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!
Thursday, January 3, 2013
Wednesday, January 2, 2013
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.
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
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
Tuesday, January 1, 2013
Today I woke up and snuggled with Logan who slept in daddy's spot next to me last night. It was a crisp, cool morning here in CA and I felt refreshed. Mason had been up playing with Grandma and I spent some much needed time with him as well. Logan had been asking to go back to the hospital and visit Riley so we both got ready to hit the road.
First, we stopped at the donut shop down the street. We live in a community that has a small shopping center with a grocery store, cleaners, donut shop, pharmacy etc. Everyone knows you when you walk in to any of these places and Logan particulary loves the lady Sue that owns the donut shop. While we waited for Sue to get Logan's donuts and my Diet Coke I looked at the picture on the wall that I have glanced at time and time again but, never took the time to read. It's of a teenage girl who beat some sickness, I'm not sure which one, and at the top reads "Miracles Happen Everyday". For some reasons it just shook me and I took 2 or 3 glances at it while Logan tried to decide between apple juice and chocolate milk. We're still in the middle of paying it forward and Logan had asked me if we could pay for some other peoples donuts today. We told Sue about it after briefing her on Riley and we're excited to hear her stories the next time we grab donuts!
We were finally on the road and Logan was talking my ear off. He was telling me about what all his friends had asked for for Christmas and how he can't wait to see them tomorrow at school. It was nice to share some one on one time with my little buddy. Then we got a text from Dave asking if we were at the hospital yet. Instead of texting, as we were driving, I called him. Dave's exact words were I have a New Year's surprise for you. I held my breath and he said Riley opened her eyes. Such a relief! Not only that but, she is tracking more in one eye but, she's still tracking and opening her eyes!
We got to the hospital and Dave greeted us at the 6th floor elevators with a big hug. We then went to see our pretty princess or sissy to Logan.
Logan was very happy to see Riley and we huddled around her bed touching her and talking to her. It was at some point during this that her right thumb began twitching rhythmically. My mom had arrived right after us so I asked her to take Logan to the playroom while Dave grabbed the Resident. They decided to give Riley Ativan as she was having a seizure. It was the same side as the other day but not as involved as it was only her thumb not her whole hand, arm and mouth. She relaxed and seemed to rest after.
We had Logan come back later after things had settled down and Riley opened her eyes for him! Such a great moment and I wish I had it on film. He loves her HR monitor on her toe and the glow it outputs. He also looked at the monitor and commented how the O2 level was 100 the other day. That kid remembers everything!
We had two care packages this morning from Erica and the Drudge/Eilers/Thomas family. The pictures that Tanner, Cayden and Myka drew are just precious and adorn the growing wall of cards and pictures decorating Riley's room. THANK YOU again guys. The nurses are starting to really like the daily cookies we've been able to stock in their breakroom.
A little before noon we had a visit from Joanna and Mark who also brought us a wonderful care package to stock up our room. Thankfully, they were here and available to leave to pick up my brother Brad from the airport as my dads car overheated somewhere between Arcadia and LAX.
Seeing my baby brother walk through the door was both comforting and hard at the same time. We are both parents and we both NEVER would have expected to have to be standing at one of our children's bedsides together EVER! Brad has such a calming presence and him coming out from CT for a few days was really needed. Molly, Brad's daughter asked him to give Riley huggies. They also brought Riley the softest pink bunny I have ever felt.
We spoke with a few doctors today. The neurology team talked to us about the unknowns and what ifs. We know that Riley may have some learning disabilities and may also have cerebral palsy and also may be on seizure meds for the rest of her life. Again, these are all speculative but, we're trying to be honest with ourselves and appreciate the honesty of our doctors so that we can prepare to care for Riley. We just want our baby girl home with us. I was very nervous they were going to tell us something worse. It's still a waiting game. Possible brain damage, possibly not. Pretty much we just wait.
We also had a visit from Tia T and Uncle Mike. As we left CHOC to grab lunch Dr. Nugent was walking out as well. She's on the hematology team. She was reassuring and comforting and really made me feel at ease about everything. She talked about telling her Residents to be honest with parents and she was happy the neurology team was being honest with us. She had also let us know earlier that Riley's white blood cell count was up and they took her off the heparin and on to the shot for blood thinning (name escapes me now).
When we got back I was in the room with my brother and dad when the new Attending came around with a brand new Fellow. The Attending was wonderful. He spoke to us about the plasticity of the young brain and how that was something that regardless of what happens over the next few weeks Riley has on her side. He also said he's seen this situation go both ways. He was surprised she's opening her eyes as she's on a pretty heavy seizure medication.
So like the other days, today was filled with ups and downs. We see today as more of an up day though. Riley is continuing to open her eyes at us every few hours, respond with purpose to stimuli and all her organs continue to remain strong.
I shared a badge on facebook made by my MEMOS. They all know who they are and they have been such a wonderful support to me the last few days. Feel free to use this badge or share it. Whenever, I look at it I am reminded of each of them and also the fight that Riley has in her! Thanks again guys! xoxoxoxoxo
And to my Maliboozers you all rock!
I hope I haven't forgotten anyone! I am trying so hard to write things down, thank the right people and keep everything straight. So, if I haven't personally mentioned you by name please accept my apologies!
I hope you all had a great New Year's! We had the best day with our baby and watching her react to us and open those eyes! I anticipate tomorrow to be busy as we are coming off a holiday weekend and things have been semi quiet around here. For now please continue to pray. Riley has a very long road ahead of her.
First, we stopped at the donut shop down the street. We live in a community that has a small shopping center with a grocery store, cleaners, donut shop, pharmacy etc. Everyone knows you when you walk in to any of these places and Logan particulary loves the lady Sue that owns the donut shop. While we waited for Sue to get Logan's donuts and my Diet Coke I looked at the picture on the wall that I have glanced at time and time again but, never took the time to read. It's of a teenage girl who beat some sickness, I'm not sure which one, and at the top reads "Miracles Happen Everyday". For some reasons it just shook me and I took 2 or 3 glances at it while Logan tried to decide between apple juice and chocolate milk. We're still in the middle of paying it forward and Logan had asked me if we could pay for some other peoples donuts today. We told Sue about it after briefing her on Riley and we're excited to hear her stories the next time we grab donuts!
We were finally on the road and Logan was talking my ear off. He was telling me about what all his friends had asked for for Christmas and how he can't wait to see them tomorrow at school. It was nice to share some one on one time with my little buddy. Then we got a text from Dave asking if we were at the hospital yet. Instead of texting, as we were driving, I called him. Dave's exact words were I have a New Year's surprise for you. I held my breath and he said Riley opened her eyes. Such a relief! Not only that but, she is tracking more in one eye but, she's still tracking and opening her eyes!
We got to the hospital and Dave greeted us at the 6th floor elevators with a big hug. We then went to see our pretty princess or sissy to Logan.
Logan was very happy to see Riley and we huddled around her bed touching her and talking to her. It was at some point during this that her right thumb began twitching rhythmically. My mom had arrived right after us so I asked her to take Logan to the playroom while Dave grabbed the Resident. They decided to give Riley Ativan as she was having a seizure. It was the same side as the other day but not as involved as it was only her thumb not her whole hand, arm and mouth. She relaxed and seemed to rest after.
We had Logan come back later after things had settled down and Riley opened her eyes for him! Such a great moment and I wish I had it on film. He loves her HR monitor on her toe and the glow it outputs. He also looked at the monitor and commented how the O2 level was 100 the other day. That kid remembers everything!
We had two care packages this morning from Erica and the Drudge/Eilers/Thomas family. The pictures that Tanner, Cayden and Myka drew are just precious and adorn the growing wall of cards and pictures decorating Riley's room. THANK YOU again guys. The nurses are starting to really like the daily cookies we've been able to stock in their breakroom.
A little before noon we had a visit from Joanna and Mark who also brought us a wonderful care package to stock up our room. Thankfully, they were here and available to leave to pick up my brother Brad from the airport as my dads car overheated somewhere between Arcadia and LAX.
Seeing my baby brother walk through the door was both comforting and hard at the same time. We are both parents and we both NEVER would have expected to have to be standing at one of our children's bedsides together EVER! Brad has such a calming presence and him coming out from CT for a few days was really needed. Molly, Brad's daughter asked him to give Riley huggies. They also brought Riley the softest pink bunny I have ever felt.
We spoke with a few doctors today. The neurology team talked to us about the unknowns and what ifs. We know that Riley may have some learning disabilities and may also have cerebral palsy and also may be on seizure meds for the rest of her life. Again, these are all speculative but, we're trying to be honest with ourselves and appreciate the honesty of our doctors so that we can prepare to care for Riley. We just want our baby girl home with us. I was very nervous they were going to tell us something worse. It's still a waiting game. Possible brain damage, possibly not. Pretty much we just wait.
We also had a visit from Tia T and Uncle Mike. As we left CHOC to grab lunch Dr. Nugent was walking out as well. She's on the hematology team. She was reassuring and comforting and really made me feel at ease about everything. She talked about telling her Residents to be honest with parents and she was happy the neurology team was being honest with us. She had also let us know earlier that Riley's white blood cell count was up and they took her off the heparin and on to the shot for blood thinning (name escapes me now).
When we got back I was in the room with my brother and dad when the new Attending came around with a brand new Fellow. The Attending was wonderful. He spoke to us about the plasticity of the young brain and how that was something that regardless of what happens over the next few weeks Riley has on her side. He also said he's seen this situation go both ways. He was surprised she's opening her eyes as she's on a pretty heavy seizure medication.
So like the other days, today was filled with ups and downs. We see today as more of an up day though. Riley is continuing to open her eyes at us every few hours, respond with purpose to stimuli and all her organs continue to remain strong.
I shared a badge on facebook made by my MEMOS. They all know who they are and they have been such a wonderful support to me the last few days. Feel free to use this badge or share it. Whenever, I look at it I am reminded of each of them and also the fight that Riley has in her! Thanks again guys! xoxoxoxoxo
And to my Maliboozers you all rock!
I hope I haven't forgotten anyone! I am trying so hard to write things down, thank the right people and keep everything straight. So, if I haven't personally mentioned you by name please accept my apologies!
I hope you all had a great New Year's! We had the best day with our baby and watching her react to us and open those eyes! I anticipate tomorrow to be busy as we are coming off a holiday weekend and things have been semi quiet around here. For now please continue to pray. Riley has a very long road ahead of her.
Monday, December 31, 2012
Happy New Year and Thank You!
I'm home with my boys waiting for midnight which I don't think this mama will be able to make it to.
We want to thank all of you for your love and support. I just glanced at our blog hits and literally there are people all over the world reading about my sweet girl! Amazing and overwhelming.
I came home because even though I didn't want to, I know I needed to. Riley's brother Logan turned 4 in October. He is a sweet, sensitive boy who spent the last 3 days with his favorite cousin (sorry Cameron, Drew, Gage, KD, Peyton and Molly- I promise he adores you all too!) and he needed some reassurance.
I finally understood the difficulty Dave had with coming home. I think once you get in a fighting mindset behind one child it's hard to imagine stepping away even for a few hours.
Dave is with Riley tonight and this will be the first time we have not spent New Years together in 9 years. Hard to swallow but, easier to do when we both are fighting for our baby girl. Riley is daddys girl and convincing him to leave last night was hard but, he knew he needed rest too.
We are all so overwhlemed with you love and support and feel it in many ways.
We all as a family want to wish you a happy new year. Personally, our family has been through many struggles in 2012. We were looking forward to putting this year behind us for so many reasons. Now I can't wait to send 2012 out!
Riley is stable. Responding to touch, pooping, coughing and gagging. I hope we see her open those beautiful blues soon!
Now, I just want to wake up and see 2013 as a year of change and healing. We wish you all a better tomorrow filled with love, peace and happiness.
Love,
Dave, Megan, Logan, Mason and courageous Rilwy
We want to thank all of you for your love and support. I just glanced at our blog hits and literally there are people all over the world reading about my sweet girl! Amazing and overwhelming.
I came home because even though I didn't want to, I know I needed to. Riley's brother Logan turned 4 in October. He is a sweet, sensitive boy who spent the last 3 days with his favorite cousin (sorry Cameron, Drew, Gage, KD, Peyton and Molly- I promise he adores you all too!) and he needed some reassurance.
I finally understood the difficulty Dave had with coming home. I think once you get in a fighting mindset behind one child it's hard to imagine stepping away even for a few hours.
Dave is with Riley tonight and this will be the first time we have not spent New Years together in 9 years. Hard to swallow but, easier to do when we both are fighting for our baby girl. Riley is daddys girl and convincing him to leave last night was hard but, he knew he needed rest too.
We are all so overwhlemed with you love and support and feel it in many ways.
We all as a family want to wish you a happy new year. Personally, our family has been through many struggles in 2012. We were looking forward to putting this year behind us for so many reasons. Now I can't wait to send 2012 out!
Riley is stable. Responding to touch, pooping, coughing and gagging. I hope we see her open those beautiful blues soon!
Now, I just want to wake up and see 2013 as a year of change and healing. We wish you all a better tomorrow filled with love, peace and happiness.
Love,
Dave, Megan, Logan, Mason and courageous Rilwy
December 31st- Day 5
Yesterday started pretty uneventfully. Riley had a good night,no seizures. She has started getting formula through a feeding tube at the rate of 30 ml/hr which is equivalent to half of one of the ready feed bottles they give you when your baby is born and you're formula feeding.
I typically, go home at night to see Mason/Logan. When I got back to the hospital yesterday I brought some bows and girly socks. We're getting tired of people calling Riley he. They removed all of electrodes monitoring her brain as there hadn't been seizure activity. The best part of the morning was helping wash Riley's hair to remove all of the glue they used for the electrodes and brushing her hair. She now has a pink bow that adorns her beautiful head.
We're still waiting for swelling to subside but, good thing is there hasn't been an increase.
Dave left the room to grab some lunch yesterday and I spent some alone time with Riley. It was nice to talk to my daughter without any outside distractions and let her know how much I love her and want her to fight as much as she can. I just look at her beautiful pictures and know she has a full life ahead of her doing something purposeful here in her lifetime.
While I was with Riley I noticed her lips moving and then her right hand started a twitch. I called the nurse and of course she's off the eeg so while they won't call it a seizure all signs point to it being one.
Riley also had her first blood transfusion. She's B+. That went well and her body seemed to tolerate the new blood. The transfusion was done to work with the heparin as she's now been on it for 3 days and the hematology team believes the transfusion will help her levels. She's also only 10 months old and they've taken tons of her blood and the remaining is trying to fight the infection.
Due to being on the heparin she also has an u/s of her spleen. Late yesterday afternoon we were also told she'd be getting another CT. We didn't leave the room until 9pm and we were exhausted! Our fabulous nurse knew Dave was waiting for the results to go home and get some sleep so she pushed for the doctors to read the scan. Preliminarily, there were no changes, no bleeds, no clots. This is good news.
Overnight, Riley rested. I stayed here for the first time and tried to get some rest. Early this morning Riley's hr started jumping all over the place. Our nurse believes it to be a sign she's feeling more pain and she was given some medication. Riley has also had more saliva, boogers, movement and finally pooped!
All in all I'm tired of having to be patient but, I'm trying. Dave and I realize that she's resting but, she is also in a self induced coma. The longer she stays this way it's not good. We really need Riley to "wake up" and believe me we all miss her pretty blue eyes!
Riley is very very sick. Her infection is bad. It's now Riley's little bodies time to work on healing. Her long term prognosis is unknown. What we're doing now is staying faithful and putting everything we can in to getting our baby better. ***Rounds this AM show much the same as yesterday although, Riley has pooped twice, gagged/coughed and had reflexes to pinches by the head of the PICU (Dr. Anas- sidenote I LOVE him for many reasons) in her feet. She is ever so slightly sedated but, the majority of her coma is on her own. ****
So as 2012 ends we remain hopeful that 2013 will be her year as cliché as that sounds.
I'll leave with some pictures.
We had very special visitors today my bff Erica, Dave's mom Marie, Dave's brothers, Dave's Dad Rudy and step mom Beverly and my mom and dad. We also had visits from two family friends who have always felt more like aunt/uncles to me.
First, Debbie and Jerry who mean the world to our family. Debbie brought holy water from the River Jordan and blessed Riley. She also brought Riley a beanie baby monkey that was grandma Eggleston's favorite.
Then, I looked up and Ron and Chris were at the door. Again, family friends who mean the world to us. Chris brought Riley a picture of the patron saint of children and a healing cross.
These visits and gifts mean the world to us.
We also received a care package from the Drudge/Eilers/Thomas families that contained everything we needed for Riley's room from advil, water, granola bars, cookies and an adorable picture that the beautiful Eilers kids drew for Riley.
Again, we are humbled and overwhelmed by all of your love and support. Please pray that Riley's little body is ready to wake up and begin to heal. We need our baby. There is no other option.
Love and to a better 2013,
Dave, Megan, Logan, Mason and our little fighter Riley
Sunday, December 30, 2012
* I'll be adding pictures to my posts. I want you all to know that some of them are difficult to look at. **
We've decided to start using our family blog that we haven't used since I was pregnant with the twins to keep you all updated on our sweet Riley.
I don't have time this morning to give the full story of how we got here but, will try and put something together for those of you who aren't familiar with Riley's story.
Riley is currently having her morning CT scan done. She is stable and all of her vitals are doing well. Right now, everything is day to day and we are just waiting.
I can't begin to express the overwhelming feeling of gratitude we have to each and every single one of you that has been praying for our sweet baby girl. She needs all of the prayers she can get. Dave and I commented to each other this morning how we have people of every faith from every state and many countries around the world praying for Riley. That is powerful!
I've read through all of your fb messages, posts, texts. They are so helpful in times of stress. Dave will read them eventually but, for now it is too difficult.
My MIL just arrived here this morning from MT along with my BIL and nephews. My brother will be flying in on Tuesday from CT. My parents, FIL/SMIL, SIL/BIL and our dearest friends have been helping us physically an emotionally with everything. We have an amazing support system and Riley has a family who adores her and is doing everything they can to make sure she feels the love from her family.
The head of the PICU was on the floor yesterday and we asked him if Mason could come see Riley. Normally, children under 3 are not allowed on the floor. He made a joke about bending the rules and double checked with the Charge Nurse if it was ok. Late yesterday afternoon, Dave brought Mason by to see his sissy.
CHOC will be Riley's home for the next few weeks. The staff is wonderful and aside from the ass Nuerosurgeon who we call Dr. Doom, we've only encountered a team of the best pediatric doctors/nurses in each of their own respective specialties. Riley is getting the care she needs.
Riley hanging out with electrodes monitoring her brain for seizures.
The machine monitoring her is amazing. The tech has a camera watching Riley's every move. It records sound as well so we have to be careful what we say!
I'm not sure why this is all showing as a wall of words and I haven't yet watermarked my pictures but, I feel safe enough putting this all on the interwebs for now until I can get help with that.
Thanks again and welcome to the Hopper Household. Riley appreciates ALL of you!
Love,
Megan, Dave, Logan, Riley & Mason
We've decided to start using our family blog that we haven't used since I was pregnant with the twins to keep you all updated on our sweet Riley.
I don't have time this morning to give the full story of how we got here but, will try and put something together for those of you who aren't familiar with Riley's story.
Riley is currently having her morning CT scan done. She is stable and all of her vitals are doing well. Right now, everything is day to day and we are just waiting.
I can't begin to express the overwhelming feeling of gratitude we have to each and every single one of you that has been praying for our sweet baby girl. She needs all of the prayers she can get. Dave and I commented to each other this morning how we have people of every faith from every state and many countries around the world praying for Riley. That is powerful!
I've read through all of your fb messages, posts, texts. They are so helpful in times of stress. Dave will read them eventually but, for now it is too difficult.
My MIL just arrived here this morning from MT along with my BIL and nephews. My brother will be flying in on Tuesday from CT. My parents, FIL/SMIL, SIL/BIL and our dearest friends have been helping us physically an emotionally with everything. We have an amazing support system and Riley has a family who adores her and is doing everything they can to make sure she feels the love from her family.
The head of the PICU was on the floor yesterday and we asked him if Mason could come see Riley. Normally, children under 3 are not allowed on the floor. He made a joke about bending the rules and double checked with the Charge Nurse if it was ok. Late yesterday afternoon, Dave brought Mason by to see his sissy.
CHOC will be Riley's home for the next few weeks. The staff is wonderful and aside from the ass Nuerosurgeon who we call Dr. Doom, we've only encountered a team of the best pediatric doctors/nurses in each of their own respective specialties. Riley is getting the care she needs.
The machine monitoring her is amazing. The tech has a camera watching Riley's every move. It records sound as well so we have to be careful what we say!
I'm not sure why this is all showing as a wall of words and I haven't yet watermarked my pictures but, I feel safe enough putting this all on the interwebs for now until I can get help with that.
Thanks again and welcome to the Hopper Household. Riley appreciates ALL of you!
Love,
Megan, Dave, Logan, Riley & Mason
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