Tuesday, January 11, 2011

Is she delayed?

When the anesthesiologist came in this morning to go over the routine questions parents answer before their child is admitted for surgery he stops and pauses to ask ..is she delayed? My answer "She is doing so much better since heart surgery" must have meant to him she has issues... the next question was "is she usually calm like this?" Yes I answered without hesitation, so he asks if she is delayed again and I said..a little... He then says so she is up running around playing and talking??? The look on my face stopped him with this sorta blank stare... I then say in this uncomfortable silence, "you can tell by the chart she has Down syndrome, right?" He says yes, so "she is extremely delayed then?" NO!!!....I said "well she isn't walking or talking yet but she could be if she wanted to, she lacks confidence"...Yes, I did...LOL....it's my Emma we are evaluating here... I think we are both dog paddling around her IQ score..????..... Who cares.... WHY, can you just tell me WHY ARE YOU NEEDING THIS ANSWER.... then it came out. Will she follow commands, if I ask her to do something or a question can she understand and answer me? NO, MY KID IS SIGNIFICANTLY DELAYED....ok I said it is what went shouting through my head ... I am laughing now because as I think back on how much time we danced around this question with out the question actually being asked is now comical... I can see my reluctance to come outward with information and his not wanting to offend this parent who dotes over her Princess.. so now we get it... all is clear... well one would think .... I am known by most of the staff here on a first name basis, comments about how big she is, how is Tressa and Jordan??? they know us well, outpatient surgery..Even Dr D was there telling his not always humorous jokes.

The Inevitable QUESTIONS are here... Ma'am' who are you to this baby? What is her name? What is her date of birth?, and where was she born?...Did you ever get the Extreme home make over? I get all the answers right.. BUT it doesn't match what they have... My first name and Emma birth given name is on their records.. Emma has her Birth Mothers name and it goes on... our last admittance to this hospital was a couple weeks after being home from NICU from the other coast (different hospital ) some pretty funny notes were placed on her computer chart from our last visit... Something along the lines of this Mother is "DIFFICULT" Do you have paperwork on this baby? I give them my court orders and start to explain why I was so fearful of using this hospital weeks before the heart surgery which I was told could not be at this hospital because it wasn't equip.. OK.... so then the anesthesiologist jumps in.. How did Emma do for that surgery. I said she did well, he was thrilled and said he is very pleased to hear that because having a major surgery with a heart that had three holes and no complications means she is a strong healthy girl... YEAH.... so we proceed.

Even after a major major heart surgery it still shakes me to hand my baby over to the surgeons. She goes with a smile, her toy and babbling happy sounds. He says 30 minutes he will be out to get me... time passes 45 minutes hits and he is not out.. I am worried... he comes through the door and says she did fine for the tubes although having a time with high blood pressure... OMGosh how did I forget..how in the world did I forget... after heart surgery this was a major issue causing medications and extra days and I just felt terrible.. The other is she didn't do well..she screamed she wanted on her tummy and nothing but being on her tummy would calm her and she needed to be calm. The heart specialist with lots of resistance placed her right on her tummy on a soft pillow and she fell straight away to sleep..TODAY she wasn't having it. She was screaming so badly they sent for me before 2nd level recovery. She needs her mommy.. I hold her and she quiets so they try for another blood pressure.. she starts up again blood shooting everywhere..even the IV spot is streaming blood... One nurse grabs the location (arm) and squeezes, the other trying to wipe blood from all over me and Emma. It is not a pretty sight. They get a band aid on the IV location very tight... I am told to do whatever I need to do I can walk I can do whatever to calm her down. I act like we are leaving. She starts to calm, but I walked away from all my stuff; stroller, purse her items..I have to go back... she freaks out screaming.. I start stripping her gown off her and put her into her PJ's. The staff are looking at me. The nurse tells me some kids recover better at home, if I feel comfortable I can go home. I tell them to get me the paper we are leaving...I will sign anything.. I walk to the van put her in the car seat and she falls right to sleep. I call back into the hospital and tell them she is sleeping and they can come check her blood pressure. She is much better. We live only minutes from the hospital so I am going home with the understanding if blood starts pouring out I am to come straight back. They are calling me to check on her. The ride home she slept, she slept off and on all day, has drank about 7 OZ of a mix of formula/food. She has smiled a couple times and responded nicely to her siblings returning home from school... She is doing very well....she just needed to be home... When I lower her into her baby bed she isn't having any part of that...she wants to feel warm skin today.. I can tell you all, I have had many many many children in many outpatient surgeries and I can say...you are all right! I have me a RED HEAD!