As you read a few days ago, Avery was having trouble keeping up his o2 at night. The next day I called the pulm. dr. and she was very concerned and wanted me to bring him in which I was not overly thrilled about. I bring him in the afternoon and he was fine but the minute we rolled into the ER he started with a panic attack (hypoventilating) so dr. see this and start immediately freaking out. Of course he got much worse with his breathing b/c he was so stressed by this point. He got so bad that he totally dropped his heartrate which was very scary and the drs. said they were intubating him which I did not want b/c once he is intubated we will have a tough decision to make if he cannot get off of the machine.
We are in ICU where we were thankfully able to avoid intubation b/ he finally settled down. My little fighter. He is now on BIPAP which he has to get ativan to tolerate. It is a pressure machine with this horrible mask that he hates. He will go home with this at night to help him breath and give him more energy during the day. Basically this is as invasive as we will go at this point. The fact of the matter is God is going to be calling for Mr. Avery much sooner than I EVER thought or could imagine and I have no control over it. But Rick and I can chose to give him some quality of life. We will not do anything more invasive than that. My heart is just aching and so is Rick's. My little guy's body is just getting tired and I just don't want to see him suffer. He will tell us when he is ready to go and I just don't know how I will be when that time comes. SO we are just gonna love him and give him all the hugs we can.
We have started to talk to Janessa about this as well which is so very difficult. We are also going to get a grief counselor in at some point for her.
We should be home in a few days with new equipment and less sleep at night. We are going to be getting night nursing which you all know I am NOT thrilled about but we will see how he does. The other sucky thing is everytime he is sick we will have to bring him inpatient to adjust the setting on his bipap.
Thanks for reading.
5 comments:
I'm glad he is doing better with the BIPAP. I know how hard the decisions you are faced with are. I hope you can bring him home soon.
We have been discussing Marlo with Logan since she was born. He knows that she can't stay forever either but I wonder how much of it he really understands.
It's hard to finally go to night nursing but once it's set up you may find comfort in having it.
Thinking about your family,
Debbie
Ontario, Can
NICKY & RICK,
OUR HEARTS GO OUT TO YOU BOTH. JANESSA AND ISSAIAH TOO. I WANT TO THANK YOU BOTH FOR LETTING US BE A PART OF YOU AND YOUR FAMILY'S LIFE. I WAS FORTUNATE TO HAVE AVERY WHEN HE WAS STRONG. THROUGH ALL YOUR ORDEAL I'VE SEEN YOU GET STRONGER TOO. YOU'VE BEEN BLESSED WITH AVERY. LOVE TO YOU,SANDY & SKIP
Sending you peace and light tonight. Hugs and kisses to Av too.
Love, Nena and Reese
We are thinking of you guys and your beautiful family, and keeping you in our prayers.
Alison.
dear rick and nicky,
as i read this post and write this, i'm crying. Please, know my heart is with you both as well as with Janessa and Isaiah.
You are all very strong. The decisions you are facing as a family are the hardest you will ever face. if i can help in anyway please let me know.
Losing Brayden was truly the worst thing that will happen to us. It did make us a strong family but there will alswys be a hole in our hearts.
I think getting grief counseling as soon as you can for Nessa is a very good idea.
Its very hard for children to see mom and dad cry. I remember Isaiah would tell people when asked how is mommy, he would say she has water coming out of her eyes.
He could not understand why Mommy was in so much pain.
I hope the night nursing really allows you and rick to get some needed sleep.
Love,
Maria D
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