RSV sucks!!!

RSV:
Respiratory syncytial virus (RSV) is a virus that causes infections of the lungs and respiratory tract. It's so common that most children have been infected with the virus by age 2. Respiratory syncytial (sin-SISH-ul) virus can also infect adults.

In adults and older, healthy children, the symptoms of respiratory syncytial virus are mild and typically mimic the common cold. Self-care measures are usually all that's needed to relieve any discomfort.

Infection with respiratory syncytial virus can be severe in some cases, especially in premature babies and infants with underlying health conditions. RSV can also become serious in older adults, adults with heart and lung diseases, or anyone with a very weak immune system (immunocompromised).

So Riley is still dealing with the RSV and will be for a few weeks. It will take up to 6 weeks for it to fully clear her system. Today has been about helping her rest and many visits from the Respiratory Therapist to make sure Riley is clearing the gunk out and able to heal from this illness.

PT/OT has been put on hold for now as she needs to get better from this first. We did start with them yesterday though and we're learning many new things we'll be doing with our baby girl. Riley responded well and we now know certain positions to help put her in to aide in her strengthening of her muscles etc. After just 3 days in a coma anyone child/adult begins to atrophe so she will definitley be working hard to regain the muscle strength she's lost.

Through her coughing spells today though, she's really been working on her tummy muscles and strengthening her core :)

We're still on the PICU floor for the immediate future and we're fine here for now. The nurses here and really all staff in general are fabulous. We've been given some verbal tools to use once they discuss floor transfer in the next couple days to help us possibly secure a more private room.

I'll be here tonight so will probably post a more detailed update then. For now I want to share with you something Dave and his friend Victor have been working on. If you don't know I attended USC (University of Southern California) for undergrad. The moto is Fight On! Being part of the Trojan family has been such a wonderful experience for my family and so along with the Team Riley logo they came up with this:

They ran a short run of these shirts yesterday and we are wearing them with pride. Even Logan got one!

If you'd like one we'd like to get you one and just ask you pay shipping. We'd also like you to take a picture wearing your shirt and email it to us. We'll put a book together at some point so we can show Riley ALL the people pulling for her. This is a way we can say thank you to ALL of you near and far who have been praying, keeping Riley in your thoughts, emailing, messaging, calling, texting, posting, adding Riley to prayer groups, sending sweet notes and gifts etc.

So either leave a comment or send me a message through here with the size you'd like and address you'd like it sent to. Leave your email address and we'll update you when they are ready and where to paypal the money, if you live outside of CA, for shipping. We'll find someone to mail the shirts out for us sometime late next week.

Hope you enjoy the design/moto as much as we do! We're Team Riley and she'll continue to Fight On!

Love,
Dave, Megan, Logan, Mason and Courageous Riley
Email address is:
meganmchopper@gmail.com

One step forward and two steps back.....

Sorry for the lack of update last night. I was exhausted. Dave left around 545 and I came back up to the room and fell asleep in the chair next to Riley while we were watching Baby Einstein. At some point my foot fell off the wall it was resting on and I ended up taking a nap on the bed until about 930. After that I just went to bed!

As of this morning we have a minor setback. Riley has RSV. It makes sense now why when she came off the vent she had so many secreations and had to have her boogies and saliva sucked so often. Around 10 last night she had a temperature of 102 and was given Tylenol. The doctors decided to do a blood/urine sample and sure enough when I got up at 530 this morning our nurse was gowned/masked and I knew something had come back. Good news is she is already on the high flow oxygen and was already receiving breathing treatments. She's much better this morning and her flow on her oxygen has been lowered twice. All steps to get her off of the oxygen completely. We're asking that we don't have any visitors except immediate family at this time. I had to tell Dave that we really shouldn't bring Logan today and it broke my heart. That little boy misses his sister and I know was looking forward to seeing her but, he won't wear a mask no matter how many times I've tried to get him to and we just can't risk Riley's health and recovery at this point or Logan and Mason's!

Yesterday was Day 11. Right after the attending from yesterday did rounds and commented that he'd like Riley "more awake" she showed him and was awake for 2 to 3 hour stretches with her eyes open looking at us. She yawned a bunch yesterday and at one point when I was sitting talking to Riley with my SIL Becky she yawned and made a sound. She proceeded to do it again about 20 minutes later and it was the best sound I had heard all day.

Riley's left eye had been super lazy/tracking to the left. Consistent with her type of brain injury. Yesterday, it made tons of progress pulling more to the center and her pupil began to focus more. Even the nuero noticed this and many other differences and Riley again took some baby steps on her way to recovery. We were told we might be moved to a regular floor, a step closer to going home! My biggest concern is the lack of private rooms and not as much one on one care from the nurses. Only time will tell when we move to that floor but, I've told anyone and everyone that if a private room is available we'd really like it. I'm sure Dave's snoring would be motivation enough for them to put us in a private room :)

We really have to continually remind ourselves to stay positive for Riley. Sometimes, it is hard. There is only so much we can do from a mom/dad standpoint and not being able to make my baby all better is killing me inside. We know there wasn't anything we could have done to prevent this but, it is so hard to feel like our job to protect Riley and our boys from an y harm has failed a little. When we get to feeling this way we usually take a walk and snap out of it as Dave says. We don't need Riley feeling any of our negative energy and only want her to pull from our strength and positivity.

We had many visitors yesterday. Rochelle and Chris. Joanna and Mark. Grammie and Pa Doug. Grandma and Grandad. Uncle Scott and Aunt Becky. Angela and Mrs T :). Mike Frasco and his wife Kristen (who brought Riley the softest blanket I've ever felt),Jen Jen and Casey (who also watched the boys for a few hours and brought me chips and salsa from one of my favorite restaurants, Logan's wondering why Casey has to work today as he played any game Logan wanted). Every single visit is so special and so needed. One of the sweetest and most emotional visits today was from Hannah (Mason & Riley's part time nanny) and her mom Shannon.

A few months ago, by happen chance, I was in the cafeteria at Methodist in Arcadia, meeting with a client. Logan was with me as I believe he had a doctor appt that day. We ran in to Shannon and Hannah having lunch. At the time we were looking for a new part time nanny as our old one was leaving to go to college in Utah. We continued talking and Hannah's class sschedule coinceded perfectly with the schedule we needed. She stopped by to visit Mason and Riley and I think I asked her to start then and there. It's been a blessing to have such a caring, attentive caregiver for our babies
and little Miss Riley has Hannah wrapped around her finger! What amazed us was Riley's reaction to Hannah's voice. She definitely knew who she was and opened her eyes for her. I'm surprised we didn't all burst in to tears when it happened.

So with RSV, we may stay here on the PICU floor longer than anticipated. PT/OT will start today and we continue to stay by Riley's side, talking to her, touching her, participating in more of her care and telling her how strong and courageous she is.

Dave's been working on a surprise that should come to life today and we can't wait to share what it is.

Continued thank yous to all of you for all of your love and support. I'm short on time this AM but, we have some beautiful gifts that have been sent to Miss Riley to share tonight.

Love, Dave, Megan, Logan, Mason and Courageous Riley

Day 10- Baby steps

First of all thank you for all of your positive comments about Dave's post yesterday. I've re read it going on 20 times and still get teary eyed. I am blessed with an amazing husband and my children hit the jackpot with Dave as their daddy!

Today, was another day with progress. While I was talking with one of the nuero doctors today he spoke about being cautiously optimisitc. This has always been one of my favorite sayings. He couldn't be more right, as this is how we feel as well. We don't want to lie to ourselves and think that one day Riley is going to be fully awake and ready to jump out of bed but, we truly do believe that our little fighter will be able to make many strides over time that will blow us all away.

Overnight, they turned the vent back on to allow Riley to rest. Good news was she had been breathing on her own the majority of the day yesterday so we knew she was almost ready to be taken off.

At 5:30 this morning after finally dozing off again I was woken up by the xray tech asking me to leave the room so they could do Riley's chest xray. As I looked over, saw the machine all ready to go, I almost punched the lady. More then a 2 second notice to vacate the room, especially in my sleepy state would have been nice!

Talk began early about removing Riley from the vent. I made it very clear I did not want it done without Dave present. I was worried about the aftermath and also knew Dave would want to be there as well. They respected our wishes and waited.

We listened in on morning rounds and Dr. Dre, the resident caring for Riley, rattled off everything about her without even a glance at her notes. I joked about her dreaming about her patients and she said well Riley is my patient. She has been an extremely caring doctor who is so good at what she does and I feel the connection she has with our daughter. The nurses cheer when she does something new as do most of the doctors on the floor.

Riley's levels that were of concern are becoming more stable. Her WBC numbers are getting back in to the range they should be and from a medical standpoint her body is doing what it needs to be doing.

Before they removed the vent the doctor who made the final call let us know that he was only doing it because he believed her to be ready but, he couldn't guarantee that she wouldn't have a set back and need to go back on. We were fine with that and waited patiently for them to do the procedure.

Tube came out with no issues and other then secretions and boogers Riley has been doing great! She is being given a medicine to help with her inflamed airways and is also on Albuterol breathing treatments every 4 hours.

Riley's eyes were wide open for about an hour after they removed the tube. Her left eye is still tracking to the left but, when I last spoke to Dave tonight he noticed some improvement over this morning.

We also had some wonderful visitors today. Mark and Shelly Hoherd came by with yummy cookies and an adorable piggy for Riley. I can't put in to words how special it was to have them visit us. Not only as family friends who have basically watched me grow up but, also as parents themselves. We both view them as strong people who have endured too much themselves and yet, took the time to be with us and visit Miss Riley. Thank you both of you.

Debbie stopped by again today and as always it is comforting to see her in the room.

Dave's mom Marie and step dad Jim were with us for the extubation period and Jim, having had a vent himself, I am sure knew what a relief it was for Riley to finally get that sucker out.

My bff Erica and her parents Jeanne and Bill paid us a visit as well and I was able to see Gavin and Donovan (Dave's little buddy) as we all walked up to the 6th floor together. We were honored to have Jeanne and Bill pray over Miss Riley. I have always admired their faith as far back as to when I first met Erica. I've struggled recently with my own faith and their presence and prayers helped to restore the peace within me that I needed.

My other bff Leane and her mom stopped by around the same time as well. They were able to be in the room when WE GOT TO HOLD RILEY for the first time in 9 days. The picture of the 3 of us is courtesy of Leane. What an amazing moment. Riley's breathing seemed to calm in my arms and I can't explain what it felt like to hold her close and share a moment with my beautiful little girl. We will be able to hold her more and more now and I know it will be good for all of us. My dad walked in while I was holding her and I think my tears and the fact that Riley was in my arms nearly gave him a heart attack.

As Leane and her mom were leaving our dear friends Anthony and Nuryel arrived. 2 years ago we spent new years with them and our friends Uncle Mike and Tia T and we all joked about what if we all were pregnant at the same time. Well their son Xavier was born in Nov of 2011 and Mia, Mason and Riley in Feb 2012. They guys still think it was a conspiracy.

So, what you've all been waiting for...... here are a few pics from our special day.

Riley still needs many prayers and good thoughts. The extent of her neurological damage is still really unknown and even when the next MRI shows us the "knowns" she will need all the support she can get to help her heal. We are waiting for PT/OT/and EI to start and it will be soon. Riley has her young age and young brain cells at her advantage. How she develops and grows is beyond our immediate control but, we know one thing for certain, having our baby girl present in our lives is enough. Everything else, will be icing on the cake. Riley is a fighter with an army behind her that will provide her with the best care to make sure she has the best opportunity to achieve the most in her life.

Thanks again for your continued support. May you all see the little miracles happening around you everyday as we watch our own little miracle make baby steps on the way to her recovery.

Love,
Dave, Megan, Logan, Mason and Courageous Riley

Day 9: Riley update and Daddys thoughts.

Today was much the same as yesterday. We were hopeful that Riley would come off the vent but, she's just not ready. Logan was able to visit today and go on a lunch date with mommy and daddy while the grandparents watched over Riley. Riley was able to breathe on her own which is fantastic news! She's moving more, annoyed with the vent and started to move her tongue around like she's done before all this happened feeling her new tooth. All in all she's progressing. I'm here at the hospital and looking forward to my night with Miss Riley. It's generally quieter at night and I like being able to talk to her, rub her feet and collect my thoughts.

And I couldn't leave Mason out! Leaving this face tonight was HARD! He's hanging out with Grandma Marie and loving every moment though!

Dave, daddy, wrote today's post. I don't believe he's given himself enough credit for the pillar of strength he's been for me and our extended family. I hope you enjoy his words.....


Day 9
First thing is without my beautiful amazing wife I would be an utter mess in life right now. She is the conductor of an orchestra of Dr’s, Nurses, children, family, taxi schedule and my support and as always, my filter!


Riley opened her eyes tonight, for about 5 minutes straight. I couldn’t have been more excited…but it was 130 am and I was alone. I tried to call Megan but no answer, probably best, she would have completely freaked out until I could tell her what happened. We are just keeping it as a daddy daughter moment.

She moves her legs, wiggles her feet and toes and it appears her movements creep up her body a little more everyday. I dream of the day she can put her arms around my neck for a giant hug. She yawned last night, gagged and actually cried(the cry face and tears as the ventilator doesn’t allow for sound) last night after the Respiratory Therapist finished her treatment. All a list of “firsts” that I took for granted the first time around.


She continues to open her eyes, they are trying to wake her now. They are lowering her dose of the phenobarbital to once a day which will allow her more unmedicated hours to wake up. She appears to be trying very hard to wake up herself, so much so that they have put baby arm restraints on her to prevent her from removing her breathing tube when no one is looking. Her lung has inflated, and she is coughing and gagging on the tube(all good signs). They were planning on removing her breathing tube so they shut down the respirator for about 4 hours. She breathes just fine on her own but the attending physician would like to see her a little more awake before removing it. We will have to wait and see tomorrow, we will just consider this a test drive and some exercise for her lungs. The majority of her swelling is down and she looks like her normal cute self. So as we have been hoping for, more daily improvement, I am happy.


We have been here for 9 days, the majority of my time has been awake, holding Riley’s hand, tickling her feet, brushing her hair, praying and what I thought was a sure fire way to wake her from a coma…singing. The child life people brought a music player, so I play her lots of music. The problem with the first music player was one of the songs, and I do not know the name, is the song you hear at every wedding before the bride walks down the aisle. Every time that song came on so did my tears. So we now have a CD player with some nice piano music that keeps her calm. When I do sleep, the nurses make fun of me because of my “snoring” issue. I am told that I do not need a sleep study, all of the medical professional’s on the 6th floor agree, I need a CPAP machine.

We have fun with the nurses, some have nick names. One nurse is affectionately known as “slacker” after she got held up in another room and failed to show up and help out with Riley. I explained to her that there is a price to pay if you miss something in the Riley Hopper room. These people really do gods work and deserve to be treated with the utmost respect. They really like sugar, so the cookies Angela brought have been enjoyed. We brought some coffee crumble cake bites and even some Cinnabon and everything is really appreciated along with the smiles, thank you’s and jokes that we share with them, although not all of them have the greatest sense of humor but we still try.


I have walked every foot of this hospital during MRI’s, CT scans, X-rays or waiting for Megan to return from taking care of the boys too scared to return to the room because I didn’t want to get bad news by myself. On my walks at all hours of the night, I run into other dads that are going through something similar, same dazed look, same cold coffee that you forget to drink and obviously not caring about how we are dressed. We don’t exchange stories just a simple “good luck and god bless”. Depending on which floor they get on the elevator you kind of get an idea of what is wrong with their child. We all share the same pain, a father not able to protect their child from everything. We all know we can’t but that feeling is still there.

I am a changed man. I believe in the power of prayer, I believe that miracles happen and I believe that more than one has happened here.

On the first or second night, a Dr. told me that my Daughters brain was sludge and “if” she survived her chances at any semblance of a life were next to impossible. I had to call Megan and tell her this. The worst thing I have ever done in my life. The next day, a new team of doctors from Hematology came in and explained that what I was told the night before was not correct and that she had swelling and not “sludge” and there was hope. If that’s not a miracle I don’t know what one is then.

I have always told Megan that there are things that affect our lives and then there are things that are background noise. This experience has opened my eyes to the fact that some things that I considered background noise should be affecting my life more. I am truly humbled by the love, support, prayers and well wishes from so many for my little girl. As I said, I am a changed man.

Thank you all for everything

Love,
Dave, Megan, Logan, Mason and Super Riley

Day 8... We wait and adjust to our new life

Riley had another pretty uneventful day in the sense that her vitals are all doing well and other then the issues with her lungs starting to need extra care she's doing pretty well. She has had to have albuterol to help loosen the junk in her lungs and constant visits from the respiratory therapists to make sure they keep her lungs from collapsing.
Good news on that front is that she is breathing over the respirator at a fairly steady rate so she may be able to come off of the vent in the next few days. The doctors want her to be more "awake" though and the phenobarbital she is getting makes it difficult for her little body to get to that state.

I mentioned the infectious disease doctor yesterday and we had a nice long visit with him today. They finally got the exact strain of meningitis back that Riley has, 15B. This basically means that what she has was not what she was vaccinated for. She also has encephalitis and sepsis. Poor girl has been hit with the trifecta of shitty illnesses.

From an infectious disease standpoint, they now need to figure out why her body was so vulnerable to 15B. When you are pregnant your baby receives your antibodies (mom's) in order to fend off these types of illnesses once they get outside the womb. It was explained to us that around the 8/9 month mark the antibodies I've passed on to Riley begin to diminish and her body then begins to produce it's own set.
The theory running around currently is that once my antibodies started diminishing Riley's body was not picking up the slack to make her own. Or she was in the wrong place at the wrong time and was exposed to 15B right at the point that her body was starting to make it's own and thus more vulnerable.

Last night, Dr. Arrieta (ID) gave Riley an infusion of hemoglobin to help sustain her for the immediate future. The hemoglobin that he gave her will slowly diminish decrease by 1/2 in 4 weeks and another 1/2 in another 4 weeks after that. Basically, he's protecting her and then will reevaluate in 4 weeks time to see how her own body is doing producing new antibodies as it was supposed to be doing. If her body doesn't start doing this we deal with another immune issue and at that point decide how to treat.

From a neurology standpoint Riley is still making slow progress. Moving her extremities more and more each day. It's so hard to know what her neurological outcome will be and also to know what we/they are dealing with because she is still on the phenobarbital and her brain still has swelling that is slowly coming down.

Until, those two things have occurred I feel the nuero team is waiting as much as we are. What we, as parents know for sure is that we see the baby step progress we were promised starting to happen.

Medically, I believe everyone is happy with her progress. We still need to draw patience from somewhere because time is going to be Riley's bff and best healer in the weeks to come.

I met with the social worker today. It was one of the few times I'd been alone and she took the time to come and chat with me. She was SO sweet! We talked a ton about how I was feeling/dealing and I always went back to how are we here and wow I just can't believe the support we have. We also touched on those we'd encounter at the hospital. Late last night I was near the vending machines and a dad struck up a conversation with me. Anyone that knows me personally knows I like to talk and perhaps I looked like I was in the mood and so we chatted. There are children with terminal diagnoses all around us. Most days I don't engage the other parents as I have no idea what their child is at CHOC for and it seems to be an unspoken parent rule that you don't ask. Anyway, he unloaded on me and I just didn't know what to do. I was kind and listened and tried to make my get away as fast as I could. Now, please don't think I didn't care. Any other day, when my child wasn't sitting on the 6th floor fighting for her life I would have bought his dinner and possibly a beer or two. Last night I didn't have the emotional energy to help him. The social worker helped me with that and when she left the room it was as if I had an on call therapist who made hospital room calls.

My amazing mom took Mason and Logan to doctors appts today. We needed the reassurance that our boys were ok health wise. They are and Mason gained 2 pounds in 4 weeks. I guess we all gain weight over the holidays. My dad and brother took my car for an oil change, new tires, car wash etc. My MIL Marie took great care of Mason and visited with us at the hospital. We have an AMAZING family. I think our families will be requesting a spreadsheet for the schedules I'm coming up with because once I make them I tend to forget who goes where and when.

We had visits from David/Cynthia (I've worked with them at Aflac for going on 9 years), Robin (my second cousin twice removed... kidding but, we're cousin I just can't give you the long story how we are), Robin's sweet brother Alex and Logan's preschool teacher Miss Erica. Yes, you read that right, Logan's preschool teacher who worked all day with the delightful 3,4 and 5 year olds and still had it in her to visit our sweet Riley. We're lucky to part of the Sonrise family and I am still in awe that she took the time to drive in the crappy LA traffic to visit.

I'm home tonight. My brother departs back to CT tomorrow which makes me sad but, his family will be back out here in March and I can't wait to take another cousin picture with Molly and my kiddos.
Dave's step dad will arrive tomorrow after winterizing their home in MT.
We will wake up to day 9 of this nightmare and float through the day like we do everyday.

Some funnies from the last few days that may make you all chuckle started with me running out of gas on the way home to see my boys and grab overnight clothes yesterday. As I tried to coast to the side of the freeway all I could think was really this is my life??? I also took Dave's directions to a Target on my way home and instead ended up at a Nordstrom Rack to buy us some more "comfy" hospital clothes. I'm a Target freak and laughed that he thought he knew where one was that I'd never been to before. I never found it as I really only had 20 minutes to run in/run out. Instead I found the one store I could shop in for hours and Dave was laughing about it as well!
I'm home ready to snuggle with Logan and worried about my lack of watermarks on my pictures. As a result I don't have any pictures to share tonight.
Tomorrow, Dave will be posting. He wants to and I can't wait to see what he has to say.

Thank you for all of your love. Thank you for loving our baby girl. We've already promised her the biggest 1st birthday party with her brother if she can get home to us and if not we will celebrate their birthday as soon as we can. And, you're all invited! We just want this behind us and our smiling baby princess pretty pants back n her crib.

Hug your babies tonight. No matter how old they are. Life is short and we are given small opportunities to recognize that and then take advantage of each day/hour/minute/moment we have here to make a difference.

Love,
Dave, Megan, Logan, Mason and courageous Riley!

Riley Update 1/3/13

Riley is doing ok. She's responding more and more to stimulation and opens her eyes ever so slightly here and there. Her seizure medication dose has been lowered so she is "waking up" and becoming more agitated at the ventilator and has started bucking it. A new term I've leraned.

I've tried to take notes during rounds and after every doctor visits the room but, sometimes it's so much information I just can't keep up. You'll have to bear with me if you're in the medical field or know about what I'm referring to because I may not get all the terms, exact wording right the first time!

During rounds there is talk about her vitals, sodium levels, lab cultures, blood work etc. We have visits from doctors all day long.

Many theories are being thrown around as to why/how this happened and there are many specialists looking at her case daily. The infectious disease doctor has brought a disorder to the table that has piqued my interest. I have this weird feeling he's on to something. Once we have labs back tomorrow I'll share his thoughts. He is also still trying to get test results back from the Los Angeles County Health Department as that is where Pomona Valley sent her samples. He's getting annoyed at the time it's taking and half joked about sending us to pick it up so they could work on it here. Dave was ready to leave right then and there to get it. The lack of urgency from the LACHD is frustrating especiallly when they called to ask me some questions today. I told them to call back. I wanted to tell them to figure out what the hell my daughter has before, someone not providing her actual care, asks me about her health history, family life, immunizations etc. I wanted to tell them to shove it but, instead they are supposed to call back tomorrow. Don't think I'll answer that call :)

Riley's care here at CHOC is amazing. We've had some nurses that I want to keep by her side forever! Our day nurse the last two days has been such a blessing. She has the touch to wake Riley up, encourages us to do certain things with Riley and shares reports openly with us as they come in. She also thoroughly explains what is being done and why and answers ANY questions we have.

Dr. Anas (the head of the PICU) authorized a big girl bed for Riley today. He mentioned the fact that we could hold her once she was off the vent and I bawled. We don't know when that will be. He then paused and said let's bring in a bed so you can get closer to her, lay down with her and touch her more easily. 30 minutes later she was in a bigger bed.

Riley's HR seems to do much better when she is laying on her stomach. Daddy and Uncle Scott had a contest today to see who could get her HR the lowest with gentle back massage along her spine. I wasn't here but, I think Daddy was the winner.

Riley has had some issues with her lungs due to lack of movement and as a result has her very own vibrator. It became the joke today amongst everyone in the room including Riley's nurse and I think we all needed a good laugh.

For now we've heard two teams talk about when we take our baby home. That was HUGE! This is the first time ANYONE has talked that far in the future.

Riley's pupil responses have improved, she's wiggling around and peaking out of those beautiful eyes at us even with a slight glare after her nurse suctioned her boogies. Riley did not like it and then promptly pooped on her.

They're still working on her sodium levels but, with some medication changes tonight we hope those will be better in the morning.

For now, I'm going to go. It's been a long day and I know it will be a restless night as every beep in this room makes me want to jump.

Thanks for your continued prayers. Riley needs them and is fighting as hard as she can.

Love,
Dave, Megan, Logan, Mason and courageous Riley.

One Week

It has now been one week since Miss Riley got sick. One week of pure hell. I still have trouble remembering what day it is.

For those of you who don't know how we got here I'll give you a little back story.

Bad cell phone picture but, this was Riley Christmas Day!

Christmas Day Riley was the life of our family get together. Laughing, clapping, smiling, goofing around with her Grandmas/Grandpas, Aunt, Uncle and Brothers. After putting Riley to bed we heard her wake up around 8/830. Mason, was still awake fighting sleep after a late nap so I ended up getting Riley up and laying with her in Logan's bed because she was fussy and felt warm. I gave her a dose of Tylenol and more of her bottle and we both fell asleep.

Around 1/130, she woke up and was burning up. I attempted to give her another dose of Tylenol and made half a bottle. At that time she threw up the medicine/bottle and was pretty fussy. We both tried to calm her down and at some point Dave took her out to the family room to rock her and they both fell asleep.

Around 515/530 I woke up and heard Riley fussing and Dave was having a difficult time getting her back to sleep. I ended up going to tell Dave we should try to give her more medicine. When Dave handed Riley to me she was hot. After having a child who has already had 2 febrile seizures, I told Dave to hurry and get her the medicine. Not 2 seconds later I looked down and noticed she was starting to seize. Feeling panicked Dave ran to run a bath. I was stripping down to get in the bath with her when we realized we just needed to call 911. We also learned you should NOT put a febrile baby in a bath!

Dave held her while I called 911 and he timed her seizure because he remembered from Logan's that they'd be asking us how long it lasted etc.

The paramedics arrived looked her over and believed it to be typical febrile seizure symptoms. As I gathered a diaper bag Dave got ready to head to the hospital with her. Around the time that they were loading in the ambulance Logan woke up. It was a cold and rainy morning but, I carried him outside to see them pull away and Logan was given some stickers from the nice fireman.

I called my mom to come stay with Mason and Logan and she headed over ASAP.

Once I arrived at the hospital, Riley was tired and wanted to be held by either myself or Dave. They tested her for a UTI, did a chest xray and diagnosed her with a "virus". We were discharged and headed home mid morning.

We got home and Riley was extremely sleepy. Didn't seem unusual to us as she had just had what we thought was a febrile seizure.

Around 230 I called the pediatricians office because she just didn't seem right and was encouraged by the nurse to keep doing what we were doing (holding her, feeding her pedialyte and water via syringe). I also made an appointment for Riley to be seen in the office the next day.

We continued what we were told to do and again at night I laid in Logan's bed with her and continuously tried to get her to take fluids. Around 2am I just got this sinking feeling that something was really wrong. Again, I called the nurses line and they agreed we needed to go back to the ER. Dave got dressed I packed them up again and off they went. At the time I honestly thought that maybe she was dehydrated and they'd give her some fluids and she'd be back home. I was so wrong.

Again, I called my mom and she headed back over to our house. I headed to the ER and the doctor on duty had her seen immediately. Antibiotics were ordered, a chest xray and a spinal tap. Once I heard spinal tap I just knew meningitis.

After being told we were being admitted I asked about CHOC. After consulting with the on call pediatrician they agreed and transportation started to be arranged. The thing that bothered us most was the lack of urgency at this point.

I will leave it all at that for now as I think that gives you the back story and the rest of the ER story can wait for another time. It was horrible.....

So, here we are today. Fighting for our baby and trying to still wrap our heads around just how this happened and how we got here to CHOC.

We drive up and down the 57 each day, trade off night duty, juggle childcare and household stuff and pray this nightmare will end. Thankfully, we have an amazing support system. A family that will do anything for Miss Riley and for us and amazing friends. On a larger scale we have all of you.

In the mornings when I come to the hospital I drive over a bridge off the fwy. It feels like the bridge between our two worlds right now. Home and the hospital.

Love,
Dave, Megan, Logan, Mason and courageous Riley