Friday, May 20, 2011

Transfer Day of Chaos

How can I describe to you the feeling of floating in a sea of uncertainty? For the past 10 days I haven't known what our future plan is, when we will go home, whether or not we will be transferred to SunnyHill Children's or Canuck place. Whether or not Anaya will live or die. It has been intense, and yet there was no day as intense as today. Let's call it "Transfer Day".

Basically Anaya is stable now. The new medicine, Keppra, has quieted her seizures and something has calmed her apneac spells. She's breathing now as she did before - still laboured, still wet or dry depending on the day - but normal for her. We had what felt like tens of professionals in and out of our hospital room all trying to make a plan for Anaya, and yet there were several moments of uncertainty and miscommunication. One person said we were going to Canuck place, another said we were going to SunnyHill, another said we were staying in hospital. I was just wide-eyed and overwhelmed. I felt like saying "Excuse me- Hi everyone, I'm just gonna pack up and go home now ok?" I actually did say that at one point and was convinced that the right plan was to go to SunnyHill and have a proper seating assessment done - even though it meant staying there over the long weekend. The Dr. preferred to see Anaya leave the hospital while she was stable in order to keep her healthy. There are several nasty viruses going around.

So we packed up everything and Anaya and waited for what seemed like hours for the Pro's to tell us what to do and where to go. Then we headed for SunnyHill. Sounds nice right?

I left Anaya in the Van with Brent and walked into make our arrangements and find our room. I was welcomed warmly and gently by some very nice women and taken to Anaya's spot in a dormitory for disabled children. There were three beds, 1 padded jail cell of a crib, and a hospital type crib for Anaya. There was a chair next to Anaya's cell for me to sleep in. I didn't even see a spot for me to put my luggage or her clothes really. That's when the panic attack hit. My vision narrowed to a hazy tunnel and the woman showing me the room was saying something...something...I couldn't make out her words. I shook my head. "NO!" I said and spun on my heel and left the room.

"What do you mean?" The doctor asked.
"We can't stay here" I said.
"Why" The doctor asked.
"I just can't! The hospital said your rooms were like theirs. I was told Anaya and I were going to have a room to share because I have to stay with her 24 hours a day because you guys don't have 1 to 1 nursing support. I can't sit with her in there for a week. I just can't.

My heart was pounding, my chest was tight. I was solid and firm in my stance. I'm certain that some kind of panicked fire was blazing from my eyes and I told the doctor.

"I think we'll just go home now." I went outside to the Van. Brent was unloading Anaya's stuff. "You can put all that away," I said "we can't stay here." He looked at me with a quizzical expression, said nothing and started putting the stuff back in the van.

Grant arrived from Calgary to take Solara for the weekend at that moment and he said "What's the plan?" I almost cracked up. Everyone was looking at me. Brent from the rear of the van, Solara from around my waist, Grant from the right.
"What's the plan?" I repeated...and tried to make my mind think.

I called our hospital unit and spoke with our head doctor. Dr. Jen. She's awesome by the way. I explained that I was uncomfortable with the way the accommodations were set up, discomforted by the feeling of warehoused disabled children. I told her I had decided to go home. Gently she convinced me that Anaya's seating assessment at SunnyHill was too important to miss. I agreed but stated that I couldn't stay there. Nor could I leave Anaya there. Ever. The very thought makes me have terrible pain in my chest and a desire to scream. I'm in no way knocking SunnyHill. Every place has it's purpose. I just have a fear of confined spaces and maybe I'm just too used to having my own space with my precious little love. I'm used to sleeping - at least a little bit. I'm used to brightly lit rooms with flowers and music.

We came to an agreement. I would check in at SunnyHill and then take Anaya "Out on a Pass" for the weekend and come back for her to be assessed on tuesday.

I called my close friend Natalie Degoey from the hallway.
"Nat? Me and Anaya are coming to stay at your house for the weekend. Just me and her and the dog. I'm sorry for assuming this but we can, right?"
"Of course you can, Mara." Natalie said.
"I'd be offended if you didn't assume you could stay at my house!"

So we packed up Anaya again and headed to Burnaby. I was in hyper anxiety overdrive. If I were a chimney I'd be puffin up a storm! My emotions were numb, my mind was empty yet agitated, my driving was erratic. We arrived at Natalie and Geoff's house in one piece. Geoff started making food and I tried my best to organize all of our stuff that we unloaded from the van. I separated it into stuff that Brent can take back to Nelson and things that I need to stay here with Anaya for up to two weeks.

That being done I ate. Brent sat with the baby for a bit and then went out to meet a friend. I slowed down by checking my facebook page and answering urgent emails. I've had so little time for that lately.

I told Natalie that I wanted to write a blog post and asked her to hold Anaya. She happily and cheerfully held her, suctioning her every few minutes as she is very wet. Natalie actually had fun with Anaya and the Suction Machine. She would put it in her mouth and Anaya would bite down on it and close her lips, and Natalie would laugh her bubbley heart out. I smiled and kept writing. I stopped to take a picture for you to see.

Tomorrow I need to find a vehicle to get Anaya to her appointments and to get around. I will also need some volunteers for the next week or so who want to give Anaya and I a hand - I can't drive alone with her legally - - or morally. Someone either has to drive or sit in the back with Anaya to ensure she's ok and doesn't need to be suctioned and isn't turning blue. I would also like to hang out with friends that love me and would like to spend time with Anaya and I. We have time. I'm going to also be doing computer work and web design for a few hours each day because I have not been able to focus well on my work and the bills still need to be paid. Thank God for the help that Anaya's supporters have been giving her towards our needs and her needs!

If anyone would like to provide any additional help or support to Anaya and I while we are alone here in Vancouver (Burnaby), please e-mail Natalie deGoey at and she will help to organize, as I have NO NURSING SUPPORT AT ALL and will be 24 hours 1 on 1 with my little love.

I should tell you that Anaya did not seem to take much notice of the commotion going on around her. She had a decent day, although she struggled a bit with wet secretions. I hesitate to dry her out too much though - because a bit wet is better than a bit dry. She is content. She had alert moments and certainly enjoyed playing the suction game with Natalie. She has some pain but we've been giving her painkillers to help make her life more comfortable. I can't stand to see her in distress.

I'm certain that there is still so much more to say but I've been writing for well over an hour now and I think I'm tired. LOL.

Love to you all. Thank you for keeping us in your thoughts and prayers. Thank you to Katie and to Seana and to Natures Path and to Natalie and Geoff, to the Dr's and nurses, and cleaning staff, and the friendly maintenance guy, thank you to the lady that made my coffee and the woman who asked to pet the dog. <3 - Camara


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  2. Oh Camara, that sounds like an exhaustingly emotional day. Wish I could sit down, have a nice glass of wine with you while I hold Anaya and have a good giggle with you ... sounds like you could use a bit of that :) I am glad you have a hospital pass to stay at Natalie's place (she sounds like an angel herself) and I hope you get all the help you need this next week. Thank goodness that the new medicine is helping Anaya with her seizures and the apnea - I hope it also allows you to sleep well at night. We are sending much love from Nelson, please call if you need some help from here. xox

  3. Oh goodness, what a day you all had! I'm glad to hear you are nicely settled in for hopefully a relaxing weekend with friends!

    Please forgive my naivety but, why can you not drive alone legally with Anaya?

  4. I can't drive with her because I would need to put her in the front seat in her car seat so that I could see her and suction her if need be. I can't do that when she's in the back!!

  5. I am so happy you have friends like Natalie and Geoff and it's great to see the Anaya was playing with her in her own way....hope this next wk or 2 goes by smoothly for all of you, especially Anaya. I am sure she will love being in a more relaxed place as well

  6. hi Camara. I am a friend of Melanie's. I live quite close to Sunny Hill in Vanc. I work fulltime so unfort I can't assist you during the day. I would love to help you in some way however, even if that means bringing you some dinner for your family or a cup of coffee. Please let me know. I am Ness Tentes on facebook. xo

  7. I wish that you didnt have days that were so overwhelming as a part of this process. I know that in order to feel the good, you have to feel the bad...but damn. This is just TOO much sometimes. The anxiety attack alone is enough to knock a lesser person to their knees for the rest of the day Camara, but not you. It might feel like it sometimes,but you arent in danger of giving up, having "to much" thrust upon you at once or failing in this in any way. You are too strong, and have too many people able to help even if only for a little while. I know you're having days that are hard to wake up face each days battles (IF you sleep at all) -try to keep it to one day at a time and really value each battle you win for the triumph it is. You are accomplishing AMAZING things. Being in the States makes me feel helpless, I wish I could DO something there, because even though we've never met, I know if roles were reversed you would help all you could. Your family deserves so much better from the world.

    Natalie, you are an amazing friend - thank goodness you are there and willing.

    much love to the four of you
    angela laroche

  8. Thank you Camera for taking the time to post an update for all of us. I have been thinking of you and your family so much over the past few weeks, hoping and praying that Anaya pulls through this and that you can return home soon.
    I wish there was more I could offer you in support but being in Calgary makes it a little difficult. I can only imagine how you are feeling and I wanted to let you know that I admire what a strong Woman and Mother you are.
    Is there a mailing address that you can receive from??

  9. I wish I lived closer, I would help you out in a heartbeat! Prayers and love to you all, you're doing a wonderful job mama! Kiss little Anaya for me!

  10. I with Kim...wished I lived closer...I am a nurse and an ADVOCATE for children like Anaya...shes a precious angel! If there is ANYTHING I can do, ANYTHING AT ALL please do not hesitate to emails are and my cell phone is 570-242-7729. ANYTHING I can do!!! SERIOUSLY! love, hugs, kisses and prayers to you all!

  11. Wow, that was quite a day! Glad you and Anaya are settled into your home away from home! Enjoy the rest, and a real bed! So glad that Anaya is back to feeling like herself. Good luck with the seating assessment next week.

    I wish I was closer to help you out on a day to day basis, but if there's anything I can do for you from here to help with your work so that you can have more time with Anaya, you let me know!!

    Much love to you both! XO

  12. Thinking of you so very often throughout the day. I wish i lived closer to help, Ontario is so very far. I cannot possibly imagine how you are feeling but want you to know that i admire you so very much. i am not half the person you are. Love to you all....kisses to Anaya

  13. Thanks for still taking the trouble of updating us about your little love :)
    You are doing your best...I am a mom of a 9 year old girl,I don't think I am as brave as you are:)
    A bigggggg hugggg to the bravest mom nd daughter duo!!!

  14. Sounds like you had a really tough day - you are so strong and brave and doing a great job for your little angel. I'm a nurse and one of Anaya's milky moms - I really wish I lived closer so that I could help out. I will send you my thoughts and prayers though.

  15. I' ve put the word out to friends in Vancouver I wish we were on the mainland to help. Sending love and thoughts to the little girl who helps us count our blessings and her strong family.

  16. I am amazed at what you managed to do that day. I have also stayed at children's and having a bed in my daughter's room was so important. I can see why you didn't want to stay at Sunnyhill. I am so happy that you managed to come up with a plan B that works so well. Take care.

    I stopped by on Tuesday and missed seeing you and now we all have colds. Once I am sure that we are perfectly healthy I will email you and see if you would like a visit or ride.

    Emily in Vancouver

  17. Wow! What a strong mama you are! I just <3 you and your family. My thoughts and prayers are always with you. Wish I lived to closer so that I could help out with transportation and just giving you a little break!

  18. Have you tried to get into Ronald McDonald House? They are close to BCCH and have volunteers to help. They also have 2 vans that you can sign out. If your vehicle continues to cause you some problems. Volunteers come and make dinners for you and you can stay there if you have an appointment with BCCH


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