After the Surgery Thoughts

Hi Everyone!  I wanted to thank everyone for all of the love & support you've shown our family!  Without all of the prayers, well wishes, cards and notes, the day would have been a lot harder to endure.  I wanted to give you all a recount of the day & to let you know about our experience.  For being a long time Kaiser member, I was SHOCKED at the 48 hours we had to deal with.  This was definitely not our first visit or surgery, but if it was, we would never, ever go back.  This is probably the most heavy post yet, so I apologize if it takes up way more time than you anticipated!  

Here is what I thought  was going to happen:

Check in Thursday afternoon after Mailyna gets out of school, get her transfusion, surgery first thing in the morning, home by 5 on Friday (surgery, recovery, traffic etc.)

Now here is what REALLY happened:

Call Wednesday night to confirm what time we should come in, was told to call back Thursday morning & speak with Betty, the Charge Nurse for Thursday.  Call in 9am Thursday & speak with Betty, she said to call back around 3pm to confirm, but we would most likely need to come in around 7.

On my way home from work at 530, I get a call from someone in the Surgery Scheduling Dept & they wanted to know why I hadn't called in to confirm we were being admitted, telling me to come in at 1pm Friday.  Umm, WHAT?!  I spoke with a few different people after that & let them know that we were expected to be admitted in a few hours & that Peds already had a bed waiting.  She got a little flustered & said she would call me back.

I then called the Peds floor again to see if things had changed & started asking a lot of questions.  What time is her actual surgery?  What time are we supposed to be there?  Why does admitting have us down for Friday? WTF is going on?!  I spoke with a nurse that picked up who couldn't give me a single answer & sighed at me in irritation at my many questions.  She passed me along to Betty, who was as rude, condescending & ridiculously unhelpful as I've ever experienced.  I attempted to see why our surgery was scheduled so late in the day & while I understand that younger children take priority because they cant go as long without food, the way she phrased it was unimaginable.  For normal surgery, you aren't able to eat AFTER midnight for something scheduled 1st thing in the morning.  If my daughters surgery isn't until 3pm, what is the latest time she can eat?

Betty:  "She cant eat after 12am.  That's our policy & we do it all the time.  We know what we're doing."

I had so many questions & I could tell she was irritated that I would just take her BS answer & leave her alone.  What was the point of us going in the night before?  Because Mailyna needed her transfusion before the surgery. That I get.

Mia:  "Can anything be done so that we just come in 1st thing in the morning to get her transfusion done & then have her surgery done at the scheduled 3pm time?"

Betty:  "Your doctor said you need to come in, that's what you need to do.  We cant change anything for you."

So we said screw it & headed to the hospital at 730.  At admitting, the lady STILL had no idea why I was there & said I wasn't supposed to be there until 1pm Friday.  I told her to call Peds.  Finally we were brought upstairs & taken to 3 different rooms, all of which were full.  I ended up speaking w/ Melinda, who was more than  helpful & did everything she could to try to figure out the huge disconnect.  They said that the couldn't give me a definite time for her surgery the next day, but said it may be closer to lunch time than the morning.  She was also a lot more reassuring when explaining that they would do what they could to get her squeezed in & even called the surgeon up to speak with me.  Mailyna's dad was coming from San Jose with Mims sister & didnt know what time to come.  Mims pop works graveyard & prob wouldnt get any rest.  My parents were supposed to come by because they had Jassy & wanted to be there before she went in.  Fricken mess.

Enjoying all of her cards!

After grabbing some food, we finally situated in the room.  I felt like that was the perfect time to surprise her with all of the thoughtful cards our family & friends sent over!  An hour later, after Mailyna & I were hanging out, someone finally came in to take vitals right before midnight.  Our nurse Mylene, took us over to get Mims IV started in the treatment room about 12:15.  There, the other lady (I didn't get her name) set her up to get the IV in.  Now I will admit that Mailyna is no walk in the park when it comes to peripheral sticks.  She was anxious & kept pulling her arm whenever she got near or touched her arm.  The lovely way she choose to sooth my child?

"If you don't calm down, I'm going to send your mommy away"

Wow... That didn't calm Mailyna down & I was ready to shove that needle in her neck for talking to my distraught child.  They finally accessed her & we were back in the room at 12:50am.  That's about the time Mims got back to her last blog & we were down for the count by 130.  Sometime throughout the night, someone came in to wake me up to sign some consent forms for the blood & I fell back asleep hoping things would be better when I woke up.  Wishful thinking.

Making faces while she took her meds

We were waken up at 630 for Mailyna to take her meds & she was less than thrilled to wake up.  Luckily, her dad & sister Malia had shown up, so she was not as  upset at the thought of staying awake.  Shortly after she finished her medicine, our nurse Mylene came in & explained that there had been a problem at the blood bank & Mailyna still had not received her blood.  You can only imagine what happened next.  Anger, frustration and disbelief mixed in with hunger & lack of sleep turned me once again into the mama bear from hell.  Mylene reassured me that they would still be done on time in case Dr Chong could fit her in.  The blood started around 715am... which totally negated us coming in the night before.

Our second nurse Katie was amazing at helping distract Mailyna.  She came up with a game & drew out boxes in increments that corresponded with 30 min tv shows.  Basically how many shows she would watch before her scheduled surgery time.  12 boxes.  That's right, 6 hours.  I was also able to have a conversation with me regarding the situation we were dealing with & attempted to sympathize with me.  In fact, she also confirmed who I spoke with the night before & that it wasn't the first time that the lovely manager of the Peds unit, Betty, was a total bitch.  From what I gather, she is a "seasoned nurse" who is set in her ways & is used to telling people something & having them follow her lead mindlessly.  But that's just MY opinion.  Katie was great & I commend her for taking that time with a crazy mom.

Her sad little face right before she went into surgery

Time passed & she started expressing hunger around 10am & I started to get more irritated by the minute.  Luckily she fell asleep & wasn't constantly thinking of food.  Right before noon, our 2nd nurse had come in & told us that the OR called up & would be taking her down right then for surgery.  As we were trying to get into the elevator to go down to the OR & the attendant that was bringing her down & the other 2 people let it close without us in there... so basically they took my anxious child without us.  Luckily one of the doctors we are familiar with saw it happen & took us down immediately because surprise surprise, we didn't have access to the floor.  Seriously.  We left her side around 1230-1245pm & went to wait in the cafeteria.  After a quick bite, I sat in the lobby & found the rest of my family.  By 141pm, I received the call that she was out & to meet them in recovery.

I want to say that the surgery time itself was quick & before I knew it, I got the call to meet them in recovery.  It took her some time to wake up & she was completely freaked out.  The anxiety of coming out of anesthesia was horrible.  The nurse, as sweet as she was, didn't recognize that Mailyna was more distraught than in pain, and gave her two doses of morphine within 3 minutes.  Luckily another doctor wandering the area came over & realized that the cry she had wasn't so much pain, but more anxiety.  We've encountered that before, where Mailyna (and kids in general) come out of anesthesia & are inconsolable & just cry uncontrollably.  Thank God for this guy, within minutes, she was calmed down & falling asleep.

After surgery, trying to come out of anesthesia

We were taken back up to Peds 240 & brought back to the room (which I honestly dreaded, I even asked if we had to go back up at all, or if we could just be discharged from the recovery room).  Back at the room, they didn't have the bed ready & we had to wait a few minutes to get her back & situated. While we were standing at the front door, with all of our family, Mims was nauseous from moving around & ended up throwing up the water.  While I was tending to her, what I didn't see was two women who worked there sitting nearby, basically talking about all of us.  Motioning towards us, rolling their eyes & having a private conversation about our family.  It wasn't brought to my attention until after I was finished settling Mailyna into the room & getting her comfortable.  After a few hours of letting Mailyna get settled, we were able to leave a little before 5pm.  The discharge was quick & we blew that popsicle stand as quick as we could.

2 pushes of morphine later

The whole situation that we endured was ridiculous.  There was a complete lack of communication from almost everyone that worked there.  As a long time patient, previous employee & parent, I'm appalled at lack of bedside manner, communication, compassion & professionalism that Kaiser has provided.  I'm not a parent that will just take what someone says & mindlessly follow.  I do my research, ask questions & follow up to make sure that everything we are doing is efficient and in the best interest of my child.  Our family has been with the Kaiser Hem/Onc since before she was even born, and I absolutely adore them.  If this was my very first encounter, I would've run for the hills.  

Fentons for the win!

I plan on filing a formal complaint for the situation.  I believe the quality of care we received was far beyond poor.  For a pediatric environment, it was horrid.  I felt as though my daughters needs were not met & were not taken into consideration without my persistence.  We seemed to be an inconvenience to a few people & that definitively needs to be addressed.  My choice to share this experience for basically the world to see, is in hopes that other parents will push back when they feel they are being slighted & have the courage to stand up for themselves & be that advocate that their children need.  Unfortunately my relationship & need for hospital care will not end here, but I do have high hopes that this will be the last time we have an experience THIS BAD.  The thing that irritates me more, I feel like they were making more about us being stuffed into a 3 bed room in the middle, than all of the other little factors.  Like we were entitled princesses that wasn't getting their way.  Seriously.

On a brighter note, after leaving the hospital, we strolled over to Fentons to treat ourselves to some deliciousness!  It completely brightened her day!  A huge thank you to my family for standing by, supporting & praying for us!

Please feel free to share, re-post, re-tweet to make people aware!

One tired mama,  Mia

Here at the hospital

Mailyna the night before: Right know I'm at the hospital getting ready for my transfution and my surgery. Before we got settled my mom had to yell at the nurses. She had to yell at them because they weren't giving me a good room. After that everybody had to wate in the family room. After that my mom went into the room to talk to the nurses. Then, after that all of us went to get some food at Church's Chicken. 12:10am Just now I got poked on my wrist. It really hurts whenever someone touches it. While they where looking for a vain on my arm,I was moving around and trying to get away from them! My mom was trying to keep me from moving around and keeping me from kicking or anything else. When they poke you ther isn't any needle inside of the tube. I had all kinds of tears all over the place. After they poked me I cryed a lot. After that I realized that my nurse wasn't that nice! I'm sad and mad. I'm sad because my wrist hurts. My wrist hurts because the tube is in my skin. Also I'm mad because the nurses were mean! They were mean because I wasn't listening to theme. I wasn't listening because I was sad and nervouse.

Less than Normal

Long time no blog!  Its been pretty hectic lately in our lives.  I've been busy with the girls & family time ... really trying to make the most out of the time that we're all home & together.  It just hit me this morning that Mailyna's surgery is only a few hours away...  What makes me feel horrible is that I'm not panicking out of control like I did the first time.  It makes me feel like I'm a bad parent for not constantly dwelling on her condition & all of the factors surrounding it.  A part of me is in denial until they wheel her away... the other part of me is so "matter of fact" because I know its what we have to do & there is no way around it.  I know tomorrow, I'll probably be a hot mess once she goes in.  But anytime Mailyna looks into my eyes, all she needs to see is trust & strength to know that I'm there & that I have complete faith that shes safe in the doctors hands.

I've had a few people get super panicked & filled w/ concern when I tell them, and I completely understand the reaction.  That's the normal reaction.  They aren't living our life.  They don't know the back story, or the complications we've faced... so its hard to relate.  If anything, all Mailyna needs is a little comfort.

The other day, I asked if anyone wanted to send over a little card for Mims, to give her some encouragement.  Its pretty amazing, at any age, to have someone wish you well & brighten your day when you're feeling scared or helpless.  Our lives are so hectic & complicated, and slowing down is the last thing you want to do... but finding that time & the goodness in someone elses heart when they take that time to sit down & literally make a child smile, that is something that makes my heart soar.  It seriously brings me to tears when her sad little face lights up from the love & support our family & friends provide.

I originally wanted to have her blog tonight after we get to the hospital, but I might do something a little bit different.  It depends on how she's feeling, how my internet connection is & how much power I have with my laptop.  Either way, you can expect to hear from us later today.  Thank you again to everyone in our lives.  Without your support, days like tomorrow would be a lot harder to face.

xo, Mia