Post BMT Day +29 Lots of Updates

Day +29

Just a bundle of cuteness to start off this post. 

Things have been going so well for Bella that I have weeks to update everyone on! I think I may resort to jot notes for many of the medical updates. Refer to my April 9th blog post for Engraftment details. 

We have been celebrating the Flames! This hasn't been hard seeing as both Bella and the Flames like the Cinderella story. (If you understand what this all means for The Calgary Flames, you'll understand that Cinderella comment). 

The RMH staff gave Bella a jersey, tshirt and a signed puck! RMH staff sent the Flames Foundation a few pics of Bella in her game gear as well. 

Medical Updates/Short and Sweet:

No needle pokes since her new Broviak line on March 24th! 

No pukes since end of February!

Bella is off of a lot of meds now that she's engrafted. She's off antibiotics. Down to only 2 iv meds in a day. The only 2 iv meds she is currently on are used to prevent GVHD which she does not have! Yay!  

So this means more time off lines, less time attached to the iv pole.

Her Counts/Numbers are staying consistently up. Specifically her AGC is consistently above 1000 and that's exactly what they want to see.

We are still waiting for her Chimerisims count. (How much of her is donor cells)

Her platlets are rising on their own. This means her marrow is recovering on its own. 

She is still positive for:Entero/Rhino, Sapo/Roto viruses. She shows these just as a carrier type, these viruses are not effecting her and she shows no symptoms but they are not totally gone out of her system so they show up on the test. So she is still shedding them as her new immune system becomes stronger. The new cells will eventually recognize the viruses and destroy them. 

Her risk of VOD (liver complications) is gone after 6 wks. So we are 2 wks away from that time line. She currently shows no symptoms for that either.

Her RSV shots are done. 

Currently off of Oxygen. She has needed it off and on. The docs have set a stat parameter of 92. She can not dip below that or they put the O2 prongs back on. She really doesn't need much at times, about .25 of a Litre. Using it therapeutically has shown to ease her work of breathing and lower her heart rate when she may be in pain or grunting from possible pain. 

We weaned her off Morphine and she's been off both for just over a week now. 

How has Bella been?

I would say the last 2 weeks she has been much more like her usual self. The steroid meds and cyclosporine med made her very moody, irritable and not herself. I was so sad about this daily and needed constant reminders that these meds can do this to her. This is another factor from living in hospital that makes everything so much harder. I have had a real hard time with this when it happens. I  get so upset and worried when I can't tell if it's her teeth hurting her or her head ache'n from meds or the fact that her little body has been through so much. And she can't tell me. All I want is her to be that little girl playing goofy face games, smiling at everyone, happy like always. Then the next minute I don't know if her heart rate reflects serious pain like when she went through sepsis...or if she's just mad. To have numbers on a screen that could mean something serious or really just a normal one year old attitude, is so draining and confusing and can bring you from instant heart attack fear, to, "oh... It was just 'this' and that's normal."

 Rollercoaster. 

A couple of times in the past week I've found myself just in a breakdown, quietly sobbing... crying tears of relief. A few times I've just been holding her, rocking her to sleep for her nap and just balling because moments earlier her heart rate was 180, she's crying, and I couldn't immidietly figure out what's wrong and all I have to go off of is instant recall to her sepsis attack when she was crying and her heart rate was above 180. 

I do my best to not jump to that conclusion but the horror is still so fresh, she calms... As I pick her up, give her her soother she calms some more. Oh... She was tired. And the release of waterworks flood my cheeks because she was just tired. I slowly regain my breath, see her calm in my arms and remind myself... Her heart rate was not escalating because of fever or sepsis... She was just tired and upset. Huge exhale. 

After being through her BMT, she is back to more like herself, especially this week. They are weaning her steroid med and her cyclo med is no longer iv, it's given through her gtube now. I have our pharmasist review Bella's meds with me when ever I need, and they check with me daily. At one point around transplant she was up to 18 different meds, and many have changed since. She's only down to about 12 now and most are PRN (given if needed). 

When I got back from my weekend in Swift Current, Bella was so cuddly and wrapped her arms around my neck. Best feelig ever. She is more active now and getting more of her energy back, but still super cuddly, which I love. She's a snuggly noodle still and i'm eating it up. Especially when I walk in her room and she quickly requests me by saying, "Up Momma, please." And she reaches her arms up. And yes, she is putting words together. At 16 months old I'm blown away too. She's putting more words, like 2-3 words together. She'll request specific books now, like her book about dogs. She'll reach for it, make a dog panting sound and say, "book." Or her "Moo book."

Her energy is slowly coming back in a physical sense. She was crawling all over the place and couch surfing to get around her crib. She would stand stand and do squats and dance on her feet. She would show off her standing skills by letting go of the rail and balancing with excitement when we would say, "No hands!" She would kick her feet up and spin around in her jumper. 

She's not back to any of that yet after transplant. She gets pretty upset when physio works with her or if I try to get her back in the crawling position. It's all still a little stressful on her body. But it'll come. I'm fine with her being my little cuddly noodle for a little longer. She doesn't push away, and cuddles a lot. 

Day +26: Showing daddy that cartoons are on. Haha I have some cards made up of family and us,of course, for when we are away. 

Feeds

How she is being fed and the way the doctors are so specific about her fluid intake has a lot to do with her low energy level aswell. She has been losing weight (not huge amounts) but still hanging around her baseline weight. They have also sacrificed her formula feeds greatly to manage her fluids. Before BMT she was getting 140ml of formula in an hour and around 850ml per day. Since BMT she is on continuous feeds of 24ml an hour. At some points she was at 5ml an hour of formula. Today she is at 28ml an hour and that's as high as they want to go for now. Just strictly to manage her fluids and other med related issues. But hey! They never had to use TPN (iv nutrition) for her ever. It's good knowing we could always have more options if needed, but she never needed it, so that's great. She'll stay at 28ml/hr for a bit yet, and they'll change this slowly as she gets further away from complication risks, and less meds. 

Oopsy, That Was A Big No No.

Day +27

So we escaped outside and we weren't supposed to. Oopsy. We broke free! 

Not a huge deal but the doctor on call for that day got a big slap on the hand from Bella's BMT doc. You see, there are 3 Isabella's on Unit 1 right now, so apparently name and order mix ups happen. One of the Isabella's is allowed outside...not us. We are on strict isolation until ALL of Bella's counts are stable and some they don't know about for 3 months post BMT. For many things they don't want to be too confident before Day +100. Oopsy. We were careful, but our doctor reminded us she is still only the 4th SCID patient ACH has seen. They want strict isolation protocol because they don't want to stretch the isolation boundaries so soon after BMT with having only trialed this experience with 3 other patients. 

Either way, Bella was not exposed to anyone and we had a fabulous 15min of sunshine by ourselves outside. She loved every second of course. But we won't be aloud to do that again for a while.

Cyclosporine med line and overdose incidents/What's been done?

April 9th I made a post about this. Since then the Primary Nursing that the unit manager put in place for Bella has been so so good for us. The consistency just elieviates so much stress and I haven't had to explain the same thing daily and exhaust myself that way. It's so relieving to have the same nurses consistently when daily changes with Bella are happening. They understand the reasons behind the changes and can see some issues resolved within the same time frame of the week they are with Bella. It's a world of difference to have Bella on Primary Nursing. 

Pharmacy has had 2 meetings with all their staff, and I have met with the manager aswell. They are no longer aloud to modify any work-sheets. They have a specific group making the new worksheet plan. The sheets are complete and in use. And they have the "human check" protocol in place for these new worksheets when drawing up meds, aswell. So a second set of eyes must do checks on the worksheets. 

Ok, this post is a long one. I'm going to stop here and let you all know I have exciting, good news for the next post!!! 

:)