I just can't get over this photo I took and created. I just snapped it after a usual bath time. This is one of my most favourite moments in the day with my sweet girl...when I snuggle her all up in towels after a bath.
•Bella has now spent 529 days/nights in hospital, total, from birth.•
Summary of Bella's Recent Hospital Admission:
25 days
Aug. 24th - Sept. 18th 2015
Unit 1 at ACH
1st week: fight off a Micrococcus bug infection of her blood.
2nd week: Caught Norovirus and fought that off.
3rd week: Find out how to deal with the new diagnosis of an extremely rare bug called NTM-MAC.
4th week: Work on balancing her fluids, lytes, potassium, sodium, urea, creatin, etc.
In those 25 days Bella had underwent: 2 CT scans, 2 blood transfusions, 2 ECGs, 1 ECHO and 28 blood draws. (Thank God she has a central line for all those blood draws eh.). And all of that because of being admitted for a fever, infection and virus. Side note: I don't think Swift Current could not handle any of that. A tiny eye-opener as to why we are still in Calgary. But we'll get to the 'when we are home' discussion later.
Even though we are out of hospital and back to the Ronald McDonald House Bella's doctors continue to check Bella's electrolyte levels and sodium levels. Her fluids have been really hard to manage/balance. This is because of a few reasons: her kidneys have been damaged and don't have reserve, aka- they need much more time to get over episodes of viruses and antibiotics, Bella's has no colon, she's on a harsh post BMT immune supressent med called Cyclosporine that causes issues with almost everything, and she is still recovering from the Norovirus.
Even though we can strictly manage Bella's fluids via her Gtube in her tummy, her lytes and fluids have been tricky to balance because of all those reasons I just mentioned. But we are getting there. She's feeling great and the docs are checking her levels twice a week. It was a rocky road in hospital after she had puked the one day, then wasn't allowed to eat, was on IV fluids, etc. So she needs way more time to get back to her "normal" and balance her fluids.
I was quite upset because her eating and drinking skills were so amazing right before the admission. Those definetly took a hit and she has to work hard at getting back to where she was again. She'll get there.
When Bella is admitted in hospital it's bittersweet. It means she's not at her best, but it also means Lyle and I can enjoy breaks together. While Bella was naping we had lunch on a downtown patio during a beautiful afternoon.
That New Rare Bug
So it is a big name and that's why I use the shortened version: NTM-MAC. In a nutshell this extremely rare bug that the doctors never see was found to have grown from Bella's recent lymphnode biopsy surgery. This bug would do nothing to you or me because our immune systems would not let it harm us. This is why we never hear of it. So Bella's doctors are fairly certain she had caught it before we even knew Bella had SCID, way before her bone marrow transplant when she had no immune system to fight against any bug. This MAC bug could only harm a person who's immune system could not gaurd against it.
So what do we do about it? Well we support Bella's growing immune system with 3 antibiotics for a year. And a year once her immune system is actually fully working. So Bella will actually have to be on the 3 antibiotics for over 1 year. We are hoping we see her system rid the bug before then but her doctors tell me this is the course for this bug and these drugs. I'm still not sure if they will still do surgery to cut out more of Bella's larger Granulomes (large nodes). Her doctors are currently just watching to make sure the Granulomes shrink and not increase in size. The antibiotics should be enough to rid this bug from Bella's system. Right now the nodes are like bumps under her skin and I can feel them on her skull behind her ears. So far these 3 antibiotics are proving to be not too harsh on Bella. She does not have diahrea from them but I'm wondering if they are making her urine harsher on her skin. Poor girl has quite a sore bum but not from diahrea. I will have to ask her docs about that tomorrow.
The Night of No Sleep
You may remember my post on Bella's Facebook page from Friday, Sept.18th when we were discharged from hospital... Well sort of. We weren't actually out of hospital until 7:30pm and then back in a 1am - 4am because of a fever.. So we thought. Yes, I have a newer, better thermometer now. Ugh. I was concerned with Bella's temp that night and what woke me to check it was her grunting with breathing. She also felt hot all over. However after the docs checked her out and took blood cultures nothing ever came back and her fever was gone. Not sure what happened that night but I must say this grump bear may need to send the unit 1 nurses an apology note for the few that had to deal with quite a battle-axe that night. It's was a perfect storm. A month of little to no sleep in hospital followed by a night of worry and no sleep the day we get discharged! I was so upset and stressed. I'm glad it ended up being nothing.
Bella's team takes the slightest fever or issue with Bella VERY seriously because she is a SCID case, which just has had me on edge. For Pete sakes they kick other patients out of the unit to make room for Bella! She's literally VIP on unit 1, no joke. Even now, I must call even if Bella's amount of stool increases in a day. Any little change, they demand to be on top of or have her admitted. It's wearing me out a bit, but I'm remaining strong. As much as I don't want to have her go back in to hospital, it's good to know her BMT team of doctors takes everything very seriously to keep Bella safe.
6th Month Immune Panel Bloodwork
Even though Sept. 25th 2015 marked exactly 6 months from Bella's BMT, they drew her panel on the 15th. I hope to hear about the full results by the end of this week or next week. They take 2-3 weeks to come back. So far all Bella's counts remain stable and increasing. The question is have they increased enough for us to set a home date for Swift Current? Ie: Is her immune system proving its working well enough for Bella's doctors to be comfortable sending her home, 6 hours away. Well the doctors are hopeful because they have already made a couple huge decisions that have us really happy and excited.
First they started weaning Bella's main BMT med: Cyclosporin, the one I just said causes issues with a bunch of stuff. This is a HUGE deal! Weaning this med is calculated out at 10 weeks until completion. Now that the weaning has started we don't have to draw levels anymore either! If you remember, the 9 days before Bella was admitted they were drawing (blood) levels every day because this med has been such a problem. No more of that! Accessing her line that much causes risk for infection. No more of that! This is the med that is still suppressing Bella's immune system so her new cells don't come in too fast but instead just the right speed. Once this med is done, we really see Bella's immune system working entirely on its own!!! So when his med is done that would bring us to the end of November. And it takes a couple months to completely leave Bella's system. So we would see Bella's immune system fully working on its own by Feburary 2016. She would still be very fragile as at that point she will be 2 years and a few months old without any immunizations yet.
Once this med is done that means a bunch of the other 8 medications Bella is currently on are also done! And the most exciting news about weaning this med is that her doctors have said that they are comfortable with us being home for the remainder of the wean, which would be in 4 weeks. Therefore, there is a good chance we could be home by the end of October. BUT, there are a few other major things that need to fall into place before then, one of which being a 9th surgery for Bella.
Before We Go Home
A few things need to be looked at.
1. Weaning Bella off this major Cyclo. med needs to go well. She must not develop any rashes, sickness, etc from coming off this medication that she has been on since November 2014.
2. Bella must have a 9th surgery. Bella's doctors are not comfortable sending Bella to Swift Current with out a central line aka: her Broviak sewn into her chest. However, this line poses risk for infection. But it is also life saving incase of an emergency and provides easy access. So they are converting it to what's called an Ivad Port. Instead of lines dangling from her chest, the port sits like a little button under her skin. Much less risk of infection and it'll will mean Bella still has a cvc line for blood draws, monthly ivig infusions and any line access that may come up. The Ivad port is also great because then I don't have to cover Bella's entire chest with a bandage dressing or Saranwrap for baths!
3. The 9th surgery will also involve Bella changing her long Peg Gtube to a Mic-key button. This would mean she would no longer have the long tube dangling from her stomach either. Instead it would be a button on her belly with a little cap. Switching from the tube to a button is actually usually bedside procedure, meaning I could do it. But not for Bella. Her surgeon who knows her bowels well from the previous surgeries explained why this must be a surgical procedure. Right now Bella has a little disk inside her stomach holding her peg Gtube. Usually you would cut the tube, pull it out and let the patient pass (poop out) the soft disk. Bella's surgeon said no to that. They don't want to risk any complications of allowing her to try and pass the disk. So they will surgically remove it.
The button she would have would look similar to this pic:
I have a lot more phone calls to make. We need to make sure the SC pharmacy understands and can make Bella's Meds. We need to secure a suitable Pediatrician and make sure there is always someone available and capable for Bella's unique care. Swift Current, please don't let me down. You are my home, I want to be there, not here.
Bella and I just spent a wonderful weekend with my dad. Grandpas are great at projects! Bella's playtable is just too short because she's a growing girl, so my dad was able to make new legs and make it taller so Bella can stand at it.
My cousin Sandra made the Walk of Hope for Bella through her hard work in the Queen City Marathon. She raised money to support Bella. The blessings Bella receives from this support makes my heart full of joy. It brings me relief.
My heart is full from everyone's generous support and I can't thank you all enough. I've recently had friends I've barely seen give in ways that melts my heart and helps me through the daily struggles. Thank you. Thank you for the flowers, the gifts, the cards, GoFundMe money, messages, letters, texts, clothes, visits... I will not forget any of it, it all means so much to me. Thank you so much to my sister in law's, sister in law who ran in the Rock the House Run for Bella! In Bella's name she supported the Ronald McDonald House. Thank you Trista. And Thank you to a beautiful girl I know, Natasha for the heartfelt support of the Fall Photos for Bella. Even just writing this now brings me to tears. I'm overwhelmed with how much love so many of you have shown for my family.
I want to say, "Thank You" in a special way. For all of you that have given to us in anyway you can I want express my thanks when I can't be there to hug you, I can't get out to pick up a card or pay you back. But until then, I wanted to write this for everyone that has supported us in so many ways lately, this is for you:
"Once Again,
We have reached calm waters.
Many waves of hardship have come
But your love and support continues to be the vessel that sails us home."
I am 21 and have had 56 (57 with 2-3 weeks) brain and spinal surgeries and my veins are pretty shot. I had a bard port placed at the end of May (they did it at the same time that I was having another surgery). I have used it a few times since I had it put in and honestly, I am so happy I have it. It was a surgery that was worth it to me. If that makes any sense. I suggest applying the numbing cream 35-45 minutes (they say 20 but from experience I think it's more effective when on longer) before being accessed. It is very useful when you are someone who is in and out of the hospital frequently. Also, your daughter is so beautiful and very brave. The longest I have been in the hospital was 2 1/2 months so I can't imagine how hard it must be to be in the hospital for a year. She is an inspiration to many. Your family is in my prayers. Sorry this was so long!
ReplyDeleteOh wow Holly! My jaw is on the floor in awe of what u have been through. I'm speechless. Thank u for ur helpful comment. Please message me more! I'd love to know more about your experiences and where u r from. Thank u again.
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