Grace is doing ok today--she had a few bumps in the middle of the night. Yesterday the doctors decided to try and wean Grace off of her millirone (sp?) and started giving her a new drug--analipril (sp?), both drugs have the same purpose--help the heart not work as hard--but millirone is only given intravenous while analipril is given orally. Three weeks ago they tried to give Gracie analipril, but that was also the day that she ran a high fever and they did a major clean out of her chest and her blood pressure dropped and we couldn't get it up again (the last major scare). Apparently it was the analipril because her blood pressure started dropping again yesterday and throughout the night. Luckily we had a nurse that knows Gracie and remembered the previous episode and withheld the analipril and spoke to the doctors. Today she was still recuperating and her numbers were still getting stable...but she is doing ok.
Because of the analipril she didn't do too well on her 2nd spontaneous trial and they needed to increase the rates on her vent. This morning the nurse worked on getting Grace back to the vent settings she was at yesterday morning--a rate of 12 and oxygen at 40%. Once she got there and her blood gas came back good, they tried another spontaneous trial off, but only for 30 minutes--she did good! They will do another 30 minute trial in the morning and continue them to strengthen her and prepare for extubation.
Today going to the hospital was quite hard, all I could do was cry as I looked at my beautiful baby and wonder if we are ever going to get out of there. It seems like we are stuck while others around us are improving and moving on up to the floor. Its hard because we are constantly getting nurses that have never had Grace before, the excuse is because there are sicker babies. I'm sure that is the case and I'm glad that there are nurses with such excellent levels of skill--but it makes me feel like we are getting the 'leftovers' and that Grace isn't as important as other patients. It is so hard to leave our baby in the hands of strangers and with Grace's history it is even harder--who knows what would have happened had Grace been given another dose of analipril?
This is the end of the update on Grace--please stop reading now if you don't want to hear my unedited ranting.
Twice this week we were told we would have the same nurse we had the day before and we call only to find out that we were given a completely new nurse--it isn't an easy thing to take. Its like leaving your child with a babysitter you have grown to trust and feel 100% comfortable with only to find out that she was replaced with a complete stranger that you have never even met. We are told that all the nurses are great and very capable, and we believe that but like any mother I want the best for my baby and when she doesn't get it I worry. I feel that because Gracie is starting to be weaned off her vent, she is in a very critical and terrifying place (emotionally for me and for her since she has been on the vent for 7 1/2 weeks straight) and almost by not getting a nurse that is familiar with her is putting Gracie in a risky position.
I realize that because she was so sick for so long we have had some of the best--and they are needed with others but it isn't easy and it doesn't help when no one really prepares us for the shock each time her nurse is changed. Today I was expecting the same nurse she had for the two previous nights, so I waited to call until later, when I found out she had a nurse that never had her I was so upset that I hung up the phone and wanted to throw it in frustration....
I guess I'm done rambling and ranting--I just wish that I could be up there more with my baby and look out for her and her well-being because I know she isn't getting the same care she had even a couple of weeks ago.
4 comments:
Deanna, I know that you don't write these things to get sympathy, but I'm very glad that you do share how trying your experience is. I struggle to understand all you are going through and I wish I could make it all better. Although I know that the only thing that could make you feel happiest is to have your beautiful little Grace at home where you could be with her and take care of her 24 hours a day all by yourself, if there is anything I can do to help make you a little happier for a brief time, please let me know. Another Cold Stone outing? Or we should finally go to a movie. Let me know when you are ready and I'll be there.
Hi Deanna,
Rhonda Wall here. Wow is all I can think of to say. Wow that your baby is so beautiful and so strong. Wow that your family is so special and trying so hard to get through all of this. You have all touched my life and I pray for you to all be home together soon. Thank you for sharing.
Love,
Rhonda
That really is frustrating. I remember feeling the same way. It is the reason I called the charge nurse twice to ask that certain nurses not be Ryker's nurse, I did not feel comfortable leaving him with them. You have every right to feel this way. I do not know what to tell you. I would maybe suggest asking for a care conference, where you sit down with everyone who cares for Grace, and discuss the plan for her. And I would also heavily suggest telling them that before they change/do anything that is not normal routine with Gracie, that they have to call and talk to you, so that you give the approval. We love you guys, and I know the feeling too well of the helplessness of feeling like she will never come home. It is some of the worst feelings in the world.
Love you guys,
Mike and Em
Deanna, I don't have much more to add to what everyone has said but to let you know how much fun it was for me to watch your other beautiful baby girl on Monday! I hope you know you can call on me any time!!!! I also second Megan and her Cold Stone or movie idea. I would love to do that again any time just let us all know and we will be there! I love you!
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