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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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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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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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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Wrong

Yesterday was a big day in our house as we celebrated Sonzee's baby brother's first birthday (officially it is Wednesday, although I am still in denial how that much time has flown by already), and her biggest brother had his final championship game for ice hockey (that we did not anticipate his team qualifying for).  It was a jam packed day, but filled will the typical chaos that comes with life of multiple kids; except for the fact that overshadowing it all was that Sonzee has been sick since Friday with the medically complex version of a common cold and she spent the entire weekend in her room, missing it all.

The saddest part was not even the fact that she was missing from the festivities or that she won't be in any of the pictures from the day, or that she spent the entire weekend rotating pain/fever medications and having constant seizures (which is not her typical "sick routine").  The saddest and worst part of the entire situation was that, I have come to expect this in our life.  The disappointment and sting was not as strong as it once was.  This has happened so many times, it is now part of our typical.  I was just beyond thankful this was one of the Sunday's she happened to have her nurse, so she could stay home and in her room to rest quietly and neither Sam or myself had to miss out on the festivities.  Despite the normalcy of the situation lies still a blanket of guilt.

Guilt that it is okay for us to go on our day without her present.  Guilt that we are used to it.  Guilt that there was relief in having her nurse care for her.  Guilt that life continued to go on without her being there with us in the same room.  Guilt that I didn't cry over the situation.  Guilt that it was better for her to spend the day in her room and not with the rest of us.  Guilt that this is her life.  Guilt that there is nothing we can really do to help her.  There is just so much guilt.

I was partially proud of myself for not letting the situation get the best of me, but partially upset that I didn't.  It continues to be a common recurrence, especially as she gets older and each time I am unsure what reaction is right.  I know nothing about our life is really normal, so there is "not really a right"...but it all seems to wrong.

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