December Roundup

by Kayte

1/2/17 – Between regular holiday craziness and Lola’s hospitalization, December kind of got away from me. There was a lot I wanted to post before Lola got sick, and we’ve been having lots of fun with family and holidays since she’s been home. I’m still catching up with life in general, and will eventually get caught up on the blog too.

1/22/17 – Well I finally finished the December 2016 updates. Now it’s time to get cracking on 2017!


Don’t Stop Me Now

by Kayte

We celebrated the last night of Hanukkah tonight and rang in the New Year. We ate a fancy dinner at home and let Max & Lola use real glass plates and champagne [sparkling juice] glasses – ironically the only one that broke was while we were washing dishes after. We had a dance party in the kitchen to Queen’s “Don’t Stop Me Now” – cause I’m having a good time, I’m having a good time! We played a board game and stayed up “late” watching the ball drop in NYE on east coast time. It was a fun, special evening at home with just the four of us. When I reflect on 2016 it was dominated by medical difficulties – two pneumonia hospitalizations, chronic ear infections, multiple MRSA infections and two outpatient surgeries. I’m hoping for a very healthy 2017 with continued growth and development for my little ones. Don’t stop us now!


The 7th Night

by Kayte

Tonight we celebrated Hanukkah with Nana Bah, Uncle David, Aunt Julie, Cousin Booker and Cousin Ellie. 


O’ Hanukkah

by Kayte

Happy 6th night!


Sawdust Santas

by Kayte

This season my parents volunteered with an organization called Sawdust Santas which “builds and distributes heirloom quality, wooden toys and gifts to underprivileged youth” in Michigan. Part of the organization’s funding comes from selling other smaller toys, and a little grandma-sized elf brought Max and Lola each a wooden car kit. Today the kids spent some quality time building with their grandparents; Lola and grandpa made a school bus, and Max and grandma built a train engine.

The weather was beautiful today so we also went for a hike in our backyard. It was the first time we’ve ever had to drag Max and Lola out of the house – they said “no!” when we asked them if they wanted to hike, even though the whole family was going (Karen and Jessie left earlier this morning). They eventually had a change of heart, but their teenage years flashed before my eyes. 


Winter Waves

by Kayte

Whenever family is in town we are always drawn to the ocean. Today we spent a peaceful afternoon watching the waves and breathing in the fresh sea air. No matter how cold the air or water is, the kids always end up wet, but at least I’m wise to them now and remembered to bring a change of clothes. We left the beach feeling refreshed, and finished our ocean day with a seafood lunch.

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All I Want For Christmas

by Kayte

I got my Christmas wish this year – my whole family healthy and at home. The kids got what they wanted too: Lola a doll stroller with baby food, and Max a real workbench (just like daddy’s). My mom surprised us all with new stockings that she sewed and embroidered – they are amazing and will be cherished for years to come. The adults played our annual White Elephant/Secret Santa gift giving game which included Omaha Steaks, a luxe bidet, orchestral windchimes, a DNA test, Norwex cleaning supplies, and gourmet cookware. But the best gift of all was the gift of family – we are so blessed to have spent this day together in each other’s company.

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After a delicious Christmas dinner of turkey, stuffing, cranberry and mashed potatoes, we went for a bike-walk to make room for pumpkin pie. Merry Christmas everyone!

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La Brea Tarpets

by Kayte

We haven’t been able to get out and about too easily with Max & Lola’s rigorous breathing treatment schedule, but today we started scaling back on meds a little bit and were able to fit in an excursion between treatments. My dad has been wanting to re-visit the La Brea Tar Pits (or as Max pronounced it: tarpets, as in carpets) ever since his first visit in 2006 so we ended up there. We had been hesitant to visit the last couple years because Max went through a stage of being terrified of statues, but I’m happy to report that he is [mostly] over that fear (although the animatronic statues did give him pause).

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To the animatronic statue Lola just said, “Pooh-pooh.

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Tonight was also the first night of Hanukkah so we cooked a big brisket and fried up a batch of Latkes. L’chaim!

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Christmas Cookies

by Kayte

Today Grandma organized sugar cookie decorating for the family. Max and Lola did a great job spreading frosting and shaking sprinkles on their cookies, although an equal amount of both probably went into their mouths too 🙂

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We picked up Max’s glasses today and he’s also been great about wearing them (knock on wood). While they were waiting for the glasses to be ready, Max and Lola made an impromptu visit to the fire station to donate a board game to the Spark of Love Toy Drive.

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RSV – Followup

by Kayte

We had our appointment at the pediatrician’s office today for Lola’s RSV hospital discharge. She said Lola’s lungs sounded clear and that all her vitals looked good. We also had her check Max since we were there: his lungs still sounded a little gunky (since he’s a few days behind Lola on this illness) but his vitals also looked good and he seems to be recovering just fine at home. 

The doctor said we could start weaning back on the breathing treatments, eventually stopping next Monday which will be two weeks from the start of it all. We’ve been keeping up a grueling medical schedule at home – I had to make a chart just to keep track of everything (reminds me of the old days). It hasn’t left us much time for entertaining family. The breathing treatments alone take ~30 minutes each session between the two kids, and we’re doing them every 4 hours; plus we have to be hooked up to the nebulizer machine to do them. It doesn’t leave us much of a window to get out and about, but we’re enjoying our time together nevertheless. Hopefully we can get out a bit more over the next few days as we stretch out the breathing treatments to every 5-6 hours.


Family Travels

by Kayte

The first round of family has landed (mom, dad, brother) with more on the way today (aunt, cousin). There was so much I meant to get done last week before Lola was hospitalized, but it’s refreshing to be reminded that holidays aren’t about extra presents or a clean house. We couldn’t be more grateful that our family is together and healthy (or at least on the mend) heading into this holiday season. Simple as that.

In other news Lola’s glasses are in and she has been doing an unbelievably great job keeping them on. Knock on wood.


Eye Glasses

by Kayte

We requested an early discharge yesterday so we could make it to the second opinion eye appointment we were able to schedule with our old ophthalmologist on just two week’s notice. It was a crazy day – Lola and I left the hospital, drove home to pick up Max and daddy, then drove to the eye institute where the appointment of course took hours. We didn’t get home until late, exhausted, where whe still had to fix dinner, administer antibiotics and do breathing treatments (times two). 

The doctor yesterday confirmed that both kids need glasses, not necessarily for vision (which was the same or better than six months ago), but to correct alignment issues. Max needs glasses to correct his deviation/eye crossing, and the doctor thought that Lola would benefit from them too since one eye is slightly stronger than the other, although he was on the fence and felt she could have gone either way. He gave both kids a much milder prescription than the other doctor, and didn’t agree that it was such an urgent matter. It seems that the difference is a matter of approach; the doctor two weeks ago read the kids’ prescription with a machine while their eyes were dilated, and wanted to give them the maximum technically allowable correction. Yesterday’s doctor took a minimal approach, giving the kids just enough prescription to correct their alignment based on what they could tolerate. To demonstrate, the doctor had the kids try to read the eye chart with the old prescription and neither of them could see a thing – it was way too strong. Theoretically their brains may have adjusted to the stronger prescription after some time, but I doubt they would have been able to wear the glasses long enough to find out. We may need to increase their prescription over the next few months as their brains/eyes adjust, but I think we have a much better chance of them tolerating the glasses with the minimal prescription.

Even though it wasn’t urgent, we took the kids to an eye glass store today to get the ball rolling (especially since family is flying in and things are going to get crazy with the holidays). Lola picked out a pair right away and hers will be ready tomorrow. Max wanted black frames (like daddy’s) which won’t be in until Friday, so we’ll have to go back for his then. 


RSV – Home!

by Kayte

Lola had a great night and was discharged late this morning. We stopped by home to pick up Max and daddy, then rushed off to an important eye appointment which couldn’t be rescheduled (I’ll have to post more about all that later). We got home late after a long appointment and rush hour traffic, and then rushed around administering antibiotics and breathing treatments to two tired and cranky kids. It feels like we’re running a doctor’s office in our house; our kitchen counter looks like a pharmacy! But we’re home and (relatively) healthy so we’re happy, but tired. Goodnight!


RSV – Lively

by Kayte

Lola had another good day of progress. They switched her to oral antibiotics, decreased breathing treatments to every four hours (which we can do at home), and discontinued the IV hydration drip. She’s eating, drinking, going potty and acting like herself. As long as she maintains her vitals over the next 12 hours, the plan is to go home tomorrow.

Lola was in rare form this evening; cracking jokes, standing up in bed, throwing things on the floor. I told her if she didn’t cut it out she might get kicked out of here before she gets officially discharged.




RSV – The Corner

by Kayte

It appears that in these last 36 hours (knock on wood) Lola has turned The Corner. They were able to wean her from 2 liters of oxygen flow to room air (no nasal cannula!), stop her IV fluids, and decrease breathing treatments to every 3 hours. She’s still working hard, but able to maintain normal vitals. The doctors are talking about sending her home on Monday. For that to happen we need to switch to oral antibiotics and make sure she tolerates those (both stomach-wise and infection-wise), and decrease breathing treatments to every 4 hours, which we can then continue at home. The most important thing is getting the antibiotics right so she doesn’t have a flare-up/re-infection once we’re home.

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We had a nice day hanging out at the hospital; reading books, watching Christmas movies, eating picnic meals on her bed. It’s fun being at a dedicated children’s hospital – they do so much nice stuff for the kids. A few days ago a rolling mall came around and Lola was able to pick out Christmas presents for her parents (which they wrapped). Yesterday a library cart came by and let her pick out a book to read and take home. Today Santa Claus visited the hospital and all the kids got to pick out a toy. It seems every day someone is bringing by fun stuff; crayons, coloring books, stickers, bubbles, playdough, blocks. Unfortunately since Lola is in isolation she’s not able to leave her room (I went down to pick out her Santa present) or pet the therapy dogs :*( but everyone still does a great job of including her from a distance.

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Max had a good day too. He still has a cough, but wasn’t acting too sick. Antibiotics 2X a day and breathing treatments every 4 hours. He had fun running errands with Brody this morning – they got to meet some firefighters who were out practicing with the hook and ladder truck. After we did our afternoon hospital switch, Max and I played legos for awhile, then watched Rudolph with hot chocolate and hot tea. Nothing productive, just hanging out. Now it’s time for some much-needed rest so we can tackle the next day to come.


RSV – Assisted Cough

by Kayte

Lola had a rough night and not-so-good morning. She was requiring more oxygen support and desatting more frequently. Brody stayed at the hospital last night and gave me the report this morning, and I was anxious as I drove to the hospital for the switch. Wonderfully, by the time I got there, Lola had seemed to turn a corner. Her oxygen sats were up, breathing and heart rates down. She ate a decent amount for lunch at dinner, walked to the bathroom to pee and was downright feisty by bedtime (“Go poop on your head!” -Lola).

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They increased albuterol breathing treatments to every two hours which seem to be helping. They also started a therapy called assisted cough – a machine attached to a face mask that shoves a big breath of air into Lola’s lungs and then sucks it back out again. It’s supposed to get the mucus moving around and encourage Lola to cough on her own. She’s still on two different antibiotics and saline drip for hydration. At one point Lola was on 3 liters of oxygen flow, but they were able to wean that down to 1 liter by bedtime. Hoping for a good night and more improvements tomorrow.

Three Little Ella-phants

Unfortunately while I was chillaxing with Lola, Brody was having a rough afternoon with Max. First Max threw up all over both of them at the commissary at Brody’s work. Then Brody noticed that Max’s cough (which started this morning) was getting worse so they ended up at the pediatrician’s office. Max’s nasal swab came back RSV-negative (which the ped found hard to believe) but his lung x-ray was hazy with pneumonia and his O2 sats a little low, so he was sent home with antibiotics and breathing treatments of his own. What should have been Brody’s break from a sick kid ended up being more work than sitting here at the hospital. All I want for Christmas is a healthy family at home!


RSV – Day Five

by Kayte

Lola had a pretty quiet first night in the hospital and was definitely more comfortable than Tuesday night at home. We both managed to get some sleep. She is about the same today as she was yesterday – stable, but breathing heavily and requiring some oxygen support via nasal cannula. Lola’s cough has become more productive, which isn’t good or bad, just the way an illness progresses. She has been able to cough up some mucus, but is absolutely miserable doing it. She has had a fever off and on, treated with Tylenol, which is also typical for this stage in an illness. She’s getting breathing treatments up to every four hours, as needed, and is still getting antibiotics and steroids. Lola hasn’t been eating or drinking much, so they have her on an IV saline drip to keep her hydrated.

One hopeful thing that the doctor mentioned is that if we can assume today is day five of Lola’s illness (symptoms started on Saturday), then viral illnesses usually peak at the 3-5 day mark, which is why we haven’t seen much improvement from yesterday. The doctors are hopeful that if this is the peak, and having had time for the antibiotics/steroids to kick in, we should start seeing improvement soon. If not, they may need to dig deeper to figure out what is going on. Day by day for now.

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PALs – Holiday Performance

by Kayte

Today Max sang three songs at his second holiday performance at school. Lola obviously had to miss it because she is in the hospital, which is a shame because they’ve been practicing since Thanksgiving. Last year Max and Lola just stood on stage looking dazed, but this year Max sang along to all the words – and he even introduced their class to the audience. So proud of my big guy.




RSV – Hospitalized

by Kayte

We had a harrowing night of labored breathing, fever spikes, every-four-hour breathing treatments, Tylenol administration and restless-to-no sleep. I spent the night counting Lola’s breaths per minute, trying to figure out if she was “getting worse” (40-50BPM). I knew that treating RSV at home would be miserable, but I also wanted to make sure that we pulled the ER-trigger at the right time. I finally got sick of the anxiety of subjective decision-making, and in the morning I sent Brody to pick up a home O2 monitor from the pharmacy. I knew it probably wouldn’t be as accurate as the doctor’s version, but when Lola’s reading came back at 91 I knew it was time to call the pediatrician.

They had us come into the doctor’s office to take a look at Lola, where her sats were 93-96 on the professional equipment. The doctor decided (thankfully) that this was too much for us to handle at home, and sent us to the ER for possible admission. The ER at noon on a Wednesday was blissfully empty, and we were ushered straight into an ER bed. The checked vitals, took a chest x-ray, and administered a triple dose of breathing treatments back-to-back-to-back. The chest x-ray was a little patchy (think, walking pneumonia) and Lola’s oxygen saturations were still in the low 90s, so they decided to admit us to the hospital overnight. While we waited for a hospital bed, they gave Lola an oral steroid and started her on two antibiotics (Ceftriaxone + Azithromycin), again, to treat/prevent a secondary illness from taking hold.

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It took a long time to get into a hospital bed, but we were soon settled in and passed out from exhaustion. We are understandably anxious about a repeat hospitalization for pneumonia (RSV is related to hMPV, which is what sent us to the hospital in February) but, objectively, Lola is definitely not as sick [yet] as she was at this point of our hospitalization in February. The big question right now is where are we in the progression of this illness – just beginning? middle/peak? – and where does it take us from here? Questions that unfortunately we can’t answer right now.

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RSV – Respiratory Syncytial Virus

by Kayte

Lola’s cough got a lot worse last night. Around midnight we heard her start coughing and she threw up in bed. I cleaned her up in the shower while Brody changed the bedding. As I went to put Lola back into bed, I noticed that she was breathing very rapidly. I wasn’t sure if it was respiratory, or if she was just worked up from the ordeal, but I decided to do do another breathing treatment. She seemed a little better after, so I put her back to bed.

At 4:30am Lola came into our room and crawled into bed with us (she never wakes up during the night) and again I noticed that she was breathing very rapidly and had a fever. Her breathing was labored enough (40-50 breaths per minute) that I decided to phone the on-call pediatrician to see what they said (I was having February flash-backs at this point). The doctor suggested that we give Lola some Tylenol, since high fevers can cause rapid breathing, and do another breathing treatment. If Lola wasn’t doing better after that, we should bring her in to the office that day. Lola improved a bit but was laboring so we made an appointment for that afternoon.

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Unfortunately our regular pediatrician wasn’t working today, but we met with a new doctor who had just started at our office after having worked at CHLA for many years (+1). She spent a lot of time combing over Lola’s history and trying to put all the puzzle pieces together. It was nice to have a fresh set of eyes to look at an old case. Lola’s oxygen saturation was 95 when we got to the office, and improved to 96 after an in-office breathing treatment. Oxygen saturation above 95 is okay to be at home, 90 and below warrants a trip to the ER, so Lola was kind of riding the edge. The doctor said Lola’s lungs didn’t sound horrible, and she ordered a chest x-ray to check for pneumonia nasal swab to check for flu/RSV (respiratory syncytial virus). Good news/bad news – no pneumonia/swab came back RSV-positive, that nasty virus we spent the first two years of the kids’ life vaccinating against. (In what crazy world is RSV positive “good news”…?)

We left the office hopeful because Lola is bigger and stronger now, and lots of kids (even healthy infants) are able to fight it off at home. We were sent home with orders to increase breathing treatments to every four hours. To be on the safe side the doctor also started us on a new antibiotic (Cefdinir) to help protect against a secondary illness setting in while Lola’s immune system is weak. We need to watch Lola very closely given her history and the fact that she is on the edge of home/hospital treatment, but it would definitely be better to let her get healthy in the comfort of our own home if possible.