Day +97 • 1month Post Discharge

Went to clinic this morning for normal bloodwork, nurse takes more blood than I had expected, and I think nothing of it. Then I get a phone call later this afternoon from our BMT nurse... "Oh by the way, we drew her +100 day blood work today."

I'm like, "Whaaaaa!?!" 

At first I was pretty upset that I missed knowing a major panel of bloodwork was taken from and for Bella today... Then Lyle helped me realize what this actually meant once I got over my little hissy fit because I had planned out her whole Day +100 (a day in pictures for the blog) including pictures of when they take the blood. 

A little lame I know... But Friday is still her Day +100, and it'll still be an awesome celebration. Anyway, so back to why taking this panel of blood work early is awesome! It means earlier results, the doctors are confident they'll see the results they want from Bella's new immune system. It means we are a jump ahead and 4 more days closer to HOME!! Whenever that is...

We will find out the specific results of this chimerism, Immune Deficiency Panel bloodwork on Tuesday from Bella's main BMT doctor. This test will also set the new isolation or less isolation protocol for Bella as well. 

Exciting news in 1 week! 

More To Come:

So on Friday Day +100, also marks a time when they can start taking Bella off more meds and weaning meds as well. This is essentially the 3 month post BMT mark and the earliest they see her new immune system in action. It'll be nice to not have to give 8 different meds around the clock. A few of these profolactic meds come off or down now because her immune system can start doing that work and learn to protect her from infection itself. 

Bella is still moving and growing so well. I took a pic of her whole play area in our room today just after I cleaned it. (Top. Pic) I sat her down in the middle. I always like to see what she decides to play with first. Books. Yep, her love of books is still strong. It's harder to read to her now though. She wants to point at everything on the page and hear me tell her what it is instead. She's taking in so much these days and it amazes me, the rate she is learning things. I'll go through one book with her and the next minute she's flipping through it, pointing and saying the objects names or sounds. I love it. Watching her discover and learn new things is the coolest feeling. 

This Coming Week

Well we will be right in the middle of Calgary Stampede when we find out Bella's new isolation protocol, but we won't be jumping in to big crowds of people right away. I'm still going to be on protective mode for a while. We only want ONE bone marrow transplant people! Haha. So even though we got Stampede, Canada Day, and a Parade at ACH this week, I am still going to be keeping it low key with Bella and stick around the Ronald House mainly. 

Feeds

Bella is still doing great with her eating and basically snacking during meal time. It's been easier to get her to want food during the times I have to have her Gtube bolus feed running (running formula into her stomach). 

This is better than having her snacking all day. As excited as I was about that, it doesn't really help when we want her to understand the "I'm hungry" feeling and how food helps that, at the time. This is some helpful advice coming from Bella's SLP/OT/Dietician. So I had to transition her from constant requests of food all day, to giving her food during her 4 bolus feeds, and 2 other snack times in a day. She adjusted really well. The break from food between 2:30pm - 5:30pm is her longest wait but it helps so much for when she eats supper. I find she's eating more food now at that time. She's also doing better with one of her sippy cups and she actually took a sip of water from a real cup the other day, that was fun! We'll practice that more in the bathtub. Ha ha. 

Jazz'd up my Mazda a bit.

Funny Story

Lyle and I took Bella to the playground at the hospital and sat on a bench about 20 feet away from the swing. We were chatting when the lady (who's daughter was on the swing) came up to us. Her daughter had a mask on so I assumed she was immune suppressed. So the lady comes up to me (keep in mind my 3 stroller signs are dangling in her direction as she approaches) and asks me if my daughter is sick, because if she is, then we need to move further away from her daughter, who is already a good 20 feet away from us. 

I chuckled in my mind and thought,"Lady... of all the kids, Bella is the only one you'd WANT near your daughter." Haha. 

Anyway, I gently reassured her that Bella is absolutely not sick and that she is also immune suppressed and then pointed to my stroller signs saying I share the same concerns. 

Then I laughed at Lyle cause he always jokes about people maybe thinking I'm a crazy mom with my stroller signs (I really should put "Immune Supressed" on them) but regardless, I'm not running up to people 20 feet away and making sure they stay even further away. Ha ha... That's a little more cray cray then my stroller signs. But hey, I'm sure that mom only wants ONE Bone Marrow Transplant too People!!! Haha

A More Difficult Normal

I feel I want to share this bit because I still find that many take too much for granted and in Bella's case, there are a lot of things that are still really hard for me. As amazing as it is to see her thrive, I'm trying to keep up with the enjoyment and not let our "difficult normal" drag me down. It's hard, and as much as I love helping others and giving tips, I am open to helpful tips as well. Lots of what Bella needs for a simple feed, bath or play takes so much prep and its wearing me out.

Giving meds every other hour is straining on the mind. I don't want to screw them up. On top of that I need to prepare the supplies, carry the supplies at all times and work around a busy toddler to get to her med port and feeding tube attached to her stomach. I must draw up the med, and the flush, give them to her on time, and make sure all the supplies are clean and sterile at all times... For the 8 different meds and feed times in a day. 

Its our normal right now, but not an easy one. 

To prepare for a walk is more than your average diaper bag. It's also all her feed pump supplies, and emergency kits for her Central Line and Gtube. Or attaching the bags and tubes to her stroller. I almost look like I'm moving out just to go for a walk. And the masks, covers, meds, supplies, etc to go along with. 

It's our normal right now, but it's a difficult one.

I find bathtime is bittersweet, and then bitter again. I can't just undress her and plop her in the tub. I must cover and tape Bella's Central Line area so no water touches the site, it can not get wet or infected. So this means trying to pin her down to get this on properly so no water leaks through. She has to sit in a tub and the water can't be too high but she still enjoys splashing and playing with the bath toys. Its a bit nerve racking making sure the bandage doesn't get wet, would not want to replace that too early. It's painful to take the bandage off now because it sticks so well to her good skin. She cries quite a bit even when I try to use adhesive remover to help get it off. (The Central Line bandage has to be changed once per week) 

So after bathtime is hard on Bella again because now I have to remove the waterproof tape. Ouchy. She's more hairy all over from one of her meds... Add tape that I have to put on and take off for every bath time... Not fun. On top of that, our difficult normal means no chance to experience swimming for Bella... that'll have to wait.

Lastly, our normal bed time routine. I need to put the O2 prongs on Bella's face before bed as she still must have Oxygen at night. If she's fallen asleep in my arms and I forget, I need to try n get those little prongs in her nose and secure the tube line by taping it on her back. This usually helps avoid using the stickers  on her face. We don't ever want to go back to tape on her face, not after 11 months with an NG down her nose and oral aversions. Anyway, hopefully by next week we can scratch this off Bella's bedtime to do list as she will have an overnight Oximetry Test on the 7th which will hopefully proove she no longer needs the nighttime Oxygen. 

Looking Forward to an Easier Normal in the Future.  

Beads of Courage Update:

Check that out! Along with the very first picture of this blog post, it's nice to see how short her line of beads are after discharge from hospital. 

In this last pic, I compare her month out of hospital to her 1 week during transplant. Almost the same amount of beads in 1 week inpatient as in 1 month outpatient. Crazy. The yellow beads were the in hospital stays and between them is 1 week. 

Her new beads now are the blue beads. These are the beads she gets for every clinic visit as an outpatient. 

Don't forget, 

Sign up through OneMatch to be a Donor if you haven't already, and get your cheek swab kit in the mail!