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 narcotics....wow 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)...my 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 @ gmail.com and I will respond as soon as I can.
Thank you and God Bless