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.


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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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.


Last Synagis

by Kayte

Max and Lola got their last Synagis shots for the season. For Max, it’s probably his last ever. I think most kids get them only for the first year, so it’s great that our pediatrician managed to get two years. If Lola is still so small next year she may qualify again.

We also had our wellness checkup while we were there. Everything checked out great. We’re supposed to take them to the dentist soon and start giving them vitamin D.

Max gained over a pound since our last visit He’s now 24lb 9oz which puts him in the 10-15% percentile unadjusted – that means he’s “caught up” to where he should be for a regular almost-two-year old. Lola only gained a few ounces at 17lb 9oz – she’s still not on the chart adjusted or unadjusted.


Monthly Synagis

by Kayte

Max & Lola went in for their monthly Synagis shots today. The doc always checks their weight so he can calculate the correct dosage. Max was 23lb 6oz and Lola was 17lb 6oz. They’ve been at that 6-pound difference for awhile now. We’re still waiting for the results from the endocrinologist so we didn’t get into a discussion about weight.

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I had to duck out of the appointment early and left Brody in charge. Later when I asked him how everything went he answered “TERRIBLE!” Apparently Max cried so hard after his shot he threw up all over Brody and the stroller. Then Lola cried so hard after her shot she threw up all over Brody a second time! Poor Brody walked out of that appointment covered in vomit. Yuck!


Home Away from Home

by Kayte

Whew what a morning we’ve had – and it’s not even noon yet!

We got up at 7am, loaded into the car, and headed to the pediatrician for a walk-in appointment (LOVE our pediatrician, btw). Max & Lola’s Synagis medication was delivered yesterday so I wanted to get them their shots ASAP. Usually babies only get approved for the uber-expensive shots during their first year of RSV season, but somehow our pediatrician managed to get them both approved for a second year. (Did I mention the love?) That medication saved Max from a really nasty illness earlier this year, so I’m really happy they’re getting the protection again.

I had a laundry list of other things to discuss with the pediatrician – when it rains, it pours:

  1. Lola fell and hit her head a couple weeks ago so we’ve been watching her extra closely. It’s hard to isolate her symptoms with everything else going on, but she has been extra fussy and grabbing at her ears/head. Just to be safe we’re going to get another MRI. He might not have ordered it with the traditional anesthesia MRI, but since CHLA can do the limited version with no anesthesia, he didn’t think there was a down side. Better safe than sorry.
  2. Lola has had two bloody noses in the past week – talk about scary! Both times I was out of the room, and when I came back she was covered in blood. Thankfully the doc wasn’t too worried about this one. He said it’s probably due to a combination of the dry air and dehydration from her sickness last week. A humidifier in their room at night and a little Vaseline in the nose should do the trick.
  3. Also due to last week’s sickness, Lola has been having very painful poops – screaming/crying the whole time. I feel awful for her, but it’s nothing serious – everything is just irritated from all that going and wiping. There’s not a lot we can do for her, just keep it clean and try not to irritate it any further.
  4. I still had the order for Lola’s bloodwork from the GI. We were waiting for our visit to the endocrinologist to do it, but since we’re not seeing him until January we got it out of the way now. Poor Little Miss’s veins are so tiny they always have a hard time drawing blood. They had to poke each arm to get enough to fill the vials, then she got a third poke for the Synagis. Lola was NOT a happy camper by the end of the visit.

Oh right, then I still have a SECOND sick child. We were a little concerned because some of our baby food was recalled this week, and we had mostly finished it all already. We were wondering if Max had food poisoning, but the doctor confirmed he’s just dealing with this stomach bug that’s going around. The poor guy has lost so much weight. A month ago he was 22lb 9oz and today he was only 22lb 1oz. I’m not too worried though. Lola was down to 15lb 12oz last week when she was sick, and she’s already gained it back plus more – 16lb 9oz! So that was a bright spot in our morning.

Between the office visit, blood work and Synagis shots we were at the doctor’s office for two hours. It was an exhausting start to our day, but I feel like we got a lot of good housekeeping done. All of the issues were kind of building up to a breaking point, so I’m glad to have my mind set at ease on most points.

Okay, now it’s noon. Can I have a glass of wine?


Report Card

by Kayte

After the drama at our last two routine wellness check ups I was nervous about going to the pediatrician today. Luckily my fears were for naught. Max & Lola both had stellar check ups.

High on the list was, of course, Lola’s head! Fontanelle soft, circumference smaller and ventricle size decreased. Hallelujah! The head ultrasound report did note an abnormality which neither myself nor the ped could interpret. Radiology recommended an MRI in the next few weeks for further evaluation. Our neurosurgeon said it wasn’t a concern, but thought the MRI would be good to have on the books as a baseline for the future comparison. (Which hopefully we will never need.)

The ped checked out Max’s lungs and they sounded good. No more RSV! He said we’re the first patients he’s ever had who have been on the Synagis shots and contracted RSV. I feel like we’ve had the “honor” of a few dubious firsts… A common side-effect of RSV is the chance of getting an ear infection or pneumonia 4-6 weeks post-sickness, so we’ll be keeping an eye out for that later this month.

Max’s weight gain was awesome. He is now 17lb 10oz – almost a pound since last month! Lola only gained a couple ounces at 13lb 12oz. Considering the fact that she just went through TWO major surgeries I’m pretty happy that she was able to gain at all. But the doctor really wants us to focus on feeding her and gaining weight. That means more solids, longer nursing sessions and possibly more frequent feedings. It’s hard because none of that comes naturally and it all takes a lot of coaxing (and patience). She does seem to be doing better every day though, so we will do our best and hopefully she’ll be able to catch up this month.

I feel a lot better after this checkup. Maybe now I can relax? Just a little…?


RSV

by Brody

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Lab Work

by Kayte

We dropped into the pediatrician’s office for what we hoped would be a quick set of pre-op lab work. The place was SO busy (i.e. germ central!) but two hours later we had blood drawn and Synagis shots (second to last one) so at least it was a productive trip. And our ped is so great – even without an appointment he took time to sit and talk with us about everything going on. I really like him.

Lola has learned to fear the doctor’s office. I tried to put her down on the table and she started screaming bloody murder. It’s really hard to see your baby crying out of fear. And it made it so difficult to get the labs and shots done. The lab techs couldn’t get her blood drawn the first time and we had to wait for a break in appointments for our doctor to do it. He got it, but slowly.

It makes me nervous for Lola’s next round of surgery. The nurses assured us that preemies don’t remember most of what happens in the NICU, and they don’t have the same fear or anticipation like an adult. But that doesn’t seem to be the case now. One of our therapists told us about a case of a little girl who had multiple heart surges and a big part of her therapy was learning to trust people again. I really hope we’re not heading down that road…but I guess we’ll cross that bridge if/when we come to it.

Don’t worry though! It’s not all doom and gloom in our house. The impending surgery is taking a toll on the parents, but the babies are in good spirits.

And we’re still managing to get out and about. Went on a nice 2ish mile run/bike today. Bought a new hands-free bungee leash for Sudlow so I can keep my hands on the stroller.

I guess just trying to keep things normal and enjoy our time together before Friday.

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Synagis

by Kayte

Told ya diaper timing make all the difference. Went in for Synagis today (which is a weight-based dose) and Max was 15lb 7oz (half a pound more than last week!). Lola was a less dramatic 12lb 5oz. Those are some big dirty diapers…


Rabies

by Kayte

We went to the pediatrician today for the kids’ monthly Synagis shots, which Brody affectionately calls a rabies shot. Now they have an extra boost of protection for the next month.

The beebs both gained about 1/2 a pound since our last visit less than 2 weeks ago. Lola is now 11 pounds even. Max is 14 pounds 9 ounces. Chunk-a-chunks!


Synagis

by Kayte

We stopped by the pediatrician today to get Max and Lola’s first monthly Synagis shot. Synagis is a medication that protects against respiratory syncytial virus (RSV) – a respiratory infection that’s pretty standard for adults/healthy kids, but could lead to hospitalization, re-intubation or worse for these little ones.

The medication is administered monthly during RSV season (Oct – Apr) and it’s pretty hard core. You have to qualify to even get it, and one of the nurses told us it’s about $1,500/shot! (yay insurance) Hopefully we can get through this first year without any major sicknesses.