Thursday, January 7, 2010

Cardiology Appointment

Yesterday Hope had another cardiology appointment and I can tell you it was one of the hardest.  We were there for over four hours because Dr. Prieto was so backed up in her appointments.  We started the day with weight and measurements.  She always does pretty good with these and has been gaining and her pulse ox and blood pressure is good.  After that our day of craziness began.  I am not usually a complainer, but yesterday I just felt it really necessary to state my opinion to many people in the office.  The echo was trying to say the least.  There is a fellow (cardiology student) that started doing her echo.  She did fine for about ten minutes.  Then she and I both started to get irritable.  After an hour, I put my foot down.  She literally cried for an hour straight.  I don't let her cry at home for more than one or two minutes and an hour seemed absolutely ridiculous to me.  I know that people need to learn and Hope has a different anatomy, so she is a good training case.  They did that in the hospital a lot and it didn't bother me one bit.  But...when my daughter is obviously in pain...I draw a line.  I spoke with Dr. Prieto about my concerns and I am hoping my suggestions will be taken seriously.  I suggested that the regular echo tech take the pictures that are necessary for Dr. Prieto as soon as we get in the room.  After that, if Hope is still in a decent mood, I don't mind people using her for training.  But...when they spent all that time training the new guy and still didn't get a good picture of her pulmonary artery...that is not good.  I am now off my soapbox...sorry, but it really was hard on my mentally to see Hope crying that much.

No talk of her Glenn and Dr. Prieto likes how she is gaining and how well her oxygen saturation is looking.  She is usually in the high 70s and she thinks we can hold off on the heart catherization until her sats stay in the mid 70s consistently.  Hope is also getting over her least it seems that way to me.  Her nose is not nearly as congested and her coughing is not too bad anymore.  I am so glad that she didn't get any sicker and I know that God is definitely looking out for her.

Here is another poem Stephanie wrote and it reveals my feelings much better than I could ever write them:

My fingers run along the line
Upon my daughter's chest
I ask her then
"Who loves you"?
Why mommy loves you best

"Do you know your brave and strong"?
"And hope shines in your eyes"..
Do you know each day with you...
Is like a new sunrise?

I wonder if you understand...
Just how you've changed my heart..
My prayer to God will always be...
"Don't ever let us ever part".

Do you know...sweet daughter of mine...
How very loved you are?
I could search for all my lfe...
But I need not look far.

For beauty rests within my midst...
In the heart of one small girl...
You've overcome so very much...
And live each day with joy.

Who loves you most I ask again...
A her ear....
Life has few sweet moments when...
Things seem so very clear.

Why mommy loves you silly girl...
She thinks you are the best...
You laugh at me in answer...
I know that I am blessed.

~Stephanie Husted

Thank you for keeping our family in your thoughts and prayers.  We really appreciate it and know that God has been hearing and answering our prayers.


  1. Sorry to hear about the rough appointment. I know that our hospital is a teaching hospital as well, but sometimes you just have to draw the line. Glad to hear that Hope is feeling better!

    ~Stephanie and Braeden(HLHS)

  2. I'm sorry to hear about your appointment. :( I know how you feel. At U of M where Aly is treated there is a LOT of teaching going on so we've definetly experienced some of the same frustrations. But, it makes it all a little better when you hear good news right? Glad to hear Hope is doing well still! :)

  3. Phooey! That really is ridiculous that they handled Hope's echo like that. Your suggestion makes PERFECT sense and truly, they should've already been doing things that way in the first place!

    Oh, and Chase has a cardio appointment tomorrow that will include an echo, so hopefully we won't have the same kind of experience as you did. :)

  4. Our hospital is a teaching hospital too and at times that can be frustrating. We have put our foot down before for Logan too.

    Glad her appointment otherwise went well and she is doing great.

    Stef, Ryan, Wyatt and Logan

  5. Wow. I am sorry they made you guys go through that. And after all that still didn't get a clear shot? ugh.
    Natalie screams every time and when she does, luckily they still get a clear shot even though the tech is irritated too. Monday she gets her first sedated echo and honestly, I'm a little glad that she'll be sleepy. I hate the risks of having to do that but what can you do.
    You have a right to stand on your soapbox. And we're hear to ;)
    But yes, glad that Hope is handling everything like a champ and staying healthy. She is awesome. And so are you mama!!

  6. Sorry that you were both put through that terrible appointment. I could only imagine how hard that was for you! I am glad to hear that she continues to do so well. I pray everyday for her and I am glad it is working!
    That poem is so beautiful, it made me want to cry. Take care and give that precious girl of yours a huge hug and a kiss from me. :)

  7. I understand those appointments. I cannot deal with it too well when Mackynlee cries. I try to look on the outside like it is okay, but on the inside I am going crazy. I think it is things like that that are aging me quickly!! Many times I cannot remember people's names that I should know right off of the top of my tongue. I walk into the kitchen and do not remember why. ETC Praying for you and baby Hope. I love Stephanie's poems!! Heart Hugs, Susan

  8. Thanks for following my blog! You had asked for more info how I got Chloe's Law into legislation.

    I wrote my local House Representative for my district numerous times. I called his secretary numerous times too! I included a ton of research links in my emails that prove Pulse Ox Screening can detect some CHDs in some babies and save lives. Stressed how quick, painless, easy and inexpensive this test is. He finally agreed to support it.

    A bill was drafted and asssigned a bill number. Im waiting for it to be assigned to a committee. I hope to meet with the committe chair soon.

    This bill could die any minute. If so, i will re-submit next year.

    Also, the bill is subject to appropriations. So if it does pass, I still have to wait to see if the budget will allow for it.

    Hope that helps!