Saturday, March 1, 2008


I am SO FRUSTRATED right now. Lets start from the begining...
Last night they began to wean Ava from the vent. She was doing well, so early this morning they switched her to a mode where she would have to do the work on her own. She handled that for about 5-6 hours and then they switched her back to let her rest. After awhile they again switched her back to the mode for her to do the work on her own in hopes of taking her off the vent today. Well, as we came back up from lunch there were quite a few people in her room. The doctor then stated that as they were about to take Ava off of the vent, her heart rate and oxygen rate dropped low. They, of course, decided to keep her on the vent. The poor baby. I am so frustrated because...first of all the nurse did not think she was ready, but the doctor continued to try. Second, they stopped all of her pain and sedation meds this morning, the poor girl continues to gag which in turn drops her heart rate. I don't understand why they would think that after only two days of having her chest closed she should feel fine. I know that I wouldn't. I can't get over the fact that her blood pressure and heart rate is higher than it has been, but that it is alright. They had stopped all pain meds in order for her to be more, hello who wants to be that awake and feel pain. I understand that she needs to be awake for her to come off of the vent, but why on earth can she not have morphine when she needs it? Nate just asked the nurse if they can give it to her again and the nurse said that she is going to. Sometimes I feel like the doctors push these kiddos so they can get them out of the bed space, especially now when they are so full. I want her to come off of the vent more than anyone, but at her own time...when she is showing she can handle it. I also want her to be as comfortable as she can be and it is driving me crazy when I bring up that I think she is in pain and I don't get any clarification or results. I did hear from the doc, that the tube is probably irritating her, I kind of figure that but what about her does have staples in it and I am sure that it is not feeling all that great.

On top of all that, Nate and Kaden are leaving early this evening. I feel like I am just going to break down and cry. I know that it will be good for all of us, Kaden will get to go home and to school and get things back to somewhat normal. Nate will get to get out of the hospital and back to work and be around some of his friends and I will not feel as torn between Kaden and Ava right now. It is going to be hard to be away from Kaden, but as I experienced a couple of weeks ago, it is easier not to feel so guilty being here at the hospital with Ava. I just want us all to be at home...I wish it was that easy. At least my mom and sister will be here tomorrow to keep me company for part of the day.

Well, enough of me venting...please pray for Ava to come off of the vent soon and for her to feel comfort. Please also pray for the guidance of the doctors so they can make decisions that will benefit Ava's recovery. Thank you.


Tyler Patrick Breuer said...

First of all, I want to come to CMH right now and give you a huge hug. Second of all, I know exactly what you are going thru. They did the same thing to Tyler in September and we were reintubated twice. He successfully came off the vent the third time. We had floroscopy after floroscopy to make sure his diaphragm and lungs were working properly (which they were) then during all this we were told that one of his vocal cords was paralyzed. ETC... it seemed like I had nothing but good news for weeks, and there he laid, showing signs that, as a Mother, I knew he was in pain. The nurses did stop the Morphine as a pain relief and started Oxycodone. But oxy always made him get so sleepy and he became slightly addicted. Well, anyways, after he was intubated before coming off of the ventilator for the third time (first two to times he only lasted off a short while) they put him back on the Milrinone for about a week...doing that made his heart stronger and I guess everything else when he was extubated the third time, he was successful.

Thirdly, You are so correct in knowing that Ava's most likely experiencing some pain if her heartrate is more elevated than it has been in recent days. I really do feel like they 'rushed' Tyler... and it wasn't because they needed bed space. I'm still not quite sure why they did, but knowing what I know now, I won't let them 'rush' him ever again.

There is a lady who works at CMH for the PACCT... if you haven't met her, you NEED to have her paged. She's so great at listening so you can release your emotions and vent and cry and just get it all out. Her name is Rosemary Hubble. Her number is 816-983-6543. I met with a bunch of other PACCT ladies and out of all of them, she was the BEST! Tell her I sent you. She just might remember me and my Mom.

Sorry for the book. I only wanted to let you know that I've been right where you are... and I was a mess! Praying for you. If you need to call me its 913-845-2996.

Kathleen Breuer
(Tyler's mom, HLHS)

Anonymous said...

Oh Amy girl I am so saddened to hear about how fustrated you are. I wish I was there to give you a big hug and to just hold you and let you cry and vent on my shoudler. I am not even there with you but feel your pain from so far away. If you feel it in your heart and gut that Ava is not ready and can tell it by looking at your precious little girl then by all means you stand up to those Dr.'s and let them know. They have to listen to you, that doesn't mean they will do something but they still need to listen. Bless the nurse for sensing you pain and anguish. You go girl and stay on their cases. As for Ava I pray everyday for her to have comfort and a healthy recovery. We are all praying for her. If you are needing anything let me know. Even if you just need me to come down there for a day, I will take off work to help you out. Wishing you the best, thinking of you always and praying everyday for your family.
Love always,