A Wednesday evening brought about albuterol treatments for Lark. It wasn’t really surprising, because we go through this often with her asthma and with the change of seasons, it’s to be expected. Fall is, by far, the worst season for her lungs. But we really thought we had turned a corner after last fall was less eventful than the prior and after we were able to cut back her meds significantly this last spring, with minimal episodes until now…
On Thursday morning, we sent her to daycare like normal. I informed them that she may need treatments throughout the day and to feel free to administer them at the necessary intervals. Sometimes late afternoon, they sent me a text message to let me know that they did have to give her a treatment and that she was still coughing a bit. I would be picking up her shortly anyway, so I didn’t rush over right away. When I got there, I was told that she really had been struggling with that cough and was retracting a bit (basically means you can physically see her muscles working to hard to help her breathe). Oddly enough, she said to me on the way out “you may end home with her tomorrow,” because she knew Lark wasn’t in a very good place. We are all pretty used to Lark’s health issues.
We headed home, she seemed okay, but it was obvious her lungs were going to give us some trouble. We continued the treatments all evening and switched to her resuce inhaler at some point to see if that would make a difference…it didn’t…we kept her in our bed all night, which I always do when she’s having an asthma episode, just so I can keep her close. But it means we don’t sleep, especially on this night, because she literally struggled to breathe all night. They were a couple of times I almost rushed her to the ER, but then she’d stabilize a bit. I knew I’d need to stay home in the morning to get her into the pediatrician and by morning, she was seriously struggling. Her rescue treatments are supposed to be 4-6 hours apart, but she wasn’t making the 3 hour mark and that was pushing it because I was trying to spread them out as much as I could until we got into the doctor’s office.
At about 9:45, we headed out the door. I sort of had a bit of premonition to pack a few things, in the event we were gone longer than expected, or had to head over to the hospital. These are the things you do when your kid has a history of hospitalization due to asthma. With asthma, you see the physical side of her struggling to breathe, but it’s hard to see what’s happening inside. Which is heart rate and oxygen levels and the reasons it’s so imperative to get her seen right away. As predicted, her heart rate was too high, her respirations were too high (they compared it to her continuously running a marathon) and her oxygen kept dipping to the low 90s, which is never good.
(Just some random snaps from my phone of Lark in the doctor office during our 3 hour visit, napping with Arlo in a hospital bed, kids having a picnic, hanging out, hanging out with a bacon frown, and getting beauty rest…)
We hung out there for awhile (3 hours, to be exact) while they continued to monitor her levels and went the emergency breathing treatment route…3 back-to-back albuterol treatments, that left her lethargic and wired at the same time, shaky and irritable. It’s always so hard to watch her go through that. With asthma myself, I know how one treatment makes me feel, and here they are pumping her with it over and over again. I stay pretty calm in the moment, but it isn’t until much later that I really digest the stress and seriousness of all of it. They kept hinting at a possible hospital visit, but they were trying their hardest to get her to turn around. They gave her a dose of oral steroids and just monitored her over the 3-hour period. Both kids were so good, like ridiculously good! Lark is always so good about this stuff and accepting of her circumstances. She’s a fighter and displays strength I can’t even believe. She listens to the doctors, does everything they ask without issue and while I’m thankful for that, it also makes me sad because I know it comes from habit and having to go through this so many times before. Unfortunately, she’s used to it.
At around 1 pm, the doctors and nurses let me know there was nothing more they could do here and put in the call to the hospital to have everything ready for us and off we went.Almost two years, to the day, since the last time she was hospitalized. I drove through Wendy’s first because none of us had even had lunch and were starving. Then we headed into the hospital. Our room was not ready for us, Lark was coughing up a storm and I was trying to feed my kids their lunch on a tiny table in the middle of a busy waiting room, not even able to eat anything myself. We were all running on pure adrenaline at that point. We got shuffled over to admissions around 1:30 and my kids proceeded to continue their lunch on the floor in the corner of a tiny office while I signed paperwork and got Lark’s hospital bands situated. From there, we headed upstairs to the pediatric floor.
Once upstairs, they led us to our room and that was the point that it hit me. I walked through the door and noticed a giant stuffed Mickey and Minnie propped up against a Hello Kitty pillowcase on top of a pink and purple owl blanket, all ready for her. It was accompanied by a purple gift bag full of goodies. Lark was so excited, she loves Minnie and anything purple, and Arlo thought we were at a hotel. I started to cry. The nurse was talking to me, I don’t remember what she was saying because I had to look away while tears filled my eyes and thoughts filled my head like “kids should not have be in this place. My daughter should not have to be in this place” and “oh my god these beautiful gifts for my child who is smiling through the absolute crap that she’s feeling right now.” It was overwhelming, but I straightened up and got her comfortable in her huge bed, with a tiny gown covered in baby tiger cartoons.
Moana was playing on the tv as the nurse wrote “Welcome Lark!” on the board in her room. The “princess room” as they call it, because since the last time we were in, they repainted the whole department with colorful murals, Lark’s being a princess castle with a big unicorn looking over her. I finally got to eat, it was cold and gross and I think I ended up throwing some of it away. I felt hungry but didn’t feel hungry all at the same time. As I tried to choke it down, they hooked Lark up to the monitors and I was thankful that she didn’t need an IV this time. It’s always traumatic when she needs an IV. But since she was drinking fine and not showing major signs of infection, and IV wasn’t necessary. The main concern was oxygen, so they place a monitor on her tiny toe and she was then confined to her bed, unless she had to go to the bathroom. It was still low and kept dipping, only to rise again and repeat that process.
All of us were exhausted by this point. Lark was bundled up in her bed, coloring in the Barbie activity book they gave her. I decided to lay on my bed and Arlo climbed up with me and passed out in my arms. Lark was soon after and then I drifted off into sleep too…we all slept for about an hour (not long enough) before people were back to administer medication, check on her, update me…It’s all a bit of a blur. Sometime around 5:30 James got there and he brought some food! He stopped at a local deli and we feasted on sandwiches. James was able to get safely made sandwiches for both kids. I’ll be honest, the hospital food is awful and I was glad Lark didn’t have to eat it for dinner. I ran home at one point to grab a quick shower, a change of clothes and some snacks for the kids. I was sad to walk into our dark, empty house, knowing that Lark was stuck in the hospital. But I quickly gathered myself and what I needed for the night.
We settled in for the night, the kids played with these wind-up bugs the nurses gave to them. We started with one in Lark’s gift bag, but the nurses were generous enough to give us an extra for Arlo. They both played like nothing was happening and life was good with beds that moved and every movie you could ever want! But then it came time for James and Arlo to leave, and I lost it again. I didn’t want them to leave and I felt bad that Arlo had to be without us at home. I hugged him hard and Lark and I watched them walk down the hallway, when he turned to me and said “you coming with me, mommy?” and I was so sad. Lark and I went back in the room and after she was settled back in bed, I just sat and cried.
The nurse warned us that she may need to receive oxygen if her levels kept falling and that if she did, we were guaranteed a second night there. She offered to place the adhesive and mask on her before bed so that if she needed, it would be ready. I declined, because I knew she’d hate it and a large part of me was just hoping she wouldn’t need it. I laid in bed with her until we both feel asleep, only to be woken up not long after with the oxygen alarm blaring and a nurse rushing in to place the mask. My heart sunk, Lark cried and buried her face in my chest while she tried to rip the mask out…eventually she settled and fell asleep. Me? I never slept, because even though you’re in a hospital and there’s nurses watching her on a monitor, you still wake up in “mom mode” to check if she’s still breathing. Plus there’s people in every 2 hours to give her meds, so there’s no rest happening.
Morning came and she was still requiring oxygen, but seemed to be in better spirits, likely thanks to the oral steroids calming her system down. I ordered her breakfast and she was very excited that they had chocolate soy milk for her, cereal and a side of bacon (that girl loves bacon). At some point the doctor came in and told us we weren’t going home and she was still struggling but was confident she was on the up and up.
I don’t remember every detail of that day, and I won’t bore you with them, but I do remember crying at some point about wanting to go home, Lark had a meltdown over something I can’t remember and Arlo ran around in his Chewbacca slippers, wooing every nurse in the building with his charms. We watched several movies, most notable Cinderella (which I forgot how much I loved) and James and the Giant Peach (another childhood favorit).I went home for a bit that afternoon as well, taking Arlo with so he could nap while I showered. I also packed up dinner for the kids, homemade chicken noodle soup leftovers from a couple of nights prior, again to save Lark from hospital food. The only thing on the menu she can even safely eat is the spaghetti, which isn’t very flavorful…One of the nurses is a friend of ours and she helped me race the kids down the hallways in little push cars they keep for kids in their playroom. Lark’s stats were staying stable enough that she was able to be up and around and disconnected from the machines. Grandma stopped by in the evening with balloons for the kids and she sat and played in the play room with them for awhile and they were so happy. It also gave James and I a few minutes of reprieve while they were occupied. They had a great night together, just playing and being kids. I spent some time in the play room with them too, racing cars with them, shape sorting, pulling out every toy in the room because they just couldn’t believe the amount of toys to be had!
It came time again for James and Arlo to leave. I was going to have James stay with her that night in an effort to get some rest at home and give Arlo some time with me, but Lark asked me to stay with her and I couldn’t say no. Once again, I cried saying goodbye and once again, I didn’t get an ounce of sleep. We were warned again of the risk of oxygen treatment should her levels fall overnight, which would guarantee us a THIRD night in the hospital, so I was feeling really anxious, especially after she had such a great afternoon and evening with her spirits up…both of us were up late, but Lark finally asked to lay in my bed, in my arms, and was out like a light very quickly. When at rest, the body naturally takes in less oxygen, but because her level was already mediocre, that drop could mean trouble for her if it went below a certain number…that number being 92…
Almost immediately after she fell asleep, it would drop, setting off alarms, so I’d get up and readjust her, making sure she was getting optimal air flow. She likes to sleep on her side, curled up in a ball, but to maintain a “good” level, she needed to remain a bit upright. I did this every half hour for most of the night, trying to shut my eyes in between, only to be awoken by alarms or respiratory therapists coming in to deliver her meds, or both. She’d been having trouble over the previous 12 or so hours with breathing treatments, which made her oxygen levels drop just as a result of the treatments, so the nurse and I would join up after treatments and watch the numbers drop, then slowly creep back up over time. I spent so much time in the dark silence giving my sleeping bird pep talks…”come on baby girl, breathe, breathe…you’re strong and you go this” while I sat at the edge of the bed and held her hand.
Eventually, the alarm was going off consistently, but because she wasn’t dropping a ton, the nurse set the limit to 91 so it wouldn’t set it off. She managed to stay between 91 and 94 all night, avoiding oxygen! She woke up at 6:30 the next morning, during a breathing treatment and couldn’t fall back asleep. She sat with me for two hours and let me sleep that entire stretch thanks to iphone games and movie on tv with nurses to check on her. I woke up feeling a bit better and was excited that she made it through the night with minimal intervention. Sometime late morning, the doctor came in and let us know she was doing much better and we were set to go home! I was so grateful and thankful, but Lark didn’t want to leave. Mostly because the wonderful nurses make everything so fun for her. They are angels in disguise, truly.
I got her dressed and tried to clean up all of the adhesive on her face and toes from all of her connections, to no avail. The child was in desperate need of a bath! While they got our discharge paperwork going, she literally ran up and down the hallway, over and over again. I think she was happy to be free. And the floor was empty of patients at this point, so she had the run of the place. I packed up all of her goodies to add to her hospital collection of pillowcases and blankets at home, and James and Arlo drove over to bust us out! We said goodbye to our friends (including the awesome pebble ice machine, one of the perks of a hospital stay).
We drove home on a 70 degree day in mid-October. It was sunny and beautiful. We got out of the car at home and we took a little walk up the road. The fresh air and warm sunshine were good for our soul and the kids ran through the freshly fallen leaves and watched them as they rained down upon us. That all sounds dramatic and cheesy, but it was a perfect moment. In that moment, we were free.
Here we are, ten days later, and she’s still not 100%, but after a long week of more medications, she’s doing much better. Although, we have a long fall season ahead of us and will stay alert as we navigate the days and try to keep her lungs safe. We still aren’t sure what exactly triggered this latest episode. Could be a cold, but she clearly has some sort of fall allergy and we will be headed back to the allergist to have her evaluated for environmental allergies. They often don’t test them at a younger age because the results are unpredictable and you need a few season under your belt for your system to really register individual allergies.
I document it all in an effort to tell her story, our story and to let other parents know that they aren’t alone in worrying about their children and making great sacrifices to keep them safe…you have to remember the bad moments to really appreciate the good.
“The very things that hold you down are going to lift you up.” – Timothy Mouse, Dumbo
She’s the absolute strongest person I’ve ever known. She smiles through the hurt and quietly just deals with the hand life has dealt her. She is so sweet, quiet and kind, but has a fierce spirit inside her tiny frame. She’s a fighter and amazes me every day. She has faced great hardship that will only help her succeed in life by growing her character, maturity and ability to stay strong in the toughest of situations. I just wanted to say I’m proud of her. More proud than she will ever know. And I’m thankful for angels in scrubs and in exam rooms and hospital hallways who care for her, day and night and bring us fresh drinks, popsicles and any Disney movie we could ever imagine..