The Beautiful Cayman Cindy

Sunday March 23 (Easter)
10:45 a.m.
This is going to be my venting hour. I am so mad!! I mentioned yesterday that I have been asking about when Cayman can start oral feedings. I was at the hospital this morning when one of her group of doctors made their rounds. They started out saying Cayman is doing very well. Her feedings are up to 10 ml an hour now and they want to increase them every 6 hours where as before her feedings were being increased every 8 hours. She's breathing room air through her nasal cannula now. Since she was taken off the ventilator they were giving her oxygen through the cannula to keep her oxygen content up, but she's maintaining her oxygen levels well all on her own. She's gaining weight. And she has not been given any Morphine since yesterday afternoon at 2 p.m. and her heart rate is staying calm and healthy. So many positive things are going on. So obviously that is not the part that I am so mad over. I asked these doctors when are they planning on doing oral feeds for her. The one doctor said "Probably not for awhile". I asked "What is awhile". He said "Two weeks". My heart sunk! I asked him "What needs to take place before you will try doing oral feeds". He said she needs to show signs of sucking and he asked if she had been. All the doctors and her nurse all shook their heads. I calmly (I was trying my best even though I could feel my blood pressure rising) informed him that she was sucking on a pacifier yesterday, I didn't know if she was swallowing but she was definitely sucking. He said "We'll page O.T. and have them come evaluate her and see if she is ready". WHY didn't they do that before?! Everyone is shaking their heads no that she isn't sucking, but they hadn't even been trying so how would they even know. I asked the doctor what all has to take place before Cayman can go home. She listed several things: keeping her heart rate low without Morphine, breathing room air and keeping her oxygen levels high on her own, handling her full feedings, gaining weight, the Neurosurgeon's ok for her to go home. All of this has taken place except the feeding and no one is actively working on getting her to orally feed yet when she could be ready. I have a big problem with that. The longer they put off oral feeds I'm afraid it will be that much harder for her to learn how to suck and swallow. Why not, if she is doing so well, just try it now? My opinion is, for all that Cayman has wrong with her I don't think the doctors expected her to do so well and they are still treating her like a very sick baby. She acts so healthy and all the nurses that have taken care of her previously and all her doctors she's had over the last 2 weeks always come by and say in amazement how well she is doing. I don't like feeling like I have to "babysit" the doctors. And the Neurosurgeon team hasn't been keeping up with their notes in Cayman's chart so no one knows what's happening from their end of things. Because we happened to be at the hospital the other day when Neurosurgery came by is how I was able to inform these doctors today about what Neurosurgery's report of Cayman. I need to feel like Cayman is in the best of hands. I am so tired and can't be at the hospital 24/7 but I feel like I have to be to make sure everyone that is involved in Cayman's care is communicating. I'm glad Mike is back with us. It helps having a partner to go through these things with. So once he wakes up (remember he worked all last night) I'll vent all this to him too!

11:30 p.m.
Mike and I assisted the nurse this evening in giving Cayman a bath. Then we put a gown on her. The first clothes she's ever had on...and it was a hospital gown for a baby...a little tacky but still cute. We took pictures but later looking at them discovered they all came out blurry :o(. You can kind of see the gown on her in this picture. We took this picture right before we left tonight. She's extra tough to leave when she looks at ya with those beautiful eyes.