Well, Dr. Wright (Bella's Immunologist) did, that's who. :)
And we're happy about it. :)
Day +34 (Tuesday, April 28th)
Last week I had mentioned that we probably won't be able to let Bella out of her room until Day 100. That was a cautious choice by her BMT doctors because again, she is the only 4th rare SCID case they have had. They decided on Day 100 because that is a landmark day when they will know for sure how well Bella's T and B cells are functioning together, aka: how strong her immune system is. (Interesting side note: Bella's Day +100 with be July 4th!) They then had a discussion with Bella's other head doctor, Dr.Wright who was confident in letting Bella outside at this point. Bella's counts have remained very stable! So we can go for walks outside! But we have to be strict about where we go. Still no public places or other people allowed. Hence her fun stroller sign.
This is Bella dressed up to go for a walk on the warmest day last week. We never got to go out. I had never felt so sad. We just got our "ok" for outside passes, it was the nicest day, and one simple blood pressure issue ruined our chance. Bella only has a certain timeframe in a day where she is off iv med lines. When her BP is too high they have to keep a close eye on it, and if it continues to stay up, she needs a med to bring it down, then they monitor some more. Right before we were ready to go, her BP issue started. It was never anything serious, and 2 of her current meds cause high bp...ugh. But! She had to be monitored and ended up needing her med and after 1 1/2hrs our chance to go outside was up and she had to be hooked up to her iv med.
I immidietly broke into tears. We just wanted to go for a walk. Something so simple made me cry so much. Bella was fine, she was just have'n fun putn on hats and shoes and watching mom fiddle with her stroller.
Cheering with daddy.
Cheering with mommy.
So how has Bella been?
Our fierce little firecracker is back to her energetic self and I'm so relieved. Although the extended nuzzle-cuddles are a little less, I'm so happy Bella is back to the energy she had before transplant. She is crawling again and standing at her crib, couch surfing around her crib and even dancing!
We had some fun with matching headbands! The morning I came in with this yellow headband on (Bella had never seen it before) and she noticed it right away! As soon as she saw me she tapped her head and spoke with a little glee saying, "Ah haaaa!"
Day +35 Bella's first tub bath in over 5 months! Since this past week is the first bit of time she has been able to be off of iv meds for a while, we can protect her entire Broviak site/lines with saranwrap and tape. So she can splash to her hearts content!
Exactly a year ago today we did not know Bella had SCID. It breaks my heart to know the major danger we put Bella in allowing so many cousins, family, friends, people around her,off of isolation. I know, we didn't know... It still breaks my heart. In the 2014 pic she's held by her cousin Bethany Wiley, and what a precious moment, because it will still be a long long time before Bella can be in the comfort of her cousins again.
Timeline Update: Bittersweet
The Bitter: Cost of Discharge
The Sweet: Being Discharged!
So yes, our doctors are talking about it...discharge. The day when Bella does not have to stay in a hospital room anymore. Discharge means she gets to stay with me at the Ronald McDonald House! And we stay in Calgary because when we are discharged we then start going to clinic. Which is down the hall from the Unit she is staying in now. So I would take Bella to clinic daily at first, to maybe twice weekly. It all depends on how she comes off her last iv med. Basically we stay at RMH and visit the ACH clinic when her doctors need to see her, do blood work, ect. This is all part of the monitoring stage from now, until we are back in Swift Current, we do the clinic visits. She may be ready for discharge in about 2 weeks from today.
This is a timeline I wrote out for myself to take an estimated look at the year coming up.
So although it will be sweet to finally be out of hospital with Bella, there is a lot of cost to come with discharge. Every med Bella is on, we start to pay for. All of the supplies to care for her Broviak line and Gtube, we pay for, Her specialized formula... Yep...we pay for.
No doubt about it she is a million dollar baby to our health care system. If only the newborn SCID screening was in place. That would of chopped off an entire year of stay in hospital and probably 4 of Bella's surgeries. (Ugh... I don't want to think about that, too painful.)
Dr. Wright told me there has been a study done. The medical costs of hospital life when a baby has been screened at birth for SCID is around $370 000.
When a child is not screened/diagnosed at birth: $1.4 Million! And yes... Bella passed the 1.4 Mill mark.
These are the med sheets for all of Bella's current meds. There are about 15 that she's on now and ten of those she will still be on when we are discharged. Bella's pharmasist goes over these meds, and any med changes with me weekly. We are doing a lot to prepare and it'll all be ok.
Lyle and I want to thank you all so so much for your support financially through Bella's GoFundMe site, through family and friends... We humbly thank you. The Kinsmen are also actively supporting us aswell, and when Bella is discharged our Social Worker will also help make sure every financial support avenue is covered as well.
Discharge time and when certain meds are done all depends on Bella, and how she improves and how her immune system builds. She may be on some meds for up to a year post BMT. I'm a little nervous because Bella is still positive for Entero/Rhino virus and Rota virus... This means she is not aloud at RMH. It would truly be so much harder to not be able to stay at the Ronald House (RMH). We are praying Bella clears these viruses before we are discharged so we can keep our RMH room. Anywhere else brings on the burden of more costs. The doctors say her new immune system may not be able to clear the viruses until June, but it's possible she could clear them before. Even if I could take Bella to RMH she'd be isolated to our room there and not aloud in any common area. But at least with the baby monitor, I could zip downstairs to see other adults, other humans, have supper with friends or be able to just walk Bella across the street for clinic visits. Anywhere else, we would not have that. RMH is a huge blessing, huge.
Because Bella went into Transplant with these 2 viruses, is why she still has them. Until her immune system can function enough to fight the viruses off...she is positive for them. She doesn't have symptoms and it's just a "carrier" state but she's still positive. Bella is improving very nicely and even engrafted a little earlier than the doctors anticipated. Hopefully she'll keep this positive streak going and rid these viruses asap.
Some interesting news:
Our BMT doctor informed me last week that the team of specialists from NewCastle, Northern England are inquiring about Bella's case. They know about her story, her BMT and are following it very closely and talking about her with our Calgary team. Pretty neat eh! She is very rare and advancing very well, so they want to know all about her successful case! We have of course, signed papers to allow Bella's team of specialist to be free to use Bella's case as research, and shared research,etc. We want her situation to inform and educate as many as possible, to help as many as possible.
We are glad that is happening and her case has recognition from specialists around the world!
Love love love.
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