We are still in the same spot as we were last night. Just waiting, and waiting, and waiting. That has to be the hardest part right now. I get really anxious each morning before I come in and see her hoping that she has lost enough fluid to start weaning her off of the vent again. But it looks like she is still puffy. I don't understand why with all that the doctors have done that the fluid won't GO AWAY. I want to go home with all of my babies. I think I have hit that mark where I can not stop thinking about home. I don't want to be here anymore...I don't want Ava to be here anymore, I want us to be home. With each day that passes I start wondering if we are even going to get to go home before her next surgery. She is already almost 6 weeks old and her next surgery will be when she is 6-8 months old. I know that may seem like a long time to others but we have already been here for over a month and who knows what will happen when she finally comes off of the vent. How long will it take for her to eat by mouth or for the doctors to decide whether she needs a g-tube (feeding tube)? I have no idea how I did this for 11 months with Kaden. I think I just got use to that life style. I was able to hold him and cuddle him and that (I am sure) made it easier. I feel selfish thinking this way, especially knowing that little Ava is the one going through the worst of it all. I just want to take her HOME where she can be cuddled and loved on. I want to be the one taking care of her and around her 24/7. It is so hard to leave her at night, I (as a mommy) have to put my trust into someone else to take care of her. I know these nurses are great (most of them), but nobody cares about a baby more than their mommy and daddy. Today my heart skipped a beat when one of the nurses gave Ava her med. She went to put it through her IV, rubbing the hub down with alcohol. When the syringe didn't fit, I asked her if that med was suppose to go into her feeding tube. Yep, it is. So she picked up the syringe that is used to flush the IV from Ava's bed and put it back into the hub without rubbing it down with alcohol. For some that might seem like a minor detail, but this is how people end up with infections in their blood. Here is my dilemma...Ava has her for the rest of the day and I am always nervous that when you mention something to the charge nurse (in this case it would probably be the other nurse assigned to Ava because the nurse I am talking about is a trainee) will the nurse taking care of her hold a grudge towards her because her mommy is a "tattletale." What do I do? I know she needs to know, but....
I feel bad complaining, I have been just a little grouchy lately. I have not been able to sleep the last couple of nights. I go to bed tired but start thinking about all of the "what ifs" of life. I hate it, no matter how hard I try not to think about them they creep into my mind. I think this hospital stay has made me start realizing things that I have been naive to lately. Never mind, I don't want to get into it.
Please continue to pray for Ava's recovery. Thank you
Do Not Worry
15 years ago
7 comments:
Amy,
My heart breaks for you because I know the pain you are feeling. I understand your fears, your anger, your sleepless nights! First things first, It is your right as a momma to report anything that doesn't seem right to you in Ava's care. I remember i was always nervous when a nursing student or new nurse who wasn't familiar with Jack's case was on shift. I DID know what he needed when they didn't. I remember one time having to argue with the nurse about giving him more sedation because his sats kept dropping to terribly low numbers. As a momma, sometimes you just know!! It is so hard being at CMH and Ronald McDonald HOuse and you have every right to vent about wanting to go HOME!! I pray that for you. It was interesting to me to hear you talk about your experience with Kaden at the hospital, how it just becomes "your lifestyle". I started to feel that why with Jack too. I would love to come up and see you if you would like some company. When I was at CMH the last thing I wanted was company, but if you need a friend who understands I would love to be there for you. Well, I better not take up to much room on your blog but I just wanted to say that you are amazing women. Please, Please let me know if I can be of any help to you. Have you had nurse Allie yet? I am so glad you were able to hold precious Ava this weekend and I hope you get to again today.
SEnding you love and support,
Kristy
Amy- I'm sure you actually never knew that I frequent your blog...but anyway, would you please tell the charge nurse? That's a really big deal. I think of you often- but may not get to see you for awhile.
Nurse Hillary (from last weekend...)
Hi Amy,
I haven't met you yet, but I'm a nurse in the PICU and got to know Micah and Megan fairly well. I read your site and keep up with how Ava is doing. As for the CVL issue...you are absolutely not tattling to let someone know. It would have been totally appropriate for you to have said something right away. We pride ourselves in the excellent care we give our patients, but sometimes we make mistakes...and especially if this was an orientee. She needs to know what she did so she will not do it again. We may be the "expert" but you're the mommy. Keep taking good care of your precious little girl. We're all rooting for you!
Valerie
I hope you have already said something! It is definitely not tattletailing, it is protecting your baby girl! It is much better to say something than have it lingering on your mind, besdies you have enough on your mind as it is!
There were a few times I spoke to the charge nurse about our care and I always felt so much better after getting the issue out there. Our babies are our lives and you now better than anyone what she needs. Afterall you are her eyes, ears, and voice right now!!
Hang in there!
As always, Love and Prayers:)
I know exactly how you feel, I've seen lots of things that scare me to death. I'm so sorry and I know it's hard. And YES it is a big deal!!! You do need to tell someone though. We've had so many line infections and while many of them aren't preventable, I'm sure some are. Hang tight. We'll have to get together when we get back there. I was really lonely the last round b/c a lot of parents I got to know well were gone and finished with treatments. Good for them, lonely and bad for me! Hang in there!
Amy- it's Caden's mommy. I know exactly what you are talking about with the IVs, and it does make it so hard to leave. You (if you haven't already) should say something. To someone, anyway. I understand what you are feeling, because it's not just the fact that you tattled, but now you wonder if the trainee is going to hold a grudge. The thing is, she's a trainee, so think about it like you are helping future mothers be more at ease when their baby is in her care.
Wouldn't it be nice if they would let you sleep in the PICU? I know you probably couldn't anyway, because of the dinging and the constant shuffle and noise, but being just a couple blocks away at RMH seems like a hundred miles.
For me, I don't think it was the fact that we were there for so long, because I really did get to make friends with the different nurses and other parents, it was just the conlicting feelings of wanting to run away, knowing that I could never do that to my baby.
I hope you are feeling better before you even get this message! We are praying for Ava... and for your sanity. :)
Ashlea
Amy,
If it is one thing I have learned about being in the hospital with Rhett, and the trauma we have been through with him, it's to be extra cautious with the people who are taking care of our children.
If you feel uneasy about something, or a nurse, tell someone. The day that Rhett was overdosed Andy and I both felt that uneasy feeling about the nurse that was taking care of him. Not that we didn't like her, but something was just off.
We had even talked about asking to have a different nurse, but were worried about the "feelings" it could cause.
That is a regret that I live with every day of my life. Although the nurses are great, and they all have our children's best interests at heart, they can make mistakes because they are human.
I can tell you right now that since that incident, there have been about 4 nurses that we politely told to "Get the hell out of our room" because we had that uneasy feeling.
Don't be afraid of tattling. It doesn't matter what anyone else thinks, only that your sweet baby is kept as safe and as healthy as possible.
As far as the waiting game goes,
I am know that feeling. It is so hard. You sit there and watch the world go by with their daily lives, and all you want to do is be a part of it. All you want is for your life to be normal again.
We love you guys, and are thinking of you and praying for you always.
((Hugs))
Pam and Rhett
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