Saturday, January 23, 2021

January 23, 2020

Dear Sonzee, 

Today you swelled oh so much more, despite our best efforts to limit your intake.  Nurse Paige gave you a bath...I feel like I recall you not being uncomfortable during it.  You had so many snuggles today. We still didn't know what to tell your siblings, we let them give you hugs and kisses and spend as much time as they wanted because we didn't know how much time you had left.  They made you pictures that said, "feel better".  They assumed that because we had not taken you to the hospital that meant you couldn't be that sick.  Being unable to find a middle ground (again/still), Aba and I continued our adamant differing opinions and desires, until Dr. Wendy made the call to send out a hospice nurse along with our social worker to assess the situation.

That was a really tense situation.  They both arrived and I could read their faces completely.  I knew they agreed with my assessment.  Our social worker for sure didn't get paid enough to offer the amount of support she did for us.  She did as good of a job as anyone could trying to talk with aba, but aba just wasn't having it from anyone.  He was not giving up.  He couldn't understand even now that it wasn't up to us...we had done everything we could, it didn't matter, you were calling the shots from now on.  As an olive branch, I asked Nurse Amanda to come and do a set of labs.  I was vehemently against the proposed idea to take you to PCH only to have them tell us "there was nothing to do" and then have them admit you to hospice and come back home.  Over my dead body was anyone taking you out of the house and into that ER to end up right back where you were.  I stated that really loudly...I am sorry for all of the screaming and fighting that happened right next to you.  I bet you wanted to sit up and tell us all to shut up.

After the visit, aba was still not able to agree to hospice, so I was told by our social worker that she did put in a note that if I called hospice myself there was approval at this point to admit you.  The hospice nurse told Sam that he needed to do something, either take you in himself or get you admitted to hospice.  You were swelling just too much...something needed to be done to make you comfortable.  You didn't complain, but I am sorry if you were in any pain over our inability to be a parental unit.  I can't imagine the amount of swelling you felt was comfortable at all.

In the evening we accessed your port and nurse Amanda did your labs. By nighttime, your swelling was getting even worse.  You couldn't clear the fluids from your lungs.  At 2am after aba and I cried many many tears, aba called to admit you to hospice himself.  I think we both cried ourselves to sleep if we even slept?  From that point on I wouldn't leave your side. I whispered to you every night onward that you were such a brave and strong girl and whenever you were ready it was okay to leave.  We still hadn't told many people.  It would take me 2 more days to be able to post about it on your Facebook page to let everyone whose lives you touched know that your time with us physically was limited.

Until tomorrow.

Love always, Ema

The Mighty Contributor

Friday, January 22, 2021

January 22, 2020

Dear Sonzee, 

Today the few people who were aware of the situation going on all checked in on you. Everything was essentially, "the same".  I went to work today.  It would turn out to be the last day I would physically step into FBC for work in what now has been an entire year.  I was perplexed over your rash and one of the para's at West Valley son's had a rash randomly also so I clung to the fact that maybe, just maybe, what you had was just some random virus.  I played the "what if" we went to the hospital game in my mind. What if we went and at least received confirmation that it was not any of the viruses on the PCR swab.  What if we went and they said there was a way they could help you.  I kept this soundtrack to myself.  I had to appear like a bull to aba because he was playing this game aloud as it was so I couldn't show that I was considering these thoughts or off to the hospital you would have gone.

Deep down, I knew.  I knew you were not sick.  I knew the interventions PCH would have done, would have been with your best interest as a doctor to do, but I also knew in your current state that would require interventions that crossed our hardline and there was no guarantee they would reverse what had already begun and then you would have died at PCH.  We promised ourselves and you that you would never die in the hospital.  No matter what he had to do, it was home or Ryan House, that was the final answer.

You looked worse today in terms of swelling.  Your feed had now been off for close to 2 days.  You were on Pedialyte, but we kept having to lower the rate or your lungs would fill with fluids.  Aba was against lowering the rate, soI let him take over your pump.  I couldn't keep having you choke.  He would keep the rates as high as possible for as long as he could before you would show signs of coughing and or choking.  I wanted it off, I couldn't bear you coughing, choking, and essentially suffering any more than you were.  It was a horrible place to be.  We were in touch with all of your doctors, we were receiving guidance, but we had not officially admitted you to hospice.  They were there to listen to both aba and I give our perspective and wishes, but ultimately when aba was asked, he wasn't ready for "comfort care".

I wasn't ready to have your death sped up in a hospital.  I knew the outcome.  So for the first time in your life, I stood my ground solidly.  It was not easy baby girl, but I knew I had to for you.  I was done humoring everyone to prove what was happening.  I didn't need to be told "you were right".  I needed you to be as comfortable as possible, in your familiar settings, with your people, and no PCH restrictions of who could see you.  I didn't need to humor anyone on your behalf anymore.  So I dug my heels into the ground and held firm.  It would get harder tomorrow.  Tomorrow it would feel worse than the last few days had...who knew that it is essentially how every day onward would turn out to be.

Until tomorrow.

Love always, 
Ema


The Mighty Contributor

Thursday, January 21, 2021

January 21, 2020

My dearest Sonzee, 

Today is one of the hardest days to write about.  It isn't like any of the upcoming recollection posts are easy, but there is something to be said for finalizing a decision and moving forward because otherwise you are just stuck, which would be how it was today.  Today a year ago I dropped your siblings off at school and drove over to FBC and sat in the parking lot.  I was torn on whether I should work today.  If it wasn't the flu that you had then I wouldn't have panicked over potentially exposing other medically complex kiddos.  I was really conflicted on what to do, so I reached out to Miss Jaime and she agreed that I should stay home until we knew.  Phew! That removed a lot of the guilt I felt over not delivering speech services, but the safety of other children in your position was something I have always felt extremely strong about.  You know my feelings on "allergies", so the potential of something deadly walking into the halls of FBC on my clothing made me feel sick.

I drove home.  Meena was having an evaluation at Madison Elementary, so I checked on you before I picked her up to take her. You were in bed the entire day.  Today was one of the last days I would get into an insurance argument over medication of yours not being covered.  (PS: They finally called to tell me it was ready to pick up 2 days after you died).  I had little to no patience to deal with anyone trying to tell me "no you couldn't have the new nasal rescue med" that Dr. Jarrar had just prescribed.  I spent literally hours today calling every pharmacy in the valley and speaking with both Aetna and Mercy Care.  FINALLY, after Dr. Jarrar changed the medication to a different nasal rescue med, PCH worked it out.

Today a year ago your father deaccessed your port and forgot to put in the heparin.  (Ironically, it would not really matter, but more on that in a few days).  He worked it out with Nurse Amanda, and eventually reaccessed you and gave you the heparin and deaccessed you again.  I am so sorry for all of our mistakes that resulted in you having more pain.  Your lips were so dry, they were bleeding and cracked.  It didn't make sense, you had been "sick" before (just never actively dying).  By the afternoon the lightbulb clicked in my mind to call the dispatch health service Corrine's mommy always talked about to come and give you a flu swab.  Aba didn't understand why it mattered, me, the type A lady over here NEEDED to know.  I might have lied to the woman on the phone and told her you had every symptom of the flu because when I initially said you didn't have any, she said you wouldn't be given the swab.  I said you were home with aba and maybe things had changed.  I texted Aba and told him what to say when they came.

By 3pm with a lot of fighting between aba and myself, and discussions with hospice Aba said we would be admitting you to hospice.  I relaxed a bit but didn't know what it really meant except that we knew you needed someone to help support our decisions and you in any way possible.  By 4pm the decision was reversed.  I wonder what our social worker thought of today and the next 3 days.  I know you had to be aware of all of the chaos occurring.  I apologize to you about that.  It had NOTHING to do with you...it was aba and I and our disagreement over the same outcome but not being sure how to get the same outcome with our different ways of thinking.  Ultimately, we both just wanted the best for you, whatever it was.

You hadn't peed much today, we started to increase your fluids...that always worked historically.  But, historically, you weren't dying.  Your swelling got worse over time.  I was on sibling duties today, driving everyone to their activities after school.  By 6:30 Aba called to tell me it wasn't the flu.  I remember being in the car, I remember the immediate lightbulb that went off in my mind.  It took me an entire 2 minutes to replay a conversation with Dr. Wendy in my head from when you were a baby and I had asked her, "how would I know if you were swelling and dying"...she said "you would know", "the fluids have nowhere to go and they just flood the body".  I knew what we were dealing with. It wasn't the flu, you weren't sick (but I would continue to go down a list of potential maybes).  

By the time I got home from the last activity, it was around 7:15pm I walked into your room and asked everyone what the dispatch health person said about your rash.  No one understood what rash I was talking about.  It was on your cheeks, your hands, your legs.  It came out of nowhere, obviously between the time Nurse Paige left and the dispatch health people left.  Dr. Kelly crossed off all of my ideas.  We were left with my only option.  You were officially dying.

We went back and forth with hospice multiple times.  It was horrible.  I felt so lost, so alone. I was too afraid to talk about it on the CDKL5 support page because years earlier a similar situation happened and it turned into an awful ordeal.  People don't understand.  In their defense, they just can't until they see it themselves.  I didn't want to be told: "I was giving up".  It was obvious this was not my decision.  This was your body communicating it was tired, it was sick, it was unable to heal, it was shutting down.  Your father couldn't wrap his brain around it.  To be honest, I couldn't either, BUT someone had to be your voice, someone had to respect the situation, plus, I would have forever to deal with my emotions, so while you were here I was determined to just focus on the situation and the facts.

By the end of the night, you still had a fever, you were on oxygen, your heart rate was elevated, you were so very swollen, and I said the words to Dr. Kelly, "I am wondering if this is just her body shutting down".  We would stay the next 2 days at a crossroads between hospice and essentially the land of nothing.  Your father and I didn't talk, really, we hardly even looked at one another.   It was a dark and lonely place to be. It was tense, the house was essentially falling apart.  Your siblings knew you were "sick", they came to your bedside every day.  We didn't tell them anything more than you were "sick" at this point.  It hadn't even been 2 months since Saba died, we couldn't tell them you were dying just yet, especially when aba hadn't come to terms to deal with it either.

I am just sorry there was so much turmoil in the decision, in the air, all around you.  We only ever wanted you to be comfortable and at peace. I am sorry it took us a few more days to sort our emotions out enough to best help you.

Until tomorrow baby girl.

Love always, 
Ema

The Mighty Contributor

Wednesday, January 20, 2021

January 20, 2020

Dear Sonzee, 

Today is one of the more challenging days to recollect.  It is the one that left me feeling in limbo and completely unbalanced on that tightrope I had been walking your entire life.  It felt as if I was walking on a disappearing rope and at any moment I would plummet.  Today was the day that your fever was still present and no specific flu symptoms presented, but instead, nurse Paige began to get concerned over your oxygen levels.  Your poor cheeks were turning a light shade of pink and when I returned from work and checked on you, your eyelids looked like they were getting puffy and you were on oxygen.  You looked exhausted, and you were just sleeping in your bed.

By the nighttime Aba went to play hockey and it was me and savta holding down the fort.  You started to vomit around 9pm.  I panicked...vomiting was no longer a common Sonzee symptom unless your tube was misplaced.  Savta came to the rescue to help me after I literally had to call her over the phone from the other side of the house.  It wasn't just a small amount of mucous either, it was a ridiculous amount of that awesome bile you puked all over Auntie A circa 2016 when we first got you on the NJ tube and those residents learned really quickly that it is best to start really slowly with you.  You were so lethargic, you were so limp when I lifted you up. Your eyes wouldn't/couldn't even stay open. You looked so sick I didn't have the heart to do anything but change your clothing and blankets and wipe you down.  I could tell you were not up for even a quick bath.

I rationalized that it was my fault because I must have given your meds too fast.  I had not even flushed with water because I was so afraid to cause you more discomfort.  For the remainder of the night, I sat in that uncomfortable red Ikea chair next to your bed switching off between working on IEPs and binge-watching the entire show of "Cheer" on Netflix.  Throughout the last two weeks of hospice, I would repetitively ask nurse Paige how on earth she never said a word about how awful that chair was.  I will forever feel awful for not providing something more comfortable for your nurses.

Tomorrow would be the day that I would start to go down the "what if" spiral.  It would be a day where your father and I would start to butt heads over the potential course of action.  It would turn out to be one hell of a day.

Until tomorrow.

Love always, 

Ema

Tuesday, January 19, 2021

January 19, 2020

Dear Sonzee, 

Today, a year ago, the questions began to flood my mind, but overall I wasn't overly alarmed.  There was some confusion within my mind because there were no other symptoms besides a ridiculously high fever that we couldn't get you to break.  We did round the clock fever reducers but your temperature fluctuated between 100-103.6 and you felt frozen.  Mrs. Zupnick asked if your toes were purple, and how blood flow was, I remember you were paler than any other color, but again, nothing overly alarming.  I texted Dr. Kelly, she went down the list of symptoms and I crossed them all off.  We considered starting you on Tamiflu just in case, but we both decided that since you had no other symptoms besides the fever and other viruses were going around, it was best for you to not have another med that was just going to be a crapshoot. 

You were "blah", but honestly so much of the last six months that would have been exactly how I would have described you the majority of the time anyway.  We let you stay in your bed and just rest.  I googled the timeline of flu about 600 times and it wasn't making sense why you only had just a fever on day 2.  Ironically, I was actually feeling relieved that you hadn't started with a runny nose, cough, or any other symptom because I was going to assume that meant it wasn't the flu...but also I didn't exactly consider it to be death.

Your seizures stopped along with the start of your fever, so whatever it was we knew your body considered you sick...regardless if it was just the way your body was handling stress or a real illness. Today you rested...but tomorrow...tomorrow is actually the day that my mind started to wonder...it would still be another 2 days until there was a shift in my thinking...

---

I often wonder what you must have been thinking or truly feeling during your last days.  I know deep down we made the very best choice to keep you home.  I have zero doubts in my mind with the information that would soon follow that everything we did was not only in your best interest but absolutely the right answer.  My heart breaks the same regardless of those facts.  I won't ever be okay with you having to endure all you did.  Still, even as peaceful as we attempted to make your last days of life I wish your ending could have been different...less chaos, less pain, and less confusion (so we could have possibly done better for you).  

Until next time.

Love always, 
Ema



The Mighty Contributor