll need it. Generous friends gave us a Visa gift card for our week-long stay in January due to Kelsey’s hip surgery and it was so, so helpful–and used! Also, JHH has some cute gift shops and if retail therapy is your thing like me, you’ll enjoy a little shopping. I bought Kelsey a baby doll today and myself a new hat.
Girl, where’d you get that cute hat?!
Oh you know, the hospital, of course.
Also, the gift shop has all the junk food you can’t buy from the cafeteria. If you eat your feelings like me.
If you’ve been reading awhile you know I like my grape juice. People have been known to sneak wine in for me and this time I threw in a little in the bag myself. This ain’t my first rodeo. It feels scandalous and it’s never as enjoyable out of a styrofoam cup, but sometimes a girl’s gotta do what a girl’s gotta do.
Their’s suck. That is all.
I am a VERY independent person and actually really like to be alone. The hospital is not a place to be alone. There is so much information to give and take. And it’s often under duress. If you’re at a teaching hospital like us (bless you), you have to repeat things over and over and over and over again. To the attending, the fellow, the resident, the nurse, the tech, the transport. It. Is. Exhausting. Having another person there to help, explain and relay information when you have nothing left in you is key. Also, sometimes you just need to take a walk and breathe. Someone else to sit with the patient is so helpful. My favorite friend is Dave, of course. My mom also did a bang up job this week on Seizure Day when poor Dave was stuck in Detroit for work.
Kelsey update–For those of you who don’t follow me on Facebook, A) Please do so; it’s just easier and B) Kelsey had a major (we think the biggest yet) “Tonic Clonic” seizure on Thursday. We came home that night but noticed that she wasn’t using her left side on Friday. We returned to the ER and were admitted overnight. She was diagnosed with “Todd’s Paralysis.” Unfortunately, it didn’t go away as quickly as it should. We were allowed to come home to monitor her and will touch base on Monday if it’s still not back to baseline. Good news-she has regained her ability to use a straw and the tone has returned to her left arm. Also, when we were trying to get her to perform in the hospital we talked about Ben and a nurse asked how old he was. She said, “eleven” very clearly… which for her is really good…especially since he hasn’t even been 11 for a month. I’m not sure he’s even internalized it (just kidding Buddy)! So I think we are moving in the right direction. But, please keep PRAYING!!
And for a baseline comparison: Below Kelsey on Tuesday. Five hours before she went to her neurologist for a weight/medicine dosage check where it was decided that her seizure medicine was the right amount for her weight (even though she gained four pounds since this amount was decided in November). And 48 hours before her most damaging seizure yet. 😦
I’m on a high. Life is so good! I just celebrated my 40th birthday yesterday (and have been doing so all month and will continue to do so for the next 11!). I think birthdays are the best! I don’t think enough of us celebrate life enough.
I’m not shy. I’m not modest. I like attention. I like gifts. I like people to tell me why they love me.
I also like to tell people why I love them. I like to create surprises for my people. I like to buy them perfect presents. I like to plan parties and dinners to show my love and excitement. Gifts on Valentine’s Day? Yes please. Cards on Easter? Yup. Life is too hard to not celebrate all the little moments throughout the year.
We are here to give and receive love. That’s it. At the end of life, it’s all that will matter, right? Did you love hard enough? Were you loved enough?
Well, I felt it. I have felt the love. And all the other feels too. On Saturday my generous, adorable husband and stylish, thoughtful mom threw me the BEST party. There was wine, cheese and crab dip. There were twinkle lights, good music, tear jerker toasts, and there was dancing. Although not enough if you ask me. I gave demerits to those who were not dancing. And…there was copper. So much copper that makes me so, so happy. I can honestly say it was the BEST birthday party yet.
At times it felt over the top in the days proceeding. I was in on the plans my people had for me. Do I deserve a venue rental? Is a catered meal over-the-top? It too expensive and vain to get my make-up done for a birthday party? That’s just for celebrities and The Real Housewives. Not silly ol’ me from Mt. Airy.
On top of all that, I went on a trip with some fabulous friends earlier in the month to celebrate my upcoming milestone birthday and shared a fun dinner with family last weekend. Then to round it all out, we celebrated with our sweeties last night with dinner and cake and sweet, handmade presents. Dave shares my birthdate even though he already turned the big 4-0 last year. Ben’s 11th birthday was ten days ago, so September is a big month for us.
So I have been celebrating me with my favorite people a lot lately. And it feels amazing. But as a typical female human, my next thought is guilt. Shame. Do I deserve it?
Along these lines of feeling unworthy of such joy and happiness, I’m currently in a fabulous season of life because Kelsey started kindergarten so both kids are in school/on the bus for EIGHT HOURS A DAY! It is freaking spectacular but I’m a little embarrassed to be staying at home alone without a child for the first time in eleven long years. Maybe embarrassed isn’t right. I feel like I should be. That I should feel guilty.
I know that is ridiculous. I speak and write about my two medically fragile kids and all the challenges that adds to our life. After multiple diagnoses, surgeries, ambulance rides, illnesses and therapy each a week for two kids, no one is going to think less of me for taking a little break right? No way! And I shouldn’t feel any self-consciousness for it, but the feeling of having enough free time to breathe on a daily basis is new to me. It feels crazy. Crazy awesome…but crazy.
My Fall of Fun is well underway and proving to be as amazing as I dreamed about. I’m feeling so loved, so blessed and so…happy. It’s weird. I recommend it to everyone. Treat yourself. Spoil yourself. Let your people spoil you. And don’t feel guilty about it (easier said than done). Happiness is not overrated.
***Thanks for reading and sticking with me. I know it’s been awhile since I’ve blogged but since I have all this free time now (ha!), I want to write more. You can also find me on Instagram @copperluck to follow the ins-and-outs of our “special” life.***
Kelsey should be having two hours of therapy six days a week. Instead she’s fighting the flu. Dave has an especially busy work week. Snow is coming which means school will most-likely be affected throughout the week. The load is heavy and I’m feeling it.
I’m forced to wonder if leaving Kennedy Krieger was the right decision. It was the plan for months. And although it wasn’t the right place for Kelsey, as far as we were concerned, she would have gotten the therapy she needed. Yeah I would be burdened to share a room with a stranger in a cramped room but other burdens may not have presented themselves. I’m pretty confident she did not catch the flu virus until we were back home at school and therapy.
Illnesses aside, she can’t walk. And I’m aching to be back to our normal. I’m praying, getting time to myself now and then, exercising (occasionally), and drinking the wine. But none of that is helping. By leaving the hospital, we put the burden of rehabilitation on ourselves. The load is heavy and I’m feeling it.
This life we live is rich and beautiful but it’s also hard. Brutal, even. It’s a Brutiful Life,(Melton, 2013). Writing often helps me to cope which brought me here today. I know this is a dark time and the light will come again. But for now I’ll just try to trust that our instincts were right and that medicine will make my family stop hurting so that we can start thriving again.
Thanks for listening. More than gifts and meals, it’s what helps the most.
Welp. We graduated. After a mere 12 hours, we could tell that we might not need the intensity that KKI provides. This morning we asked if an outpatient scenario was possible. For a multitude of reasons including: She has no pain. She’s not on any pain meds. She’s “only” receiving PT and OT. We live close enough to drive KKI everyday. We didn’t see why it was necessary to spend all day and night at the hospital for a month. So after consulting doctors, therapists and social workers, who all agreed that outpatient therapy was a sound and safe choice, we were discharged. After 36 hours. The PT in charge said “we never see kids climb steps on their first day like she did!” This puts more on our plate at home but I’m up to the challenge. Thankfully Kelsey’s school and private therapists are rock stars and will, I have no doubt, have her in tip top shape in no time. She passed out immediately as sleep was something she gets less of at the hospital. We are all happy at home again. Thank you for all your prayers!!! Boy did they work!!!!
Well, we’re nearing the end of the second chapter of Kelsey’s surgery and recovery. She’s done very, very well for the six weeks we’ve been home. Actually we’ve all handled it very well, now that I mention it.
Kelsey’s spirit has never been better. This was what I was most worried about. That the surgery and casting and positioning would really mess with her spunk. It didn’t. Kids are so resilient, it’s crazy! She maybe asked to take the “cast” off three times. The first couple weeks were hard because she couldn’t sit up past 40 degrees, but since then she’s gone to school, learned to scooch on the floor, and even how to roll herself around in her bike (aka wheelchair). We’ve figured out how to do Target runs, how to eat out at restaurants (corner booths are perfect!), and how to wash her hair in the bike. She’s also grown and developed in many ways despite this setback. She’s started to play pretend with dolls. She’s talking in longer sentences. And she’s never been cuter.
It wasn’t all fun and games, though. Sleeping was HARD for her. She, like any human, likes to change positions while she sleeps. But with the immobilizing pillow, that is a no-can-do. There was nothing we could do for her at 12, 3 and 5AM when she woke up screaming bloody murder. We couldn’t give her what she wanted–to roll over. She didn’t want a hug. She didn’t want a drink. She just wanted to snuggle up with her pillow and sleep. Trying to help her made it worse so we ended up doing a lot of “crying-it-out.” That part was/is super sad. Baths were not allowed after I blogged about them in my last post but thanks for the ideas! This might be what I am most looking forward to after the cast comes off–giving her a bath. The sponge baths aren’t cutting it any more…girlfriend is stinky!
The “bike” is also a pain. Kelsey can’t ride the bus because her wheelchair is not safe for travel. Which is painfully ironic because she rides a special needs bus that has a wheelchair lift. The trips to and from school became my full time job. The chair is heavy and awkward and it definitely makes me appreciate and miss her walker. I wore my perspectacles in a new way these last couple weeks. The wheelchair got us a lot of pity glances but I noticed them much more when her cast was covered with a blanket on cold days, than if it was exposed. I assume that’s because people feel better knowing the cast is temporary? Regardless, at this point in my child-rearing life, I don’t give an eff about the looks of pity. Ain’t nobody got time to worry about that when my To-Do List of worries is a mile long.
Hopefully the surgery and casting has done what it was supposed to do. The cast or pillow took a good bit of effort itself while we’ve been at home. Because it was “just” straps, I had to adjust it on a regular basis because it kept slipping down her legs. Fun times.
Her legs are super dry from being wrapped up and her feet are even dryer! It’s crazy considering they aren’t even casted. It’s like she is peeling from a sunburn! So weird.
Ben was a trooper during the first two parts of this ordeal too. He’s so used to “our normal” that this really didn’t phase him. Kelsey had a walker and now she has a wheelchair. No biggy. He’s sweet with her one minute and annoyed with her the next…just like any big bro/little sis relationship.
As for Dave and me, we’ve hung in there. Poor Dave was sick for most of February with a cold, the flu and strep throat so he and Kelsey convalesced together. We took the opportunity of the sick-wheelchair-winter weather trifecta to get the new house organized and decorated the way we want it to be. About seven times a day I give thanks to our house. It’s just a dream.
And next up is part three of the hip journey. On Thursday, we will take Kelsey to Hopkins to meet with her surgeon for an X-Ray and exam before walking across the street to check in at the Kennedy Krieger Institute. Hopefully her hips are healed and ready for some serious exercising action.
Today a friend at church asked how she could help us during this next phase and I just don’t know. I am very familiar with hospital stays but I don’t know rehab. Plus the shared room (for a month!) should prove very interesting. I don’t know what to expect or how to prepare. We will just have to wait and see, I guess. If you need something to pray for, pray for us to get a single room!! 😉 Ha! Nah, probably better to pray for a quicker stay than we expect, that Kelsey will be walking better than ever, and that we have determined and happy spirits for all of us while our life is upside down for a bit. I’ll try and update how things are going as much as possible in the coming weeks.
Continued thanks for those prayers, meals, toys, messages, and bottles of wine. Our survival has definitely been possible because of all the support you’ve all given us. Thank you, thank you, thank you!
I wanted to update you on how Kelsey’s recovery from surgery is going, about 10 days in.
Backing up, Kelsey had “femoral proximal osteotomy, hip acetabuloplasty and adductor release” on both of her legs on 1/22/18. Say that three times fast. That means six incisions. Three on each leg. We were surprised to learn that Kelsey did not get a cast that we expected, but a adductor pillow. It prevents ALL movement of the lower body.
So picture it…you’re four. It’s winter. You can’t play with toys on the floor, take a bath or get in and out of your brand-new “big girl” bed. You can’t walk, roll on your side or even sit up. Kelsey is supposed to lay at a 40 degree angle or less for three weeks after the surgery. We’re 10 days in and we’re all already done! I guess after three weeks, the work the surgeon did will be set, and she can resume normal sitting.
I had worried about the surgery. Worried about all of us staying healthy for the surgery to go smoothly. Worried about sleeping in the hospital for 5 days. Worried about Kelsey’s reaction to the pillow (or what I thought would be a cast) and the hospital stay. I had worried about the pain she’d experience. Worried about Ben’s adjustment to a new house, a new sister (for a period of time) and absent parents for a week. But I didn’t worry about the fact that Kelsey would have to exist in a laying position for this long. I didn’t even think about it. I knew she’d have a wheelchair and I don’t think I’m alone in thinking that when one is in a wheelchair they are sitting. Not laying. It’s definitely tough position to be in (pun intended) for our little girl.
Dear friends and family have provided us with every possible lap game, sticker book, play-dough and paint-by-number book we could ever yearn for to keep Kelsey busy in this restricted position. They’ve all been a life-saver to me, especially, as ways to entertain her when her favorite things to play with get old.
But the immobilization is taking it’s toll on Kelsey. Today, she tossed her beloved Elmo Alphabet Letters up in the air, Theresa Giudice style.
And it was only 10 AM. She is bored and irritated with her predicament and she’s letting us know.
We can remove the pillow for two reasons: Transportation and bathing. We are able to make the carseat work without taking the pillow off, thanks to the Shaggin’ Wagon. But we haven’t tried a bath yet (man does she need it!), because her sutures have to heal and she has to be able to sit up at least a little for a bath. If you have thoughts or tips on how to make the bath work when it’s time, do let me know.
Pain management is…going. While I think boredom and discomfort on her back would be her main complaint, there is still pain. Especially when we accidentally get behind with one dose. We are still sticking to the every-four-hours schedule with two pain killers, but plan on discussing the weaning process with her doctor tomorrow.
To fight the boredom, we are going to attempt to get out everyday from here-on-out. She can wear her “pillow” in the car and has always enjoyed getting out and going for rides. A trip to the drive thrus at the bank and Chic-fila earlier in the week were probably the highlight for her. Our new hill (like our old) isn’t really conducive to walks outside with the wheelchair (which in it’s recline position is already hard to push for anyone over 5 feet tall), but I’m sure that it would really lift her spirits if we could rig up her stroller to support her legs.
Despite the hill, our new house is AWESOME! The ease in maneuvering from room-to-room-to-room is amazing. Kelsey calls her wheelchair her “bike” which is super-sweet and it’s caught on for the rest of us. She hangs in her bike, the couch, her new daybed, and the bed we have set up in the playroom/guest space. That’s the best place to play with her while she also has access to a TV, space for toys and her beloved mirror.
For us, it’s so nice that all those spaces she needs to be are so close to the kitchen, our bedroom and all the rest. The house is SUCH a blessing, especially at this difficult time. Imagine moving into a one-floor house with a ramp a week before a family member is bound to a wheelchair. Thanks, God! The house is also providing a great distraction for us with plenty to unpack, put-together and shop for!
And here’s the big news, after 13 years of being without high-speed internet, we’re back baby! All those Netflix shows and movies On-Demand y’all have enjoyed for what seems like forever are finally ours!!! Due to the rural nature of our houses, high-speed internet is almost impossible to get (yes we’ve tried and tried and tried), but we’ve been able to hook something up in this house (thanks to Dave’s bestie Dan) and we’ve never been happier. Need to update your phone!? Do it! Download TV, apps and movies to your device? YES! It’s so, so nice. A Brave New World for us.
I’ve binged on The Marvelous Mrs. Maisel (can’t recommend enough…I was so sad when it was over!), The Crown (Dave likes this one too) and The Unbreakable Kimmy Schmidt. Ben’s definitely been purging on Poke’mon and Kelsey enjoys the on-demand Mickey and Elmo (she will.not.drop.Elmo). But thank goodness for those characters and for cellphones, iPads and You Tube. I cannot imagine surviving this period without technology. I hate seeing Kelsey getting so much screen time, but it’s a LONG day when you can’t sit up and the devices have been so helpful and comforting to her. And it’s virtually the only independence she has at this point. It’s the only thing she can decide to do and access by choice and without help. Screen time limits were not created for four year old hip acetabuloplasty patients.
The plan. The plan is to wean the meds, get out for a bit each day, and hopefully set a goal of a couple weeks of school as soon as Kelsey can sit at 90 degrees (10 days from now). Then, around March 12, we will head back to Hopkins for an X-ray and post-op visit with our surgeon. I’m under the assumption that we will check into Kennedy Krieger on the same day. And then we’re predicted to be there for 3-4 weeks. Come on 3 weeks!!!
We visited KKI and were very impressed with the daily schedule, nurses, therapists and activities Kelsey will have at her disposal 24/7 to recover better than ever. We still aren’t sure what family life will look like with her staying at the rehab hospital for 3-4 weeks. During the tour, we found out that the rooms are semi-private, which means she will have a roommate during this time. And if that roommate has parents, it could be quite crowded in that small room. I was really disappointed to hear about this as the rehab portion seems the most daunting (rigorous and long!) but I’m trying not to stress too much.
As mentioned above, I worried and worried and worried, and what actually has been the hardest to deal with wasn’t even in my wheelhouse of thoughts. I think Kelsey will enjoy the stimulation, the busy days (therapy six hours a day, six days a week), the learning and the attention, and hopefully that will all outweigh the discomfort I feel with sharing a room with strangers. And if it feels right, we may leave Kelsey to sleep by herself and sleep at a nearby hotel or with friends in the city. Or possibly even drive home each night depending on how it all shakes out. It seems criminal to leave your 4 year old “by themselves” at a hospital overnight, but I am trying to think about the fact that we have had no problem flying to Napa, Nashville and Punta Cana (June!) without her and Ben. In this case she will have round the clock care and monitoring from medical professionals. Still, it won’t be easy. Hospitals are different than home when you’re sleeping without your family.
So that’s where we are right now. Thank you for checking in and I’m sorry if I didn’t respond. Thank you for all the messages, texts, emails, flowers, presents, meals, Edible Arrangements, house warming gifts, unpacking help, gift cards, furniture building help and errand-running. We most definitely would not be where we are without all the help you all have given us during this time of total disruption of our “normal.”
P. S. Our old house still hasn’t sold. There’s Open House on Sunday. Go check it out!