Sunday, March 23, 2008

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 nee
ds 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.

15 Showin' Comment Love:

Kacey Bode said...

Cayman is doing so great!! Keep fighting the doctors and nurses, you are the mom and you know what is best for your daughter! You are her voice and her advocate, keep up the good work! Happy Easter!

Mom & Proud Grandma said...

Dearest Kris - remember to vent this (along with the possibility of transfer if they don't want to be more proactive) with Rebecca your social worker - She has been able to accomplish next to near impossible things in the past for you ones! Just let me know if I can do anything. I am really missing you ones already! It was so great to spend such quality time with you & "Little Missy " Cayman. XOXOXOXO

Anonymous said...

first of all, i'm SO glad cayman is doing so well! your venting may not be over yet. i'm proud of all the medical breakthrough's we have and all they can do for us, but sometimes it gets rediculous and down to insurance money. they did that with georgie. ten years ago, they'd never have detected the teensy hole in her heart and since she was healthy as a horse from day one.... she'd have been just dandy. i keep looking back and thinking of how many things i would have done differently. SO many things. I feel i know more now, but at the time, i just blindly floated through it. sometimes it's tough to try to deal with the doctors when they treat you like an inferior. you know what's best for you and cayman and sadly, to some doctors, they're just numbers and dollar signs. praying that things go better and the doctors get their info straight/together. much love to all
amy k

Anonymous said...

Hey Mama Bear! I don't think this is the same Kris that we knew when you went into the hospital, but a transformation has taken place. Your Mama Bear is showing.:-) I think that is GREAT! Someone has to be there for that Precious Little One that has no input for her care. It is amazing what we Mothers turn into when it involves our daughter/son. God knew what He was doing when He instilled in us our instinct to PROTECT, FIGHT FOR, etc.! Keep up the "good work" Mama Bear! I'm sure Papa Bear is NOT FAR behind.
Cayman is one of God's miracles in progress.
Love & Prayers to you All!
Aunt Linda/Great Aunt Linda

samantha said...

HAPPY EASTER!! Everyone missed you guys today! I'm planning on coming home next weekend....so i'm sure i'll see you and little Cayman! I can't wait!! :):)

MJLRosebrook said...

Hi Kristen! Cayman is beautiful!!
Sounds like she is really doing well!! I hope she can come home soon. Take care. Prayers to you.
Jessie

Jennifer said...

Girl - BE VOCAL! Although Children's Memorial was great, we felt like the left hand wasn't even mentioning anything to the right hand. You know me...I had to say something. Make sure you baby's needs are getting met! Fight em girl! We are praying for you!!

Nate & Amy Waidelich said...

My Dear Aweet Kris (& Mike :)--Nate and I have finally been able to catch up on all that has been going on with Your Little Miracle!--What encouraging news!! It sounds like she's very resilient & in spite of doctors & nurses who don't really KNOW her, Mommy & Daddy DO, & she knows you're speaking for her. Just keep doing that. It is your right. And I know it's very stressful & frustrating (the whole thing, but of late the "sucking & swallowing issue"), but we are praying for God to inspire these people to learn from this situation to pay closer attn to these sorts of details & to take more proactive steps in the future. May God bless them with such wisdom & May He grant you peace that "He is working ALL things for our good"...there must be some reason God needs you to stay there for just a little while longer. xoxoxoxox!! We love you guys!! Thank you so much for blogging!!

Tammi said...

Kris - that picture is so cute. I love it!! Those eyes are going to be trouble for you!! :O) You will never be able to tell her no! :O) We showed Keegan her picture and he smiled and tried to touch the screen.. he can't wait to meet her! :O)We love you guys and will keep praying that the best is being done for Cayman. We love you guys! Happy Easter!!

Anonymous said...

Oh my goodness! I swear she gets cuter every day. It sounds like things are going very well for you guys! So exciting.....such a tough little girl. I love reading your updates every day. I will continue to pray. Give thanks today that we serve a risen Lord!
Hope

Kacey Bode said...

I know I already posted but since you updated I get to post again : ) Just wanted to say that Cayman is so absolutly adorable!!! I wouldn't be able to leave those eyes either!!! She looks so good!!

Jennifer said...

She's so beautiful!!!!!

Sarah said...

There isn't much more to say. Everyone else covered it! We're also rejoicing in Cayman's strength and healing and will keep praying that she gets to leave SOON. I remember the doctors and nurses getting really annoying with Kiah, too. Keep fighting when you need to, and pray for the strength to say the right things to the right people and that they will have the wisdom to listen to you as the parent. We miss you guys!

Grandma S said...

I can't believe how she gets more beautiful every time I see her. This last picture of her in her gown is the sweetest yet. I know she already knows how to twist Daddy around her little finger! Hope to see all three of you soon.

Cayman's Daddy said...

What a little sweetie!