Bittersweet Anniversary

by Kayte

Today marks the one-year anniversary of Lola’s discharge from her month-long hMPV-/MRSA-pneumonias + fungal-infection-scare hospital stay. It’s been a rough medical year since then; we’ve dealt with chronic ear infections, multiple surgeries, and another pneumonia hospitalization. Worse than that is the fear that grips us every time Lola spikes a fever, and a loss of confidence in our normalcy that I didn’t experience post-NICU. I’m conflicted between feeling invincible because we have conquered so much, and feeling that we have cheated death and are flying too close to the sun. Looking back at where we started I am in awe of the miracle of life and medicine, but I am also all too aware of their fragility and limitations. Ignorance is bliss as they say, and we have learned much these last five years. I am hoping time will heal these emotional wounds, as time continues to heal our little miracles and grow them into strong[er], [more] resilient little kids.

IMG_5655

On a more normal note, we spent the morning at the pediatrician’s office with two mildly sick kids. Poor Maxie has had a cough since last Monday and a runny nose that got markedly worse over the weekend. Max’s O2 sats were on the low-end of normal and the doctor said his lungs sounded wheezy, so we’re starting breathing treatments and have a prescription for antibiotics if Max doesn’t get better in the next day or two. Lola spiked a little fever this morning and had one goopy eye, but luckily her lungs sounded clear as a bell (yay steroids!). The pediatrician suspects that Max might be on the recovery side of this bug while Lola might just be starting it, but we have an antibiotic prescription for her too if she needs it.

We weighed the kids at the doctor’s office today. Max is approaching the 40-pound mark which means yet another carseat transformation; he’s too heavy for the LATCH anchors that make carseat installation super easy, so now we’re struggling to install the carseat using the shoulder-lap belt. After he grows out of this carseat configuration (65lbs/49in), he will move to a booster seat and use the car’s regular seatbelt (vs. the carseat’s 5-point harness). At 40 pounds he also exceeds the weigh limit for our regular stroller, but we haven’t really been using it much lately. Both kids prefer to walk and Max can unbuckle himself to climb out and/or unlock the brake and push himself around wheelchair-style. Slowly but slowly we are moving away from mounds of baby equipment.

Lola weighed in at 32-1/2 pounds – not only has she broken the 30-pound mark for the first time (yay!) but it’s crazy to think that she weighed 10 pounds less a year ago when she lost so much weight in the hospital. She’s 50% bigger than she was a year ago – wow!

Weight
Max 39-1/2 pounds
Lola 32/1/2 pounds


Rhinorrhea

by Kayte

It appears that the rest of the family caught the adenovirus that Lola had last week, and we spent the weekend sick, sick, sick. We didn’t feel too awful, but I have never experienced runny noses like this before. We literally used up boxes and boxes of kleenex over the course of this weekend. Ironically Lola seems to be recovering while Max and I are in the thick of it, and it looks like Brody might escape it completely. I talked to a friend whose family had something similar, and she said it took almost three weeks for things to clear up completely. Yuck. As much as I don’t like being sick, it was a nice cozy, rainy weekend to lay low, and I am happy with any sickness we can fight off at home that doesn’t turn into pneumonia. #Perspective. Maxie stayed home with me today, but Lola was okay to go back to school. I think those maintenance steroidal breathing treatments are giving her a much-needed extra boost to fight this stuff off.


Adenovirus Followup

by Kayte

After a few days of antibiotics and round-the-clock breathing treatments Lola started feeling much better. Her fever is gone, the cough is more dry, and she has been back in school. Out of an abundance of caution the pediatrician wanted to see Lola again today, and will continue to follow up with her until this cough is completely gone, but he said everything looks much better. We can cut back to every-six-hour breathing treatments during the day and will finish out her 10-day course of antibiotics.

IMG_5613 IMG_5614


Adenovirus

by Kayte

Over the weekend Lola’s cough got more junky, and yesterday she developed an ongoing fever. She stayed home from school this morning and we went back to the pediatrician this afternoon. They performed a rash of tests for RSV, flu, strep, and UTI (after an uncharacteristic bedwetting incident last night). The nasal swabs gave her a bloody nose (all over my white t-shirt), but a popsicle helped cheer her right back up. All the tests came came back negative so our pediatrician suspects it may be adenovirus which is going around right now. This virus causes fever, congestion and cough, but tends to stay in the upper respiratory tract (nose/throat) and not invade the lungs. Crossing our fingers that this is all it is and we can get through a regular non-hospitalized illness. The doctor sent her home with antibiotics (just in case, since the cough has been 10+ days) and every-four-hour breathing treatments (including overnight, Zzz…) until the cough gets better. She can go back to school when she’s fever-free with improving symptoms. We spend a lot of time in doctors’ offices.

IMG_5611  IMG_5612
I’m trying not to freak out as we approach the one-year anniversary of Lola’s first pneumonia, but she’s following an eerie pattern of late-January sickness that is turning my stomach into knots. On the plus side she has had no fever; I just have to keep reminding myself that not every cold turns into pneumonia, not every cold turns into pneumonia…


5-Day Cough

by Kayte

Last Friday Max and Lola both came down with a cough. It hasn’t been too bad, just a little gunky, no fevers, no labored breathing, but after five days it hasn’t gotten much better either so we decided it was time to take Lola to the doctor. Luckily the pediatrician said her lungs sound clear, and told us to just keep on with breathing treatments. He said if it’s not better 7-10 days from onset (since last Friday, so next Monday) to bring her back to check things out. In the meantime she’s fine to go to school.

We also talked about the pulmonology visit, and our pediatrician fundamentally disagrees with trying to fatten Lola up. While he does agree that more weight will protect her from illness giving her more reserves, he said that is only true of healthy muscle weight, not just any fat weight. He did agree that the sleep study was a good idea, because sometimes shallow breathing overnight (in Lola’s case 12 hours worth) can allow gunk to build up in the lungs and trigger pneumonia.

IMG_5599


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.

img_5349 img_5347

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.

img_5348

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).

img_9697.jpg
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.

img_5340


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.

img_5338

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.

img_5339


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.

img_5336

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.


New Cough

by Kayte

Lola’s ear tube infection cleared up just fine with the antibiotic ear drops, but she did spike another fever within that 3-day window so we started her on oral antibiotics. Part of me was glad because I thought finally we’d get rid of whatever this sickness is that has been hanging around for a month now. Everything was going well and Lola was healthy, until Saturday (on our second-to-last day of oral antibiotics) she developed another cough. Both Saturday and Sunday night she coughed, gagged and threw up in bed. Today (Monday) she spiked a fever so I kept her out of school and took her to the pediatrician. He said her lungs sounded good, and sent us home with more breathing treatments twice a day, and instructions to come back if things got worse. Lola took a long nap on the way home and was happy to be allowed to watch as much Daniel Tiger as she wanted while she rested.

img_5335


Tube Infection

by Kayte

Lola’s pediatrician wanted us to follow up with him after a week or so of breathing treatments for her cough. These past few days have been fever- and cough-free, so we thought today would be an easy visit. I should know better than to think anything medical with us is simple. As the nurse was checking vitals, she noticed Lola had a fever. Upon further examination we found that Lola’s newly-tubed left ear was gushing liquid. Ear infection.

img_5333

We were a little bummed because we thought these new tubes would help to prevent ear infections (which they do, to an extent) but the upside of the tubes is being able to administer antibiotics locally (e.g. ear drops) rather than orally. The other bonus is that all the yucky infected liquid comes out instead of building up in the middle ear and causing pain.

img_5334

The pediatrician did think that the ear infection in combination with the frequent fevers and on-again-off-again coughing was a little suspect. He thinks maybe Lola has a sinus infection that is wandering around her ENT (ear-nose-throat). In addition to the antibiotic ear drops, he also sent us home with a prescription for oral antibiotics in case her fever doesn’t clear up in the next few days. I’m ready to kick whatever this malaise has been and get on with a healthy December.


Still Coughing

by Kayte

Lola is still fighting the same phlegmy cough that sent her to the doctor at the beginning of the month. We’ve been on the fence about taking her back since she hasn’t had a fever and hasn’t been acting sick otherwise (not to mention a doctor’s office is a great place to catch new germs), but after three weeks of wet coughing (a lot of it at night, causing her to throw up in bed, resulting in late-nights showers and bedding changes) we finally took her back to the doctor. He said her lungs sounded clear (no pneumonia) but she was pretty gunky. He said it could be a lingering sinus infection (sans fever) or it could be that she originally got sick (and better) earlier in the month, but her body is still reacting to it (e.g. producing mucus). He sent us home with two breathing treatments, albuterol (bronchodilator) and budesonide (steroid), plus a nightly dose of Singulair (montelukast sodium) which is an anti-inflammatory used to treat allergies and prevent asthma attacks. The Singulair has a *fun* rare side effect of being able to cross the blood-brain barrier and cause nightmares and/or extreme mood swings, so we’ll have to keep an eye out for that. However the first day of all these treatments resulted in a cough-free night of restful sleep for the whole family, so at least now we’re feeling optimistic about it.

img_5280


Cough Cough Cough

by Kayte

Lola is still fever-free and acting spunky, but after five days her cough is lingering so we decided to take her to the doctor. He said she definitely sounded gunky and ordered a chest x-ray. I have been incredibly anxious about her catching another respiratory illness, but thankfully her lungs looked clear! He sent us home with breathing treatments and orders to rest until the cough improves.

img_8354

img_8355

November (left) vs February (right)

 


Post-Op Recovery

by Kayte

We are 3-days post-op from Max’s hemangioma and Lola’s ear tube surgeries. Max is doing so great that sometimes we forget he had surgery and accidentally pick him up by the armpits. But he says otherwise it doesn’t hurt and hasn’t asked for any pain medication. He’ll be good to go back to school tomorrow.

img_5131

Lola has had a pretty persistent cough since Friday, and over the weekend she developed a fever that spiked at 103.8* – yikes. We called the ENT doctor on-call at the hospital, but he didn’t think it had anything to do with the ear tube surgery since it is such a simple procedure. The degree of fever doesn’t necessarily correlate with degree of sickness either, and her fever responded well to Tylenol, so we’re just watching for now. Lola’s been sleeping more during the day, but super alert and acting like herself when awake, so we’ll see. Doctors always say to look at the patient, not the numbers.


Decolonization

by Kayte

Lola’s MRSA eye infection came back for a FOURTH time this week, so today I had a long conversation with our pediatrician about MRSA. Basically the MRSA bacteria lives in your nose and on your skin and usually does not cause infections in healthy people – it’s estimated that 50% of the population is colonized with MRSA. Unfortunately this year our family has experienced MRSA eye infections (Lola), skin infections (myself) and pneumonia (Lola). The pediatrician wants to treat the current eye infection plus start a decolonization protocol to stop new infections from forming. We’re starting a 21-day course of 4X/day antibiotic eye drops (Lola), 3X/day antibiotic nasal swab (whole family) and antimicrobial soap (whole family); plus a lot of extra laundering of linens/clothes and scrubbing of house surfaces. The pediatrician is trying to avoid oral antibiotics which kill lots of good bacteria in the body and can cause all sorts of additional intestinal problems.

This whole thing isn’t guaranteed to be 100% effective, but it’s worth a shot if there’s a chance of protecting our family (especially Lola). There’s a pretty good chance that the MRSA could come back (especially if we spend any more time in the hospital) but at least we’ll be clean for a little while. Plus, our 21-day course ends the day before Lola’s ear tube surgery and Max’s hemangioma surgery, so at least I know we’ll be “clean” heading into those two medical procedures.


MRSA Eye

by Kayte

The second time we took Lola in for her eye infection they were able to do an eye culture which came back positive for MRSA. She was on the correct antibiotic eyedrops last time and things cleared up, but this week the sties came back again in both eyes. We’re back on the eye drops for an extended 10-day course, plus a daily eye-washing regime with tear-free shampoo.

img_4967

I have talked to a couple different doctors about a MRSA-decolonization process that involves bleach baths and antibiotic nasal swabs for the whole family to try to get this bacteria out of our bodies. I’m still not sure how effective or beneficial it would be yet, but I plan to look into it more.