Monday, December 31, 2018

2018

I am sitting here at 12:34am on December 31, 2018, and wondering how another calendar year is coming to a close.  I looked back on my other New Years Eve posts and they all convey the inner conflict with wondering how another year has flown by as fast but has gone just as slow.  This year, however, I feel as if I couldn't quite keep up with all of the changes.  It seems like 2018 was a year with the most change, with the most ups and downs, and filled with the most uncertainty.  Without sounding as defeated as I feel, I feel 2018 was the year that I realized there really are some things that are impossible to overcome.  It isn't to say that 2018 was the year I gave up, but more the year I realized some things just need to be set free.

2018 was the year of more hospitalizations than 2017, with the longest one being 22 days.  It was the year she experienced her first ambulance ride and the year she experienced her first status epilepticus event due to a 2-hour long seizure.  It was the year I felt like my disappointment towards CDKL5 as an entity grew leaps and bounds due to the limitations this lack of protein has caused for her body.  In 2018 her overall health was all over the place and it is hard to make heads or tails of what if anything it might mean for what could potentially be in store for us.

In 2018 we added a new Endocrinologist to her already lengthy list of doctors.  It was the year we found out she had 5 active fractures at one time and they weren't from anything someone did to her.  It was the year she was diagnosed with having osteoporosis and having the bones of a 90-year-old woman.  It was also the year we were attempting to strengthen her physical capabilities and were left with a beautiful gait trainer sitting in the garage with her brand new only worn twice AFOs sitting on the handlebars due to her inability to weight bear because of her still unhealed wedge compression fracture on her spine.  2018 was the year we agreed for her to have a bisphosphonate infusion in the hopes it would help improve her bone strength, but instead, she is sadly still experiencing the side effects. 

2018 was the year she was granted the ability for her to be in her happy place more often than not by being gifted her very own swim spa in our backyard by Make a Wish.  It was the first year we participated in Make a Wish's "Walk for Wishes" and raised $2,000 for them.  It was the year we donated a wagon to Phoenix Children's Hospital and had a license plate placed with CDKL5 so we can continue to raise awareness of a growing but still rare community needing research to help those who are impacted.

In 2018 we learned Sonzee's CVI score fell tremendously; a score that is known to not waiver, yet she has suffered so many seizures, had so many medication changes, and experienced so much over the year that it is not so surprising that her vision would be negatively impacted.  She wore her glasses regularly and patched various amounts throughout the year.

2018 was not her smiliest year, but it was during the year that her smile came back when I wasn't sure we would ever see her real ones again. It was the year she went ice skating, started school for the very first time, and went to Dutch Wonderland in PA. 

In 2018 we had to start venting her stomach 24/7 as she was unable to tolerate even her own stomach acid.  She tried botox in her pylorus in hopes of helping with her motility.  She trialed multiple GI medications, and it was also the year that we finally demanded we do something more to address her GI pain.  2018 was the year she began TPN for an undetermined amount of time.  It was after 3 weeks her GI system appeared to thank us for the assistance and for making that decision.

During 2018, Sonzee went through (and failed) an additional four seizure medications.  It was the year we broke our rule of not having her take more than two seizure medications simultaneously and she ended the year on four.  It was the year we tried CBD (again) and maybe this time it will help her!?

2018 was a year that for some reason hit me down really hard.  It was a year that I feel drained what little hope I might have had, yet attempted to restore it in bits and pieces in various ways.  It was the year I feel took a huge toll on my psyche, my anxiety, and my spirit.  2018 was a really tough year in a lot of ways and it is a year I am ready to close the chapter of.  Moving into the next chapter of 2019 with CDKL5 by our side is a fearful prospect because we really don't know if it will make 2018 and all the years prior look like a huge blessing.  It is a gamble we have no choice but to make, and one I will take with a fake smile on my face in hopes that the days of 2019 will be kind to our little bear and make it become real. 

While I am apprehensive to see what lies ahead for Sonya's Story in the new chapter of 2019, I am also eager for the potential.  I am hopeful that 2019 will grace us with some semblance of calmness and be kind to us among whatever chaos is thrown our way.  I am hesitantly looking forward to the blank pages that lay before us and pray that only happiness, joy, and positive reporting will fill the next 365 pages.

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Friday, December 28, 2018

Adjustments

Every time Sonzee goes inpatient it always takes time for us all to readjust to being home.  The first day is usually filled with equal amounts of excitement and stress.  Excitement because of the obvious, and stress because life at home has been literally going with enough to get by and hospital life has had me missing so much of what has gone on at home that blending the two worlds usually results in the inevitable first night "Randi tantrum".  It is usually filled with everything a three year old would be giddy with excitement over witnessing, and everything a mother would be cringing her teeth over; but I would hate to disappoint either.

Overall I really do honor the motto "do not sweat the small stuff", but after coming back into real life pretty much all of the small stuff turns into insurmountable stuff; including but certainly not limited to items on the counter that have literally been sitting in the same spot for three weeks, laundry in the washing machine but the machine not turned on, and or toys sitting out or put in the wrong location.  I can feel the tension building up inside as 100 bags that have been accumulated from the hospital as if we went on a vacation and hit the gift shop spider web sit on the floor taunting me.  The kids are of course rambunctious and wanting to release their energy by either arguing with one another or playing with the least appropriate indoor toy.  I am exhausted and completely overwhelmed with everything, and then after walking by the filled but not running washing machine, or item sitting in the same spot, like a branch on a tree, I just snap.

They are certainly not my finest parenting/wife moments, and I hate that they happen, but sometimes Sonzee isn't the only fragile one in the house.  There are so many adjustments that come from each of her hospitalizations and it isn't like there is any easying into the situation.  It is like being thrown into the middle of the ocean where there are only sharks swimming around and you have watched a couple videos of people swimming but have never received any actual swimming lessons.  The fear of drowning, being eaten alive, or whatever else you haven't even considered is at the forefront of your mind.  You have no way of knowing the outcome or if the information you have learned will make any difference, all you can do is just close your eyes and pray you make it through.

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Monday, December 24, 2018

The Nutcracker

When my oldest daughter turned three a tradition was started for her to attend the Nutcracker ballet.  When our 2nd daughter turned three, she joined in the tradition.  I debated for awhile what I would do when Sonzee turned three, would I take her as well? Afterall she did turn three, and that is the only rule.  Would she like it?  Could she see it?  Would the music be too loud or the lights too bright?  I had so many questions and thoughts running in my mind, but ultimately I called up the theatre and bought her a wheelchair accessible seat; Sonzee would be attending her first Nutcracker.

As I sit here, in room 8129, my heart is hurting, and for so many reasons.  The majority of the rooms at PCH have their green lights on ready to welcome their new occupant.  There are literally three nurses on the floor when typically there are six or seven.  Sunday nights are normally my nights at home, but for a couple of reasons that didn't occur.  I miss being home, I miss what I don't even know I am missing, and I miss normal. 

Ultimately tonight I am a mixture of sadness and anger.  I like to think that overall my attitude towards life with a medically complex child thanks to a mutation within a gene that occured during a "fluke", what should have been, routine situation, is pretty positive, upbeat, (sarcastic) and "go with the flow".  For the most part I ride with the waves, take what comes our way and always try to make lemonade out of lemons.  I have handled the fact that the majority of typical children milestones will not happen for Sonzee, im fact I let it go the majority of the time.  I try to let it slide that Sonzee should be in preschool at the same school her siblings and cousins go to and she should be on the playground during recess with both of her cousins, because she is in between both of them gradewise.  I deal with the fact that my other 4 children are acustomed to and seemingly okay with the fact that I am not there every morning before school, after they get home, or to give them a kiss goodnight.  Those things are okay.  They are just part of our normal.  But what I am having difficulty with is the fact that within our new normal accomodations are made, plans and schedules adjusted, there is room for "life happens", and yet today has come and what should have been her first time seeing the Nutcracker will instead be spent in room 8129 for the 20th night. 

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Sunday, December 23, 2018

Details

Last Monday I took Sonzee's oldest sister to a doctors appointment at one of PCH's specialty clinics.  They are scattered all throughout Phoenix and I tend to take whatever is first available, so I drive all over the valley.  It was when I typed in the directions into maps and the blue pin popped onto the screen that I knew exactly where this one was located.  It's the one specialty clinic I have managed to avoid since April 16, 2015.

I cancelled the directions, because I knew exactly how to get there.  Every time I am on the 101 going west I do a quick glance out the window as I drive past, almost as if it is a nod of respect.  Yet in 3.5 years I have never walked back through the doors.  The entire drive there I was hoping my emotions would be in check.  After we parked and walked in I was surprised how unrecognizable it was to me.  There were no flashbacks in my mind of waiting in the lobby, no visions of where we sat or which door we walked through.  I couldn't remember if the room we were sitting in was the same room where the printed and highlighted research report along with 2 sheets of paper were handed to us.

I would have thought all of the details of the day would have stuck with me, but all my memories have a blurred background.  I remember the conversation we had with her doctor verbatim and I remember getting into the car and doing the exact thing she had warned against.  I remember every detail of the drive home and the first person I said things to do at my daughter's dance class that evening when she asked how the appointment went.  I remember the next morning when I could hardly get out of bed, and my mom telling me "time is of the essence", that I needed to get up, make phone calls, and do everything I could.

Little did we know that no matter how much effort was poured into our research of CDKL5, or how many therapies we would enroll her into, or how much money we spent on every alternative option provided, or how many second opinions we would get for treating her various symptoms, the outcome wouldn't be any different.  While the genetic mutation written on those pieces of paper certainly does not define her, it does set forth incredible limitations that even the most well intentioned, sadly, cannot overcome.

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Thursday, December 20, 2018

Restrictions

When we first came to the hospital at the beginning of December I was excited and a little surprised when they said the kids could still visit the room.  The past two weeks we have been enjoying the ability to have the kids see Sonzee whenever they pleased, for me to see the kids nearly daily, and for us to all have dinner together on occasion.  After a walk downstairs on Tuesday one of the main greeters told me she had bad news and she wanted me to know because she knows the kids come every day and she didn't want us to be surprised on Thursday.  

Visitor restrictions went into effect yesterday at 8pm.  For those unfamiliar with that term it means no children under the age of 12, including siblings can visit inpatient rooms, nor can they be in the main floor lobby (unless they themselves have an appointment).  What it means to many families in a similar situation is that the already challenging balance of making sure you were doing your best to keep the "family unit" a thing is now nearly impossible because you have to go outside to the round-a-bout to see your other children and they now cannot see their sister.  It is a safeguard and in all honesty I appreciate the limitation of exposure of all the illnesses floating around all of Phoenix, however, it does make an already difficult situation more depressing.

I was able to attend my older children's honor roll breakfast, spend the day with Sonzee's little brother today, and surprise the kids at school pickup.  Sam and I did our visitor restriction routine, and exchanged pleasantries and a quick hug in the round-a-bout knowing Sonzee was left unattended during that brief period.  We are used to this game, and honestly I think we have perfected our system, but gosh it really adds an extra dose of emotions.  Hoping we don't have to stay too much longer and can manage to stay out until restrictions are lifted in April/May.


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Monday, December 17, 2018

Rafting

10 years and 3.5 months ago while Sam and I were on our honeymoon we went white water rafting in New Zealand.  It was my first (and last) time ever setting foot inside an inflated flotation device holding onto a oar and wearing a life vest.  I remember the (short) training we underwent prior to getting in the raft and for some reason we were chosen (maybe Sam volunteered) to be in the front.  Sam was ecstatic, I was not.  Immediately after we began the course I felt completely unprepared, and I fully regretted the decision to accommodate his adventurous side.  About 5 minutes in after our first wall of water rolled over my head I was done.  I was scared to death, I had just swallowed water, I saw my life flash before my eyes, and I wanted nothing more than to get out of the raft.  I looked over at Sam who was having the time of his life and who at first didn't notice the tears streaming down my face because of all of the water; and then I told him "I want to get off", to which he replied "this isn't a ride Randi, you can't just get off".

These past 13 days I have been learning everything I never knew I wanted to know about a central line, and specifically a port.  The last time Sonzee was on TPN she had a PICC line and for some reason, maybe it was because she never went home with it, or because I knew much less, I do not remember it being as scary.  Every time I wake up throughout the night I check her cords and the needle.  In the morning I do the same and sit in bed with her, careful of the lines, but completely fine; by the afternoon when we do her daily CHG wipe down, change her clothing and sheets my brain remembers she is leaving the hospital with everything on her body, and by the time the new TPN/Lipids are brought into the room the panic begins to set in.  As soon as the bag starts to get primed my body goes into a full blown panic attack, and all I can think of is my experience on the raft and all I want to do is scream to the nurses to remove the port, tell her doctor to stop the TPN, and run out of the hospital.

I cannot stop thinking of every way these items could potentially kill her.  Changing the tubing connector leaves an unfiltered opening directly to her heart, bubbles not removed from the tubing appropriately can cause air to get into her vein, bacteria not cleaned from her skin or accidentally transferred from the tubing or the nurses, or myself can cause an infection and lead to sepsis.  What if all of this does not even help with her GI issues?  What if she just suffers from a potential consequence of the we have to try?  What if this ends up being the worst choice?  I remember our first consultation with her surgeon almost a year ago when he went through the lists of risks and then said "but just know, when it comes time and you make whatever decision you make, just remember that even if something happens it doesn't mean it was because of your decision".  Those words played in my mind so many times as we made our final decision to move forward, and maybe I even told myself they made sense, that they are rational words, and I believed them.  Yet, for some reason now that we are living this reality I already feel such a heavy weighted guilt over where this could potentially take her journey.

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Thursday, December 13, 2018

Room 8129

We knew before we "checked in" that this was not going to be a short stay.  Generally speaking, her average length of stay is 7-10 days, and when we asked her doctor what the "usual length of stay was" for what we are doing, and she replied "a minimum of 10 days" we knew we might beat her 28 day stay.  We have never had that sort of knowledge in advance, so we did our best to mentally and logistically prepare.  It was not the ideal week to get started because of Chanukah, but it was when it worked with our team of doctors, so we obliged.  Our first week has gone by with just enough hiccups to feel we are right on track, yet I cannot answer the million-dollar question of "when are you going home?"

Hospitalizations have become part of our family "norm".  We have a sort of routine if you will.  The experience is sadly, yet comfortably, familiar.  The bigger kids get excited when there are no "contact precautions" and they can enjoy the playroom after school or get to watch whatever movie Sonzee has on in her room.  They handle it all in great stride and complain minimally in respect to their ages.  I know it has to be taxing on their minds and hearts, I see it written in the words on the dry erase door in the hospital room; "I hope you come out of this hospital soon", "I love you Sonzee", and heart and various shape drawings.  It stings for a split second and then it makes me smile.  


We have met a lot of new staff this stay but have seen a lot of friendly familiar faces walking the halls, popping in, and assisting with Sonzee's care.  I have bonded with mom's in the laundry area, we have shared the floor already with 2 other families we know, we got a room with the "bed", our window faces North, and the view is beautiful.  There is a constant mixture of feelings because of the situation and because of this journey in general, yet there is this feeling of community and sense of normalcy.  I suppose it is hard to understand unless you have ever lived this sort of life, and I am not wishing it on anyone, but considering other variables, there are worse things than living in room 8129.

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Monday, December 10, 2018

Avoidance

It's 10:15 on Sunday night and I am sitting by my desk at home.  It is the one night a week I allow myself to sleep at home when Sonzee goes inpatient, specifically because it is Sunday night.  Not much happens on a Sunday night at the hospital, so it is "safe" to let Sam stay.  I only sent one reminder text to have him make sure the nurses wore their masks when they changed the tubing on her central line, so I think I am doing well.  The washing machine and dryer are running their cycles, there are lullabies playing in the kids rooms, and everything is calm; except I have already stopped myself twice after I swore I heard Sonzee's seizure sounds and I felt my stomach fall. 

This happens every Sunday that she is inpatient and I sleep at home.  I don't understand why my mind cannot take even a few hours off.  Once I hear the sound, the panic fills my body and it takes so long for me to talk myself down.  My thoughts start to bounce all over the place.  I sent Sam a text and of course she's snoring away with some soft music playing in the background, calm as can be, so that should give me some comfort.  Yet I feel like it is never really about the "seizure sound" when she isn't around.

The "seizure sound" is merely a lightning bolt that matches the internal struggle of chaos I feel over every admission she undergoes.  Most probably because they are never straight forward simple admissions.  They are always weighted and involve "small" but really massive changes.  Her admissions are the times I am unable to ignore the medical complexities that are very much a part of her daily life.  I have no choice but to actually face reality when she is in the hospital, and I would much prefer to stick on my smile and say "she's okay", "she's Sonzee", or some other simple pacifying phrase.  I dislike the nagging panicky feeling that accompany the majority of the situations with her life, and I really dislike when there is no way to avoid dealing with them.

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Monday, December 3, 2018

That one time...

I am not the most comfortable when it comes to direct sales, it makes me uncomfortable to send personal messages on Facebook, send texts on my phone and put myself out there, yet I became a Younique consultant over the summer.  Truthfully it was really just because I wanted a discount on the makeup products I was going to be buying anyway.  My sister thought it would be fun to do live videos on Facebook, and we started off doing them semi often, but then life continued to happen and we really haven't been doing any.  They are honestly fun to do together and we have a good laugh or two, which is really the entire point, neither of us really emphasized the selling component of the makeup, but if it happened, it's a perk.  Then about 3 weeks ago a friend of mine who has purchased mascara from me told me about a vendor fair that was going to be taking place yesterday, and for some reason I said "This sounds like a great idea".

Over the last two weeks a lot has been loaded on our plate in regards to the direction of Sonzee's care.  It seemed as if things were unknown and up in the air for so long and then all of a sudden the logistics came together, yet mentally nothing is actually cohesive.  I would be lying if I said everything was surprise, yet I would also be lying if I said everything was not.  While some of what lays ahead are based on the recent situation where we became aware of just how fragile her bones actually are, the other things are based off of conversations and care conferences that have been occurring for months, and topics that have been discussed for literally years.  In addition to everything that is going to occur she has been sick and missed an entire week of school, and my emotions and thoughts are really all over the place.

As I sat in the room yesterday with various vendors, it was only fitting that the makeup counter from Nordstrom was placed across from me one table over, their setup taking up two long tables.  Women who have clearly done these sort of events before.  Women who brought those fancy makeup chairs and wore the makeup brush aprons.  I wanted to leave the minute they began to set up their table.  After all, it was the first night of Hanukkah, I was missing attending the candle lighting with my family, and we only have 3 nights of Hanukkah as a unit before Sonzee and I fly solo on the 8th floor of PCH for g-d knows how long.  I felt guilty I said yes to this event, I felt angry that I didn't stand a chance at selling anything when I was missing out on crucial family time.  I felt upset and scared about everything that is coming our way.  So there was that one time that I sat at my first vendor event, wondering what the heck I was doing there in the first place, in front of complete strangers and my close friend and cried.  And then I wiped away my tears, acknowledged that it wasn't about the vendor event, made some friends, and even made a sale.

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Sonzee's Slideshow