PICU Followup

by Kayte

Lola had her discharge followup with the pediatrician today. He checked everything out and said she looked good; even her ear looked clear. He told us to keep an eye out for fevers and/or coughing which could indicate an infection relapse. He also suggested a followup with the infectious disease department at CHLA to see if they had any insights about her trifecta of viral, bacterial and fungal infections. They may also do an immunology workup to see if that gives us any more information. I have a hard time believing that she has a weak immune system when I’ve taken her maybe once to the pediatrician for an illness visit in her 3+ years post-NICU, but you never know.

We decided to keep Lola out of school for the week and let her go back next Monday. We hope it will allow her to regain some of her strength to contend with a class full of boys. We also thought it was a good idea to keep her isolated so we can keep on eye on her symptoms; that way we won’t wonder if a fever/cough if something new she caught at school, or something more.


So Happy Together

by Kayte

Sunday was so refreshingly normal. We reveled in the novelty of the four of us just being in the same room together. It was wonderful. Lola adapted even better than I thought. She seemed to get right back in the swing of being home. She even walked around on her own a bit, although we are keeping a close eye on her to make sure she doesn’t fall. She ate like a champ, including a big bowl of fattening ice cream.

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We have a follow up with the pediatrician this week, and have to keep a close eye on her temperature. The responsibility of watching out for a fever is kind of nerve-wracking, but a price we’ll gladly pay to have her home.


Discharged

by Kayte

She’s home! 

25 days in the hospital. Whew.


Ear Infection

by Kayte

Lola’s fever continued throughout the night and into this morning, spiking at 101.+° a couple times and coming down in response to Tylenol. The fever itself wasn’t high enough to be alarming, but trying to figure out the cause of it was. This morning we were all worried: not sure what it meant for her well-being or going home. The doctors were collectively trying to figure it out, when the intensivist decided to give Lola a thorough physical examination. He found that her right ear looked infected, which would be a totally reasonable explanation for the fever. She’ll get a couple more doses of IV antibiotics, and if she responds well to it over the next 24 hours they’re still planning to send us home Saturday. Rooting for simple ear infection, please! Something normal!

We didn’t get much sleep last night. In addition to the fever, Lola’s IV went bad during her 4am flush so they had to replace it. We were lucky it lasted this long; Amphotericin is really hard on the veins. Lola didn’t get a chance to go outside today due to low staffing. Grandpa came to the hospital to say goodbye before he gets on a plane tomorrow. Lola’s moods alternated between her happy self and feverish tears, happily ending on a good note towards the end of the day. Really hoping tomorrow night finds everyone comfortably sleeping in their own beds.


Low-Grade

by Kayte

Agh Lola spiked a low-grade fever this afternoon. It came back down quickly and she’s not acting in any other way sick. Her CBC numbers also looked great, but the fever still prompted the doctor to order another blood culture. She had a bit of a runny nose today too, so maybe this could just be a normal-kid cold and not another infection. Please can we just get back to normal. 

 
Infusion was moved up to 11am today. Nana came to visit this afternoon. We did more walking and spent some time in the sunshine. Watched Sesame Street, read books, colored, and organized raisins in cups. 


Infusion

by Kayte

Day 22. No growth in any of the cultures. We rendezvoused with Max outside. Lola hopped off her couch and out the door of her room, wanting to walk around the PICU for nearly an hour: some of it even on her own. They looked into getting home health care for us to finish the infusions at home, but no one would take Lola’s complicated combination of being a pediatric patient, with an IV (not a PICC), and on amphotericin meds. Looks like we’re seeing this thing through until Saturday. Lola had been getting her infusions from 4pm-6pm, with 30min of prep beforehand and an hour of flush afterward. Today I asked the doctor to start moving Lola’s infusions earlier in the day each day, so by the time Saturday rolls around her last infusion will be early in the morning and we can be out of there as soon as possible. #exitstrategy #gameplan

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Weight: 25lb 2oz


Three Weeks

by Kayte

Today marks three weeks in the hospital. Not a milestone we were hoping to hit, but here we are. Nana came to hang out with Lola this morning while Brody went into work early. They read books, colored, and made paper crowns. We spent a long time outside in the sun; well over an hour and Lola didn’t cry once. She walked all the way down from the PICU, and all the way back. Still with hand holding, but smiling and laughing the whole time. No growth from the blood cultures, but it’s still too early for that to mean anything definitive. 

   
 


Another Day

by Kayte

Nothing much new today. We’re just waiting on sensitivity testing and blood culture results. Sensitivity testing to tell us if there’s a less harsh anti-fungal that Lola could be taking; possibly oral, and at home. Blood cultures to see if any more fungus grows. We need three negative blood cultures in a row to be cleared. There’s one from the 20th, one today, and one tomorrow. It takes at least 4 days for the fungus to grow, so we won’t know anything for a couple more days. They stopped Lola’s breathing treatments today because her lungs sound great – not even a trace of the pneumonia. Today was also the last day of MRSA antibiotics. She’s basically a healthy kid stuck in a hospital room.

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We decorated the top of Lola’s fort/tent with stickers. Max and grandpa came for another visit. Max was much less shy this time around, and Lola didn’t seem bothered outside. She only cried once when Max stole her sunglasses. They chased each other around the bushes (Lola with assistance), hit each other with sticks, and wrestled grandpa in the grass.

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Rendezvous

by Kayte

Max met us outside the hospital during Lola’s sunshine time. It was the first time they had seen each other in person in 18 days. Lola walked out of the hospital doors and started yelling “Max! Max!” as soon as she saw him. Max was a little bit shy at first and hid behind my legs. But the ice was soon broken and they were hitting each other with sticks in no time.    
 

The official report is in and the fungus finally has a name: candida ciferrii. The lab is now conducting sensitivity testing to see if there is a less harsh, more accurate anti-fungal that we can use. If it happens to also be one that is available orally, we could even finish our ten-day course at home. More likely, as slow as this stuff is responding in the lab, we’ll have finished our ten days of IV meds before the sensitivity is found. But a girl can hope. 


Candida Ciferrii

by Kayte

The lab results are still not final, but they have a tentative name of a fungus: candida ciferrii. The best case scenario is Lola in the hospital for ten days of IV anti-fungal medicine, and then home with no meds. She started anti-fungal meds Thursday, so ten days would be next Saturday the 27th. Best case scenario is also that one of the follow-up blood cultures comes back negative to show that the anti-fungal is doing its job…and that she doesn’t catch some other crazy-rare-we-never-see-this-disease in the next seven days of being in the hospital.

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We ventured outside again today: Lola burst into tears. The nurses built a “tent/fort” with a sheet above Lola’s bed, which she loved. She has been the most “Lola” I have seen since pre-hospitalization (aka January); loud, laughing, joking, mischievous. I’m ready to be home.


Fresh Air

by Kayte

For the first time in 16 days Lola got to leave the hospital and feel the sun on her skin. She walked the entire way (holding hands) from the PICU, down the elevator, and out the front doors. It was a nice experience for both of us, although one that overwhelmed her in the end. After about ten minutes of sitting in the grass she burst into tears and we carried her back inside.


 

In other news – we have no new information about the fungus.

Weight: 24lb 11oz


Fungus

by Kayte

So in the ninth hour just as we were gearing up to go home, Lola’s 5-day blood cultures grew a fungus. What. The. Hell. She has a fungal infection in her bloodstream. This new information threw everyone for a loop, and we’re trying to figure out what the heck is going on and what to do about it. There were two blood samples taken on Saturday the 13th, one from her PICC line and one from a blood draw from the skin. The PICC sample hasn’t grown anything, but the skin draw grew the fungus. In a healthy patient with a normal health history and no artificial hardware, the doctors probably would have sent us home with oral meds and instructions to come back if she wasn’t feeling well. But with Lola’s medical history, current vulnerability, and VP shunt, the doctors are acting aggressively out of an abundance of caution. We started an anti-fungal medication called amphotericin which is strong and harsh, but should cover all our bases until we know more. Fungus is very slow growing and the sample didn’t even grow enough to identify the specific type of fungus yet, so right now we’re kind of shooting in the dark. Hopefully by tomorrow the fungus will have grown enough of a colony to identify the type so we know what we’re dealing with and how to better treat it. They also pulled out her PICC line just in case it was infected, and sent that for a culture. We will have to wait another 5 days before we have any information from that, but it could be the key to how long and aggressive our course of treatment will be. Fungal infections can take months to clear up. In the short term, we’re not going home any time soon.

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Walker

by Kayte

Lola has another good day. Each day she’s becoming more and more animated. She was chatting up a storm today. We’re getting to the point of being a little stir-crazy cooped up in a (fortunately private) hospital room with a semi-energetic toddler. At least now that she is hooked up to fewer wires she’s able to move around a bit more. She likes to get out of bed and sit on the couch, and she’s even able to stand and walk around just holding one hand. She’s so much stronger than even two days ago when the PT had to help support most of her weight.

She gained back almost another 1/2 pound and is eating well. I think she’ll do even better once we get her home and can start making her more familiar foods. This hospital fare is obviously not the best, although they did let her order a filet mignon from the adult menu for dinner tonight! They stopped one of her breathing treatments (pulmozyme) and stopped her CPT therapy, so respiratory-wise she’s just getting pulmicort (steroid) twice a day. They might send us home with the pulmicort like they did in the NICU. Tomorrow will be day 5 of the blood/urine cultures so, assuming they’re still negative, we will stop the second antibiotic. That just leaves us with the MRSA antibiotic (vancomycin) which they will switch to an oral dose at noon tomorrow. If Lola is able to stomach that we may be home free on Friday!

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The doctors did warn us that it could still be a long recovery once we get Lola home. She may not be able to walk by herself, and might require outpatient PT. Her lungs are still damaged and weak, and could take months to fully recover. They also recommended that we seriously consider keeping Lola out of school until this cold/flu season is over (April-ish) because she will be so vulnerable. I obviously don’t want to go through this ever again, but it’s kind of throwing me for a loop. We were on germ-lockdown the first two years of their life post-NICU and I had just finally started feeling “normal.” I know that this could (and does) happen to perfectly healthy full-term kids, but I just hate this feeling of being scared of every germ, cough, and sniffle. I guess ultimately we will just have to see how Lola does at home and take our cues from her. April isn’t too far away after all…

Weight: 24lb 4oz


Goofy Girl

by Kayte

Today was a big day of milestones. 1) Lola is off the nasal cannula! Totally breathing on her own at room air. Her lungs are still diminished and will take awhile to fully heal, but now she’s more like a kid with a cold than a kid with a critical illness. 2) She’s been upgraded to regular pediatric status – no more intensive care, although we (any many of the nurses) are hoping they let us stay in our private room in the ICU until discharge. 3) Lola is free of all tubes and wires except for a small pulseox monitor on her big toe. She still has the PICC line for Q6 antibiotic administration, but in-between doses she’s unattached.

The final word on her MRSA infection is that she will need to be on antibiotics until Monday, February 22nd. The majority of the doses need to be through IV, but we could get her home a few days early if she’s able to take the antibiotic orally. On Thursday the 18th we will switch her to an oral antibiotic in the hospital to see if she can handle it, and if all goes well we could be going home on Friday the 19th.

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Lola’s appetite was much better today. We started placing special orders from the adult menu; like sausage & bacon for breakfast, which she chowed! She’s eaten peanut butter & crackers, chips & guacamole, pizza, a pat of plain butter, and milkshakes. Her weight check today was a 1-1/2 pound gain from yesterday which everyone was really happy about. She’s still 2lb less than when she was admitted, but at least we’re moving in the right direction.

Lola was even more alert today and starting to talk more. Her voice is still quiet and hoarse, but she’s talking in sentences rather than one-word whispers. She’s very mischievous right now. Her favorite activities are bonking her stuffed animals, pretending to hold your hand while nibbling your fingers, chewing on her tubes/wires, emptying boxes of kleenex/wipes, throwing stuff off the bed, etc. Making up for lost time I guess.

Weight: 23lb 12oz


Super Lola

by Kayte

Lola had another her great lung day. They downgraded her machine from a high-flow Vapotherm to a low-flow cannula, and continued to wean her support. She’s currently on 1 liter of flow at 21% oxygen (room air), which I think is as low as you can go. Lola continues to get breathing treatments (pulmozyme and pulmicort) and CPT (chest physiotherapy). She has also been getting PT once a day to work on strength and balance; she’s sitting up much better, but still can’t walk unassisted. The PT warned us that Lola will probably not be able to walk on her own when she goes home.

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The doctor’s two major concerns now are infection and eating. The blood and urine cultures didn’t grow anything these last 48 hours so I think we are cleared in terms of a secondary infection. We are still waiting on infectious disease to give us the word on her MRSA status, and how long we might be in the hospital on antibiotics to treat it. Eating-wise Lola isn’t throwing up anymore, which is a good thing, but she still is not eating much. She has lost 3-1/2 pounds (15% of her body weight) since we were admitted to the hospital, and the nutritionists are trying to figure out how to get more calories into every bite she takes. We’ve tried peanut butter, avocado, olive oil, yam, butter, nutritional drinks, ice cream, and protein shakes; all with meager success. Progress is slow, but her appetite does seem to be returning a bit. In the meantime we’re just trying to feed her often and make sure she’s drinking lots of fluids.

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And real clothes – yay!

Weight: 22lb 0oz


St. Valentine

by Kayte

Lola had a busy Valentine’s day with lots of visitors bearing balloons, chocolate, pastries and toys. She wanted to get out of bed and sit on the couch in her room, and once she got there she wouldn’t leave! She was so happy to be out of bed. She “walked” the few steps from bed to couch, and “stood” for a few minutes while we changed out linens. I use quotations because she is very weak and off-balance so she required quite a bit of support for both those activities. She was even a little wobbly just sitting up on the couch. But she will get stronger and her stamina will improve.

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Lola’s lungs are performing absolutely beautifully. Her lung x-ray this morning was improved, and they’ve continued to wean without a single desaturation or coughing episode. However, this fever she spiked yesterday has everyone on edge, and might keep us in the hospital long after Lola’s lungs have healed. The initial fear was a secondary infection; we’re still waiting for the blood and urine cultures to finalize. If it’s a new infection, we could be in the hospital for another 7+ days for antibiotics.

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The doctor also looked back on some of Lola’s old respiratory cultures and found something interesting in the lab. When Lola was first diagnosed with MRSA they started her on a very strong, very broad antibiotic called vancomycin to cover all our bases. Then when infectious disease did the sensitivity testing on the MRSA, they found that it was particularly susceptible to an antibiotic called clindamycin, so she was switched to that. Infectious disease continued to grow the MRSA bacteria in their lab, and they found that it inexplicably developed a resistance to the clindamycin after a couple days. The doctor said in his 20 years of practicing medicine he’s never seen this happen, but it has been documented as medically possible. So this afternoon they switched Lola back to the original vancomycin antibiotic and are really hoping that her fever was a flare-up of the original infection, not a secondary infection. We’re not sure what this means for her course of antibiotic treatment or how much longer it will keep us in the hospital, but we should know more in the next few days.

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All Smiles

by Kayte

It’s like she can’t stop smiling.

We’ve been weaning vent settings all day and Lola is still satting great. But we still have a long road ahead of us. At least another 3-5 days in the hospital, a week of rest at home, and possible outpatient PT to regain her strength. They weighed Lola today and she has lost a whopping 3 pounds during her hospital stay. At 25-1/2 pounds to start, she didn’t have much to spare. Extubation was a huge step, but it just moved us out of the critical phase and into the serious healing phase. Lola also spiked another fever today so they’re running a barrage of blood/urine cultures to find the source and starting her on a second antibiotic to cover whatever’s not being covered by the MRSA-antibiotic.

All of that aside: being here with her, seeing her smile, hearing her croaking laughter; it feels like we won the lottery.

Weight: 23lb 8oz


Extubated!

by Kayte

The nurse said in 25 years of nursing she’s never seen a kid come off the vent smiling this much. That’s our girl!

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SOAP

by Kayte

Sometimes you have to take a small step backward to make a giant leap forward. Last night, after Lola’s vomiting episodes, the doctors ordered another x-ray to look at her intestines. The x-ray revealed a large poop ball (lower-left) blocking her intestines. They gave her an enema, she passed the blockage, and they were able to slowly wean down on the vent settings throughout the night. The blocked intestines could have been compressing Lola’s lungs and making it hard for her to breathe. 

  

The doctors hoped that the poop would solve Lola’s vomiting issues, and they considered restarting feeds,  but she continued to throw up saliva throughout the day. My hunch is that the breathing tube is triggering her gag reflex and causing the vomiting, because it always happens during a coughing fit. They a going to hold off on feeds for now, probably until she is extubated. They are going to start TPN (Total Parenteral Nutrition) through her IV so she’s getting some calories and nutrients. They also inserted a Salem sump which is a tube that goes into her nose and suctions out the contents of  her stomach. (aka a “sump pump” according to Brody.)

We are getting closer to extubation! They were able to wean her vent settings to the lowest settings yet and her oxygen saturation a were the highest they’ve been since she was admitted to the hospital. Lola’s also been breathing “over the vent” (initiating her own breaths) for most of the day. The doctor said he can “see a light at the end of the tunnel.” They can do a trial run with the tube still in place by turning off the vent settings and watching how she does. Maybe tomorrow. She’s getting a few doses of steroids in preparation. The doctors use the acronym SOAP to determine a patient’s readiness for extubation:

  • Secretions – can the patient dislodge the gunk in their lungs? With the vent the RT is able to suction mucus directly from the lungs, but Lola has been coughing very forcefully on her own (which is how non-incubated bodies naturally clear up pneumonia) so she could probably take care of them on her own now.  
  • Oxygen – how much oxygen does the patient require? Room air is 21% oxygen and Lola’s vent settings are at 32% FiO2. She’s getting close, and a nasal cannula could easily provide any extra O2 support she needs. 
  • Airway – is the trachea clear and open? Lola’s seems to be fine – she hasn’t had any problems with bronchospasms. The breathing tube itself can cause some damage to the airway, but the steroids she is getting should counteract any ill effect. 
  • Parameters – are the vent settings appropriate for extubation? Lola is breathing more often than the vent rate of 20bpm on her own, and the FiO2 of 32% can be provided with a nasal cannula. The major setting the doctor was weaning today was the PEEP – Positive End Expiratory Pressure – which has to do with the internal expansion of the lung after exhalation. Lola started the day with a PEEP of 10, they were able to wean her to a PEEP of 6, and normal human-generated PEEP is 5.

After they extubate there is always a chance of re-intubation if Lola’s body isnt quite ready, but of course we hope to get her healed to a point where that isn’t the case. After extubation we will probably still be here for another 3-5 days for continued healing and observation until she is healthy enough to go home! The light at the end of the tunnel.
  


Distracted

by Kayte

A lot of people have asked how Max has been handling all of this, so I’ll do a quick post about him. We have been honest with him about what is going on and explained things on an age-appropriate level. He knows that Lola is sick, that she is staying at the hospital, that the doctors are trying to make her better. We have FaceTimed with the two of them and he didn’t seem phased by all the tubes and wires.

We’re trying to maintain a normal schedule for him, and keep him busy and distracted in-between. This past week Max has enjoyed an epic sleepover with his cousin, train rides, a birthday party, a kitty play date, and lots of quality time with grandpa. (A big THANK YOU to everyone who has helped out.) Grandpa takes Max to school while Brody and I tag-team between hospital/work/home. We try to get one of us home with Max in the mornings before school, and at night for dinner/bedtime. It’s a lot of different needs to juggle, and we’re stretched thin even with the extra help, but we’ll manage until we get this little girl home.

Overall Max is handling things really well. He asks about Lola, but it’s not his main focus. He’s asked why her bed is empty at night, he wanted to know when the doctors were going to “stop Lola being sick,” and last night he was very hopeful that I would bring Lola home from the hospital with me. I think he’s been more affected these past couple days; he’s been more clingy, whiny and emotional. His eyes filled up with big alligator tears when I said goodbye to leave for the hospital this morning. These kids break  my heart. Hopefully things will be back to normal soon.