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.

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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


Cleared Up

by Kayte

As of Wednesday Lola still had a little bit of lingering cough, so we scheduled another doctor’s appointment just to be on the safe side. Her cough started January 20th so today would have been three weeks of coughing. Magically she woke up this morning completely cough-free and we were able to cancel the appointment! The nurse laughed that she’s never sure if it’s a good thing when I call, but today at least it was a good call. I joked that hopefully we won’t see her again until the kids’ wellness visit in April. Ahh morbid medical humor. Knock on wood.

This adenovirus experience adds a little bit of believability to my calming mantra: not every cold turns into pneumonia, not every cold turns into pneumonia…


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.

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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.

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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.

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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.


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.


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.

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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.

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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.


Sty Eye

by Kayte

Lola had some redness and swelling on her eyelids this weekend so we found ourselves back at the pediatrician today. I have personally been dealing with a MRSA cyst/skin-infection for the past two weeks so I thought for sure I had passed something along to her. However I was pleasantly surprised when the pediatrician said that Lola just had a regular old sty that could be treated with warm compresses and should go away in a few days. That was easy.

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Re-check

by Kayte

We took Lola back to the pediatrician today to have her ears re-checked. They looked better, which means the infection responded to the antibiotic shot so it isn’t MRSA, just stubborn. They gave Lola a second antibiotic shot to try to clear the infection once and for all, and they also gave us a referral to a different ENT at CHLA to consult about tube surgery. The doctor said even if the shots clear this infection, she will be more susceptible to future infections so tube placement is still on the table. In the meantime at least she is feeling better, as you can tell from the photo below. 


Miserable

by Kayte

The first words out of Lola’s mouth this morning were “Will you take my temperature?” She wasn’t able to articulate her pain, but she woke up with a low-grade fever, feeling miserable and inconsolable.

Our awesome pediatrician was able to get us in on a Saturday and a good thing too. Lola’s ear infection is back and worse than before; both ears this time, red and oozing pus. The doctor said this is definitely not normal to have either a thrice-recurring infection or three separate infections within a month. They’re suspecting it may be a methicillin-resistant bacteria, which would explain why two 10-day courses of antibiotics haven’t cleared up the infection yet. We’ve certainly had our fair share of exposure to MRSA.

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The doctor gave Lola an antibiotic shot to give her some immediate relief and give us better insight into which antibiotics to take next. Monday we will go back to the pediatrician and hopefully be able to get a second opinion from another ENT. We are definitely still candidates for tube surgery. The doctor also drew a blood culture and will specifically be looking for any signs of a fungal infection; it’s unlikely since we think the fungus in February was a contamination, but it could also explain the low-grade fevers she seems to be getting weekly.

I was reflecting back on 2016 and realized that Lola hasn’t been healthy since January: pneumonia in February, recovery in March, sinus infection in April and recurrent ear infections in May/June. We’ve had our fair share of worry with the constant trips to the doctor and I’m sure she’s sick and tired of feeling sick. Let’s hope the doctors can figure this out soon and get Little Miss healthy.

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Tympanometry

by Kayte

Unfortunately Lola spiked a fever last night after we set up camp, and was still feeling warm (and miserable) this morning, so we decided to bring her back home from our camping adventure a day early. I needed to take her to the pediatrician anyway for a follow-up urinalysis (because her last urine culture came back borderline), but I also decided to make an official appointment because of this fever and the fact that she had had a random fever last Saturday/Sunday (while still on antibiotics). Turned out our parenting instincts were on point because Lola’s right ear was still not cleared up from the previous ear infection after ten days of antibiotics. Not only was the ear still red, but the doctor also performed a tympanometry which revealed very little vibration of the ear drum. I asked him if that could be the reason she doesn’t listen to anything we say, but he said no that’s just because she is four years old…ha ha He sent us home with a different, stronger antibiotic and a referral for an ENT to see if this is a more serious, chronic problem that might require ear tube surgery. Ugh.

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The initial urine culture looked clear, but there were some contaminants that indicated possible vulvovaginitis which could explain the frequent peeing (which she was also doing at camping). We’re supposed to administer vinegar sitz baths 2X/day for the next 5 days.


The Toll

by Kayte

Lola has had a fever for the last 36 hours and was crying inconsolably this morning so we took her in to the pediatrician. I thought maybe it was a UTI because she asked to go potty ten times in a row after breakfast, but it turned out to be an ear infection. I had the pediatrician check out Max while we were there too just in case, and his ears were also red. Antibiotics all around! Our pediatrician said this was the price we pay for our weekend/week of epic adventures. He also mentioned that he used to take his family to Legoland but they came home sick every time and eventually stopped going. Must be all those bins of unwashed legos.

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On a sickness side note: on the drive back from Legoland we were almost home when we heard Lola start throwing up in the backseat. We were in the carpool lane on the 405 in rush hour traffic and there was no way we were going to be able to pull over. So I hopped in back and cleaned up as best I could with wipes and a plastic bag. Judging by the amount of throw up it appeared to have been everything she ate since dinner the previous evening. Guess all of the rides and motion and stimulation were too much for her digestion. We made it home without further incidence and went straight from the car to the bath. Whew.

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Immune Function

by Kayte

We got a good call from the pediatrician today – Lola’s immune system responded beautifully to the PneumoVax 23 she received last month. He said her titer “levels were crazy high” which means she has good immune function and makes antibodies very well in response to pathogens. There’s still the question of her immune memory – how long these levels will stay therapeutic. One theory the pediatrician has is that when Lola originally received some of her vaccines (some as early as in the NICU) maybe her immune system was too immature to retain the memory, but now that she (and her immune system) are more mature things are working as they should. If this is the case he said she should still be covered for most of the major illnesses thanks to boosters and ongoing vaccines – DTaP, polio, pneumonia, flu. He also suggested that we do the MMR booster earlier rather than later to get her covered for that. The only vaccines she may be too old to get are for Hepatitis and Rotavirus. We may do another antibody titer later this year to re-check levels, but for now he (and we) are happy.


Wellness Visit

by Kayte

Max and Lola visited the pediatrician for their yearly physical today. Overall everything looked good. Max was 35 pounds and 40 inches (50th percentile for both). Lola was 26-1/2 pounds (3rd percentile) and 38-1/2 inches (25th percentile). The pediatrician couldn’t believe Lola’s height! He was so happy to see her growing.

They both received DTaP and Polio vaccinations. (4 shots, 0 tears!) Lola had her blood drawn for a PCV (pneumococcal conjugate vaccine)  antibody titer in response to the PneumoVax 23 she received last month:

“The antibody titer is a test that detects the presence and measures the amount of antibodies within a person’s blood. The amount and diversity of antibodies correlates to the strength of the body’s immune response.”- Healthline.com

We should have the results some time next week. The doctor said the hemangioma (strawberry birthmark) on Max’s arm should have gone away on its own by now, but since it hasn’t we were referred to the Vascular Anomalies Center at CHLA. They will assess the hemangioma to see if it might still go away on its own, or if we might need to consider surgery.

Despite everything these kids have been through they still LOVE going to the doctor.

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Max
35 pounds | 40 inches
Size 4T

Lola
26-1/2 pounds | 38-1/2 inches
Size 3T


PneumoVax 23

by Kayte

No rest for the party-weary. Max & Lola both went to school, then we took Lola to her first private PT session. Afterwards we stopped by the pediatrician’s office so Lola could get a PneumoVax shot. It’s a pneumonia vaccine that protects against 23 different kinds of pneumococcal. They are using it to test her immune memory. We will go back in 3-4 weeks for more bloodwork to see how Lola’s immune system reacted to the vaccine and hopefully that will tell us what we need to do next.


Immune Memory

by Kayte

So at our PICU discharge followup our pediatrician ordered some immunology bloodwork to see if there was any underlying explanation for Lola’s sickness. We didn’t have the results back in time for our infectious disease appointment, and I almost forgot to ask about it while we were at the ped’s office yesterday. I really wasn’t expecting the bloodwork to turn up anything unusual since Lola has rarely been sick (even with colds) since her NICU stay. Well, turns out it’s a good thing we ran the tests because something came back unusual. The good news is that Lola’s immune system responds well to germs and creates the antibodies to fight them off. The bad news is that Lola’s immune system doesn’t retain a memory of any of those antibodies. No immune memory means things like vaccines are not effective. Scary. Our pediatrician is going to run another set of tests that will tell us more. IT doesn’t really even have a name yet…he just described it as an inefficient or immature immune system. I’m trying not to freak out until we have more information, but I have a strong urge to curl up back into post-NICU lockdown mode with gallons of hand sanitizer.


Yay Sinus Infection!

by Kayte

We were sick all weekend. Fevers, coughing, runny noses, goopy eyes. Brody and I feared the worst after our Pneumonia February. So when I took the kids to the doctor today and he declared a sinus infection, I exclaimed “yay!” haha Simple, non-respiratory, treatable with antibiotics. Yay. I think this will be good for us to have a good, old-fashioned, normal sickness to get us back on the bandwagon. Hopefully everyone will bounce back in no time – and in time for birthdays!

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