Changes... A good day!

I had an entire post written out and was going to update it after today's appointment with Dr. Irwin and hit publish.  After meeting with her we have many changes.  Good changes!  So here comes a whole new post!

I've always raved about Dr. Irwin.  I know from an outsiders perspective it may seem that I rave about her because she agrees with me and doesn't question what we say.  Quite the contrary.  She is someone who treats Riley with her specialized expertise and LISTENS to what we have to say and takes in in to account what we see day to day when deciding on what to do with Riley's care.  If Riley needs something that we didn't think she did or if Riley has slipped back and needs doses of medication to be adjusted or upped she's up front and tells us what she thinks.  She doesn't sugar coat things but, she also takes what we say and uses it to treat Riley.   Professionally, as my child's doctor and as someone who has continually given us reassurance that what we believed about our daughter was in fact a real possibility, I think she is wonderful.  As she said today "this is Riley's story and she's writing it the way she wants to".  None of us can really, truly write Riley's story for her.  How far she goes and how much she does is Riley's job.  How she gets there is part of our job and we are all here to support her and provide her with every opportunity to get there.

Wearing daddy's glasses today!

Dave called Dr. Irwin back when we were at CHOC a week and a half ago because we believed that her low heart rate could have been attributed to her medications.  When he spoke with Dr. Irwin  and described  to her how Riley had been since coming home she was anxious to see her.  Due to scheduling conflicts we were only able to get an appointment today which was a little later then I had hoped.

As soon as Dr. Irwin walked in to the room I felt a sense of calm and relief.  As soon as she looked at Riley she knew she was different.  It's almost been a month.  3 weeks and a few days since we left Healthbridge and Riley is already a totally different child.  Before, when Dr. Irwin would enter the room Riley would tense up and her heart rate would go out of control.  Today Riley let her move all of her limbs (with ease) and almost slept through the entire appointment.  She checked some areas that we were concerned about (mainly hips) and didn't notice anything that would really lead us to need to have her further evaluated at this point.  She even called her tone "normal".  Whew.  Normal.  Trust me Riley is far from normal but, hearing that her tone was normal was relieving.

We discussed our stay at CHOC and meds.  We already dropped Riley's afternoon Valium dose (per her recommendation) and now we'll start working on her Baclofen.  This is HUGE.  To get Riley to a point where she can start to wean off of the Baclofen leaves me speechless.  At one point we were being told about Baclofen pumps, similar to insulin pumps, and the fact that Riley may need one for life.  So we have a plan to start weaning her off of the Baclofen and then we'll move on to weaning of the Valium and we'll follow up with Dr. Irwin again in a month.  I know Riley can do this and I am anxious to see how she responds to the weaning.

We also discussed the upcoming fundoplication procedure that we had scheduled for next Wednesday May 8th.  We told her how we were still so hesitant about going through with it and that after switching her method of feeding and playing with the timing of her meds she wasn't having any of the vomiting issues she was having before.  She recommended pushing back the surgery a few weeks and waiting to see if it really is going to be a necessity.  So we'll reschedule for later in the month and still leave the option of having the procedure done out there but, we'll also let Riley write this chapter and give her time to let us know if she really needs it.  Like the surgeon Dr. Khabir, she agrees that we need to give her some time.  I appreciate doctors that don't want to jump the gun on something just to have a case in the books for the next week.  These are the type of doctors you want on your child's team.

As she said Riley is changing so much right now.  Everyday it is something new/different.  Instead of messing with what is working we'll go with what is working.  We also are going to change paths with therapies and focus on TBI specific centers.  Right now is the acute phase of Riley's recovery and she needs the intensive therapies NOW.  Waiting around for clinicians that are talking about limited 1/2 times a week therapies for Riley is not going to do her any good.  She stressed taking advantage of this time.  She's Riley's neuro rehab doctor.  A doctor we never knew existed and thanks to our stay at Healthbridge we crossed paths.

We got in to the elevator after Riley's appointment and I burst in to tears.  I knew seeing Dr. Irwin was the best for Riley but, to have her tell us she sees what we see and to still have the instinctual  feeling that she believes in her as well is just overwhelming.

Last week we saw the pulmonologist and we discussed Riley's last chest xray from the end of March.  At that point Riley had some spots (fluid) in her lungs.  The pulmonologist recommended starting a more aggressive plan of breathing treatments to make sure Riley's lungs stayed clear.  She also wouldn't clear Riley for her 5/8 surgery until we had another chest xray done.  I was hoping that if we were in the hospital (for the fundoplication) she could also have a bronchoscopy done.  We think she may need a smaller trach and the only way that will get approved is if the bronchoscopy shows there is enough air passage or room.  For now, we are on hold with using the passy (speaking) valve.  We did however get to hear Riley's voice last week when her nurse gently put her finger over the trach while Riley cried.  In fact, since then, Riley has cried over her trach.  Girl wants to be heard!


This last weekend we spent a lot of time at home and outdoors.  We had Scott, Becky, Tobin, Drew, Gage, Jen Jen and Casey over Saturday afternoon and Riley was able to hang out a little bit with her cousins.  The stimulation of the afternoon was a bit overwhelming though for Riley and she did not want to take a nap.  What can I say? She is my daughter and didn't want to miss the fun!

Trying to re create Austin in my backyard!

Cousins making forts....

 

Twins!

Brother's causing trouble!

Grandpa and Grandma Hopper were over as well and unfortunately, had to leave early because Grandma wasn't feeling well.  Turns out she had an infection in her gallbladder and she ended up being hospitalized early yesterday morning.  After a treatment of antibiotics they finally did her surgery today and all went well.  We're sending her all of our thoughts and prayers that she comes home as planned in a couple of days and is on the mend soon!

We have a neurology appointment on Thursday.  I was very nervous about this appointment but, know I shouldn't be.  I asked Dr. Irwin if she thought they would do an MRI and it is highly unlikely.  They will probably wait a couple of months to do one.  Really though the MRI is not going to show us anything that will be helpful at this point.  Like she said Riley is writing this story.

We also need to follow up with an audiologist and optomologist.  We finally got the hearing test result from the day we discharged from CHOC and as expected it wasn't very positive.  Since then though we know Riley is hearing us talk to her and she has started to respond to noises on the side that we knew she couldn't hear on.  Again, tests really aren't going to show us what Riley will do but, they will show us what we can do to help her.

Day in and day out keeping the faith and hope can be hard.  We try as best we can to remain positive and only let Riley see the positivity and belief we have in her.  I know the love of her family and support she has is helping her through this process.  I try to remind myself in the really dark times that I need to make sure that my negativity doesn't rub off on Riley.

As we do every night we brought Riley out to hang out with us after Mason went to bed.  As I held her and showed her how to pull Logan's hair again she actually responded.  After 5-6 times of showing her to put her palm out and grab his hair, she did it on her own.  The babies used to love to pull on their brothers hair when he'd mess with them and I was hoping she'd remember.  I don't believe it was a coincidence that she grabbed after being shown how to do it a few times.  She's our fighter and little by little it's all coming back.

Today was a good day.  It was a reassuring day.  Not all days are like this.  Tomorrow may not be the same but, it will be another day with our beautiful daughter and silly, handsome boys that I will treasure for as long as I live.

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

Home Sweet Home Take 2

There are definitely some things in life I'd rather never ever re live.  The trip to the ER and subsequent transfer to CHOC back on 12/27/12 is one of those things.

Last Friday felt like deja vu and even the nurse helping care for Riley commented that it felt that way as well.  Once they sent the ambulance to pick Riley up from the ER it was like living in a dream.  We were given another terrible diagnosis, one that had our minds spinning again and we were back to wondering why Riley?  It just all seemed so unfair.

 

The nurse C, who had also been with Riley in December in the ER, never left her side the entire time we were there.  She remembered Riley immediately and really helped to calm us down.  While Dave ran back to the house to drop off Riley's home health nurse, C and I chatted.

Turns out C's sister had bacterial meningitis 30 years ago when they still lived in Guatemala.  Much like Dr. Doom who told us Riley was gone, C's mom had a doctor tell her the the same thing.  Her sister recovered, it took her many years, and is now a LVN and personal trainer.  I feel like people like C are placed in our lives at the right time to remind us that the hope, faith and belief we have in our daughter is real.  She kept telling me over and over "it's going to be okay mom, Riley's going to be okay."  It was comforting in the midst of extreme angst.

 

We came home Sunday and everyone was thrilled to have Riley back home.  The boys really missed having their sister at home.  We don't really have an actual diagnosis.  She still has some fluid in her brain and brain stem but, that is most likely leftover from the initial trauma Riley suffered back at the beginning of her illness. 

Riley continued to vomit her feeds until Saturday night when the nurse and resident decided to switch her back to the pump feed vs. bolus.  Hopefully, it works.  When we got home Sunday and I did another bolus feed, because we were waiting for the pump delivery, Riley vomited within minutes of me starting.  She lost 1+ pounds in the hospital so we really want her to keep the feeds down!  After talking with the doctors and nurses it's very evident that we will need to proceed with the fundoplication procedure.  We're hoping to get this on the calendar in the next week or so.  It will mean another short stay at CHOC but, it will also hopefully mean Riley's GI issues will be minimized.  Our belief from the beginning has been that Riley NEEDS her nutrition in order to help her brain heal.  There just is no other option.

The doctors and nurses were all very encouraging.  Riley is a totally different baby since her discharge and it was nice that others noticed as well.  As much as we love the PICU staff I can honestly tell you we never want to have to be on that floor as inpatients again.  The memories of why we were there in the first place are very raw and as one nurse put it I think we all were feeling a bit of PTSD this weekend, especially Riley.

Once we got home we were on our own for a few hours before nursing care started again.  We survived, although it was stressful.  Thankfully, Uncle Scott and Drew were able to spend the morning with the boys so we could bring Riley home without the added distraction of the crazy duo! Grandpa and Grandma Hopper came by to see Miss Riley Sunday afternoon.  Pa Doug and Grammie came over as well and Grammie stayed the night as Dave had a red eye to Florida Sunday night.

 

 

 

This week we have an appointment with Riley's pulmonologist and we're hoping to start to discuss decanulation or at least the process at the appointment.  We'll follow up with Dr. Irwin in her office next Tuesday and discuss adjusting Riley's meds more in detail.  One reason the doctors think Riley's heart rate was dropping is that she needs a new baseline as far as meds are concerned.  It's possible that her heart rate was dropping because of this.  We'll see. 

Now that we are back home we're back to settling in to our new normal, again.....  Yesterday, I took Logan to get fitted for his tuxedo for Leane's wedding in May. We had a lunch date as well.  I know Logan has missed these special times with me and hearing him tell me that he had the best morning with me was really nice.  I can't wait to see him all dressed up in his tux.  He's worried about wearing a "comberbun" as he calls it but, I think he'll love it once he sees what it actually is.

 

Uncle Brad was in town on a business trip yesterday and was able to come over for dinner and spend some time with us.  It was a nice evening and I know I've said it before but, I'm really looking forward to my brother, SIL, niece and new nephew moving back here in a few months.  We missed Kara and Molly but, really enjoyed having Uncle Brad around!

 Last week, before the chaos of the weekend, Rochelle and Chris stopped by with more food and Chris was able to hold Riley.  It's so nice being able to have visitors in our own home! We've been enjoying the meals sent by Sharon Briffett as well and we've even gotten Logan to try some new things for dinner thanks to all of the wonderful food! 

Thanks again for all of your support.  As soon as I asked for thoughts and prayers you all went to work and we truly felt the love and support for Riley and our family.  Riley is so blessed to have so many people that care about her.

The nursing coordinator from Riley's home health company told me yesterday that with patients like Riley once you see huge improvement there is always a setback. This last weekend definitely felt that way.  I hope that now that we have that out of the way it means Riley will continue back on the road to recovery.  It's like we go 10 steps forward and 5 steps back over and over again.

Fight on!
Love,
Dave, Megan, Logan, Mason and Courageous Riley

UPDATE

It all started early this morning during the shift change with Riley's nurses.  Apparently, overnight, Riley had an episode of dropping her heart rate in to the low 60's.  Pretty unheard of for Riley.  While the nurses were giving report she did it again and our day nurse immediately listened to Riley heart and heard an arrhythmia.  She immediately said we needed to go to the ER and Dave came and woke me up.  It was early and I felt like we were back to day 1.

We made the call to go back to the original ER we had gone to only because it was rush hour and Riley was having heart issues.  We didn't want to risk driving in traffic back to the new CHOC ER.

While in the ER she had a few more of these episodes and was given medications to stabilize her.  It worked for a while but, then she needed more of the medicine.  A CT scan was done and the attending doctor came to tell us he thought Riley had hydrocephalus:

Hydrocephalus seen on a CT scan of the brain.
ICD-10	G91, Q03
ICD-9	331.3, 331.4, 741.0, 742.3
DiseasesDB	6123
MedlinePlus	001571
eMedicine	neuro/161
MeSH	D006849

Hydrocephalus (pron.: /ˌhaɪdrɵˈsɛfələs/), also known as "water on the brain," is a medical condition in which there is an abnormal accumulation of cerebrospinal fluid (CSF) in the ventricles, or cavities, of the brain. This may cause increased intracranial pressure inside the skull and progressive enlargement of the head, convulsion, tunnel vision, and mental disability. Hydrocephalus can also cause death. The name derives from the Greek words ὑδρο- (hydro-) "water", and κέφαλος (kephalos) "head".

 Ok....   So we requested transfer to CHOC which Dave had already called to see how to speed up the process.  At this point we were numb.  We were sitting with the same nurse from 12/27 who NEVER left Riley's side the entire time we were there.  Coincidentally, she told me about calling to check on Riley mid January at CHOC and a story about her sister that I will share another time.  Nurses are amazing if you all don't know already.  She kept telling me Riley will be ok.  Over and over as I cried and cried.

We prepared to transfer to CHOC and waited impatiently for the transport team.  They arrived and the nurse let us know that Dr. Doom would be seeing Riley once admitted.   We promptly asked for any other neurosurgeon.  Dr. Doom is not someone we wanted to see again especially right now.

Riley went with the transport team and Dave accompanied her while I followed in the car.  As soon as we were settled back in the PICU one of the other neurosurgeons came in, felt Riley's head and declared she had been misdiagnosed.  Cue deep breathes.   However, he was a jerk and may or may not have caused me to be a tad flippant and share some not so nice words about neurosurgeons in general with the nurses.  I believe I may start to advocate for bedside manner 101 classes for all pediatric neurosurgeons.  He tried to make nice after but, I am pretty sure he doesn't want to run in to Riley's mom anytime soon.  So needless to say Dave and I both have neurosurgeons we are not so fond of!

So with another "mis diagnosis" but, still a dropping hr and arrhythmia everyone is currently stumped. 

Riley is on the PICU again and staying for observation overnight while we wait to see how we proceed from here.

The PICU is so comfortable for us and it was nice to see so many familiar faces and share the new Riley with all of our "friends".  We ran in to the doctor who broke the news to us that Riley wasn't brain dead in the parking garage tonight and she'll be coming by to see Riley tomorrow.

For now, we wait, pray this isn't anything major and believe in our Riley.  She's alert.  Pissed that she has IVs in her hand and foot and has tried to bite off the hand IVs.  Riley's feisty personality is very evident right now and we are happy she is able to express her frustrations even though it's hard to watch.

Riley is in good hands.  She's back with the doctors and nurses we trust.

Thank you for your thoughts and prayers.  Riley needs them as she deals with this setback and we try to figure out where to go from here.

Fight On!

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

Scheduling and catching up!

We've been busy catching up on life and getting Riley set up for her many doctor's appointments, follow up visits and therapies.  I never knew how much time this was going to take.  I think I spend half of my time in the office trying to get the next week scheduled for Riley and trying to make sure we have everything taken care of!  I'm exhausted.

We need to figure out in the next week or so how we proceed with the nurse staffing as well.  Ideally, we'd love to keep 24 hour care but, we'll only be covered for 16 hours a day.  We'll cover the additional hours for the next couple of weeks but, we'd like to slowly get down to just the 16 hours that we have coverage for eventually.  It's so hard trying to decide which hours to keep and which hours we'd be willing to give up.  Monday night due to scheduling issues we were without a nurse from 10 pm to 6 am.  It wasn't really that bad of a night but, it's pretty hard to actually sleep when you're worried about a monitor going off or something going wrong.  Add in random Mason wakings and we know we won't be giving up that shift!

Riley is doing GREAT though.  After a rough first week home she has really settled in.  Her heart rate is back to the numbers we were seeing before leaving Healthbridge and she is moving her extremities with ease.  She's been tolerating her passy valve multiple times a day.  This weekend while I was out of town she was very vocal and I know Grandpa Hopper and Dave really enjoyed hearing her voice!  The look on Riley's face when she hears it is also priceless. 

 Hanging out with Hannah

Riley had her pediatrician appointment last Thursday.  It was basically to get her checked out by Dr. Hu and go over her vaccines and where she stands right now.  We did have them give her the pneumococcal vaccine and we'll be going back next month for some more shots!
Riley weighed in at 19 pounds 15 ounces so she's still gaining weight despite her week of puking episodes.

Snuggle time with Grammie

We've been trying to set up therapies somewhere closer to home and it's just not going to happen.  Next week we'll head back to Healthbridge to check out the outpatient program they have and I'm also looking in to a center in Pasadena.  Thankfully, we've had wonderful nurses who have been working with Riley daily in the meantime.

Being home as a family is wonderful and the boys, especially Logan, really love having Riley around.  I can't tell you how many times we've gone looking for Logan and he's sitting in Riley's room watching cartoons with her or playing on the Ipad next to her crib.

This week Logan was able to have Grandpa and Grandma Hopper and Grammie and Pa Doug come to school with him for Grandparents Day.  Friday he has a Jog a Thon and we plan on bringing Riley to watch.  We'll see how it goes.  I know she will enjoy being out of the house with all of us.  The weather has been so windy and weird here in the last couple of weeks so we've mainly kept Riley indoors so we can protect her from the elements.  Being a trach baby really causes her to be susceptible to much more than the rest of us and we don't want her to catch anything else.

Tomorrow we head to visit the surgeon to discuss Riley's fundoplication procedure.  We've started using Colic Calm, which was recommended to me when Logan was a newborn, before her feeds and it has been helping.  The Colic Calm along with warmer formula seems to keep her from vomiting so we're now very torn on how to proceed.  We'll go to the appointment with an open mind and lots of questions and hopefully leave with a plan.  We just want to be assured that Riley really needs this procedure.

Thanks for your continued support.  We really appreciate it as we figure out this next chapter in Riley's life!


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

Settling in....

Getting settled has been exhausting!  We're trying to get everyone on the same page as far as Riley's care and make sure we all settle back in together as a family.

We spent the weekend just enjoying each other and spending time as a family and with family and friends.  It was nice and SO needed.

 

 

 

Our biggest news is Mason is WALKING!  He started the toddler swagger a couple weeks ago, you know take a few steps, pause and realize what you've done and then plop back on the floor and crawl away.  We knew he was so close to really getting it and he has!  It is so much fun to watch him cruise around and he is crazy!  Like I've said before he is our fearless, do anything, try anything baby and as we watched him climb the stairs, palm a ball and dive back off of the stairs this weekend we realized he is going to really keep us on our toes.

 

 

Saturday Tia T, Uncle Mike and Baby Mia came over.  They brought our favorite tri tip from the Milazo's deli/store and most delicious salads we've ever had.  If you read this Nick I NEED the recipes!  It was a beautiful afternoon after a dreary morning and we enjoyed just hanging out in the backyard watching the kids run wild.  It was just like a Saturday we'd do before Riley's illness, filled with good friends, food and drinks and it was so nice.

 

 

 

Sunday morning Shane stopped by and got to witness Mason and his crazy ways!  Later in the day Jen Jen and Casey came over and brought a late lunch/early dinner which we've been enjoying for the last few days.  Grammie and Pa Doug and Grandpa and Grandma also stopped by.  It was wonderful being able to have so many visitors for Miss Riley.  We know she enjoyed all of her visitors and really feels at home.

Monday, Mommy and Logan had a much needed movie date to see the Croods.  Super cute movie that almost made mommy cry at the end.  Logan loved wearing his 3D glasses and munching on his hot dog, nachos, popcorn and Slurpee (what can I say the kid's been through a lot the last few months, we enjoyed our movie date!).

We've been trying to get to the piles of mail, laundry baskets of clean clothes and closets that need organizing.  I finally spent a good 4 hours in the office today and it was amazing how much I was able to get done.  Thankfully, my mom is still willing to come on Tuesday and Thursdays to help with Mason and hang out with Riley so mommy can get some of these things that have been neglected checked off of her never ending list.

Tomorrow we head to Riley's pediatrician in Arcadia for a check up and probably a few shots.  It was decided before we left Healthbridge to hold off on her 1 year old shots and other recommended shots for the time being due to not wanting to upset Riley.  We'll also be discussing her long list of medications and how we proceed from here.  Dave caught some sort of bug late last week and has been on antibiotics so we are hoping the extra phlegm Riley has had the last couple of days is only due to the weather and not a shared family cold.  We'll find out tomorrow.

I wish I could adequately describe the difference in Riley's demeanor since she's been home.  She rarely tones, looks all around, focuses on her family and generally looks happier and better.  We've received her evaluations from Regional Center and they have placed her on most charts at a 1-3 month old age developmentally.  That was a hard report to read but, it is reality.  Thankfully, the services and support exist to get Riley the help she needs to re learn all that has been lost.  We tell her multiple times a day how proud we are of her and again how brave and courageous she is.  Logan runs in and out of her room whenever he can to just talk to her and hold her hand.  Mason wobbles in the room and they lock eyes in a way that only twins can do.  These are all a part of Riley's overall therapy that she couldn't get in a hospital setting and we know it is helping her in so many ways.

One thing that I have struggled to articulate well is just how thankful and appreciative we are of all of you.  It all started in the really dark days at CHOC when we had deliveries of hospital goodie bags, cookies for the nurses or cards, emails and texts.  The support continued with notes, stuffed animals, blankets, pj's and clothes from Grandma etc. and culminated with welcome home flowers (Thank you Ron & Chris), books, meals and more.  I had a hard time tonight as I met another delivery guy at the door (Thank you Kendall! and thank you Wendy for last night's delivery!) not breaking down and crying.  He saw Riley's sign out front and said Congratulations and I really had to step back and realize that even though I don't think he knew what he was congratulating us for he was right.  We are the luckiest family in the world to have our baby girl home and it really wouldn't have been made possible without all of the prayers, love and support we've received from all of YOU.

So thank you.  Thank you for supporting us through the hardest days and continuing to support us.  Our family is so thankful and overwhelmed with the kindness we have been given and continue to receive.  It makes the days easier to get through knowing Riley has such a large Team behind her.

No one ever said life would be easy and trust me I have learned over the last few months that life can truly test you in ways you never ever imagined but, you can make it and with support like we've received anything is possible. 

Thank you for being on Riley's Team. 

Fight On!

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

Home Sweet Home! Finally!

 

 

The last few days have been emotional for so many reasons. 

When we made the decision to go to Healthbridge after Riley's discharge from CHOC we hoped that it truly would be the "bridge" we needed before ultimately bringing Riley home.  And it was.  The staff, residents and community were definitely something we all needed.  It took a few days to get adjusted to but, once we were all settled it really worked out for our family.  We're thankful we were able to spend the time we did at Healthbridge. 

Riley had the most amazing nurses, therapists and doctors.  Of course there are always a few people that you don't mesh with or don't work out but, overall everyone was fabulous.  As we got closer to Riley's discharge date the goodbyes started and the tears and hugs were plentiful!  When you spend so many hours a day with someone and they are taking care of your child you tend to develop a relationship with them.  The way they personally cared about Riley was something that  we knew existed but was only really expressed those last few days.  I suppose most of that is due in part to the nature of the job but, it was amazing to see the genuine care and concern that all of these individuals have for our little girl.  Even Dave got a bit choked up and had to cut a few conversations short the last couple of days.  It was hard to say goodbye!

***A few thank you gifts for the wonderful people that took care of Miss Riley

We watched many patients leave Healthbridge to go home and always wondered about the day we would head home.  A, one of the many patients we  met went home a week or so ago.  She's been coming back for outpatient therapy and I was able to snap a pic on our way out with her.  For someone who has been through so much herself she was always encouraging and always telling us that it will take time but, Riley can do it.  We'll miss seeing patients like her everyday.

***All buckled in and ready for her ride HOME!

We had so much stuff to bring home.  Clothes, toys, blankets and medical supplies.... Tons of medical supplies.  We tried to arrange the room as best we could before we got home but, we knew there was no way to tell how it would all work out.  Thankfully, the nurses have been really good about getting everything organized.  I know it helps them to know where everything is and they've been in a home setting before caring for similar patients so they know what does/doesn't work!

Wednesday we took Riley to her GI appointment on our own.  Due to a mix up regarding how Riley was going to get to and from the appointment we had no other option then to take her by private vehicle.  It ended up working out okay and we survived our first trip with Riley without any hiccups.  We met with the doctor  who originally placed Riley's Gtube.  She went over Riley's ph probe study and as we expected Riley has a pretty bad case of reflux.  We'll be meeting with a surgeon sometime next week to discuss the fundoplication procedure/surgery.  It will be a laproscopic surgery and Riley will need to stay at CHOC for a couple of days.  We were very hesitant about putting Riley through any other surgeries but, we've tried different methods of feeding her, different medications and nothing is really working.  Getting Riley comfortable and well fed is our number one concern and we believe this will ultimately be the best option for her and aide in her recovery process in general.

***Thankfully, we have a double stroller!  This is how we had to travel to Riley's doctor appointment and all the stuff we had to bring with us!

Wednesday night the boys stayed with Grammie and Pa Doug and Jen Jen came over to help me get Riley's room really ready.  We were able to get a ton done and it made bringing Riley home much easier.

We had no idea what to expect when we got home.  I mean, I've never had a mini hospital room in my house before and quite frankly the thought of having "strangers" in your home while you are trying to live your normal life takes some getting used to.  Thankfully, we'll have some continuity with care.  I think it will be good for Riley and for our family.  Logan keeps asking me what the nurses name is and checks on them a million times a day. 

We hope that over the next few days we all are settled in and can get in to a good routine.  It will take time though I'm sure.  The adjustment has been overwhelming and Riley is doing okay but, definitely knows she is not in her room at Healthbridge anymore.  When we first got home on Thursday I walked in the front door with her and she opened her eyes to look around.  Riley knows she is home.  Right now, that is all that matters to us.  She's where she needs to be and the logistics of continuing her care at home will hopefully fall in to place.  With a 13 month old and almost 4 1/2 year old who have been used to us all living apart for so long things are a bit chaotic.  We hope by Monday we're all adjusted and that Riley calms down a bit once she gets to know her nurses and our new routine takes shape.

Next week we'll jump in to a more normal schedule which will be filled with doctor appointments and therapy visits.  We're still figuring out the therapy end so while we wait to see where we end up going we're going to be working with Riley on our own.  We've gone back and forth on whether we want her therapies to be in home or outpatient at a facility.  Where we live is great for getting to many places in Southern California but, not necessarily close to what we need for Riley.  Due to the specialized type of illness Riley has had we really need to make sure we are getting her the right therapists who are familiar with a case like Riley's.  We're hoping a few facilities near us will be able to work with her.  If not we'll use Healthbridge on an outpatient basis for therapies.  While doing her therapies in home seemed to be ideal to us it doesn't seem to be what will be best for Riley.

***Logan modeling the hat that Hannah's aunt made!  We LOVE them!  Thank you Selena!***

Thank you for ALL of your support and my apologies for the delayed post.  Life has been quite hectic as we settle back in at home.  Thanks to my bff Erica we've had meals delivered and it's made it so much easier at night to not have to worry about what to make for dinner!  Thank you Erica!  Thank Jennifer!  Thank you Tia T & Uncle Mike! 

At the end of the day there really is no place like home and we are thrilled to all be together again as we continue to support Riley on this journey.

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

Easter Weekend

We hope you all had a wonderful Easter weekend surrounded by family and friends. We all had a very busy weekend and now we're in countdown mode!
I thought I'd start this off with a picture from last year at Easter!

Mason, Mia and Riley

Friday we were given the results of Riley's PH probe test.  This was the tube that was inserted in through her nose to her esophagus and measured the PH coming from her tummy.  The results showed what we had been suspecting and she has reflux and gastritis.  :(  While this provided us with some answers as to why she always seemed to tone and become agitated after a feeding it has also brought back up the discussion of a fundoplication procedure. 

Fundoplication is a type of surgery to prevent stomach contents

from returning to the esophagus (food tube). This is achieved by

wrapping the upper portion of the stomach (fundus) around the

lower portion of the esophagus. This tightens the lower esophagus

so that food and fluid can go down into the stomach but cannot

return up to the esophagus to cause symptoms of gastroesophageal

reflux disease (GERD). Info from gikids.org
 

Riley will have another GI appointment at CHOC on Wednesday with the doctor who originally put in her gtube and we'll discuss where we go from here.  While we want Riley to be comfortable and we know getting these things under control will help her, we really don't want her to have to go through another surgery if she doesn't have to. 

For now, they have upped her dose of Prilosec.  She still spit up/vomited throughout the weekend, right after her 4am feed which makes sense because she gets her Prilosec dose at 6 am.  Thankfully, early this morning I was able to sit with her and rub her belly for an hour or so and she didn't spit up.  I'm hoping that means the upped Prilosec dosage is working but, realistically I know it may have just been a fluke. 

Riley has been very alert and very awake.  So much so that Friday afternoon I called Dave in tears as I sat with our baby girl and watched her look all around the room, follow my voice to both the right and left sides and just look at me like she was back.  It was a moment that really took my breath away.  She was just Riley.  Of course it makes me nervous even sharing that as we all know for every step forward, inevitably there will be a step back but, for now we are enjoying how calm Riley is and celebrating this milestone.  Her HR has remained more normal and has even dipped below 100 for longer periods of time which even though normal makes us nervous because for so long she hovered in the 160's and that was what we got used to.

Uncle Brad, Aunt Kara and Molly came by to see Riley Friday morning.  Aunt Kara, being an optometrist, was able to look in Riley's eyes and reaffirm what we were seeing.  Dave forgot to get some pictures but, the resemblance between Riley and Molly is amazing!  The last time my brother was out here was when Riley was in critical condition at CHOC so I am happy he could see her in much better shape.

Friday Logan was able to spend the day with Grammie, Pa Doug, Uncle Brad, Aunt Kara and Molly.  He has been talking about this day for months.  They went to Chuck e Cheese and decorated cupcakes back at Grammie's house.  Logan LOVES Molly and I think the feeling is mutual.  It was so cute to see him around one of girl cousins because usually he's around his boy cousins who are older.  Logan can't wait for Molly to live back close to us in CA and I can't wait to see our kids all grow up together!

Saturday morning Grandpa Hopper came to spend the day with Riley and the boys got to go with Tia T, Uncle Mike and Mia to an Easter Egg Hunt in Glendora.  It was something we had planned on doing with the kids so I am thrilled that they were able to go.  I know Logan had fun playing with all of Mia's cousin's especially Roman.  Logan loves older kids!  I was told Mason was very well behaved and had fun watching all of the kiddos and excitement of the morning.

 

While the boys were gone we were able to get going on cleaning and organizing our house!  Jen Jen and Casey joined us early Saturday and we started filling the big trash bin I rented and getting things ready for Riley's homecoming.  Tia T and Uncle Mike helped us out when they got back from the egg hunt.   Uncle James, Uncle Scott, Drew, Gage and Tobin were also over and Uncle James has almost finished putting Riley's room circuits to a back up generator panel so that if we were to lose power we can just plug it in to a generator and be assured Riley will have the support she needs.  Logan even got to dye eggs with Jen Jen's assistance.  We are very thankful for the help of family and friends.

Easter morning I was home with the boys and they had fun digging through their baskets.  Logan couldn't believe the Easter Bunny remembered he wanted silly string.  The night before he reminded me and I realized the bunny forgot the silly string!  We (Jen Jen and mommy) made a late night run to Party City to pick up some silly string so Logan wasn't disappointed.  The look on his face when he saw it in the morning made the trip worthwhile!  I did enjoy the fact that Logan told Mason after they opened their baskets that Easter wasn't all about the bunny.  His exact words:  "It really was about Jesus and how he was on a cross and came back again".  I think I can safely say he grasps the concept of Easter, at least a little!

I took the boys over to my mom and dad's house for brunch Easter morning while Dave stayed with Riley.  Helen, Mark, Joanna, Uncle Brad, Aunt Kara and Molly were there.  We had a wonderful brunch and Logan and Molly did an little egg hunt together.  I had not seen Molly in months and her little personality was adorable.  She loved Mason and kept trying to help give him his bottle.  She's going to be a great big sister!

After Grammie and Pa Doug's we went home for naps and then headed to Riley's to spend the afternoon with her.  My parents arrived at the same time we did and I know we were all overwhelmed with the reaction Riley had to seeing Mason.  As I said, she's much more alert and aware and she couldn't take her eyes off of Mason.  We took the kids out back to play and hang out and Riley loved being in the sun and feeling the breeze.   I know Riley will thrive being back home with all of us.

 
3 more sleeps and Riley comes home!  We're hoping we're ready although much like bringing a newborn home for the first time, I don't think you're ever really "ready".  We've had more equipment delivered and I don't know where we are going to put everything!  Our old den is becoming a mini hospital room in many ways.  We're excited and anxious but, looking forward to being under the same roof for the first time in 3 months.  If you have a Team Riley shirt we'd love if you'd wear them on Thursday for Riley.  I have a few special surprises for her homecoming and we'd love for you to share in our joy. 

Fight on!

Love,

Dave, Megan, Logan, Mason and Courageous Riley!