It seems like little G has alot to teach me.
THis morning we had a "procedure". I hadnt gotten worked up or put out a news bulletin about it because they werent going to put her under anesthesia and we were just having ear wax cleaned out and hearing tests done.
All went well until the anesthesiologist came in. He said they WOULD put her under since they were working around her head and he wouldnt be able to keep the mask/ gas on her. They brought in some meds to make her sleepy before they took her back. You could tell when they started working. One min she was on, the next off- she slumped over in half. Pit.i.ful.
The hospital is part of Nemours and used to children, they were ready to put her in the wagon to take her back but I told the nurse if she would like she could just carry little G back- little G prefers contact. It took longer than we were told it was. Dont you know each time someone walked in the waiting room mama looked to the door way to see if it was the Dr. We got a laugh about it once he saw us. He explained that her ears were unresponsive to the sound so he lanced the eardrum to check for fluid. The Left ear had fluid so he put a temp tube in that he said would fall out eventually.(hoping this would help with hearing?) The audiologist explained the tests somewhat and the results. She said the noise is pumped into the ear and then reactions in the ear are measured as it comes back out? They couldnt get good readings on either ear. They discussed redoing all the tests again, first we will schedule follow up appointments
I replied, " I hope you would understand my frustration that we started this process in January, I have told the Drs what I am seeing and I want little G to make prgress with her speech. A year ago she had NO LANGUAGE. She only made guttural noises and played handgames. We now have a vocabulary of over 300 words and she is trying to speak." (she was shocked at how many signs G has learned and I am not sure if she understood that little G has good thought process and speaks CLEAR words. SHe is able to communicate thoughts and feelings. I am not perceiving things wrong. Granted she regresses when we are in public and she is trying to be the star of the show, she would rather play patty cake ten million times than carry on a conversation or answer questions.) I just dont know. After I mentioned this the audiologist mentioned a device Ive heard of, Little G would wear headphones and I would talk into a microphone. I would really like to talk with her face to face and not be in the waiting room surrounded by people, then called by the nurse that little G was waking up....... I will call and set an appt. She said it might take a few weeks to get in. sigh.I have to remind myself that we did learn more about her hearing loss so this was worth it.
Once we went back,
Oh man.
I cannot tell you how distraught little G was. her eyes swollen closed and kicking and flailing her arms. RED in the face, nose and tears streaming. It was like this for an hour. Mad as a hornet. (I texted friends and family asking for prayer after 30 mins or so) Thankfully Sesame Street came on and she had started having moments of lucidness. It got alot better once the nurse took the IV out. I guess now I know the possibilities.
I am better informed
having been there
and done that.
But I dont have a solution and I am frustrated.
The audiologist seemed glad that we were going to have IEPS done and such for school. I am not over the moon about getting more people involved in our process. Little G regresses so much when in public situations.....but she does need to learn acceptable behavior in public, she needs to learn how to behave when I am not around. There is no other way around it all. I hope everyone in my life can continue to offer me grace and mercy,
its just out of my league.
I have a meeting with the Director of our Private school and we are going to set the ball in motion.
We will see where we end up.
We will be in prayer
and will make the best decisions we can make with the information presented.
Off to take a nap.
I remain,
Under His wings,
Anna
PRAYING with you that God would guide you to what is best for you and for G :) Sooo hard sometimes!
ReplyDeleteTerrible of the hospital not to plan better and I would question the doc too. 1st, she should have woken up in your arms. That would have made the transition smoother since she would be comforted during it--I was feeding Ella popsicles and holding her close as she was waking. She still had an iv in and didn't notice for an hour. B/c mommy had her in a baby hold for an hour or more. bad hospital. Shame on them. This is usual protocol. You would have had a room and been waiting.
ReplyDeleteI'm sorry it was such a rough time today :( Sometimes these decisions are so hard to make- and it's stressful trying to be an advocate for your child when you aren't the expert in a particular area. Sometimes I feel completely overwhelmed with the feeling that I need to learn everything about everyone's "issues" so I can be that advocate..we've learned the hard way what happens when I trust others who are suppose to be the "experts". Prayers for you as you make all the decisions and work through the school process...and her adjustment to behaviors in public. We're in the same boat as you. Blessings, Jennifer
ReplyDeletePraying for you all, Anna. I can't imagine how hard it must be to love someone so much and to have so many things about her basic health, happiness and well-being out of your control. But He IS in control!
ReplyDeleteOn another note, and to answer your question, I use Daniel Smith watercolors! :) Have you had time to paint much lately?