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. 

It's the Little Things

Bella has had another great week. There have been a couple bumps in our week but it's the little things that are making it wonderful. 

Those Eyes Though 

Day +55

The bumps: without a break in between, Bella went from the IV antibiotic: Piptaz to the next antibiotic: Vanc. Unfortunately this meant longer hook ups to the IV pump and lines. While on the Piptaz she had teething fevers. But because they have to be extra careful they kept her on the big antibiotics incase there was infection somewhere. There never was, which is so good. But the day she was done that antibiotic her results from her urine sample came back showing bacteria. So possible UTI, they had to start treating it. So on the Vanc. she went. Hooked up to IV lines for 3 1/2hrs a day now. Sigh**  Its frustrating because  she doesn't have a UTI, she shows no symptoms, but they can't take any chances because of her fragile growing new immune system. When they tried to take the clean urine sample, every single one got soiled... Cause girls poop very close to where they pee. So 6 pouches later they think they had a clean sample. Well... That one showed the bacteria in her urine, natural flora gut bacteria we are supposed to have... in our stool, not urine. So they had to treat, just incase the sample was true. 

Long story short... 7 full days on this IV med, no possible discharge until after. 

Day +57

Another bump: Bella's tests results show she is still positive for Sapo (diahreah stool virus) and Entero/Rhino (common cold) virus.  Although we were so excited to announce she cleared the Rota virus, it was quite upsetting to hear that she still has these other 2 viruses. But, they are still a carrier type, she shows no symptoms, she's not coughing or sneezing. Just that her system hasn't been able to completely clear them yet. 

We are still waiting to hear about her 2 major blood tests that were drawn this past week. I should know more by the end of this week. 

Bella's April/May Post BMT Calendar. 

Her counts are shown on Mondays and Thursday's. Can you tell I like decorating it with stickers? Ha ha. Bella and I have "Sticker-Time Play" everyday for her calendar. She points out a sticker in her sticker book that she wants and plays with it. I add stickers to her calendar. 

Day +60

It's the Little Things

That make you smile, take a moment, and cherish life. 

1. Her first time on a swing.  Bella's a year and a half old and just this past week was able to enjoy the fun a playground swing brings. 

2. We get outside on a daily basis now.

3. She loves the slides too.

4. Bella is tasting food again and using her sippy cup more!

Day +55

5. Bella is great at crawling, bear crawling, but prefers to walk holding on to my hands. She's crawling over physio blocks the size of small suitcases, but prefers to stand, step and walk.

6. She hugs my neck and kisses my cheek.

7. She has not been puking! 

8. No fevers since the 17th.

9. She's up to 2 one hour bolus feeds in a day.

10. I had a group of "20-Something's" ladies request to see my wedding ring set while out for supper with Lyle yesterday. They just thought it was georgeous. 

11. Bella's down from 12 meds to 10.

12. Lyle's sister Melissa and family (the Wiley's) had their church have Bella as a part of their Mass today. 

Hospital Mom Hacks

I'm continuing to add to my YouTube channel and very happy to be as stress free as I am, to keep up with it. I had a great meeting with the RMH communications director and she helped me understand a lot more about how I can progress with my channel and keep it at its best in order to help as many hospital parents as I can. We are working on more plans to promote my channel for family centered care through the Ronald McDonald House. I'm very happy with the progress and will keep you all updated with what's to come. For now, please feel free to share my channel info with whoever you think it may help. I have 14 videos now. Here is a link to my most recent one: 

http://youtu.be/HJfNlL0jnE4 

Updates & My YouTube Channel!

Yes! You read that right! I started a YouTube channel! I'll talk about that in a bit, first, some updates on Bella. :) 

Day +54 (Today)

Bella has 2 very important tests coming up, one was done today. They are blood tests from her Immunologist and one from her BMT team. Both tests use her blood for a "panel" of results that they look at. One is looking at her Lymphosyte counts and the other is her Immune Recon Panel. As I had mentioned in an earlier post, Bella's current blood counts and results are very good, so good that they show signs that have her doctors thinking they may be able to see her T cells and Bcells functioning together already. It is usually too early in the transplant process to tell this right now, (in most cases 2 months too early) but the doctors are going ahead with testing it now anyway cause they may just see the evidence this early in Bella's case! So that's exciting rare news. 

I'll share the exact results hopefully later this week. 

Day +45

So Bella was officially off of all IV meds for post transplant and doing very well. Recently because of on and off low grade fevers at night for the last 2 weeks, she's been on IV antibiotics. Not a big deal but basically, because the blood cultures are coming back negative (thank God!) they are pretty sure it's been mainly teething fevers. They just have to be so extremely cautious, that for any fever over 37.5, they automatically put her on antibiotics. She is still infection free, no bacteria, and very happy and energetic. Them teeth are pop'n through tho! 

Day +45

On a sad note, Bella's eating has gone down hill. I'm really upset about it and quite often feel really deflated about it all. Our OT has been so good and is helping Lyle and I help Bella with her feeding, but after all we have tried, I'm just staring at a brick wall with this right now. All the foods she loved to naw on before, she won't even let me put near her anymore. We've been told to give her a break from trying everything so that we arn't 'pushing' her and making it worse. It's been a solid 2 weeks now since she won't even accept or hold food that I offer her. We'll see how this week goes. 

Day +54

Recently Bella's Gtube feeds have been going very well and she is back to tolerating 1hr bolus feeds. She hasn't been there since January I think. So her bowel motility is really good, she's not sick from too much too fast and she also has an anti-nausea med that is really helping her aswell. One of her meds (Cyclosporn) causes her to feel really icky so the regular use of this anti-nausea med eliminated that right away! So now she can handle 90mL of formula in 1hr that means she's off tubes more often in a day aswell. And she's not getting sick from it being too much too fast. So far her system is doing good with 2 bolus feeds in a day. She still has continuous feeds running at night so she gets her required amount of nutrients in a day. 

Day +53 She love love loves her sunglasses.

Seeing as these 2 important blood tests will show the doctors more about how awesome Bella's new immune system is building, that means they are talking more and more about discharging us. They also did more recent tests to see if she is still hanging on to those 2 viruses. Hopefully not but I'll find out this week. However, the RMH has talked about a special isolation protocol we can follow with Bella that is promising. So our chances of being able to stay at RMH (when we are discharged from hospital) are very good now. It will actually be similar protective protocol to what we will have to do for our house when we get Bella home home to Swift Current. So we will get some practice here in Calgary RMH for a few months first. 

My YouTube Channel! 

Man! I have really up'd my tech game well, in the last year. First I learned how to blog and now a YouTube channel! So it is called "Hospital Mom Hacks" if you search it on YouTube. I currently have 13 videos on there. I'll try to post a link to one of my videos at the end of this post. 

Here's why I did this: 

It's the right time. I felt there was a need. I wanted to help. 

Those are my main 3 reasons. For months and months I've sat for hours in Bella's hospital room and thought, "God, I am here for a reason, we are here for a higher reason. My energy is focused on helping Bella, my time here supports her, that's number one.  But this extremely rare and unique circumstance we have been in has a higher calling... I know it."

  For a while (what felt like forever) I just knew I needed to use this time in hospital for a greater purpose, there had to be. I didn't want this 2 year experience to just be That, and that's it. I just kept feeling like there has to be something I could do to help other parents in hospital with their little ones, giving what we have gone through. I finally thought to make videos on YouTube about tips and tricks I have learned. This would make it easy to share with other parents in hospital. Knowing nothing about YouTube, Lyle helped me a lot and we got the channel all set up. I'm still quite the rookie, saying the blog address wrong, and "um" a lot. Ha ha. But now that I can start to work on sharing my videos, all I want is to help some other mom or dad out there. 

This is the article one of the coordinators at RMH put in their newsletter! I of course wanted to let the families in the house know about my channel incase my tips could help them, so our wonderful RMH coordinator put it in the weekly newsletter! She also thought it was such a wonderful idea that now, I am set up to have meetings with the Communications Director of RMH because they want to promote my channel! How awesome is that. Now I'll be able to help more families faster. I'll keep you all updated on my channel's progress. :) 

Here is a link to the first video I added to Hospital Mom Hacks: 

https://youtu.be/hcWt-l5-8_k

Enjoy! 

And share Hospital Mom Hacks with anyone who may need it. I'm also open to ideas for videos aswell. I just want our experience to help in anyway, and hopefully make other hospital parent's lives a little more stress free. 

Updates & Mother's Day Fun

Bella has been doing so well. As you'll notice in this post I have a lot of good news to share. 

Day +40

We have been getting outside a lot! It is the safest place for Bella to be at this point. Bella's counts have continued to remain stable and are looking great. Her ANC is staying well above 1000. 

Day + 44 (walking around UofC campus parks)

As of today (day +45) Bella is officially off all Meds given by IV! This is so awesome! We can spend all day outside if we wanted to, no IV pole to follow us around. Now, her central line is used for mainly blood draws which they are usually doing 3-5 times per week to check her levels and counts. Now that all her meds are given "orally" (directly to her tummy via her Gtube) it's been a little harder on her tummy. But we are doing our best to space her meds better throughout the day and give her tummy breaks from too many at once. 

Day +45

Can  you tell she's been in hospital for a while? She is content with the mask while we go down the hallway to outside, and if you look closely at her hand... Yes that is her med syringe. She likes to play with them, a lot. 

It has been 1 month and 2 weeks since Bella's BMT. And on Friday it was exactly 1 month since she engrafted. So far we haven't heard anything from Bella's donor, but that's ok. Still a lot of restriction on contact right now. I ask our team of she's called to check on Bella's status (which she can) but our team has no details to relay on that at the present time. I really do hope we get to meet her in the future.

Some rare good news: Bella has not needed any IVIGs in the last few weeks! This is rare, since it it common for kids after transplant to need this immune boost for the first 6 months post BMT. But Bella's body is already maintaining its own IGG adequate level! This is a very good sign meaning that her new cells are doing great. 

Bella's next look at her new cell function and how her new immune system is working is on day +60 (end of May). This is called her Immune Recon. Panel Test. This will give her doctors a real good look at how her cells are functioning. After this test is when they will think more about discharging us.

Lyle posted this on Facebook this week and my response made for quite a good joke: 

My response: 

LOL.... Ahhhh.... Yep. 

So seeing as we are closer to discharge, our nurses are preparing me for Bella's Central Line care! Yep, this will all be done by me when we are discharged, so I gotta start practicing now. I have already done her sterile dressing change, cap change and this coming week I'll be learning how to Hephrine Lock her lines. 

Like I said before, I bet I'd do a pretty good job at challenging a RN test if that was possible. Haha Anyway, Bella needs to keep her Broviak IV (in her chest) for quite a while still. They will continue to do a lot of blood work for months to come. And heaven forbid she gets sick, but these lines are life savers when needing to start Antibiotics ASAP. It's quite nerve racking to take on her full line care, but hay! I'm up for the challenge, bring it on! The dressing change involves cleaning and securing the line on her chest. The cap change involves untwisting the cap at the end of her line, the line that leads directly to her heart, cleaning around that area and putting a new one on. The Hep lock means injecting this, only so far into her line in a certain way so her line stays accessible and doesn't clog when they need to draw blood. 

Mothers Day

Day +45

Today we went on a super long walk with daddy too and fed some momma n baby geese. They were so cute! Bella is loving being outside more. She dances, bounces and babbles in her stroller. She loves to get out and walk as well. 

This is what I posted on FB today. It weighs heavy on my heart, knowing  what heart ache this day can actually bring. And I hope it's transformed into peace. A beautiful friend of mine (Bradie) sent me a good read today for all the strong hospital Mommas. It's is a good read: 

http://uofmhealthblogs.org/childrens/hero-stories/to-mom-of-child/22562/ 

Mothers Day Spa Day & High Tea at Fairmont Paliser Hotel, Calgary. 

The Ronald McDonald House treated us moms to a beautiful spa day last week. They spoiled us and it was so sweet. 

We took a Limo to the most beautiful hotel in Calgary.

We were treated to the entire spa pool, sauna and hot tub area, and high tea in the Historic Rimrock Room restaurant with the original fireplace in tact and untouched. We were served a beautiful lunch with the tea and then wisked away for massages and pedicures! 

The egg pic is my first taste of Caviar. 

Happy Mother's Day to all you lovely momma's that I know in my life. 

Free Verse

I have to admit, I have been truly blessed with how well Bella sleeps. Given, she has spent 99% of her naps and nights ( ny nys) in hospital, she is such a good sleeper. 

Recently I have had a few nights with Bella where it 'all just hits me,' and I remind myself I need to take these moments in. I finally had a chance to write some poetry the other evening after Bella went to bed. 

I miss writing. I miss drawing, painting, all the arts I used to make time for. I finally took the time for 'a moment,' and transformed that memory into a poem. The "moment" I'm talking about are all the ones I have with Bella, every evening, as she sleeps in my arms right before I put her in her crib. The way these moments come to be, our circumstances, the situations... Sometimes it 'all just hits me' in that moment, as I'm holding her, as she sleeps in my arms. 

NyNy Time 

"Ok baby, it's nyny time,

Let's get pjs out...and everything else."

She giggles from her hospital crib

Those ice blues eyes glance at me

Wait...take a second 

She's smiling, playing

Take it in, breathe

She's happy

I grab her pjs from the hospital closet

These still fit? She's lost weight 

But she's growing. Ya, they'll fit.

Wait...can't give her nyny cuddles yet.

Feed pump set, check

Gtube cleaning supplies, check 

O2 toe probe, check

IV lines untangled, labeled, check

Quick! Move her hand, she's grabbing her IV line.

Oh ya, check her diaper.

Give her a kiss.

"Ok baby, mommas gotta get all your stuff done before nyny cuddles."

Nurse comes in, put her down.

She checks her vitals 

Wait...grab the BP cuff

Help the nurse

"It's ok baby, nyny cuddles soon."

Don't cry, don't do that

The nurse might see you

Your fine, Bella's fine

Don't do that right now

The nurse might come back in

You'll get to hold her soon

Now hurry up and finish

Gtube,IV,monitor, O2 probe, leads...

"Ok baby, just a couple more things 

Mommas gotta do and then I can hold you." 

Lay her down

Gtube clean, check

Line dressing secure, check

O2 probe on check... Plug it in

Monitor on, stats good? Yep.

BP cuff on, check

Wrist brace on, check

Wait...she's upset, calm her down

Hurry up, she wants to be held

Change her bum, fast.

Her cheeks are red, she's hot

Fever? Please no, she feels ok

Check your own BP

Focus! She's fine

Probably just teeth 

Teething is normal, please be teeth

Calm down

Probably just teeth

Maybe gas

... Yep, gas.

Sigh of relief, normal baby things

She's ok

Breathe 

Don't cry!

She's strong, your tough

"Ok baby, Shhh. 

Mommas gonna put nyny music on."

Grab the speaker

Songza, Acoustic versions of pop songs... always good.

A bit harder not to cry now

Hold'em back

Nurse may come in.

Wait!... Forgot to plug in her IV pumps

Quick! Before they beep 

Breathe 

Pick her up

Nyny cuddles time... Finally.

"Ok my sweet love

Shhhhh... Mommas got you

Time for nyny's."

Hold her close

Hold back the tears

Hold in the pain

You'll be home together soon

Don't cry, don't do that 

She's sleeping in your arms

Take it in

She's just fine

Just take it in

Don't let the flood of thoughts

Drowned your eyes with tears, 

They'll drip on her

She's going to be just fine

She's going to be great.

The 3 of you

Under 3 different roofs. 

Don't think about it

It makes you cry 

Don't look at all the lines coming from her, don't compare,

Don't worry.

Breathe, wipe the tears away

Go to bed

You need to eat.

One last look at the monitor

She's good

98, 100, 99, 100, 100

Heart rate, pulse

108, 111, 115, 112, 108

Got to bed

You need to sleep.

Breathe

Look, she's sleeping so well

Go to your room

She's good.

Wait...one last prayer

God, protect her, please

Keep her strong, she's so strong

Give her peace, joy and a happy heart

Give her the want to eat, drink.

Keep her brave, no fear

Help the doctors, Lord

Show them everything they need for her. 

No pain, no harm, she is protected.

And God, just a lil more strength in me, just a little more relief. 

Amen.

Ok, off to bed

More nyny cuddles tomorrow

Go to your room

Relax

Breathe 

No ones around 

You can break down.

Bella's Feel Better Friends Doll

What a blessing for our baby girl. They say the best gift you can give, is your time and boy did our volunteer crafter Paula do just that. 

Thank you Paula.

Through friends from the town we used to live in, we connected with a wonderful lady who is a volunteer for this community of crocheters; Feel Better Friends. They make costom made "mini-me's" for sick kids in hospital. 

It took me a while to fill out the online form, and I was still blown away by the detail Paula put into Bella's doll and all her accessories. This was a huge gift from one very talented lady.

Bella loves her doll! She even gave it kisses! (I missed those moments on camera) Bella loves that her dolly has a soosoo too and couldn't decided which one to take so she tried both! She even tried to put both in her mouth at once.

Bella always tries to take her Dolly's headband and put it on her own head and she loves playing with all her Dolly's necklaces. 

Her doll also comes with matching mermaid tails for both dolly and Bella! Bella loves the little mermaid dolly too and giggles everytime she plays with it. 

Her dolly is so detailed! Paula even added the detail of Bella's gtube, Broviak line, diaper, belly scar and wrist brace! And under those pretty, sparkly shoes, the two of them even have matching socks! So sweet. 

Bella's dolly comes with a detachable wig of how her hair was before chemo. And when her hair comes in again, she can get another wig for her doll! 

Because this wonderful company is made of hard working volunteers, they need the support of donations. If you feel the need to give to help this great community of crafters they have a GoFundMe page. Here is the link to the FBF website: 

http://fbfdolls.org/ 

I'm looking forward to them posting a blurb of Bella receiving her doll on their FBF facebook community page but the Admin need time to update the page and watermark Bella's pictures. 

I love how so much of this gift is a keepsake for Bella. She received so much from this gift and I know it helps her through her hospital stay adding a bit more fun and giggles to her day. 

When signing up to receive a doll, the online registry offers a section where you can write a note to your child. So of course I wrote a little something for Bella that I hope she loves and understands when she's older: 

Thank you again Paula Weber. And thank you, Chantale and Dave, for connecting us with Paula. 

What a gift of talent, kindness and love.