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Friday, January 16, 2015

WE ARE HOME on day 11! Here is some notes that I wrote during our hospital journey........

I've written this post at night, usually in the dark completely exhausted beside my daughter's hospital bed. I didn't have access to the internet to post any updates except for my phone. I wasn't going to try and write a blog post over my phone being exhausted with one eye open. So this post is an overview of the past week, not edited, lots of details and thoughts are missing, just a few notes I would write at night when I could. Now that this is posted – it means we are home and our daughter's recovery begins......”

Day before hospital:
Heading to the hospital early was not only a great idea, it turned out to be a great adventure. We visited friends along the way. My daughter and I went bowling, we went out for dinner and we walked around the beautiful lit Parliament Buildings. The Parliament Buildings were still lit magical for Christmas. I've never seen the Parliament Buildings lit for Christmas, it was a nice touch.
Emily's biological great grandmother came over from the mainland and she spent a few days with us. I truly enjoyed getting to know her better. She was a great support and clearly loves Emily lots. (Below are some pre-hospital pictures of Emily and some selfies of us both before the big surgery day)

Day 1:
The first big moment I had was when I accompanied our daughter to the OR room. I stayed with her until she fell fast a sleep. If you haven't experienced bringing your child to the OR, it's definitely one of those moments where you feel you're handing your child's life over. Watching your child take their last breath is what it looks like. I left understandably in tears. Approximately five hours later I saw our little girl in ICU. ICU (Intensive Care Unit) is a daunting place. We were there for two and a half days. However it was the best place for Emily to be. During Emily's ICU stay my father surprised me from Campbell River. My heart raced when I saw him. I guess a 42 year old needs her parents too! Emily also had two more visitors that we adopted into our family. A Grandma, and an Aunt. Adoption can take all forms. We don't need a piece of paper to legally extend our family! (Below is Emily in ICU and Grampa Gary's surprise visit)

Day 3: (I think) Day 2 – visitors above in ICU
They had to move Emily out of ICU early due to the lack of beds. This transition went sideways. They had to take her off of the epidural pain management and transition her to morphine. She started hallucinating, screaming, yelling, crying and she became combative. I've never seen her like this before. They had to sedate her until she fell asleep. This was my moment two. We were asked to leave. I cried. Great Grandma took me down to the cafeteria where I sat and rejuvenated with a peppermint tea. Also on day three Emily began a fever. She also started heavy upper body movements and facial twitches. I watched these movements happen all day. Every time I seen a new doctor, or a new nurse on shift I would ask, “What is causing this!?” Medication! Side effects! “Is this trauma and stress related!?” Finally approximately fourteen hours later it was confirmed Emily was having ongoing seizures. This was my next moment. Moment three??? I went outside and cried. I couldn't help to think about how I just sat there watching her having seizures. What an idiot! I just wanted to scream. Yell. Swear. Start an another earth quake during this moment. It was a mixture of many emotions. After having this temper tantrum in my mind, it was over. I was good. I accepted and went back to my daughters bed side.
Day 4:
Emily was still having seizure like movements. She was still struggling with a fever. She hasn't eaten nor has had any fluids. The tests began. How am I doing? Honestly, I was tired and overly emotional. The moments that I have come and go. At least I was still in control as much as everything was out of control. “Momentary breakdowns” I call them. I started thinking about how I was grateful that in the light of everything, things aren't any worse. I am strong. My daughter is strong. During the morning of day 4 while sitting beside my daughters bedside waiting for tests to begin, I looked outside the window. I never pay attention to the sky very often. The sky was filled with a light layer of clouds. I could see glimpses of blue, then off to the right I could see a rainbow above the hospital. I thought....maybe a sign!? Regardless it filled me with peace. A new day. My heart felt relaxed. During day 4 some tests came back. The EGG was good. She does have a UTI infection but controlled with medication.
Day 5:
Happy Birthday to me! I'm now 42. My husband came down to visit. He delivered cards from our kiddos. It was an emotional day for Emily and Daddy. Emily cried when she saw her Daddy and Daddy was strong holding his in. Unfortunately throughout the day Daddy witnessed a broken IV, blood everywhere, plus witnessing the diaper changing where Emily is propped up on her side. (She screams) Plus the transfer from her bed into her chair is amazingly hard. It was hard for Daddy to see. For me, in an eery way I've come accustomed to the challenges. Day in, day out and throughout each night I'm with our daughter nursing her. I was once this emotional mother, now I've become this stronger mother more in control of her emotions. Unstoppable – at least in my mind most of the time I think I was. When Daddy left it was even harder. Emily was very upset all night. (Below I'm holding up a beautiful birthday card with all my children's pictures and wishes on it) 

Day 6:
On day six some of the tests came back positive for Ecoli. Ecoli was found in Emily's urine. So they had to find medication that would be compatible with the seizure medication, and pain management. They pulled me aside to explain that if it spread into her bloodstream it would be become serious. So that was the next test. During day six my sister and a long time friend visited. During the evening on day six, one of our EA's visited. (Now a friend) Having visitors is so nice because it breaks up the days for me. Days are very long in the hospital and it feels like an isolation. When I leave my daughter's room for even ten minutes, I am surprisingly reminded that there is a world out there. There is people! We have been at the hospital for one week, and in a weird way not only have I become accustomed to the hospital, it feels like we've been living here forever. Forgetting that the world even exists sometimes. To end day six, Emily was growing a new super bug but the antibiotics should curb's from ESBL. A prolonged hospital stay.
Day 7:
It was like a party in here. A Paediatrician, some residents, nurses, an OT, PT, a Dietician and the pain management team came in explaining that Emily has one of the most resilient Ecoli UTI's and while picking up that super bug from ESLB that we had to stay at least another five days because she needs to stay on heavy IV antibiotics. (My apologies if I'm not making any sense) I am exhausted and I am writing this beside Emily's hospital bed in the dark. I do feel optimistic and positive today knowing that everything is getting figured out and for me, just hearing maybe another five days was music to my ears. I thought I would be upset – however I know in my heart while I write that this is already a memory, and we are closer to home to start Emily's recovery. During day seven, Emily and I played with toys. Well...I played with the toys while Emily laughed. It was joy to my ears. A wonderful lady by the name of Cindy came by today delivering food. She lives in Victoria and we only met a few times before. I had another moment. I don't know what number moment this is, however it was a good one. I'm just in “awe” of all the support we have received from others. “Thank you”
Day 8:
We are in better spirits. Emily was in her wheelchair more and we circled the Paediatric unit numerous of times. Every day is an improvement. Every movement is a challenge however I'm starting to see glimpses of that sparkle our daughter has. When changing her bandages, we noticed that her right hip incision has opened up. Hopefully (fingers crossed) that no infection starts. While Emily is happier and seeming to feel much better I'm hoping signs of home are in our near future. (In this picture below we were very exhausted)

Day 9:
Night of day 8 seemed endless and day 9 started out rough with blood work and the lack of sleep. Then they had to change her IV to a different hand because her vein was tired in the opposite hand. Emily also had her first real sponge bath lowered in a lift. Then we were allowed to venture off the Paediatric floor so we went shopping at the gift shop. Shortly after we went and visited a friend that just had surgery and was located in a different area of the hospital. I even managed to have a shower. There is a parent room located on the ward. I've come quite comfortable walking around in my Pajama's and helping myself to whatever we need. It's a weird feeling - feeling comfortable, like we've settled in. I even climbed into my daughter's bed where we took selfies. What a roller coaster of events and emotions this has been. I have to say, it's one of the hardest experiences I've been through. And believe me, I've been through many. Now onto Day 10.
(Reflection on night 9 - “Broken smiles” It was so difficult for our daughter on so many levels. Every day there was a new challenge. Even replacing the IV was an attempt after an attempt. A simple diaper change is a huge ordeal. As her mother I stood by her side remaining strong with a smile on my face. Inside I had broken smiles. I kept wishing, “Please let this be the last attempt with that IV site!” I felt like I was begging inside all the time. After every ordeal my daughter would politely say, “Thank you” in her petite afraid little voice. I knew that her “Thank you” was her hope everything was over. Gently stroking her hair, while telling her it was “ok” I knew it was never really “ok” It just wasn't. Every day she would smile. Every day her smile became broken as mine did inside. It was challenging for me to know what was happening next while she innocently trusted me by her side. It definitely felt like broken smiles)
Day 10:
The surgeon came in and asked if I was comfortable bringing our daughter home tomorrow!? Of course I am! After all, I have a first aid background, I am a mother of sixteen, and I'm basically someone that could easily slip into any professional position! Anything I didn't know, I know now after being here almost two weeks! We are ready! We are positive! We had all our hospital moments! Our family at home has been preparing for our arrival and even a little over board with decorating Emily's room with Elmo balloons including a life size blow up Elmo! It's time to start recovery at home! I know our moments aren't over but that's why I always call them moments, and the only way to move forward is knowing we live in the now, and tomorrow is a new day! So on day 10 I'm getting excited......I want to take this opportunity to thank everyone again for their support. Even with reading my blog, or my updated endless ongoing posts. I find writing and sharing is the best therapy. I appreciate my readers and supporting our on-going journey at sweet sixteen. Tonight I am confident it's our last night at Victoria General. I AM SO EXCITED! And I can't wait for our daughter's smiles to continue without any breaks in them!
Strong together

Day 11:

Emily finished her IV medication. We packed and we were discharged! The ride home was difficult. And it was an emotional homecoming. I'm very tired.......

My husband did amazing while we were away. We are a team. #strong #together #forever I must say I have the best family and supportive friends ever! Now onto a new day.......yay! 

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