8:00 Dan takes Lydia to her appointment at Broadway Clinic.
8:15 All checked in, Lydia's charming the room, all is good.
8:45 Can't get line access. Not in her arm or hand. Call Vascularl
9:00 Dan takes Lydia to CMH downtown for vascular to put in a line.
10:00 Back at Broadway Clinic to start the test.
Every 30 minutes for 8 intervals they put the tourniquet on, take Lydia's blood pressure and take a sample of Lydia's blood.
2:00 Lydia can finally eat and leave to get a Happy meal, of which she is most deserving.
Here is an email I wrote while silently crying over the keyboard on Saturday, September 5 to Lydia's Endocrinologist.
Dr. Feldt,
The test is done, not fun, not a good experience in that office. I'm not sure if you have any influence in that regard but I'd like to share the experience. The people were are all nice and pleasant enough, just couldn't get Lydia's line started, bruised her up and down both arms. Had to take her to Adele Hall to vascular to get line access, then back to Broadway. The test started 2 hours late. Needless to say I have thoughts on having clinics that need line access without nurses that can give it effectively. Maybe Lydia is exception and for all the other kids and parents that have to go through this I'm hopeful that we are the anomaly.
I'm anxious to hear Lydia's test result, though I'd rather not know them, truthfully. I'd rather brush it under the rug and love her for the complete beautiful child that she is. I believe she is made exactly how she is for a reason and that I've given her only the things that are necessary to save her life, and so far, that's been a lot. I don't know that growth hormone injections will save her life. I'm not sure they will better her life unless there is a absolute medical need for them. If it's only so she is a "normal" size and is as tall as the other girls, to me that sounds vain. I don't care if she's competitive at sports, let her be a musician or an artist or a chef.
I just need to have this dialogue open with you. I promise I'm a reasonable parent that will choose what is medically best and necessary for my child. I am asking that we exhaust every possible alternative, do every possible test that could lead us down a different path, talk to other parents that have and have not chosen growth hormones, involve Lydia's pediatrician in the discussion, and get a 2nd opinion. I don't know if it's normal for a mother to be writing to you like this but this is what I need to do right now.
Maybe the test will show that things are okay and she doesn't need this but I am a mother that plays out the scenario to the worst possible conclusion I know to exist. My daughter has had 2 open heart surgeries and needed a feeding tube and trach to live - I have played out the worst possible outcomes too many times. Her heart is repaired, not normal, and it's forever in question. The trach is gone and the feeding tube is being removed very soon. That was supposed to be our last hurdle, that was it. Then we could be normal and typical and not worry anymore. And as we were starting to celebrate that we were hit with this. This test upset our celebration so I just need to hear from you about the results so I can know what to prepare for.
Thank you for reading all this. I've had to handle a lot in regards to Lydia's health. I can handle this if it's what we need to do, please know that.
Kinsley Riggs
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