Sunday, January 1, 2012

New Years Day Updates

Sorry we are so behind on updates here.  Alot has happened over these last few days and Bob and I have had to process it all.
When we got to the ER monday, Eli was started choking at the triage desk.  I asked for suction and they couldn't find it.  So they decided to have a CNA rush us back to a room.  3 steps down the hall is when the bleeding started.  She took us to the room and stood there frozen.  I kept yelling at her to get me suction and a doctor.  At this point Eli was choking and changing colors and blood was pouring out of his nose, mouth, and stomach.  Bob and I had 1 blanket and a bulb syringe.  A RN heard me yelling for help and came running in, while the CNA still stood frozen.  They grabbed everything up and ran us down to the Trauma rooms.  So this was issue Number 1.
Then I kept telling them they had to get D10 running because Eli wouldn't maintain his sugars for very long on his own, especially when he's sick.  Doc put in orders.  We were transferred from the ER upstairs to his room.  I kept pushing for D10 and sugar checks.  Eli started getting really shaky.  I again demanded D10 and a sugar check.  The care assistant said he'd never done a sugar check and stuck Eli with the big heel stick razors.  Eli's sugar was 56.  Finally the nurse brought D10 but it was to late.  2 minutes later Eli had a grand mal seizure.  Bob yelled into the hall for help and a nurse walking by stood in the hall watching and said holy cow he's lifting off the bed.  She didn't come help and ran to get a doc.  The floor nurses kept saying we aren't a diabetic floor we don't know what to do.  Eli was given no meds to raise his sugar.  He laid there after the seizure shaking uncontrollably.  Issue Number 2.
So then we had to get all of his orders fixed.  It was a mess.  His meds were all wrong, his feeds and fluids were jacked.  The nurses had no idea what they were doing because it wasn't a neuro floor or a diabetic floor.  (dumb asses it's a children's hospital you should know what you are doing.)
The residents kept screwing up his orders and his labs.  When we had the CT the resident originally told me that he had some pneumonia in the right lung.  Then when we got transferred to PICU we were shown the CT and talked to about it and both of Eli's lungs were full of pneumonia and there was collapse in both lungs, and the right lung had significant collapsing.
Also orders were placed for Eli to be getting his cough assist Q4, IPPB Q6, and his hypertonic saline Q8.  Apparently these weren't all getting done.  The RT was coming in during the night and if he was sleeping she was chosing not to do it.  We ended up in the PICU because of this.  He was getting so sick and so they weren't sure what was going on and decided he needed PICU.  We got down there and they wanted to simply follow the orders for a few and see how he did.  He immediately started improving.  So he simply needed the floor orders followed, and didn't need any additional supports.
When it was time to go back out to the floor I refused the same floor we had been on.  So we were sent to a new floor.  As soon we got here the charge nurse called the floor supervisor complaining that they couldn't deal with this many complex kids.  I was like WOW really.  So then get settled and basically closed ourselves in our room.
Then we lost Eli's midline. The line they swore would last 2 weeks didn't even make it 2 full days.  Not only did we lose it but Eli had streaking all the way up his leg and a large red hard spot on his groin.  They were unsure if it was a clot or infection.  Finally got that all fixed.
Then they couldn't draw lovenox levels.  They  had trouble drawing so the nurse just gave up.  So we were on lovenox for days with no levels drawn.  We were struggling to get any blood out of him at all and couldn't even get finger sticks.  So they DC'd the lovenox finally.
Then Eli kept swelling and having weird pee issues and nobody could figure out why.  Yesterday the nurse and  I were trying to trouble shoot it.  Come to find out they had screwed up his formula orders.  They were mixing all of his formula with 28oz of pedialyte instead of water.  Nobody knows why this was happening.  But pedialyte and Eli don't mix.  Mind you I had told them exactly what he needs for formula as well as written it all down for them 16 times by this point.  Then as we were going thru the computer and every single order we found another MAJOR issue.  They had been giving Eli the wrong medication.  He is supposed to have 1/8 tsp of salt mixed into his days worth of formula.  The resident was confused an ordered sodium chloride in a 20 ml syringe.  They were giving him the whole thing.  So he was getting like 10 times the sodium his little body needs.  That kicked everyone into high gear.  He had to have multiple sticks and alot of labs all run stat.  His sodium levels weren't to the danger high but well on there was and WAY higher than when we got to the hospital.
By this point I was ready to explode.  The attending were here, the hospital supervisor, charge nurses, everyone.  There was a long talk over all of the mistakes that have happened since we arrived here.  They admitted that they had messed up ALOT and that they had in fact made Eli sicker with some of the mistakes. I told them I didn't trust a single person here and that I was so scared that they were going to kill my child.
We spent hrs going thru every single med, formula, treatment, etc.  Now the nurses are required to let me look at every med label, every formula bottle, every order in the computer, all of his MARS, etc.   The residents are no longer able to change any orders and everything has to go thru me and the attending.
It's very scary.  At the time we didn't know all these things were happening.  It was alot of new meds and treatments and we didn't understand all of it and didn't realize that it wasn't all being done.

So currently Eli is improving, slowly.  I'm spending every waking second monitoring him and all of the nurses and RT's and such.  They docs are being incredibly cautious.  I have been apologized to so many times I'm just going to scream if 1 more person says I'm sorry.  I don't want an I'm sorry I want them to fix it.

Eli is awake more.  He's still not able to sit up on his own but has been able to prop up in a tumbleform chair a few times.  They have brought him a table to put in bed with him so that he can watch his Ipad and some of his Signing Times movies.  He's still requiring O2 and we know immediately if he pulls his nasal canulas because he immediately drops his sats to the high 70's and low 80's.  He's now getting IPPB and hypertonic saline every 6 hrs and these really seem to help him.  We are on J feeds and he's tolerating them really well so far.  The antibiotics are really starting to cause some issues but we are hoping to be able to keep up with that without having to get another line placed.  They are holding all salts while his sodium levels try and resituate by themselves.

Bob and I are exhausted.  All of the things that we have found out over the last 24 to 48 hrs have really caused us alot of concern and we needed time to absorb it all and sort it all out and to figure out where to go from there.  Tomorrow we will be meeting with a special patient advocate team to file formal complaints and investigations into all of it.  The doctors have already filed all of that on their end, but now we have to on our end as well.

I promise to keep up better with udpates at this point!  Thank you!!


Jan said...

All I can say is WOW! Where can you go if you can't trust the hospitals and doctors that you put your child in. I know we have had some issues as well, with my granddaughter but nothing like this. You have to be on your guard at all times.hopefully, henisnon the upswing now and will be home soon. May Jesus give you peace and strength.

gfcfmomofmany said...

I am SUPER GLAD that you are a loud, knowledgable, persistent mom and dad! You saved your child's life! I am SO GLAD you are filing formal complaints! I know you are exhausted and tired. Keep trading out and keep the eagle eyed watch going! Prayers are going out to your whole family.
God bless
Heather Laurie
Mito Families!

Robin said...

Wow, Heather! Seriously.. WOW! A friend of mine has a daughter with Merff. They live here in KC. The stories she's told me about Children's Mercy and mistakes they have made have completely astonished me. And now, reading you blog post about your experiences with Eli, I am almost speechless. (Almost. It takes a lot to make me completely speechless.)

It's bad enough that you and your family are going through such a difficult time with Eli being so sick. The last thing you and your husband need is to deal with incompetent doctors and nurses.

Prior to getting sick, I was an ER nurse. It has always amazed me when a nurse says they don't know how to do such and such because that's not the floor they work on. Okay, I understand if a nurse working in labor and delivery says they can't handle a car accident victim. But seriously! A nurse taking care of sick children should know how to handle diabetes or whatever else is thrown their way. My chin hit the floor when I read about what was happening with the nurses. Sadly enough, I wasn't near as surprised to hear the story about the resident ordering the wrong medication. The standard for medical students and residents have been set so low now a days. It's just ridiculous.

Once again, I am so sorry you're having to deal with this. From one mitovian in KC to the mother of another, I'm here for you. I would love to meet you and Eli sometime.

Anonymous said...

WOW!!!! I had to pick my jaw up off the floor as I'm reading all the things that the "professionals" did wrong at the expense of poor Eli while you and Bob had to watch. That's really sad if you have to verify that they are caring for your child correctly. That is their job and what they are trained for, I thought anyhow. As if you don't have enough on your plate, let alone watching that Eli is properly cared for. I sure hope you get that greivance filed and they get their asses in deep trouble. I'm sorry alone goes so far. They made huge mistakes that would of been at the expense of poor Eli. That is absolutely uncalled for and unbelievable.

Please know, Eli is constantly on my mind and I'm continually praying for him as well as you and Bob.

Keep fighting Tiny Man!
~Linda Loney

Christy said...

Heather, this past summer my Amy went through something similar, it was a long road to recovery - I just wanted you to know many of us have empathy for all you and your Eli are going through. And prayers really pulled our child through - tons of prayers for all of you. Love, Christy - mom to Amy

Shelly said...

You have been through so much and after reading this to my husband, he wanted me to tell you how amazing and strong you both are as parents. Continued thoughts and prayers for your family.

amj523 said...

Is all of this happening because of the holidays with the better staff on vacation or is it just a miracle that you haven't had such a catastrophe every time you've had to take him to this hospital? I am so angry I'm shaking, and I'm barely connected to the situation.

Hugs, love, prayers to you, Heather and Bob and Eli!

Sharon said...

Wow!!! What a mess!! It is a good thing that you are very well informed as to what Eli's needs are as well as his regular meds and diet.

I would certainly file a grievance!

Prayers for Eli and all of you!

rhonda said...

omg i would have freaked!!! i would have screamed and yelled and god knows what else. i can't believe a children's hospital would do this. are you at children's mercy? we took liam to wesley in wichita....totally great place.

how scary for all of you. i continue to pray for all of you.