Pulmonology Followup

by Kayte

Lola had an appointment today with a pulmonologist specialist who wants to follow her case with intermittent checkups. On the one hand he said there is no major obvious cause of Lola’s recurring pneumonias, but on the other hand there’s also no magic fix. He thinks it might be an unlucky combo of preemie lungs, small stature and neurology (cough reflex) that make her particularly susceptible to respiratory infections. He wants to get a follow-up chest x-ray in March to see what Lola’s healthy lungs look like so we have a baseline. He also ordered a sleep study (which we weren’t able to get scheduled until October) to see if there is anything overnight that might be affecting her breathing or growth. In the meantime we’re still doing breathing treatments (Xopenex – bronchodilator and Pulmicort – steroid) 2X a day as maintenance. When I asked if there are any long-term side effects with these medications, our pediatrician mentioned that weight gain can be a side effect of the steroid treatment. Hah! Bring it. We have another follow-up scheduled with the pulmonologist in May. Making all of these future appointments made me feel a little bit better that we have something to look forward to other than another pneumonia hospitalization. Part of me just wants to keep Lola safe in a bubble until the winter flu season is over, but several doctors have assured me that it’s better for her to live her normal life. Sigh.


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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Hemangioma Post-Op

by Kayte

We were supposed to go to the doctor’s office for Max’s post-op followup, but Brody’s work schedule got messed up and we wouldn’t have been able to get Max to the doctor without also pulling Lola out of school. The doctor’s office offered to do the post-op over the phone, so I snapped a few pictures of Max’s recovering scar and emailed them to the doctor who said everything looked great. I spoke with a nurse on the phone who went over all the technicalities, including the fact that the biopsy of Max’s hemangioma came back negative, and she told us that we were in the clear.

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Double Surgery

by Kayte

Today was the day of Max’s hemangioma and Lola’s ear tube surgeries. We weren’t sure if scheduling them on the same day was crazy efficient or just plain crazy, but it ended up working out really well. They were both scheduled for around two in the afternoon, and we were able to all stay together during pre- and post-op. Surgery was an hour late, Max slept for two hours post-op, and we ended up driving home in rush hour traffic; so we’re really glad that we only had to do this whole thing once.

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Max and Lola were both amazing – there was no fuss and they both just went along with the flow. They each drank a shot of Versed (a sedative, aka “Happy Juice”) before surgery so that helped when it came time to take them away for surgery. Max’s medicine took effect right away and he got pretty goofy. Meanwhile Lola got super agitated and kept trying to climb out of bed (which she couldn’t do because the medicine makes them tippy). Different personalities shining through.

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Lola’s surgery only took a matter of minutes – we had barely sat down in the waiting room before the doctor came to talk to us. He said everything went well and they got a lot of thick, syrupy liquid out of Lola’s right ear. She’s on antibiotic ear drops for a few days, but otherwise back to normal activity. Max’s surgery took a little longer, but only about a half hour. The doctor said the incision ended up being a little longer than he anticipated, but it still shouldn’t be too bad of a scar. Max’s incision is closed with absorbable sutures, medical glue and covered in a skinny piece of derma-bond so we can’t see much, but it should be pretty healed up in two weeks when we go back for our follow-up appointment. Max is supposed to stay home from school tomorrow and take it easy, but back to regular activity after that.

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Very glad to have these two surgeries out of the way with relative ease!

Max
Weight: 37lb 8oz
Height: 41 inches

Lola
Weight: 29lb 11oz
Height: 40 inches


Yearly MRI

by Kayte

We drove back to the hospital this morning for Lola’s yearly MRI to check out her shunt. Today’s appointment was at 7am (Zzz) so we were up at the crack of dawn but we missed rush hour traffic. And we were the first appointment in so everything was on time and we were out of there in less than an hour. Lola did great during the scan. I still had them swaddle her in blankets, but they didn’t really tape her down tightly and she laid their perfectly still through all the noise. Since it is a Children’s Hospital they have these cool goggles and headphones that play a movie during the MRI, so Lola was perfectly content watching Toy Story. We have our appointment next Tuesday with the neurosurgeon to go over the results. Lola is doing great so we’re expecting all good news!

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Vascular Anamolies Clinic

by Kayte

We took Max to a Vascular Anamolies Clinic to have his hemangioma looked at. The appointment was supposed to be an opportunity to meet with four different doctors at the same time: pediatric surgeon, plastic surgeon, interventional radiologist and dermatologist. But, even though we booked this appointment months in advance specifically on a Wednesday (which is the only days they hold the clinic) and spent a good deal of time getting insurance approvals and drove downtown during morning rush hour…only one doctor showed up. The pediatric surgeon said Max’s is a fairly straightforward case: the hemangioma probably won’t shrink any more than it already has, and leaving it puts Max at risk of the skin catching/tearing, especially as he gets more active in life. The surgeon recommended that the hemangioma be surgically removed, a procedure that is statistically safer than getting in your car and driving to the doctor’s office. Which is all fine and pretty much what we expected, but it would have been way less hassle to go to a local pediatric surgeon and hear the same thing. I think our pediatrician will still tell us to go to the clinic for the surgery since it does require general anesthesia and Children’s Hospital specializes in kids.

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Weight: 36 pounds
Height: 3ft 5in


Infectious Disease

by Kayte

We enlisted yet another specialist at CHLA: infectious disease. Our pediatrician wanted us to follow up with them to see if they had any insight on Lola’s “trifecta” (viral, bacterial, fungal) of infectious diseases while in the PICU. Unfortunately, or thankfully (?), they did not have much to offer. They said the hMPV hit hard this winter, and it probably hit Lola harder because of her history, young age, and small stature. There’s not a lot we can do to prevent viral infections in the future, but as Lola grows older and bigger her immune system will be better equipped to fight them off. In the meantime she’s happy and healthy and growing!

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Weight: 26lb 14oz
Height: 38 inches


Routine MRI

by Kayte

Lola went in for a routine brain MRI today. We won’t get the results for another two weeks when we meet with the neurosurgeon. She has been doing great this past year so we aren’t expecting any surprises.


Endocrinologist

by Kayte

We finally had Lola’s long-awaited appointment with the endocrinologist today. He read through her history, did a physical examination, and ordered some bloodwork. Similar to the GI he wasn’t overly concerned with her case, but overall he does think she should be bigger than she is.

The bloodwork will tell us more about her hormone production, which can be adversely affected by hydrocephalus. The results will let us know whether we’re on the right track with hormone therapy, or if Lola would be in better hands with the GI or a nutritionist. We’ve been told this doctor is pretty conservative so we’re confident that he won’t prescribe something she doesn’t need.

The appointment was at CHLA and I was on hyper germ alert after reading about how bad the flu is right now. The article said flu cases at CHLA doubled as of Friday, and here we were walking into it on Monday. The parking garage was so full they had attendants stack parking cars. I tried to get Max & Lola to wear masks but that lasted all of about two seconds. Hopefully we got out of there unscathed.


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?


MRI Brain Limited

by Kayte

We spent another long day at the hospital today. Lola’s follow up MRI was scheduled for noon and an appointment with the neurosurgeon to follow at three. Lola has been acting and developing amazingly well since the cyst surgery, but we never know for sure until we look inside.

CHLA offers a procedure called a Limited MRI where they’re able to take a smaller range of images in a shortened amount of time. Full-range MRIs are an hour long and require sedation, but today (after a lot of waiting) we were in and out of the machine in less than five minutes. It was great. And rather than have to wait a couple days for the results, we walked right over neurosurgery to discuss.

Today (top) vs. July (bottom)

I was understandably nervous. We haven’t had good luck with MRIs in the past. I was hoping today we would just get a straightforward, good report for once, but I was trying not to get my hopes up. Turns out it was our lucky day. The MRI result looked great. Lola’s ventricles were smaller and the cyst looked like an undefined, deflated balloon. The surgery worked!

It’s strange to think that this neurosurgeon, who we have only ever talked to TWICE, may be someone who will have one of the biggest impacts on our life. I really wonder where we would be today if we hadn’t gotten a second opinion and had let that other guy put another shunt in our little girl’s head. As with everything, it’s probably best just to keep looking forward. After today I feel as though I can release the breath I’ve been holding since July and really embrace the progress Lola’s made this past month.


Homeward Bound

by Kayte

We got our discharge orders this afternoon and were on our way home by three. We spent thirty hours overnight in the hospital for brain surgery. It’s a little dizzying to have her back in our care so quickly after such an ordeal.

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Of course we’re glad to have everyone back under one roof. We just hope she continues to do well. We have a couple followup appointments scheduled so the responsibility doesn’t feel as overwhelming. We see the pediatrician this upcoming Wednesday and neurosurgery the following Tuesday.

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She’s Back

by Kayte

I don’t know how this girl can be so happy having just undergone surgery, but Lola is one smiley, giggly little baby. 20130720-113955.jpg
We both got a pretty decent night’s rest, considering the location. She’s taken a few bottles, and we’ll try solids soon. Neurosurgery came by and though she was doing great. Things are looking good for a smooth discharge. 20130720-114244.jpg
We had a little FaceTime with Max & Daddy this morning. Hopefully we’ll see them in person very soon!


Sleepover

by Kayte

We finally made it to our room. They said we were lucky – some people didn’t get beds tonight. And it’s a nice one too. Totally private with its own bathroom and shower.

Lola is doing amazingly well for being just a few hours post-op. We’re having a regular giggly girls’ night over here.

Meanwhile I’ve been up since 5am dealing with stressful hospital/surgery stuff. Time for some well-deserved rest. Goodnight!

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Recovery Floor

by Brody

Lola is out of surgery and on the recovery floor. We’re waiting for a room to open up, but the hospital is really full today so it might be awhile.

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We spoke to the doctor and he said everything went well. He was able to make four holes in the cyst(s) walls. The catheter in her head wasn’t draining at all – he thinks the cyst wall got sucked into the end and was blocking it. The tube in her tummy was draining fine so they just left it as-is. Only one incision – whew. That’s our definition of minimally invasive.

The doctor said the cyst walls are currently like tissue paper floating around in water. In time they should shrink back and attach to the walls of ventricles. In the mean time we have to be on the lookout for the the “tissue paper” blocking the shunt. He didn’t sound very certain that we wouldn’t have to do a shunt revision in the future, but we hopefully took care of the root of the problem. Which is a good start. Or a restart. For now we’ll just let her recover and do another MRI in a month or two to check things out.