As I write this, I am sick to my stomach. Ava has just been re-intubated. She has been really fussy. When she was awake she was crying until she would fall asleep again. Tonight when I was holding her she just started getting really red...EVERYWHERE. At first I thought maybe she was hot, so I took her blanket half way off. Well, her body still felt chilly to me but she was sweating and the redness did not go away. So the nurse came over to look at her and called in the doctor. The doctor said it could either be a reaction to the blood that she had received earlier or due to respiratory distress. They did a blood gas and her CO2 was high. The doc came back in and stated that she was in respiratory failure and that she needed to be re-intubated. He continued by bringing up the dreaded talk. That's right, he said that we are getting in the territory of having to start to bring up the subject of traching her and sending her home with a vent. I was very unimpressed with his way of talking to me about it. He went on, kind of laughing may I add, to say that we would be one of the first families that they have who would have two babies on a vent at home (funny?). I am sure that he was trying to lighten up the mood but geez. He also stated that they would be looking into it because he knows how "amazing" we are with Kaden and that we have "perfected" it...I do NOT want this to be the reason for her being trached. I can not believe that the "talk" has come up. I will say that it is not in stone, that he did just mention it and said that he was going to look more into other things that could be the problem. I guess just actually hearing a doctor talk it about it now has put it in to reality that it is a possibility.
I guess, I am just really frustrated because Ava still has this fluid on her lungs. No one can really tell us why and evidently does not know the solution to resolve it. It's one of those things...in my heart I am screaming you are the doctor, fix her. But my mind knows that they don't necessarily have an answer to everything. Please just continue to pray for her, she really needs all that she can get.
Do Not Worry
15 years ago
9 comments:
My heart aches for the 2 of you tonight. I was hoping this update would have gone a little different. As for the doctor and his comments...that stinks, I know a trach is the last thing you want for Ava. I am so sorry that his bedside manners were not a little better. I must say though at least he did not hold back on what he was thinking for fear of upsetting you.
One of the best things someone told me, that really seemed to help, was sometimes the things we face we do not have a way of helping our children, in that case we take them to the doctor/cmh in our case. The doctors are the best of the best there, but sometimes the answers are even beyond them and the technology they have. So it may take a little longer to get answers. But that is when God steps in...we have to trust in the Lord and the fact that he will take care of our children.
You 2 are doing great and as tough as things are Ava knows mommy and daddy are right there with her:)
Love and Prayers!!!
Thoughts and prayers continue for Ava's health and recovery.
Chin up; everything will work out. The doc was probably trying to lighten the mood, but he was probably also having a hard time telling you about traching Ava. Maybe he was just trying to break the ice a little. Hold on to hope; she will pull through.
Amy
As I read this my heart just started breaking. I don't even know what to say. I can't beleive how much you and Nate have had to endure. Little Ava just needs to build up strength. Matt and I have been there with the heart issues and the respiratory distress. It seems like just in a blink of an eye, they can go into distress. I am sorry that the Dr. did not deliver the news in a "nice" manner. I can only guess which Dr. it was!! Know that I am praying and I will alert everyone I know to start praying. If there is ANYTHING I can do let me know. I am serious, Matt and I will help with anything you may need. I will be up on the 28th for Bella's clinic. So I will stop in and see you then.
Love and Prayers
Megan
That makes me angry just reading about it. They should not do it, just because you guys know how to take care of a child on a vent.
That is not fair to Ava. What would they do if you guys had no experience with a trache and a vent? I totally feel your frustration.
I hope they get everything figured out soon, and that they can find out why she still has fluid on her lungs.
I know that she will get better soon. I just know it, and when she does it will be fast and then you will be outta there!!
We love you guys, and you are ALWAYS in our prayers.
((HUGS))
Pam and Rhett
I am so so sorry. I will definitely be praying for Ava. I cannot believe the doctor would even pretend to joke about that. Don't they understand how hard that would be on both of you. God bless and hang in there!
Oh Amy, that is so sad to read. I am praying for Ava. She looked so good when I was there Monday to visit her. If there is anything at all that I can do or help with do not hesitate to ask. Do not get down yet about things, all though I am certain you wanted to reach out and strangle them. We all need to keep praying and hope that the Dr's can come up with another answer other than to put Ava on the vent. I know you are struggling and PISSED OFF but just remember we are all behind you. If I could reach out and hug you now I would. Hang in there and let me know if you would like me to come down anytime next week and be there with you. I will take off work if that is what you need. Do not hesitate to ask.
Love and hugs to all.
Pamela
Oh girl! I am speechless. I just don't know what to say. Other than I can't agree more with what everyone else has written on the comments today. If you need anything, please - please ask me. I am only 30 miles away from CMH.
((((HUGS Amy, Nate, Kaden & AVA))))
PS: Kaden really sounds like a sweet, caring and openhearted little boy. I am sure he just looked past that girls actions. I think you are amazing parents to your kids! Keep smiling!
Kathleen 913-845-2996
Amy,
This is your cousins Tabitha and Gary. I just wanted you to know that all of us here in Oklahoma are praying for you and love you very much. I was telling some coworkers about Kaden and Ava, and they agree that you have the strength of a saint. It has a nice ring to it, Saint Amy. We love you very much, and are always here for you. Know that our thoughts are with you and that while Kaden and Ava have not been the healthest babies, they have a will that can not be beaten. I thoroughly believe that they will not only pull through it, but will become examples of what loving, caring, wonderful homes can do for any child. I know that you have certainly shown that to us, and what we will need to provide to our little ones that are on the way.
May God's grace, praise, and strength be with you as you know that you have ours.
Love,
Tabitha and Gary Carter
Post a Comment