Saturday, May 14, 2011

Hospital Day 5

My sweet baby girl is having a rough time.
It seems like we are getting closer to the day she'll get her wings and fly to heaven.It was a long drive down here. I had to come alone, suctioning her every five minutes - while driving and reading a map. I decided to bring Anaya here because there was a lot of family stress in our house, and I was also exhausted from doing most of the nursing of the previous 10 days by myself. Anaya had been having tons of Apnea or "Apneic events" that had me really concerned as she appears to be uncomfortable and in pain. She needs special care and I'm at the end of my rope.

I wanted to get a respite stay at Canuck Place. It's a lovely hospice for palliative kids in Vancouver, but it's hard to get into. So I came to the Children's hospital for them to Assess Anaya and hopefully get some respite.

Initially it was very difficult here. I told the nurses and Dr's that Anaya cannot be left alone because she sometimes stops breathing or needs frequent suctioning so that she doesn't choke - but they just thought I was being an overprotective mother. So I had hardly any nursing support- i had to beg for them to watch her so that i could go get food or take a shower.

Then they did an oxygen and breathing study on her called an oxymetry. She stopped breathing 373 times in a 12 hour period, long enough for her oxygen levels to go way down, and her heart rate would drop too. Now Anaya has 1 to 1 nursing care (her own nurse). So that I dont have to be nursing her 24 hours a day.

The Dr's are very concerned about her breathing. They suggested we do a study on a steady dose of O2 to see how it would help her. It was a good improvement. She only stopped breathing 33 times and her oxygen levels did not get too low. We discussed the Bi-pap option and it was explained throughly to me how it would actually worsen Anaya's condition. Because she has excessive secretions, the bi-pap would allow more fluid to build up in her lungs, causing lung trauma and pneumonia. It could actually make her life shorter and more uncomfortable. Now that is an explanation that I can understand.

We also talked about pain management. The Palliative team suggested some strong narcotics to help Anaya through her painful spasms. Then I had another Dr. come in and tell me to be prepared for Anaya to stop breathing and die if we used those was I ever upset. It turns out that it was a mis-communication and that the drugs are safe, they will not kill her inadvertently.

We have had lots of amazing visitors. Friend of mine from high school have been very supportive. Some of Anaya's special milky mama's from the lower mainland have also visited and brought milk, food and love! I'm so very grateful for all of the support. It's difficult to be here but I know that I am doing what is right for Anaya. To get her the help and support she needs.

I don't really know how we are going to get home when we get discharged (whenever that may be) van is in rough shape. I can't trust it to make it around the block - let alone 400km. If anyone knows someone who might be able to help with the transmission in a chevy venture van 2004 or of ANY other options please let me know as soon as you can. I'm available on my cell phone at 250 -509 -0593 or you can email me at maraglow @ and I will respond as soon as I can.

Thank you and God Bless


  1. I`m glad you and Anaya are where you are. I hope she`s getting good care and I`m glad to hear that the nursing staff has been taking on the majority of the work so you can get a break. My heart breaks for you and your little girl. I will keep you and Anaya, as always, in my thoughts and prayers. Take good care of yourself and your beautiful little love.

  2. I am so sorry things are looking so bleak. I will say some prayers for you & your little girl. I really hope the doctors help get her pain under control, and that you find some solace soon.

  3. I think about you and your family all the time. I wish that I was closer so that I could help. I pray for you.

  4. Hi, my name is Hege. I have posted on your blog once before. My son has a heart condition. We are coming in to BC Children's for test on Friday the 20th. Is there anything you need that I can buy or get you? Do you need bottled water, cookies or some fruit etc. Please let me know if I can help a bit, and what ward I can drop it off at. I hope you can get in to Canuck Place. We use it too for our son and absolutely love it there.

    Love, Hege

  5. my heart is with you...i think of you and anaya a million times a day.

    all our love.

  6. Me too, think about you and Anaya all the time. Anaya is loved by so many of us never met strangers. She touches our hearts. I just want Anaya to get better and to recover, a miracle everyone wish for this precious little girl.

  7. My heart is breaking for you right now Camara. i only wish I could do more than pray and send positive thoughts and healing energy.
    Not a day goes by that I don't think about you, your family and Anaya's struggle and journey.
    I sincerely hope things start to look up for you!

  8. 唵嘛呢叭咪吽 (Om Mani Padme Hum)
    This is a prayer in Chinese for a speedy recovery for Baby Anaya!

  9. Camara,

    Once again my heart goes out to your family, and I'm praying for your sweet Anaya. I sent you an email last night, I would like to help in some small way if possible. I am in the States so a donation is probably the best way. Please contact me so I know how to proceed.
    May God bless and be with you all.

  10. Hi Carma, I am praying for Anaya and your family my niece Camillia Courts is one of the photographers for Helping Hearts . My heart goes out to you may you find comfort in the Arms of Jesus.
    Ella Holmquisst

  11. Sending warm thoughts your way. I wish I could help with your transportation issue, but I don't know anything about it. I hope you find someone to help you out soon.

  12. I am so sorry to hear of anaya's struggles. I think about you and your beautiful daughter each day. My thoughts and prayers are with you.


  13. We have never met, but I shared your hope and marveled at your strenght, and suddenly this little angel became part of my thoughts and prayers, as part of my family. Cindy Cere has said everything I could not express on my own: " I wish you strength and hope; We are all thinking of you. Stay strong, as right now she is where she should be, in her moms arms ♥".


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