Thursday, March 15, 2012


12:24 a.m.
So the ER doctor determined Shelby should go to the floor.  When we questioned it, Dr. Alonso was called.  Scott spoke to her and it turns out she was relayed wrong information.  She was told that Shelby was desatting and not recovering.  That is not true.  I told the nurse that she was desatting more and more and lower when she did, but I never did say that she didn't recover.  Duh.  If she was that bad we would have brought her back in on our own; not waited for a doctor to tell us to do that.  So we feel like this admit is a total waste of time.  They are not doing anything here that we can't do at home.  We thought the PICU admit would help get quicker results on our donor tested today at Northwestern.  Nope.  We thought it would get her more points.  Nope.  Nothing's going to change.  We are pretty disgusted.  We'll most likely be traveling to St. Louis, MO this week to have her evaluated for transplant there.  They have a great program and are in a different UNOS region.  We hate the thought of not being at Children's, but the more and more this "miscommunication" happens, the less faith we have in them here.

8:35 p.m.
but we're in Chicago because Shelby's doctor wants her admitted to the PICU. I *candidly* shared our concerns to Chicago about Shelby deteriorating in not only her sats, but also her endurance to sit up and bathe/shower. I also initiated the process today of getting Shelby double-listed; that is, listed at another center in another UNOS region, therefore increasing the area that deceased donors would come from.  All that got everyone hopping at Children's.  Her doctor feels that if we go to St. Louis for an evaluation (which they wanted to see her next week for), they would admit her because of her horrible oxygen levels.  She wanted her admitted here so she can see if she can ask for yet another higher PELD for Shelby.  She also felt is was not right for us to be doing so much care for Shelby and having that stress.  We did pretty darn good keeping her at home as long as we have.  When you have a kid that needs to come be admitted to the PICU, you've had you're hands full at me.  Also, today we had our 4th person tested to be Shelby's living donor.  Maybe, just maybe, by Shelby being here that will make Northwestern speed up the test result process.  You can't do a direct admit to the PICU like you can to the floor so we are here in the ER.  We had to wait only a very short time before they put us in a consult room so we didn't have to sit out there amongst all the other sick kids.  I didn't have to ask - impressive!  Scott is over at Kohl's House unloading ALL our stuff.  Now we wait for the ER docs to look her over so she can go up to the PICU.

1 comment:

Anonymous said...

WOW at least something is being done and it will be so less stressful being at home worrying about her stats dropping. Cnnot even imagine the noise from the machine driving u crazy and upsetting the girls etc......COME ON LIVER!!!
many hugs to all the family ! PAtti