Ella’s Magical Jukebox

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In golf, a hole in one didn’t “really” happen unless there’s a witness that can attest to its occurrence.  Well, I have a witness in Han that this story really did happen exactly the way I’m describing it here…

11/13/2013

Carmen and I were lying in bed one night.  I was massaging her feet and legs as I did every night for the past many weeks, when Ella gingerly walks in to our room singing.  For those that don’t know Ella, she is pretty eccentric even at this early age.  She is excellent at doing jig saw puzzles, is very meticulous and detail oriented, and very anal about many things.  Her OCD is developing nicely and probably at the same pace as her mom’s OCD when she was Ella’s age (I digress).  She also has this thing about singing and having songs playing in her head.  She is always singing or humming something.  Carmen and I joke saying Ella has a jukebox in her head.  On that particular night, Ella walks in singing a song that she made up.  It had 2 lines that she kept repeating.  The song was “Mami’s gonna feel better in 10 days.  Mami’s gonna heal”.  I usually don’t pay attention to her songs because many times it’s just humming or some other unintelligible words that obviously make sense in her head.  This one however, immediately caught my attention.  Maybe because of its specificity, or maybe the words came out very clearly.  Either way, I lay there thinking to myself, “no, it can’t be…Could God really be talking through my children?”  But, I said, why not.  So I marked that day, 11/13 Wednesday, and added 10 days to it.  11/23 would be the day that Ella’s song predicted Mami would feel better.

I began to wonder about this.  Was she gradually going to get better?  Or would it be a step up improvement?  To contain myself, I kept a very light touch on it.  Did I really believe her song?  A very small percentage of me was hoping to believe, if that makes any sense.  So no, I probably didn’t, but I left it in the back of my mind, just in case.  The next day, Thursday was no better.  Friday was slightly worse than Thursday.  Saturday was an awful day.  We got official bad news about her condition, which by definition made things “official”.  Our families came over as they consoled us.  Sunday was no different.  This part of the story now begins to overlap with the ER-Round 3 post. Sunday night is when Rosana sleeps over and Carmen has the seizure early the next morning rushing her to the ER for the 3rd time.  By this point, way deep in the back of my mind I thought to myself, how in the world is she going to feel better by 11/23?

Day 7 of Ella’s countdown looked bleak.  She wasn’t able to relieve her constipation and was in much pain and discomfort.  That night I had a conversation with Han.  I thought to myself, why not, I’ll tell him the story of Ella’s song.  I’ll amuse myself.  So I told him. Upon hearing my story, I think he believed it immediately, well at least more than me.  So we sat and hoped for the best for Carmen.

It was that same day or the next that he began to tell me something about a date mistake/typo I made on a mass email I had sent out, and that the date was for that coming Friday, 11/22/13.  I couldn’t recall sending out any emails lately, so we were both scratching our heads.  I then realized he was referring to the prior email updates I had put up in the blog.  I had put 3 of them and dated all of them. The 3rd one had a wrong date.  Instead of 11/22/12, I mistakenly put 11/22/13.  Only the meticulous, detail oriented and nitpicky Han would’ve been able to pick that one out.  I believe there was a reason I told him of Ella’s song, because in the 3rd email that had the wrong date, I mention Ella having her 4th birthday which happens to fall on 10/10.  The date (typo) of the email was to be 2 days away from my conversation with Han, which happened to be the date of the crucial surgery that would finally give Carmen the much needed relief.  The impression I got when I re-read that email was “Ella” and the number “10”, which made me think back to Ella’s song where she mentions 10 days.  I felt it was reaffirmation of Ella’s song.

Han had no doubt that by day 10 Carmen would feel better no matter how the colonoscopy would turn out (it failed).  So on day 9 (11/22/13), Carmen had her surgery.  After the surgery she was in lots of pain, but the majority of that pain was from surgery and not the constant pressure that had been building in her bowels.  By that evening, she was up on her bed, eating and chatting away with her friends that had visited.  The next day, Day 10, she was feeling much better!

So now I hold a sliver of hope that the 2nd line of her song will also come true.  I figured, if the first line, as improbable as it seemed from day 1 to day 9 (with each day getting progressively worse than the prior day) came true, why not the 2nd line?

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ER – Round 3

ER – Round 3

Following the 2nd ER trip we decided it was time to take another cat scan to see if there were any tumors in her hips that could be remedied with radiation.  She had been complaining about pain in her hips for a while now and that pain was just getting worse.  The result of the scan was negative for bony tumor (which was a good sign because it wasn’t in her bones), but it did show lots of tumor growth in her belly cavity.  Wasn’t really a surprise since she hasn’t been on any type of treatment for about 6 weeks.

The week prior to the 3rd ER trip was excruciating.  Carmen and I had very difficult talks as her prognosis per the scan was very bleak.  In short, she didn’t have much time.  It’s very painful for me to even right this much, so I’ll leave it at that.

Her only time out of bed was to go to the bathroom.  Half of those trips were to throw up anything and everything.  Sometimes the vomiting episodes were so intense, that a sip of water would trigger it.  To say it was unbearable to watch doesn’t do any justice.  Once again, I won’t go into detail as I don’t feel like reliving it, even in small glimpses.

11/16/13

Carmen asks me to ask her sister Rosana to sleep over on Sunday.  Rosana was supposed to come over on Monday to tend to Carmen and Audrey, but for some reason she asked her to spend the night.  So Sunday night everything is “normal” at home.  The kids are in bed and we all go to sleep.  Since Carmen is hooked up to the TPN bag, she has to go to the bathroom many times during the night.  Each time, she gets up and sits at the side of the bed and rests her head on my chest as she leans over.  Every part of her body is hurting.  At 5am she is sitting at the side of the bed resting as she prepares to lie down.  She usually holds on to the IV lines to prevent them from tangling and pulling, so this time was no different.  I was sitting right next to her when all of a sudden she pulls the lines backwards.  I figured she wanted to untangle the line, so I make sure all the blankets were pulled back from the lines.  However, she didn’t stop pulling back.  I asked her what she was doing, but her face didn’t respond to me and she kept on pulling back.  Then her whole body began to seize.  Within a few seconds I realized she was having a seizure.  I had never experienced this before and certainly wasn’t expecting it.  The terror and simultaneous despair cannot be described so I won’t even try.  I began screaming Rosana’s name.  Poor girl, her terror must have been far worse than mine because she was sleeping.  At least I was fully awake when it happened.  She came running up and probably had the same look on her face that I did.  I had yelled her name about 5 times, each time louder and louder.  The most amazing thing in all of this so far was that none of my girls woke up!  Or if they did, but were too scared to come out of their rooms.  Audrey however, didn’t wake up for sure.

I yell to Rosana to call 911.  As we were on the phone with the dispatcher, Carmen began to calm down.  The entire episode lasted about 2 minutes.  When it finally stopped, she had a wide gaze about her.  My face must’ve looked like I had seen actual zombies gnawing at my feet.  Carmen calmly looks at me and with a sincere bewilderment asks “what?”  I was just happy to have her back.

So off we went to the ER.  These trips to the ER were getting old.  I was certainly getting tired so I can’t imagine how Carmen is feeling or dealing with all of this trauma.  I must say she is so strong mentally and physically to endure all this and still have the wits about her that she has.  Truly remarkable.

Tests were conducted to see why she seized.  They did a brain CT to rule out any tumors, lesions, or hemorrhaging that might have caused it.  Then they ran blood tests to check for imbalances in electrolytes and other levels that might have caused it.  The brain ct results came back and it was negative.  Thank God.  Brain was clean.  The blood test results showed a severely low sodium level.  Normally this alone at that level wouldn’t have caused a normal healthy person to seize, but in Carmen’s weakened state, it triggered the seizure.  The blood work also showed her kidneys were at 15% function, meaning they were on the verge of failing.  I’m not sure if kidneys can come back to normal function once they failed.  So at Brian’s recommendation, we saw a kidney specialist, Dr. Tsang.  He had another cat scan ordered of her abdomen to see why her kidneys were swelling and to see if there’s anything we could do about it.  The scan showed that the ureter was dilated, which means they were being pressed from the outside thereby, decreasing the flow from the kidney to the bladder.  This was on both kidneys causing both to swell and struggle.  The recommendation was to put in stents in both ureters to open up the passageway.  This involved no cutting and would take less than 30 minutes.  Sounded like a no-brainer.

On Tuesday the procedure for the stents was scheduled.  Within a day after the stents were put in, her kidney function improved dramatically.  In just 2 days, they were back to normal!  So on to the next hurdle which was severe constipation.  We had to deal with this before we left the hospital so after giving her a few hours to recover from the kidney procedure we loaded her up with all kinds of laxatives, stool softeners, and stimulants to get her bowels moving again.  After much effort, nothing moved.  At this point we were silently fearing the worst, a blockage.  So on Thursday we decided to find out how bad it was by doing a colonoscopy.  We were all hoping it was a stool blockage, but instead it turned out to be a full blockage of her colons.  By this time all the stool from the prior 2 weeks were stuck in her bowels unable to pass through causing her immeasurable discomfort and pain.  To a point that nothing was able to relieve it.  Her belly was severely distended due excess gas, fluids, and solids.  There was only one option left, which with her condition was very risky.  We didn’t have a choice.  Do the procedure or count down to the final days. No matter how high the risk was, the risk of not doing anything was 100%.  So once again, a no-brainer decision was made to bypass the colon.  This surgery had to succeed because its failure would’ve meant disaster for Carmen.  Amazingly as we sat there on Thursday night distraught with our heads spinning, wondering when she could do this surgery, the surgeon comes to our room (Dr. Solomon) and gives us the option.  I deferred to Carmen and told her it was her choice.  She had been through so much, that it wasn’t fair that I make this decision for her.  So I left it 100% up to her to decide.  Thankfully she agreed.  Oh, the amazing part was that the surgery could take place the next day, Friday morning.  I honestly don’t think she would’ve made it past the weekend had she not had this surgery.

As one can imagine, Thursday night was extremely long and painful for her.  Thankfully the surgery was scheduled for the morning. I asked the doctor to be extremely aggressive, because like I said, failure meant one thing, and one thing only.  So there was no higher risk in my opinion.  The doctor said he’d try his best, but if he thought it would do her more harm than good, he would pull out and abort the surgery.  That meant that I better not see him 15-20 minutes after the surgery begins.  So as we waited in the waiting room, the 30-45 minute mark passes, which to me was an excellent sign that he was proceeding with the surgery.  But then, an hour passed, then 75 min, then 90, until after 2 hours the nurse comes out to give us news.  She says a few words that I completely ignore because they weren’t the words I was waiting for.  Then finally in the midst of all the jumbled up words coming out of her mouth, I hear the word “success”.  That’s all I needed to hear.  My heart was now able to rest.  This immediate storm had passed. After 5 grueling days in the hospital, there was some light at the end of the tunnel.  We could breathe once again at least for a few hours or days, until the next hurdle.  There was no time to celebrate, but we did give ourselves a few days to unwind. The big elephant was still in the room and we needed to find a way to slow or better yet, stop it.

The next few days were set aside for recovery and pain management.  We finally got discharged on Wednesday after 10 days.  I was there for so long, that I had to go back to work.  So in the mornings, I would take a shower in the hospital room, change into my regular clothes, and with laptop bag swung over my shoulder, I went to work saying by to the nurses.  It almost felt like I was in a business trip going to and from the hotel room.

Carmen went through so much during these past few weeks.  It truly amazes me how strong and resilient she is.  Her mental will is as tough as anyone I know.

Though it seems like we’re losing at times, the battle continues.