Okay where do I begin, I have so much on my mind. We don't know why but Arianna seems to be needing more oxygen. She has stayed on the low side all night then after her 3am breathing treatment she dropped to 85% and they upped her oxygen to 2 liters. I am worried why this is happening to her. Is she getting worse? She is on 2 liters and still has drops into the 80's.
Ok...here is where my blood begins to boil. At 5am they tell me that we are being moved into another room. I can't believe they are moving us again. They need to put someone in isolation and since we are were in 1 of the private rooms and the other private room is already being used for isolation, they need to move us into another room. I told them how I wasn't happy with this. That they stuck us with an RSV kid the other day and I am not happy with there services. I told them for some reason Arianna needs more oxygen and it happens to be after we got the RSV kid in our room....praying she didn't pick it up. I am just a ball of emotions so I was crying and getting upset about all that they have, or have not, done since we have been here. They reassured me the roommate we are getting is only here for isolation and is not contagious. I told them that is great but what about the next kid you bring in, what kind of sick kid will you stick us with then. So after all the advocating for my daughter yesterday I feel stuck in a position that I have no say so in. I told them we still don't know what is wrong with her, we haven't got her immune function tests back so I'm worried about having a roommate again. So anyways, they asked if I wanted to talk to the charge nurse, so I did, then the charge nurse asked if I wanted to talk to the clinical liason for the hospital and I said yes. So hopefully sometime tomorrow I'll have a nice chat about our horrible ER experience, the RSV kid, and the fact that no one bothered to take chest x-rays yesterday when it should of been done. I am so upset right now and just getting to the point were I don't want to be the nice mom anymore. I don't want them to think they can just walk all over me and I'll be okay about it, cause I won't. This is my daughters life and if they don't find it important to them, then I'll find someone else who does. Okay...thanks for listening.
So it's 6:30am and the newborn in the room keeps crying so Arianna isn't getting good sleep. It will be another long day. We are going to have her upper GI done today, and hopefully get another chest x-ray. Originally the doctors said they would contact her GI doctor and tell him about the ability to eat while on oxygen, then they say they aren't goign to. So here is what I will do. We will have the GI study this morning, then I will call her GI doc and let him know we are here and ask him to review her test. Somethings you just have to do yourself if you want it done. I'm sure there are 5 other things I wanted to tell you all but I'm so upset to even think about them right now.
Please continue to pray for Arianna and believe for a complete healing. Thank you for checking on us and I will update when I get another chance.
4 comments:
Oh you guys....I feel so bad for you and the frustrations you are feeling right now. It's so hard when the people caring for your child don't always have the best interest in mind. It's so good, though, that you are such an awesome advocate for Arianna. She's very lucky to have you! We will most definitely continue to say lots of prayers for your sweet little girl (and for you, Mama!). Hang in there. You're doing such a great job.
OH....that makes me angry with you. It's standard everytime we're in the hospital to wake your baby up in the middle of the night for a chest xray. And what exactly are they looking for in the upper gi?? That's only going to show that when she swallows...food goes down?? Just tell them to get oxygen for you at home and take your baby outta there before she catches something. They can do all of those tests on an outpatient basis. You know...everytime we have problems with Isaac's sats...our card almost always tells us that it's pulmonary and not the heart. If they've already done an echo and the heart is fine...have they told you what the "plan" is?? I'm so frustrated with you...I think we've all been here.
You've stayed longer at the hospital than I would have!! Good job for speaking up... GO GET THEM! You're paying them to watch and take care of your babydoll!
Vanessa, Carson and I are home sick today, so I decided to visit you blog. I'm so sorry that you and Ari have to go thru all this. I can't believe that they are trying to put RSV and sick children in the room with her, it is outrageous!! Good for you for standing up for your daughter. You're a great mama and your determination is unbelieveable. I get teary just reading it and I can't imagine having to go thru it, but God has a bigger plan for you...keep up the good work. Everyone is so proud of you. We're praying for you. Love, Robin and Carsito.
Oh Vanessa,
How frustrating! I can imagine how you are feeling, between still not having a reason for Arianna's low saturations, probably not getting enough rest while in the hospital, and then the crazy stuff that is going on in the hospital. You should be proud of yourself, standing up for Arianna like you have. For one thing it can only improve the situation for her, secondly, the feedback you give the supervisor might prevent other parents and children from having to go through the same frustrations. You are acting as an advocate for change, and that's terrific. I just hope and pray that you can soon find the answers you seek. I have loved following Arianna's story for the longest time because your strength as a mother shows in your writing, and of course Arianna is just too precious!
Hugs from Bilal!
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