Thursday, January 31, 2013

Changes and big moves!

We made a big move Monday early evening to the step down PICU unit on the second floor! We still have a private room and the same nurses and doctors we've had the entire time we've been here. It happened very suddenly as we were notified late in the afternoon that we'd be moving and then we left the 6th floor around 6 pm. It was a very emotional move for me. Two of our favorite nurses were in the hallway as we left and just the goodbyes they gave Riley as we were leaving sent me in to tears. I think it is because we had been there for so long and room 621 had been our home away from home during the most critical time in Riley's life. We also had caregivers who were amazing. Nurses, respiratory therapists and others who really became the friendly faces we needed on a daily basis and who gave Riley outstanding/above and beyond care. We have a little surprise working for all of them so now we need to figure out how to pull it off.

Our new room is a little smaller, the unit is smaller and it is much quieter in general. It's also just been different and not the same warm feeling we had on the 6th floor.

Riley had a great day Monday. In the morning she was awake every 1-1 1/2 hours and she started moving her head and both eyes side to side depending on where we were. She was also less agitated and overall more alert. She scanned the room a ton which can only lead me to believe she was wondering where the heck we were! After her speech therapy she was alert and awake the majority of the afternoon.

We've now mastered suctioning Riley's trach and know what signs to look for that tell us it needs to be done. Grandpa Hopper even jumped in to practice on Saturday when he stayed with Riley for a few hours so we could have a date. We've started to administer her meds through her gtube and after her first trach change we'll practice doing that as well. We still need to take a CPR class specific to Riley and we're hoping to get our family members in to the class along with us so that everyone is comfortable helping with Riley.

Tuesday, Riley had her first trach change. Made me a tad squimish and I am going to let Dave do the first one today and I'll follow suit after. I helped change the velcro strap that holds the trach in place yesterday and really once you get the rhythm I don't think it will be too hard.

Riley couldn't start PT/OT again until the first trach change but, she was able to have speech/feeding therapy yesterday. Riley has the ability to swallow so they are working on getting her swallowing stronger as it is one of the first things to go after a TBI and one of the first to come back. The therapist told me that it is good she is swallowing as it is a brain stem function so it shows that she is following the road to rehab as she should as far as this aspect.
She used a muscle stimulation device on Riley's chin area while doing the therapy. It feels like a tingle and helps to work the muscles needed for swallowing. Riley got apple juice for the first time ever and a lemon lollipop during her therapy. Yesterday she tried to put a "passy" (I think that is the right term) over the trach to see how Riley did but, it appears she doesn't have a mature enough throat area for that attachment just yet. It could be due to her age or the swelling that still is in her throat area. The passy will allow Riley to use her voice which we can tell she is trying so hard to do. In fact during a coughing episode yesterday in the morning Dave could hear her voice trying to break through.

Monday was also our babies 11 month birthday! I can't believe in one month we will have two 1 year olds! It was a hard day for me as I left Mason in the morning and could only think about the party I had in mind for these two and the planning I should be doing. Our goal is to have Riley home by her 1st birthday so we can celebrate Mason & Riley together, as a family. Will this happen? Only time will tell.

We started feeling a bit out of sorts on the 2nd floor Tuesday. Even though we'd been told by one of the attending doctors that they were not kicking us out and to take our time making our decision about where to go next, we just both had a feeling from the nurses that they wanted us gone. So, Dave met with a rep from a facility called Healthbridge , located basically down the street, Tuesday afternoon in Riley's room. Thankfully, we were able to tour the facility yesterday and we'll be talking with the case manager this morning about moving Riley there. They have a bed available and the facility only has 25 beds total so it is smaller and offers everything we are looking for.

The facility is certified as a step down PICU facility and offers all the care that we get here in the hospital plus the bonus of PT/OT/ST that is more coordinated and scheduled. We honestly haven't felt much care has been given to Riley in this area, aside from ST the last couple of weeks. Granted they weren't allowed to work with her before the first trach change but, even after they have been scarce.

Last night, I returned from dinner to a situation with Riley that infuriated me to the point that I was ready to transfer in the middle of the night. It saddens me because up until the last couple of days all I could do was rave about the staff and care Riley had been getting. I actually left early for dinner last night because the day nurse made me feel pushed to making a decision about where we were going and even went as far as "telling" me if we didn't leave by Friday they'd move us again. It felt like a threat and I didn't want Riley to sense the tension so I left before she did. Really lady? Anyway, needless to say we are ready to move on!

One of Logan's biggest struggles has been that his family has been separated and he tells us it makes us all not a family when we are apart. We've tried to explain to him that we are a family no matter where we sleep or live and will always be one. I know how he feels though. We miss our lazy Sundays hanging out around the house together in our jammies and just being a family. The new facility fosters a family healing/rehab environment. Riley will be able to have visitors (YAY!) and we can actually bring both boys to see their sister and the 5 of us can spend the family time we all need together.

Once we pull the trigger, sometime this morning, the ball will be rolling to get Riley transferred. It's possible it could happen as early as this afternoon or possibly Friday. We've requested a hearing test for Riley before she transfers and they also have another set of labs to run.

After Riley arrives at her new residence she'll be assessed and we will be working with the team to form a game plan for Riley. She'll have a schedule, get to wear her clothes, take a bath at her normal bath time and she'll also be able to have set rehabilitation 6 days a week. It will start off slow and hopefully, with a couple days of adjustment Riley will feel more "at home" and we'll start the next chapter.

I feel bad for not updating but, things have happened rather quickly and the chaos the last few days has left little time to write.

Thanks again for everything! Once Riley is settled we'll let everyone know when she can have visitors again. We will be limiting visitors to immediate family at first as they have all been missing their Riley time and need, as much as Riley, some one on one time with one another before we overload Riley.

We feel this is the right decision for Riley and for our family. Going home was not something we felt was beneficial for Riley immediately and the place we've chosen will hopefully be the bridge we all need to ultimately get Riley home.

Dave, Megan, Logan, Mason and Courageous Riley!

Sunday, January 27, 2013

Some details...

How is Miss Riley? What are her days like? What can she do? What will she be able to do? Where will we go when we discharge from CHOC? Will we have help if we go home? What do you have to do to take care of Riley?

These are some of the questions we have had recently. I am going to do my best to articulate what Riley's situation is and perhaps answer some of these question more specifically.

Riley had her trach/gtube surgeries/procedures on Wednesday. Since then we've been working with the doctors/nurses to keep her comfortable and pain free. Just like any of us after a surgery we want to make sure we manage her pain/agitation. As of this morning she is only on Tylenol as needed and we've held off on giving her Ativan except for during the night so she can sleep better. After rounds this morning it was discussed to switch her to a muscle relaxer (less of a sedative) to see if that can help with her overall level of comfort.

How awake is Riley? When we say Riley opens her eyes and wakes up, it is not an awake state as you would normally imagine. Riley opens her eyes periodically throughout the day, some awake periods are more interactive and some are not as much. With each passing day, when she is awake, her state seems to us (and the nurses) to be more connected and more there. Hard to explain. For instance this afternoon she was awake for over an hour looking at us and letting us sit and talk to her and massage her arms and legs.

There is a scale used in adults to describe the time post TBI (Traumatic Brain Injury), we can use it loosely to relate it to Riley however, due to her age it is not an exact scale in relationship to her specific state etc. On the severity scale she rates on the high end of moderate. This level indicates that with therapy and rehab she can make a recovery to some extent. To what extent is the unknown.

Glasgow Coma Scale
There are a few different systems that medical practioners use to diagnose the symptoms of Traumatic Brain Injury. This section discusses the Glasgow Coma Scale. Click on the link to find out more information about the Ranchos Los Amigos Scale.

The Glasgow Coma Scale is based on a 15 point scale for estimating and categorizing the outcomes of brain injury on the basis of overall social capability or dependence on others.

The test measures the motor response, verbal response and eye opening response with these values:

I. Motor Response
6 – Obeys commands fully
5 – Localizes to noxious stimuli
4 – Withdraws from noxious stimuli
3 – Abnormal flexion, i.e. decorticate posturing
2 – Extensor response, i.e. decerebrate posturing
1 – No response

II. Verbal Response
5 – Alert and Oriented
4 – Confused, yet coherent, speech
3 – Inappropriate words and jumbled phrases consisting of words
2 – Incomprehensible sounds
1 – No sounds

III. Eye Opening
4 – Spontaneous eye opening
3 – Eyes open to speech
2 – Eyes open to pain
1 – No eye opening

The final score is determined by adding the values of I+II+III.

This number helps medical practioners categorize the four possible levels for survival, with a lower number indicating a more severe injury and a poorer prognosis:

Mild (13-15):

More in-depth discussion on the Mild TBI Symptoms page.
Moderate Disability (9-12):

Loss of consciousness greater than 30 minutes
Physical or cognitive impairments which may or may resolve
Benefit from Rehabilitation
Severe Disability (3-8):

Coma: unconscious state. No meaningful response, no voluntary activities
Vegetative State (Less Than 3):

Sleep wake cycles
Aruosal, but no interaction with environment
No localized response to pain
Persistent Vegetative State:

Vegetative state lasting longer than one month
Brain Death:

No brain function
Specific criteria needed for making this diagnosis

Riley is going through what all TBI patients go through after their injury. She's in a period of recovery and IS making the slow steps we'd expect. The stages range from unresponsive to agitated responsive etc. Of course, in a perfect world we'd love to have Riley wake up, be instantly alert and move on with her normal life. This just isn't the way things will be.

As we've mentioned before Riley's road is going to be LONG. Most of what happens over the next weeks and months is going to be dictated by what Riley does. We know loosely what we are going to do to assist her as she gives us clues to what she needs most but, the reality is only Riley can truly control what happens.

What do we know for sure?
After a discussion with the ST Friday afternoon, we were told that in order to discharge to a inpatient rehab facility Riley needs to be an active participant in therapies for at least 3 hours/day. Active means that she purposely responds to the activities they have her participating in. It is entirely possible for this to happen over the next week but, it may not. If not, we will head home and Riley will participate in outpatient rehab.

Now, Riley is a very different TBI patient. An adult would most likely not go home. Many of you may know adults who have gone through something similar, the next step after the initial hospitalization is a rehab facility. Being at home ultimately may actually be better overall for Riley's long term recovery. Why? She'll be home, around her family, brothers and especially her twin, bathing at home, sleeping at home and participating in our family activities. She'd go in/out of her carseat and ride in the car, all activities that actually aide in the rehabilitation process for a child Riley's age. Where we are torn is if we have the choice on which path to take inpatient vs. outpatient, what will be BEST for Riley? This is where the next 5 days will be critical as we work with the doctors/therapists/nurses to determine where we go from here.

We have termed tomorrow morning as "game on" time. We've allowed Riley the days she needs to rest and recover from her surgery and now we need to see what she can do. We will be following a day/night schedule (dictated largely by what our normal home life would be) and pushing Riley as much as we can during her therapies so we can see what she can do.

We know what we see happening and the progress she has been making and we are faithful that she is headed in the right direction. We know that if therapy wouldn't help Riley, there wouldn't even have been mention of it and we would be faced with a child who persisted in a semi alert state for the rest of her life. Thankfully, Riley is at a point where therapies and youth are going to do the most for her and her future.

I received an email from a mom in TX who has a 5 year old little girl who went through something very similar to Riley as an infant. I've hoped that through the power of the internet someone, somewhere, would stumble upon the blog and relate to our story. Her daughter after many years of therapy is now a healthy, active, athletic 5 year old. Stories like this are what give us the hope and faith we need as the what ifs can consume your thoughts if you don't know that recovery does exist.

I hope this helps to explain what has been going on the last few days and paints a more vivid picture of what we are dealing with day to day. Dave told me that he didn't think I was relaying correctly what we are dealing with. If you have any other questions please email me and I will try and answer them!

We're praying daily that Riley continues down the path to recovery and continues, at her pace, to make the progress she needs to. We pray that we can again make the right decisions when it comes to Riley's next steps. With so many different teams and doctors watching over Riley we've had to really dig deep to figure out what they know is beneficial for Riley and what they assume is beneficial to Riley. A child that presents with her type of case perplexes the majority of the professionals. As with most TBI patients there really isn't a book or clinical study to tell you exactly what her outcome will be. They've given us the hope and faith and belief in our daughter and now we are making sure Riley knows the depth of our hope, faith and belief in her as well.

I'd like to leave you with some collages of all of you in your Team Riley shirts that I made this morning. If your picture hasn't made it in to the collage yet, don't worry I'll update them as I get them. We can't thank you all enough for taking the time to represent our little girl and share your picture with us. I'm off to pick up prints from the CVS across the street and decorate Riley's walls with all of your smiling faces.

Please continue to pray, think about and send all of your positive energy to our little fighter. She continues to need each and every one of you.

Dave, Megan, Logan, Mason and Courageous Riley

Thursday, January 24, 2013

Recovery! 30 days at CHOC

We are now one day post op and Miss Riley has been doing great so far! Her heart rate and oxygen stats are the best they have been!

She's been on a rotation of morphine, tylenol and something similar to ativan the last 24 hours. One of the ENT doctor's that did her surgery checked on her this morning and her incision site and placement all look good.

Her tummy button is also looking good. The GI doctor stopped by while Dave was ready to leave tonight and changed the dressing and told us a little about the care the site will get over the next few days. Hopefully, Riley can get a bath again in 3-4 days!

Today was spent keeping her comfy and making sure we started to learn how to suction her trach and the care that goes in to it. We've been observing and will jump in to practicing the suctioning tomorrow. It will be a full week before the first tube change and until then we just need to watch and learn and get in as much as we can so we can help take care of Riley once we're home. It's not as scary as I think we both had imagined it to be and looks like a small white tube on the end of her neck. I feel like after we get trained on Riley's care we'll be one step away from being RN's. I'm kidding. I know there is a LOT more to being an RN!

I figured we'd recap how yesterday went and give you some of the interesting details we received. We left the PICU floor just after 11:30 am and headed over the the outpatient surgery department which happens to be on the St. Joseph's side of the hospital. It's quite a trek and one we've done a few times as MRI's and CT scans are also done at St. Joseph's. It was an emotional walk with our little miss and yet one we knew we needed to do.

We were checked in to a holding area and spoke with the anesthesiologist and met with the GI doctor real fast. We signed some paperwork reviewed the procedure and then they took Riley off the the OR. They showed us the waiting area and we had intended on heading out for some fresh air when the nurse asked us to wait for Dr. Ahouja (ENT) as he wanted to talk to us before he went in to the OR. Well we sat down waiting for him and not 10 minutes later the GI doctor was back out with detailed pictures of Riley's tummy and announced she was done with her part. We were shocked at how fast that had gone. She told us today that Riley was quite feisty in the OR and the anesthesiologist actually had to give her more to knock her out because the usual muscle relaxer they use couldn't be used due to the trach and need to see muscle strength etc. in the neck during the surgery. Basically, if she'd had it her way the procedure would have been even faster.

At this point we had seen the ENT doctor walk by in to the OR and began our long wait for the surgery to be over. We played Yahtzee a few times and then started getting antsy when the clock was at 1 1/2 and then 2 hours. I actually dosed off for a few minutes but, according to Dave it was a total of 2 hours and 15 minutes after the GI doctor came in until they got us for the recovery room.

Walking down the hall to see her was scary. We were prepared to be overwhelmed with what we'd see and we actually were both relieved once we saw her. She was peaceful and with the recovery nurse so we left our cell numbers with the nurse and tried to run downstairs to grab something to eat. Well, we got lost and ended up back outside which worked out well because the nurse called and Dr. Ahouja wanted to talk to us.

Back in recovery he went over the procedure, how well Riley had done and showed us another set of amazing pictures of her throat, esophagus, chambers to her lungs etc. She had TONS of swelling and visible signs of agitation from the secretions. He even opened up one of the swollen areas as he thought it may have been a cyst. It wasn't. We asked if he'd seen a "floppy" airway and from what he saw he didn't believe so. The pictures reaffirmed that Riley needed this procedure and that she will be so much more comfortable while she recoups and strengthens her airway. He then sent us back out to eat as Riley was still resting well. After grabbing something in the cafeteria of St. Joseph's and nearly having a heart attack when they called us back to the recovery room over the loud speaker we headed back with Riley to her room.

We headed back with Riley to CHOC and ran in to the respiratory therapist that was on call to help if Riley needed to go back on a vent and she was happy as were that she didn't need the assistance. It's nice to "know" some of the people caring for Riley and see how excited they are when she hits a milestone or beats expectations.

Riley came back in her room and was able to get back in her big girl bed and has been doing well since.

To say it was a relief to be done with yesterday is an understatement.

This morning Riley was fitted for heel orthotics which will help keep her feet in a more natural position as she over extends her feet when upset. She should have her new boots tomorrow.

I was at home with the boys this morning when Mason started to do an odd cough that had us worried he might have RSV. I was able to call and get Mason in today to his pediatrician (he's RSV free) and my mom was also able to run him over to the Children's Hospital outpatient facility in Arcadia for blood work. He'll have a whole panel run to make sure he doesn't share any of the same immune issues as Riley. They are fraternal twins so they shouldn't but, we're just being cautious. We pray he doesn't and really that Riley truly doesn't as well.

If we didn't have my mom (and many other family helpers) I don't think anything would ever get done. My mom has always been the type to go go go but, Grammie has been in energizer bunny mode since this all started. If I am home I literally need to ask her to sit down because she starts to drive me crazy (in a good way). I don't think we would be able to feel as relaxed or able to do the schedule we do if we didn't have the help we are getting. Grammie drives Logan to school, does our laundry, grocery shopping etc. She literally has cleaned our entire house a million times (even when we have someone clean once a week) and has probably done 200 loads of laundry. She's also cleaned our backyard and of course "gardened". Between board meetings and teaching Pa Doug entertains the boys, helps Grammie with dinner and bath and reminds me when my bills are due (kidding dad but, now I'll know how thoroughly you read my posts), Grandpa and Grandma Hopper spend the night, come over last minute when we need them to help with the boys, play with them, feed them, put them to bed and help wherever and whenever they are needed. Uncle Scott and Aunt Becky have had Logan over to their house for the weekend and even braved a weekend at our house to give the grandparents some time off. Jen Jen (Fer Fer) has now become part of our rotation and usually stays with me once a week and watches the boys for a few hours on the weekends to give others a break. Our darling nanny Hannah is still watching Mason and sometimes Logan for us part time during the week all while still going to school full time! It truly takes a village for us to manage the crazy schedule we're living right now. So, thank you to each of you for the part you are playing in helping keep us sane! We know we are lucky and hope to one day be able to thank everyone in some way for being there for our family.

Shirts have been arriving so if you get them and would like to send us a picture we'd love to see them! I'll even share my horrible selfie to get things started!

Tomorrow marks day 30 here at CHOC. It is also our nephew Tobin's birthday. We had to miss his birthday celebration last weekend and it made all of us sad. But, we know we'll be able to help him celebrate in some other way in the near future! Happy Birthday Tobin! We love you and are so proud of the little man you are becoming! Thanks for always being such a great cousin to Logan, Mason and Riley but, especially taking Logan under your wings and giving him the extra attention he's needed the last few weeks! xoxoxoxo

Dave, Megan, Logan, Mason and Courageous Riley!

Tuesday, January 22, 2013

Ready to proceed...

Riley underwent an upper GI procedure this morning to make sure she is ready for her GI tube placement. Feeds were stopped at 4am PST in order to complete this procedure. She was taken to the radiology department where they inserted dye to map her insides. The way they do the procedure is minimally invasive so they had to make sure she had enough room around her organs to do the procedure. When the attending this morning explained the procedure to the entire PICU team during rounds it was very fascinating. Nice thing is, barring any complications, she won't need to be opened up and will therefore run a lower risk of infection from the procedure. She'll still have a tube hanging out of her tummy for 4-6 weeks until they can place the button. Knowing she'll be getting the right nutrition is important to us as we know how vital that will be for her brain during recovery.

We also spoke with the trachesostomy nurse yesterday. She explained the procedure and device and left us with a video with further explanation. She made a comment about Riley living with the trach and not being defined by it, not being a "sick" child but, a child with a trach. This comment made us realize and appreciate the personal value she was taking in Riley and also the care in explaining to us what we were trying so hard to make a decision about. We had a normal little girl Christmas Day and yet, we are now faced with these life changing decisions for our little girl. Once placed will this ever come out? Will Riley ever swim, run on the beach or sleep at night without the mist required to moisten her esophagus? All signs point to yes. We've chosen to not look at the "what if's" and rather focus on the here and now.

As of today she is completely oxygen free! Riley is breathing completely on her own. We knew she could. It's just an amazing thing to see especially since 3 1/2 weeks ago she was on a vent and we didn't expect her to live.

So with all of that being said we've decided to proceed with the tracheostomy. A trach will allow her to manage her secretions, keep an open airway and work on healing her other parts of her body (brain) that need the most attention. We now feel confident that this will be something that we will be doing to give Riley the best chance at rehabilitating. We needed to take some time to get to this decision and I can say we are both now at peace with it.

We signed the consent for the surgery, went over the risks and complications and we are now waiting for the ENT team to hopefully coordinate with the Gastro team. The trach procedure will be done tomorrow at 12 or 1230.

Riley is still struggling during her awake times with muscle agitation and spasms. This morning though one of the resident's was in the room while one happened and reassured Dave that it is a good thing to see her moving all of her limbs and at one point almost rolling over. It is all part of the waking up process and finally having someone actually verbalize this to us was nice. When she sleeps she is so peaceful. It is hard to watch her struggle so much. She has an open order for Ativan so at night or during the day when we feel she's really struggling we have them give Riley the Ativan instead of the usual go to Tylenol.

Riley worked with speech therapy twice today. This afternoon she actually let the ST get in her mouth and feel around. She's currently cutting her second tooth so I'm just happy the speech therapist didn't lose a finger. Yesterday, when the ENT resident came by to check Riley out she bit her and the resident said with a straight face "oh no I'm a surgeon I need my hands". We've all had a bit of a chuckle out of that one. Perhaps it's because we've been cooped up in here too long or more because the reality is my almost 11 month did not intentionally try to ruin your surgeon hands :).

Riley demonstrated her gag reflex and strength in her mouth so now the next steps will be to stimulate those muscles even more to get her back to where she was as far as eating/swallowing. I know the ST was surprised at the difference in Riley since even last Friday so she's making improvements we can't visually see as well.

I've had a ton of questions and emails regarding Riley's therapy once we leave CHOC and where we'll end up. Hopefully, crossing our fingers, Riley will be able to be home with us and we can take her to daily intensive outpatient therapy. The therapists here believe that due to Riley's age; being at home, sleeping at home, bathing at home and even going in and out of the carseat and car for errands etc. are going to be factors that are just as important as the therapies themselves. We're still researching facilities so that we know what's available and we expect a transition period between here and home but, not an extended inpatient stay.

Once home we will need TONS of medical stuff. So much that I can't begin to list what it will all entail. We'll have the medical device truck drop off supplies to restock us each month and we will both be CPR retrained and trained extensively on how to care for Riley and her "luggage". Overwhelming but, having our family back together under one roof, even under such different circumstances is very important to all of us. We are going to need to find our new normal and adjust to what Riley's needs are but, we still need to focus on Logan and Mason who deserve our attention and care as well. Home health help will probably be in our future and as we get closer we'll be converting our den/spare bedroom for Riley.

Last night, I was at home and we finished packing up the shirts to mass mail. I dropped them off at our neighborhood pharmacy/post office this morning and they are on the way to all of you. If I missed you please email me again to let me know you want one. We still have quite a few left as I over ordered so we'd have some spares. We can't wait to see all of you sporting your Team Riley shirts. Hannah is going to kill me but, I stole this picture her mom put on facebook of her wearing her shirt. :)

It goes without saying but, without your continued support, messages and well wishes we'd be a mess. My brother made a comment to me last night on the phone about how we were staying so strong and how do we do it? I think in situations like this you don't have a choice. You have to make a choice to be strong, breakdown when needed, cry, vent scream but, at the end of the day still know that your only mission right now is getting what is best for your child and being the loudest and best advocate that you can be on their behalf. It's not easy and I know that without each other we'd be lost but, you just do it.

Dave, Megan, Logan, Mason and Courageous Riley!

Monday, January 21, 2013

A Long Quiet Weekend

All has been quiet around the PICU this weekend. It has generally been much calmer but, this weekend felt even more so.

Miss Riley is resting as I type. She's had a rough couple of days. As far as her medical stats she's doing great but, her awake time has been interrupted by extreme agitation. We're taking this as a good sign that she has the feistyness and fight in her that she needs but, watching her during these periods has been rough. We first spoke with the resident on yesterday afternoon about what we could give her to help her out. Well she really had ZERO advice except to say she could get her some ativan. Problem with the ativan is it makes her much more sleepy than we'd like her to be during the day.

Finally, after I left for the night Dave spoke with the attending and they were able to get her another medicine to calm her down without the sleepy side effect. Dave also found that he could calm her by bicycling her legs. She ends up over extending her extremities while she is agitated and thus causes her legs and arms to stiffen. She doesn't appear to be in pain and her vitals show that as well. From what we can gather and what we've been told her brain is most likely working overtime and the stiff extremities are a sign of that.

We are proceeding with the g tube this week and we are 80% sure about the trach.
We were 100% on board with the trach this morning but, as the day has progressed we've noticed Riley handling her secretions better and so now we're as unsure as we were 3 days ago. We'll have a consult with the ENT team and then go from there.
We've decided that we want to get these procedures done, if they are needed, and then we are ready to move on.

One of our nurses the other day, the one who lowered Riley's oxygen and showed she can breathe on room air, really showed us that sitting around here any longer then needed is a waste of time for all involved. From the PICU doctors perspective we can tell they are "done" with the care they can provide for Riley and really have no answers about what her future holds except what they know clinically. So, it's time to find Riley the rehab facility that will give her the best shot at front loading her body/brain on the road to recovery.

So our search begins. We don't want to just end up somewhere we are directed to go and we are willing to travel to find the right facility for Riley. We are trying to align what she needs with what is available and we're hoping we can find something local. If not, we'll go wherever we can get her the best of the best. Hopefully, the social worker will be helpful in guiding us to the right place. We're looking specifically for a pediatric brain injury specialty program. Most that we have found via the internet are out of state. In our opinion, Riley needs a specialized facility that has dealt with a case like hers. Rehab here at the hospital is very general and although they are knowledgeable about cases like Riley's they really haven't ever specifically dealt with one. I'm hoping the 30 bed inpatient floor at CHLA will have what we need but, we'll see.

Riley's age is still at her advantage and I spent the majority of the afternoon reading through medical conference articles and stories of recovery from many different age groups. Each one pretty much reiterated what the other had said and gives us a good baseline of where we need to assist Riley and what we need to do for her.

To say this weekend left us down would be an understatement. As I mentioned it is super quiet here on the weekends and with the restrictions on visitors it's a ghost town.

Our feelings have fluctuated between anger, sadness, frustration and then a surge of planning to find the best ways to help Miss Riley. There are so many variables to get together and we know our road, Riley's road, is long. As I drove to the hospital this morning Dave reminded me that we are fighting for what is best for Riley and we need to really put all of our emotions in to that fight.

Riley still amazes us with what she has done so far. Things we were told she wouldn't ever be able to do or may never do she's done. I was able to lay down next to Riley today during one of her episodes and she was so calm after we both fell asleep.

We hope Monday brings us some answers and peace with decisions we are making about Riley's care and future.

Please continue to pray/think good thoughts for our sweet girl. Please also pray we make the right decisions for Riley. It's overwhelming having to decide to do things to our baby girl that we barely knew existed 4 weeks ago. We're trying to educate ourselves as best as we can but, the information is endless and time is short in the sense of moving forward from here.

Dave, Megan, Logan, Mason and Courageous Riley

Friday, January 18, 2013

3 weeks- what does the future bring?

Some things take a little time to digest. And some things are easier to take when a detailed explanation/open dialogue is kept. I think that is true for any difficult situation you may encounter in life.

Yesterday, I was here at the hospital with Riley while the fellow and resident came in to check on her as they do every morning. The fellow had just left and we'd just gotten Riley back to a comfortable position when the resident popped in. She listened to Riley, checked her out and then proceeded to have a chat with me.

She first started talking about a g tube and the possibility that Riley would have/need one. Without pausing she then threw in the need for a tracheostomy. Pretty blunt, no explanation and just up and left the room. Ummmm okay. Thankfully, our nurse was in the room to witness this exchange and saw my look of defeat and disgust.

We chatted briefly about how we (Megan & Dave) would really prefer to have these discussions with both of us present and we'd prefer to have them with an attending who has been around our daughter versus the new resident who just hit the floor Monday and knows very little, except for what she has read, about our daughter's case. She agreed, handed me a box of tissues and I left to go call Dave.

To say I was fuming is an understatement and of course a call to Dave had him as riled up as I was. Dave was on his way to the hospital anyway so we were both anxious for rounds to start so we could address our concerns and ask some more questions. As Dave arrived rounds started and before they could even get in to Riley's updates our wonderful nurse made our requests clear and set the tone for the future.

After the review of Riley's case Dr. Tony (as he likes to be called) came in to the room pulled up the trash can and sat down to really talk to us. It was the dialogue we needed and the professionalism we'd expect from every doctor on this floor regardless of title. He apologized for the resident's basic overstepping and we talked about where we go from here for Miss Riley.

First is the G-tube.
A gastrostomy is a surgically created path through the abdominal wall into the stomach. A gastrostomy tube ("G-tube") is a gastric feeding tube, passed through a gastrostomy, designed for the administration of liquid nutrients, fluids, or medications. G-tubes are placed in children who are unable to orally consume enough calories to maintain adequate nutrition and growth or who are at risk for aspiration of oral feedings due to difficulty with oro-pharyngeal control, esophageal motility, and/or gastroesophageal reflux. [Sleigh: 2004]

Riley is gaining the ability to suck & swallow however, due to her age and route she'll be taking in recovering from her illness/brain injury she is going to need lots of nutrition. Nutrition that even with a suck/swallow ability she's going to have a difficult time keeping up with. A g tube will allow her to get the nutrition she needs and also allow us to monitor what she is getting. It will basically, look like a little button on her tummy and she won't need to be hooked up to it constantly, just when she is receiving feeds.
Our biggest concern was the permanence of this g tube. There is no real way to tell how long she will need it 1 month/6 months a year? Riley will dictate how long she has this little button and with time we will know more.

Next discussion was about a tracheostomy. Ughhh yeah.

A tracheostomy is a surgical procedure to create an opening through the neck into the trachea (windpipe). A tube is usually placed through this opening to provide an airway and to remove secretions from the lungs. This tube is called a tracheostomy tube or trach tube.

What we envisioned this being and what it really is are two very different things. Riley would need this to keep her airway open and clear secretions, not as an oxygen support. After rounds today and another discussion with another attending we are much more comfortable with this apparatus and the benefits it will provide for Riley IF needed. The thing about this is that Riley is still recovering from RSV/bronchiolitis. She's on a regular oxygen canula now and only at 2%. She has a TON of secretions and some she swallows most she spits up (which is good). We felt very strongly and the doctors agree, that making the call to put this in is premature. We truly don't know if she needs it but, if she does it will be okay.
Again, the same question was asked. Is this permanent? Nope. Will she need it for 1 month, 6 months? We just don't know. Positive for Riley is that she has tone, strength in her passageway and can breathe on room air so if this is placed it will most likely be temporary.
Dr. Hunt, the attending today, explained to us more about how to them (the doctors) this really isn't a big deal in the long term. Yes, to us it is but, they see these placed all the time to help children during their recoveries.

Ideally, they'd like to do both procedures at once. Only one round of anesthesia, risk for complications etc. Problem is and one thing we all agree on we know she needs the g tube but, no one feels comfortable making the tracheostomy call until Riley's respiratory illness is gone. So who knows. We'll talk more on Monday about whether they will proceed with the g tube and wait for the other or just wait to see about doing both.

We are still in the PICU but, our time here is getting short. Riley is on limited oxygen and really won't necessarily need to be on this floor much longer. I'm hoping we'll be able to stay here after the g tube procedure, she'll need to watched for a week, and not have to move to another floor. After we discharge from CHOC Riley will go to a pediatric sub acute rehabilitation facility before she goes home. We're really hoping to find one closer to home but, I'm fairly certain we'll end up at the one near by in Tustin. It has sub acute and acute services and will basically, be the next step in helping us transition her back home while also providing her with the PT/OT/ST she needs on a more intensive basis.

As I watch Riley sleeping right now I am feeling a sense of calm. Maybe it's because we believe in Riley so much that I know this will be a long journey but, one she'll tackle with extreme fight and feistyness. I believe all the prayers and good thoughts she's received are truly holding her up during this time and pushing her to do more and more each day. Before we began PT this morning Riley was raising her arm and trying to smack the nurse and vocalizing her frustrations with where she is and all the people that are touching/bugging her. She was fantastic during the time she was sitting up and her stats on paper just continue to get better each and every single day. She has shown us one new thing each day that proves that she is coming out of this little by little and won't give up.

We ended our chat with Dr. Tony yesterday with an open discussion about Miss Riley's future. He reminded us that her road is long and we really won't know her true outcome for at least a year. He also reminded us that if this had happened to any of the 4 adults in the room, we wouldn't even be here. He spoke to us about the cases he's seen in kids Riley's age and the amazing recoveries these kids have made because they were so young and their brains were able to heal and re route/program in order for them to live full normal lives. He assured us that a g tube and a tracheostomy were only going to be devices used to help Riley along this journey to recovery not hinder. He left us feeling at peace with the path Riley will be taking.

I hope that one day, we can return to this floor and thank each of the individuals who have been a part of Riley's care with a little girl that amazes them as much as she does us. No matter what disability she'll need to face and no matter what setbacks she'll have, we will take joy in each day we have with her and celebrate Riley for who she is. 3 weeks ago we didn't even think we would have that chance.

Dave, Megan, Logan, Mason & Courageous Riley!

Thursday, January 17, 2013

Wednesday 1/16

Miss Riley Roo.... Riley is, as of this morning, RSV FREE! However, she still has bronchiolitis (basically, she still has ALL of the RSV symptoms, without the title :()
She's been mucousy and wheezy all day but, did tolerate some OT this morning. We worked on sitting her up and stretching her muscles. She has great tone throughout her extremities which is wonderful news! As I type, our fantastic nurse is sucking her boogies and Riley is talking to her. She found a "sweet" spot for Riley today on her tummy (prone) which allowed Riley to relax more and get some rest. She also tested out different variations of oxygen levels to see what she really needed. Riley was breathing just fine on room air but, obviously with her RSV she still needs some sort of support! She found that the lower the level of the flow the happier Riley seemed to be. We've had this same nurse several times and she is one that we love. Her attention to Riley is amazing and she also happened to be the one that got Riley to open her eyes back on New Year's Day. We are looking forward to having her back.

Riley is more alert each day. Today her eyes were both mid-line meaning centered and tracking more. She is definitely more alert as she is showing her frustration during certain procedures and starting to vocalize her annoyance more and more. She really is amazing and showing everyone her strength each day. She's also showing her stubbornness especially when someone wants to put anything in to her mouth. Riley really is a fighter!

I had a call from the neurology team's office today to make a follow up appointment. It's so odd to me that we are already scheduling appointments for 2-3 months down the road. The appointment will be with one of the doctors who we really liked.

As we sit here at CHOC day in and day out there really is SO much we have to be thankful for. Our wonderful little family , our extended immediate family, family & friends near and far who have helped get us through the last few weeks. Ugh saying weeks is just odd.

We've been blessed with so many cards, notes, thoughtful gifts, treats for our nurses and support from many different people. We really do try to count our blessings and focus on the positive as much as possible. It goes without saying that doing this is something that is truly a challenge however, I don't really think we have any other option. If we didn't remain as positive as possible, if we didn't try to pull strength from our army of supporters we'd be lost. We continuously get comments from the nurses about how wonderful our support system is and it makes me sad to think that there are others who do this type of journey alone. So thanks! I know I say it all the time but, we really do appreciate ALL of you!

Beautiful basket of goodies from the Romo's for Riley's team of caregivers!

Thank you Shapiro family for the perfect book!

A few years ago I "met" a group of women who all shared something in common with me. We were all pregnant and due around the same time and as a result shared an obvious common interest. Through the last few years I have had the pleasure to get to know these women more. Last September, a smaller group of us rented a house in Malibu for the weekend and had a girls weekend. Memories to last a lifetime and a weekend I am looking forward to attending again this year!

They all hold a special place in my heart for many different reasons. Many have gone through their own true trials and tribulations and are stronger then they know. I've seen the love that a group such as this can provide for another when in need and never really imagined we'd be the ones on the receiving end. EVER!

The larger group of MEMO's have touched me in so many ways. They have taught me more about being a mom and being strong than I ever thought was possible. Collectively, they've emailed, sent texts, messaged, checked in and also sent a generous gift that left us speechless. Yesterday, I opened a box with the sweetest ABC blanket embroidered with "Riley, the courageous". It was the perfect gift for our courageous baby as it came from a group of super courageous mommies. Thank you to all of you. xoxoxo

I've tried my hardest to acknowledge everyone for every part they have played in this with us and I hope if I haven't personally had the time to thank you you understand that I will get there. I've read every email even if I haven't had the chance to respond. Every text, even if my response is delayed by a day or so. 3 weeks of this has left our minds a bit scattered and I still don't know what day it is most of the time.

The t-shirts are ready and my dad picked them up from Ellen's Silk Screening in South Pasadena this morning. Our good friend Victor has worked there for as long as I've known him and came up with the design and idea along with Dave. Ellen's was super generous in the cost they charged for these shirts and they did an amazing job! If you ever need shirts or anything else silk screened we would highly recommend them! Thank you Victor and Ellen's!

We can't wait to start receiving pictures of everyone wearing them. If you're local (around Arcadia) my parents will be leaving the shirts out starting this Saturday on their porch in a basket for pick up. I got super sized Ziploc baggies that will have your name and size on them. Feel free to come by to get them anytime after Saturday!
If I am mailing them to you I plan to get them out in the mail by Saturday, Monday at the latest. If I'm sending them to you in Canada (there are a few) I can't promise you'll get them before next Christmas but, hopefully it won't take too long! If you've emailed me I have your sizes etc. and if you still want one just let me know and we can send one out ASAP.

We weren't able to get any surrogates approved and they've even said on the PICU floor the only way to get one approved is if you're a single parent. Sucks but, too many people in the last 2 days have been coming on to the floor sick. Baffles my mind why someone would do that but, it is what it is.

Riley is making progress but, still needs the masses to pray for her and send her as many good thoughts as possible. I'll have a detailed (difficult to write) post on the immediate future and where we go from here tonight.

Riley Fight's On as do we. We believe in her and are just thankful we have the chance to be her parents and help her as much as we can on this journey to recovery she is taking. All we asked for 3 weeks ago was for our baby girl to stay with us. Each bump in the road, new complication and milestone we'll take.

Dave, Megan, Logan, Mason and Courageous Riley!

Tuesday, January 15, 2013

Bye bye PICC line and we wait...

Yesterday, Riley finally said bye bye to the PICC line! It had been in for a while so we were happy to see it go! The nurse removed it in the room and of course we took a picture to document it!

Riley ran a slight fever yesterday morning of 101.2. This of course prompted more blood cultures and worry that she may now have a secondary infection. If so, they would start her on another round of antibiotics today. Good news is all of the cultures were negative so she's infection and fever free!

Riley is still battling the RSV. Last night was a difficult one as far as her breathing etc. I know how I feel when I have a bad cold and I am pretty sure Riley feels the exact same way, crappy. The resident overnight would not let her have any tylenol as they were concerned that if she did spike another fever they wouldn't be able to catch it. Finally, around 4am the night nurse got the okay for morphine. At this point I wanted anything to make her more comfortable but, wasn't really a fan of the morphine. The attending happened to show up shortly after and approved the tylenol as morphine can mess with your respiratory system and that is Riley's main issue. She got her tylenol and relaxed and finally slept for 4 or 5 hours.

We've been trying to keep Riley rested as that is the only way to get over the RSV and she still is getting her albuterol treatments every 4 hours. Yesterday, we were told PT was on the way and went to grab a cup of coffee. When they say they are on the way it could be 10 minutes or an hour. Our nurse told them we'd be right back and they said they'd be back in 30 minutes. They never showed. Even after our nurse called them again. Needless to say we were upset. Therapy at this point is minimal and involves stretching and different positioning but, we know she needs as much as she can take at this time.

Today, we had our same sweet nurse and again we wondered when PT would show. All day we heard nothing from them. Finally around 3 the ST came in and I made it very clear we weren't happy with the way the PT/OT/ST "team" was handling Riley. They were going to be seeing her 5x week but, with the RSV we really need to give her time to rest so it will be more of a checking in situation until she is better. This was never explained to us and the no show the day before made us mad. They even tried to put the blame on the nursing staff and trust me it is not a nursing issue at all! Anyway, it just felt like the first of probably many battles we will need to fight for Riley's future care as we get used to our new normal.

The child life specialist brought a small DVD player by today. She also had some Little Einstein DVDs which we were thrilled about because that is one of the shows that Riley & Mason LOVE! We've been turning it on for Riley here and there and hope the familiarity makes her feel more at home in the hospital.

Now that Riley is unhooked from the PICC line it is much easier to get her out of bed. After Dave headed home yesterday I was able to hold her for an hour or so. I was also able to help the night nurse give her a bath in bed. She loved having her head and hair washed and made the sweetest cooing sounds to show how much she enjoyed it. My mom purchased some 12 month nightgowns that we cut up the back and we put Riley in her new nightgown after bath last night. It's nice that she can wear something other then the hospital gowns that she was swimming in.

We are in a somewhat holding pattern for now until Riley gets rid of the RSV. We're still in the PICU. She's still on the high flow oxygen although, they have been playing around with the numbers to wean her off of it. Hopefully, as her RSV gets better the oxygen won't be needed as much, as she does breathe on her own but, with the RSV it is still needed to help her little body heal.

We continue to be overwhelmed with all of the love, prayers and support from all around us. I have some special people to thank tomorrow but, for now need to watch some "toons" with Logan before bed.

Thanks again for everything! We Fight On another day!

Dave, Megan, Logan, Mason and Courageous Riley

Sunday, January 13, 2013

WOOOHOOOO!!! Another wonderful milestone for Riley!

Today ended on such a high note and I had to share it here so I am adding this to a post I already had ready to publish. About an hour ago Riley started moving all of her limbs, her trunk and her head! She was making sounds as she was doing this. We've had a pink bunny she got from cousin Molly by her feet and she was pushing it away with her foot. She had just received her lovanox shot and was agitated and cried (only time I'll ever be happy to hear my baby girl cried). Dave is at the hospital and actually called in one of the doctors to make sure what he was seeing was alright. It is and we are ecstatic! Baby steps that are so wonderful to see! Keep the prayers and good thoughts coming! They are working! And now on to my regularly scheduled post....

Starting tomorrow 1/14/2013 the only people that will be allowed to visit the hospital will be parents. This is due to the RSV/Flu outbreak and for the protection of all children receiving care at CHOC.

Not exactly the type of letter you want to receive on a Saturday morning 2 days before they implement this rule and 2 days before a new week that you had planned out so mom/dad, grandmas/grandpas, aunts/uncles and friends were in place to help with this new norm!

It is what it is. Not much we can do. We are making a case for at least having one grandparent with us when one of us is gone. Dave needs to get back to our business. We're the only two employees right now and running conference calls from the 6th floor at CHOC just isn't cutting it. I was so mad at first but, then realized that this is for the good of all the children here at CHOC. RSV/Influenza is everywhere you turn here. Seems like each room in the PICU has an isolation sign on it. Like everything else the last two weeks we will roll with it and deal with it and move forward.

We received the sweetest surprise from Salsa Sweets the other day. It's funny because I had just been thinking of sending her a message to see if she could make some thank you cookies for the doctors/nurses here in the PICU and voila cookies were delivered without me saying a word.
I already had Salsa Sweets lined up for cookies for the twins 1st birthday in February and I was lucky enough to see her work/taste her cookies in person last September so I know the staff loved them. We split the box up and gave half to the day shift and the other half to the night shift. They LOVED them! If you haven't already and you're on Facebook, head over to her page and like it and check out her work! She is so talented. Thank you Salsa and Memo. Amazing as always!

We've also received two of the sweetest prayer blankets/shawls. One from my mom's sorority sister Emily who lives in TX and another from my sweet sorority sister Carrie. These blankets adorn Miss Riley's bed and we know she can feel the love. I tend to cover Riley in these blankets during times I feel she needs strength. I'll try anything to relay to my little miss that she has an army of supporters behind her and she can do this!

We're still in the PICU. Still waiting for Riley to kick the RSV. She still needs lots of suctioning and seems to get very boogery. Last night was night two of melatonin for Riley. Seemed like it worked. She was very alert and awake today. When I held her today it felt like I was reversing time and holding Riley as she was 4 weeks ago.

Dr. Dre (our favorite resident) moves on to neurology tomorrow. When she did her last rounds on Riley this morning and when we gave her a Team Riley cookie yesterday I almost completely lost it in tears. She's written up a small novel on Riley's case and the care she gave her over the last couple weeks. Dr. Dre is probably around my age. Beautiful,sweet, smart and professional. If you can't tell I adore her. She sort of took our Riley under her wings and really to be very blunt gave her the chance that some had thrown out at the beginning. As she walked out and gave Riley that last glance she told me how much she is pulling for Riley and has enjoyed seeing her progress. Since Riley will still be under neuro's care, Dr. Dre will be back to round with that team and I believe Riley will benefit from having her input on rounds daily.

It's a quiet Sunday. Logan & Mason were sad when Dave left this morning. Those two have amazed me with how resilient they have been through this. Mason is still young enough to know something is up but, not really "know" what it is. Logan is taking this harder as each day passes especially since he is now unable to come to the hospital :( I wish I could just take all the pain and heart ache away from all my children right now and carry the burden for them but, I know that's not realistic. A good dream I suppose. They all just adore one another and having to be away from each other sucks! In a few years when they are all fighting over toys, arguing in the car or just being siblings I hope we can remind them how lucky they are to have each other.
I took a few pictures of L & M yesterday morning. You can just see the love they have for each other!

We start a new week tomorrow and I am hopeful for what it will bring. Riley is showing us through little steps each day how amazing she is.

Thanks again for all of your love, support, thoughts & prayers!

Dave, Megan, Logan, Mason and Courageous Riley!

Saturday, January 12, 2013

Day 17- Written by Daddy

Day 17: Another Day in Paradise

Today is the 17th day of our accommodations at CHOC PICU and Miss Riley continues to make small improvements. Her RSV is getting better, they lowered the oxygen level a little but she is not ready to come off of it completely. Until she can be without it we will remain in the PICU. The attending physician came in and said that they were most likely the cause of the RSV as the hospital is full of it, some things just happen.

We are trying to get Riley’s sleep clock reprogrammed, she’s up all night and sleeps all day. A mantra a lot of us used to live by but I prefer my daughter not be a party girl so we are going to put a stop to that right now. When she is awake and we can see her pretty eyes, she appears to be more alert and it is clear that she responds to women’s voices. Our nurse said that because higher pitch sound travels faster she will hear that first. We hope that her hearing continues to improve, I would love to see her respond to Daddy’s voice again. We have learned how to use the suction tools and try and keep her nose and mouth clear for her as much as possible, we don’t do quite the job that the respiratory therapists do but I am not comfortable shoving a tube that far up my babies nose. She continues to make progress and we will be able to go home soon, we don’t know when, but are looking forward to it.

Maybe it’s the stress of the situation, maybe it’s the exhaustion from not sleeping for days on end or maybe you are just a jerk, but in the weeks of watching over Miss Riley I have seen it all. The father that has tried everything to save his daughter for the past year except he won’t let the doctors do what they need to do to give her the fighting chance. The family that asked for an extra day for their son to be on life support to make sure every friend has time to say good bye. The guilt that they didn’t catch their child choking fast enough and they are losing their son. Parents that won’t lift a finger to help with their child. The emotional roller coaster that is the day to day of being sequestered in the PICU is almost unbearable. As if your own emotions are not hard enough to deal with and control, you have a floor full of parents, some without the amazing support system of family and friends that we have, and they want to unload their pain on someone…anyone.

I have done a pretty decent job of keeping the blinders on when it comes to dealing with other parents, I also believe that I may not seem like the most approachable person, even in my PJ’s walking the halls. I can stare at the floor with the best of them as I walk by the ones that I know, if eye contact is made, will spill their entire story to me. It’s not that I don’t care, if anything this experience has made me care, but my shoulders are only so wide. With one father it has turned into a game of cat and mouse. He is constantly on the lookout for someone to talk to so you have to avoid him at all costs. He has had security called on him multiple times so we figure it is best to avoid any interaction. I find it best to walk fast and stare at the floor or fake talk on my cell phone(don’t give me any crap, you know you have done it yourself).

For all of the stress and emotions, there have been some funnier times here as well. On this floor there is a Ronald McDonald House family area with some computers, a sitting area with a TV and some couches, some games for kids, a kitchenette that has coffee for the families, some free munchies and some private small rooms to make phone calls or converse with your family in a semi private setting. Then there are the volunteers that watch over it from 9am until 9pm, which we refer to as the Ronald McDonald Dictators. Now not all of them are bad, most realize they are volunteers, we are not here by choice, and do not have an agenda to steal the FREE coffee and pastries but others do not.

Since I haven’t been sleeping well I tend to roam the hallways at night, the Family room has a TV and couches so I figured I would watch some late night. Unfortunately, it was stuck on the Disney channel and turns out, they lock up the remote at night. Next morning here is the conversation:

Me: “Good morning, I was wondering if there was any way to have the remote left out so I can watch TV in the middle of the night, something besides the Disney channel?”

RMH Dictator: “I don’t know I am only here in the morning, are you allowed to be here? What is your room number?”

Me: “Yes,621. Could you leave a note for the last shift?”

RMH Dictator: “A note for what?”

Me: “Never mind.”

I forgot about it for a day or so then came back to speak with the last shift Dictator, an older woman who took her job seriously:

Me: “Hello, do you think there would be any way you could leave the remote out, you know, hide it somewhere, so that I could watch TV out here while I am awake at 2 in the morning?”

Old Angry Dictator: “This area is closed at 9pm and you are not allowed in here, no one is allowed in this area after 9pm. People steal the remote.”

Me: “Well the TV is on and all the lights, it sure doesn’t look closed. Is there supposed to be a gate to keep me out? “

Old Angry Dictator: “It’s just closed so you stay out!”

Me: “Can you at least leave the channel on Discovery or a movie channel and not Disney please? There are not any kids watching Disney that early in the morning.”

Old Angry Dictator: “No!”

Me: “Love you too.”

I was accosted for bringing a larger coffee cup than the 4 ounce cups they give you in the kitchenette, for not keeping up with the date on our food left in the refrigerator and for eating on the couch. I love that these volunteers take their jobs so seriously, I wish my paid employees cared as much as these people.

I am still made fun of for my snoring, the nurse the other night said she almost called a “Code Blue” because I quit breathing so long. I really need to get that taken care of. We have had almost every nurse that works in the PICU, know the names, faces and they know Miss Riley’s story. They stop by to see what pretty outfit and bow she has on today and always ask if we need some ice, a snack or something to drink. We truly are blessed to be in this hospital with these top notch doctors and amazing nurses that really do care about all of the kids they take care of.

As the time continues to go by and my cabin fever increases I am sure there will be a lot more experiences to share about our day to day lives here. Please keep our Riley in your thoughts and prayers as she still has a long road ahead but she will get there.


Dave, Megan, Logan, Mason and SUPER RILEY!!

Thursday, January 10, 2013

14 days- 2 LONG weeks

It's now been 14 days since Riley arrived CHOC and 15 days since this nightmare started. I feel like we've moved in to room 621 in the PICU, it's like a mini studio apartment. We know the nurses. We chat with them in the hallways. We've learned the attending rotation and we now recognize the doctors who come to talk to us each day. We've switched from the critical/acute care mode to the long term recovery mode.

What do our days look like? For the last two weeks we've been switching off nights at the hospital. This allows the boys to spend time with mommy or daddy every other day and also allows us a much needed break from the hospital. It is hard to be away though! I feel like we're on the 28 hour resident schedule although ours is more like 30+ hours.

This morning I got up around 7, my mom was up with Mason at around 545. Logan woke up not too long after I did and I was able to see my boys for a little while before Logan headed off to school and I hit the road to the hospital. We live 20 miles from CHOC but, traffic can add 30+ minutes to the 25 minute drive so it's all about timing when we leave. We both try to get down to the hospital between 9/10 if we've been home the night before. We like to both be around for morning rounds and usually we're both in attendance.

We spend the days in Riley's room, we take breaks when we need to and usually have a relative with her when we do. If it's a quieter day and we don't have a relative available we just make sure it's a nurse we "know" who will keep an extra eye on Riley while we grab a cup of coffee from the cafeteria or walk the hallways a bit.
Now we usually have PT/OT in the morning and in the afternoon. We are active participants and it is nice to be so involved in her care. On days when one of our parents can be here around lunch we usually walk across the street and have lunch together. It is the one time we have Dave/Megan time and can actually have an open conversation without others being around. It's nice.

Whoever is going home that night usually leaves between 430 and 530. It can take 45-60 mins to get home, again depending on traffic, so we make sure to time it to be home before Mason goes to bed. Once either of us leaves we've been here for 30+ hours. The odd thing is it never seems that long.

Grandma Marie has gone home so my mom has now taken over the majority of the care at home. My dad helps her as well and got Mason to take a nap in his crib for the first time EVER today. I wish I had known he had this sleep training talent months ago! Our fabulous part time nanny Hannah comes M/W/F as well. Dave's dad Rudy and step mom Beverly will become part of our night time rotation next week and Uncle Scott and Aunt Becky will be spending the weekend with the boys at our house to give the grandparents a break. We are extremely lucky to have such a wonderful supportive family. Each person has contributed their own little something to this scheduling puzzle and we feel blessed!

It's tough to have our little family apart. We were just reaching the point where as a family, outings were more manageable and we'd even braved some meals out together in a real sit down restaurant! We look forward to the day we are all under the same roof again. I think we tend to forget how important it is to all be together as it is often lost in the hectic lives we all lead with young families. Mason and Riley got PB chairs like Logan's for Christmas and I can't wait to see my 3 babies sit in them and watch a movie together one day in the future....

Now for Miss Ri Ri. She's had a quiet restful day but, also had some PT this morning and was put in the upright chair for 30 mins and then hung out in my arms for another 30 or so minutes.
She was awake for most of it but, would take little naps here and there.
We've been rolling her from side to side in order to help clear her lungs out of the gunk that the RSV brings with it. She's been resting so comfortably today that we really haven't bugged her or over stimulated her.

Antibiotics ended today. Her infection is gone. As soon as she's over the RSV she's fully on the road to rehabilitation. The respiratory therapist said tonight they will start weaning her off the high flow oxygen tomorrow. She should be off of it in the next couple of days!

I spoke with the sweet social worker again today. We're all about front loading Riley with the best possible therapies and assistance she can get and she is very helpful with getting that all set for us once we leave the hospital environment. She'll be making special requests, like in home therapy vs. at a facility, due to the RSV and Riley having a twin. Dissapointing thing was when she told me that it could take 60 days from discharge to the start of outside therapies. Thanks State of CA! So, I have started researching private in home PT/OT in order to bridge the gap. I just don't feel comfortable being responsible for that type of rehab for 60 plus days and would much rather have a plan ready to go for when we do get to finally go home.

Hematology spoke to us today about Riley's immune system. They ran a few tests on her antibodies reactions to her immunizations and believe that she does in fact has some sort of immune system issue. Because there is no real way to tell if her results were due to how sick she was, they'll have her on a monthly hemoglobin injection? for the near future. Good news is this is something manageable long term and she could outgrow it. Even better is Dr. Nugent, who we adore, runs the outpatient immunotherapy clinic. Riley couldn't be in better hands.
We will have a referral for Mason to be tested for this rare disorder as well tomorrow. Likelihood that he shares this disorder with Riley is extremely low! They are fraternal twins and had seperate placentas so I am hoping and praying his blood work does not show the same results.

Dr. Hu, Mason and Riley's pediatrician has called our house and the hospital at least once a day. It is nice to know we have someone who cares about our children and wants to work with the doctors here to make sure he is ready for the care Riley will need once we leave CHOC.

Two weeks down and many more to go. With your love and prayers we'll get there. Riley will get there.

Dave, Megan, Logan, Mason and Courageous Riley


***Wednesday 1/9/13 UPDATE***

I've had to stop myself the last few days and really talk myself out of being down. I've cried, I've vented, I've wondered why but, then I realize that I need to count our blessings and celebrate the little miracle that Miss Riley is.

CHOC is not an easy place to walk around. The PICU floor is even more difficult to spend any length of time on. Perspective. We have our baby girl. We're fighting along with her to help her recover from this horrible disease and she has a chance. Others don't.

Riley is doing much better dealing with the RSV. She has coughing fits that send our anxiety in to overdrive but, those have subsided for the most part and her breathing treatments have helped a ton! She still has tons of boogies so frequent suctioning seems to help.

And the best news, Riley is waking up more and more everyday and is more present to not only us but, the staff as well at CHOC. Baby steps, but beautiful baby steps. As parents we were questioning if we were really seeing what we were seeing and then we've been reassured by nurses, therapists, relatives that they see what we see!

We're learning through OT/PT/ST how to help Riley deal with the injuries her brain has suffered and how best to help her come out of her sickness. We've been told to only stimulate one sense at a time, keeping her side of the room quiet and calm and working her muscles and body out little by little to help her regain her strength.

PT/OT/ST are all basically mimicking each right now. We spent time twice today holding Riley and working her muscles with varying stretches and positioning in bed to help them get stronger.

We see improvement each day. It really is amazing to watch her take these little steps.

Tomorrow, she'll end her 14 days of antibiotics that she has been on. We won't know until tomorrow if the ID doctors will want her to continue on another round or not. She continues to take baby aspirin daily to help get her obscenely high platelet counts back within normal range. For now, the aspirin is working. Her sodium levels are still going up and down (on the low end of normal) so she has supplements and basically a water pill helping to balance that out. She is still on one dose of phenobarbital daily to prevent seizures (she's been seizure free for quite a few days though) and a daily shot of lovanox to help keep her blood from clotting.

Overall though Riley's main organs are all working great as they have the whole time. Now, it's time to work with helping her brain recover.

Grandma and Grandad leave tomorrow morning to head back to MT. Grandma has been a huge help watching Mason and staying at our house overnight to help with both the boys.

Today Riley was visited by all of her grandparents and Gwen and Gary (my SIL's parents). They brought the cutest hair bows for Miss Riley and we will definitely be using them as we change out her accessories daily to help make sure each doctor, therapist and nurse knows Riley is a little miss!

Uncle Scott visited after work and stayed around after I left to keep Dave company. We've found that limiting our time alone at the hospital at night is helpful for our spirits. We've both really been down when left to think alone for too long. We're both lucky to have a support system that we can lean on. Dave's brother/Riley's Uncle has been wonderful for Dave. Thank you Scott!

We were finally able to put Riley in a nightgown from home. A nurse suggested we just cut it up the back (like a regular hospital gown) and then our nurse today helped fit her left sleeve over her PICC line. I took this picture right before I left the hospital tonight and she looked adorable!

I have been tracking who wants a shirt/size/quantity etc. and will probably place an order on Friday. We really never intended on any of you buying these shirts and truly wanted it to be our gift to you.

With that being said we will let you know the final cost and it is up to you if you'd like to cover it. If you can't I really don't want you to feel like you need to. Whoever wants a shirt gets one!

Thanks again for checking in, praying for Riley, telling Riley's story and for being there for our entire family. Patience is not my strong suit but, I am trying my hardest to let Riley know that she can take her time and that she is courageous and brave and such a fighter.

Dave, Megan, Logan, Mason and Courageous Riley!
Fight On!

Tuesday, January 8, 2013

RSV sucks!!!

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!

Dave, Megan, Logan, Mason and Courageous Riley
Email address is: