Tuesday, April 30, 2013

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

No comments:

Post a Comment