Discharged! After 503 Days in Hospital.

Day +65 Discharge Day:

This is our tough lil cookie on Friday, May 29th, 2015 ready for discharge at 3:30pm. This is what STRENGTH looks like after 5 major surgeries, 226 days straight of isolation, 277 straight in hospital from birth, hundreds of IV needle pokes, hundreds of procedures, Septic Shock, sepsis attacks, chemo, a BMT, recovery after recovery, her first year and a half of life... fighting for it. And we're never looking back. 

Aaaand I'm beat... Just dog tired. After being in hospital that long, it's takes a huge amount of organization for all of Bella's doctors and specialists to be ready to send her out the door. It took me 3 days to load up her hospital room stuff and transfer it to our RMH room. I'm so thankful my mom was here for the whole week to help me with Bella and everything during the move. From Wednesday to Friday I barely had time for Bella between moving and meetings. 

But someone made a very special visit to Bella's room on Friday to see her off...

GusGus came by Bella's window after being MIA for a couple months. :) 

Day +64: Some fun rowdy moments before Bella's last bedtime in hospital. 

Day +65: Discharge Day

By the time Friday came around we were ready to go in the morning. We had some waiting to do on Bella's Respirology team. She needs just a trickle of oxygen at night (.25L). Even though her overnight oximetry test showed she didn't need it, they didn't want to take a chance at that test being a "one-off" so they decided to have her take the O2 to be on the safe side. Her lungs have taken a huge beating over the past year. So it is pretty remarkable they don't need more O2, given what she's been through. So we are fine with her having it at night to keep her lungs strong and help her grow. Her whole body is still in recovery and they don't want her lungs having to work too hard at all. 

I made sure to leave this note for Bella's nurses and medical team on Unit One so they can follow her progress out of hospital. It's quite a bond the grows after 5 months of care from everyone on that Unit. We'll never forget all the love. And we'll stop by for visits. The BMT clinic is just down the hall from Unit 1. Also, not to be negative, but instead prepared... I need to keep in mind we could get admitted to Unit 1 again. If Bella spikes ANY fever or has any issue that requires her to have IV antibiotics, we need her to stay on Unit 1 again. 

Bella's Child Life team and nurses all came by her room Friday and sang her a Happy Discharge Day song. It was so so sweet. They gave her beautiful gifts, balloons and a special certificate. 

Bella's counts have been great, by the way. Her Immunologist and BMT docs are so happy with how she is doing and say she is right on track! 

Timeline: Her next major immune system blood test check will tell them more on her Day +100 (July 3rd) Ya I thought it was July 4th, which would be way cooler, but it actually falls on July 3rd. Anyway, we'll know more about Bella's ability to come off of protective isolation protocol, how her new immune system is strengthening and growing, where we can and can't take her, etc. after that. So we'll have a more major update in July. 

Saturday morning books with daddy after her first night stay out of hospital. 

It was quite a shock for her and me. I was not prepared for how hard that first night was going to be on her. She was quite scared. Especially after knowing Bella was such a good sleeper in hospital, she slept through diaper changes, beeps, hallway lights and more. So I didn't realize she would be up 4-5 times in the night at the Ronald House. She would cry out, "momma" and it broke my heart. She settled and would try to sleep, but was very restless that night. Saturday night was way better, she didn't wake up at all. :) Hopefully she's a bit more settled in now and sleeps easy again tonight. 

Things are going to be a lot more busy for me now but at the same time a lot more lonely. Regardless, I have to adjust to all of this aswell and I myself am quite scared.  Although I won't be crying out, "momma!" I have been crying a lot. I'm not stressed but miss my hubby more than ever before. I think I have been  crying since he left for Swift today, but I know everything will be ok and this is just a huge adjustment for me too. I am one-on-one with Bella now. I don't have to see 20 doctors/nurses a day anymore... but at the same time, that may mean I see no one at all... And it's so lonely. Hence why I miss Lyle so so much more.  But I have lots of good mom friends here at RMH, just need to make sure Bella can be safely independent in our room while I take breaks with the baby monitor in hand.

I managed to be as prepared as I could for this huge change/discharge for Bella so I did what any "Kyla Thomson Teacher" would do... I made a binder.

With Bella having timed meds and 8 different ones in a day, I need to be organized. I did get a compliment from our BMT nurse, so that helped me feel less nerdy and more constructive. I know many would ask why I don't try using my phone or an app, but to be honest I've looked and asked around. There really isn't a good one for a lil one as complex as Bella. Also, my phone may beep off and I just forget about it if I don't hear it right away and when we go to clinic visits, a binder is way easier for her doctors to look through. All in all, for Bella's feed changes, many meds, weekly procedures, and clinic visits, this tracking binder is the cats meow. I designed it myself and will make a video of how I use it for my Hospital Mom Hacks YouTube channel to help other parents in similar positions. 

I also made sure to make our RMH room ready for Bella as well. This was what I had to do on request from her doctors: 

We have a cozy little room at RMH that is going to suit us just fine for as long as we need to be in Calgary. Bella has lots of play room by our window and we will rely on many warm calm days to get outside a lot. 

RMH has a beautiful back yard play area that Bella and I enjoyed today after daddy had to head home. 

We also got to spend a beautiful Saturday with Lyle's parents and his mom Cheryl took this beautiful picture of us by the duck pond.

I'll be sure to keep you all updated on Bella's clinic visits as those are the next chapter of her life. For now I think they will be 2-3 days per week, that we zip across the street to ACH, go to the BMT clinic, have her doctors check her out, take her blood, and the rest of the days will be spent with discovery and new adventures around RMH.

So happy Summer is here.