Sunday, August 5, 2012

"there's no place like home.. there's no place like home.."

Well we have all stayed in an uncomfortable bed at a motel that we didn't exactly see our selves staying at. That first night you are back home you get that "Ahhhh,.. my bed!!" feeling, right?
That hasn't even compared to the experience Kory, myself, Maddie, Mamma Jan, and Emma have went on this week. Not to mention all the family and friends who were clenching onto their cell phones and laptops waiting for some kind of an update from us down in St Louis.

(Everyone has their right to express there opinions about their experiences.)
I'm sure you have heard of what a FANTASTIC hospital St Louis Children's Hospital is,... WELL!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! From a hospitality view on the resources they provide and the family setting you see all through the hospital is great! Unfortunately, who cares if you are in a run down long as its the best possible care for your child! It would take far more than a miracle for me to recommend anyone take your child there. Emma would be dead if she were still there! There is absolutely NO DOUBT ABOUT THAT! Their P.I.C.U. is HORRIBLE!

When we first arrived we stated that Emma is not your typical child and that we needed to take that and her previous medical history into consideration. After we said that, the anesthesiologist said "we see this all the time and we deal with situations much worse than her everyday!" (< said in a very arrogant tone) ...................... They went on took her back to surgery... The same anesthesiologist came out with his head tucked and said, "So, everything went fine. It did take five attempts to intabate. I will say she is the hardest intubation I have ever done in my life and I do thousands of intubations a week." ....... We then said, "Well, we warned you."

Our next hurdle, .. We told them that she always needs bi pap (piggy nose) to help her after being extabated. Another physician told us, " We do this all the time, we know what we are doing, just relax!" That was when we were fed up with there arrogance and it was Tuesday afternoon!!!!!!!!!!!!!!!!!!!!! We then suggested they take us to the PICU where she will be closely monitored and we will have help quickly! Instead they completely ignored our wishes and sent us to a surgery recovery floor where she was with kids that just had their tonsils removed or screws/pins put in, etc. Every nurse that came in there asked why she wasn't in the PICU.... (HELLLLLLLLLLLLOOOO!!!!!)

Guess what~! Not two hours on the surgery recovery unit and she was rushed to the PICU because she was having trouble breathing. They increased her oxygen to 2.0 liters and she made it through the night fine with the increased dose of oxygen. The next day (Wednesday) she was doing much better. Still on the 2.0 liters though. She is usually only on 1.0 liter of oxygen at home.

Thursday had came and we had no idea how she was going to do going in for another surgery so close. We continually pushed the idea of assisting her as much as possible when she came out. We didn't want her left intubated because we knew she would become very dependent on the assistance. The physicians COMPLETELY IGNORED US ! They told us that they are the specialists that deal with children much more complex then her every day! Asked us if we had any medical background? We said, "yes, we are Emma's specialists!" They took her back for surgery ignoring everything we said and then they called us and told us that they would be taking her up to the PICU and that we could meet her up there! Of course, we got up there and found out that they had left her intubated because they discovered that they probably should have not done the surgeries so close together like that because her airway was very stressed and swollen from so many intubation attempts in two and half days. (Once again, we warned them that this would happen and they ignored us because they are the specialists!)

We told them to monitor her calcium levels because they would drop very quickly! They again didn't listen to us and her calcium dropped from 8.7 to 6.5 in about 35 hours! 6.5 is critical!! Again they are the specialists and they know exactly what they are doing.. they are right we are wrong. (So they tried to convince themselves.)

After all of this you can see why we demanded to be transported.. they denied us transport. and then proceeded to do things that would make us not be able to transport.. for example, instead of going to the BiPap like we told them she does well with in the past they went and put her on HeliOx because they cannot transport patients on HeliOx and within thirty minutes of that ... she was having to be reintubated!!!! 

Our daughter is on a ventilator because of the physicians at St Louis Children's Hospital! They nearly killed our daughter!!!!!!!!!!!!!!!!!!!!!! St Johns PICU has her on the road to recovery but its horrible that they are having to clean up a mess that someone else made. And they know we are relying on them to fix another persons mistake. This is horrible for Emma. She is such a fighter and we thank God that he has given her and us the strength and put the right nurses and doctors (FROM STJ PICU) in our lives so that we had the connections we needed to get her to a safe place.

The main thing is that we are back home at our PICU and she will never be an inpatient at Children's Hospital in St Louis ever AGAIN! And we are still looking into what can be done so that another family doesn't have to go through what we went to. They lied to us about contacting our specialist here and they lied to St Johns PICU when they gave transfer report they said they had been doing everything that Dr Green wanted done with her calcium levels and they hadn't talked to her since Tuesday and we were not transported until Saturday morning! When we got here Dr Green said they called her once Tuesday and that was the only time she was contacted until the St Johns PICU paged her!

Thanks for all the prayers and support! You are all amazing people! Thank you for keeping our family in your prayers~ Emma is a miracle baby and she wouldnt be here without your prayers! Our God is an awesome God and we need to praise him for the miracles he is performing through Emma.

We love you sweet baby ! We should be holding you in our arms soon! I cant wait to see you awake and hopefully you will be beat boxing before we know it! Auntie Penny will be waiting to see those prety eyes tomorrow along with Mommy, Daddy, and your entire TEAM. LOVE YOU SOOOOOO MUCH EMMA LOUISE! :)

PICU: Pediatric Intensive Care Unit
STJ: St John's
STL: St Louis

1 comment:

  1. So very sorry for everything you have had to go through, you all will continue to be in our prayers, Jon and Candy Ackman


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