Like many of my blog posts I often can't start typing. I stare at the screen, paralyzed, trying to fathom the pain that's encompassing me, trying to fight that off and put it into words. It's extremely difficult... And then I just stare some more. My mind continues to race and dart like a ball in a Pinball machine. The blur mangles my unfinished thoughts and sentences. I just continue to stare at the screen. And then this comes out:
It's been an exhausting 2 weeks and 2 days admitted in hospital with Bella and we don't get to leave yet. We have both taken hit after hit, rebounded... just to take more hits. I'm about done, but I'm not allowed to be done. Can enough punches just eventually turn you into rock hard steel?
This has been our recent weeks in a nut shell:
Aug 24th- admitted for fever
Fight the bug/ 10 days of antibiotics
Sept. 3rd- (2 days before we are supposed to be discharged) Bella gets real sick and is vomiting.
Help her recover
Not discharged on the 5th. / Now she's fighting something else.
Bella continues to have horrible fluid imbalance, continue admission.
Sept. 8th- Find out it was the Norovirus
Talk about discharge once her fluids are balanced on her own.
Sept 9th- Receive horrible news about her lymphnode biopsy results.
Continue hospital admission...
Ya, I'll get to the biopsy news later in this post. I've basically been a mess about it since 3:30pm today (Wednesday). How many rare on rare on rare issues and hits can one little human take. I want to scream so loud right now that security would have to remove me from this unit.
But then I guess I'd leave you all hanging... So I'll contain my anger for now and continue this post.
It's better this week. We have worked out her being off beeping monitors at night, my mom and Lyle have been around to give me breaks and reboots. But mentally, physically and emotionally I'm still drained and trying to catch up.
Bella's Blue Lumin of her CVC (ie: her blue noodle) got damaged, weakened and needed repair. This coming after we were just stressing, praying & hoping to not have to remove her life line due to a bug that contaminated her blood from it... Then it gets damaged. Thankfully this did not wreck it enough either and Bella gets to keep both of her "life line noodles." Thank God. Her yellow lumin is larger and should be used for the majority of blood draws. Moral of the story...please don't reef on her tiny blue lumin for 15min to try and draw blood and damage it. Ya, that happened. I'm really really mad at myself for not waking up in time to prevent this. Our nurse had to do blood work at 6am and I was sort of half asleep half awake so I knew the nurse was drawing blood. After 15min they were still there... I should have clued in and woke up. Then the next thing I know, they are in telling me her lumin is damaged and needs repair. After realizing what all happened I immediately requested it to be made very clear on Bella's chart to only do blood draws from her yellow lumin.
Sick on Sept. 3rd
From that Thursday until yesterday we did not know what caused Bella to be sick. She had one day of vomits, a slight stool change and then horrible fluid/level fluctuations that her docs had lots of trouble balancing. We now know it was the Norovirus, a common stomach flu bug. She most likely got it from being in hospital. It was reported on the unit prior to our admission and well I never got to take her anywhere else! We only got 2 days of passes and those were spent in our RMH room. Bella's system took a hard hit from this because she is so sensitive. Her doctor put it in simple mathematical terms for me. You or I with normal working immune systems can take a hit of 10 particles before it affects us and we get sick... Bella's system can't handle 1 particle and she's sick. Her kidneys have both their middle fingers up in the air at us right now as we speak.
Why is Bella sensitive and her kidneys so angry? This is why: Her first 15 months of life were on constant antibiotics, septic shock recovery, countless medications, then the Bone Marrow Transplant, then the large amount of strong Meds after that, then the Micrococcus blood infection (more antibiotic treatment for that) and now the Norovirus.
Middle fingers to the world kidneys, I don't blame you.
So because of all that Bella's kidneys don't have reserve when they receive blows like this, like the Norovirus. So that is also why she could not balance her fluids on her own, she needed a lot of support, IV support. Between Sept 3rd and now we have been trying to balance and manage Bella's: fluids, water, hydration, potassium, bicarb, magnesium, etc.
What does this mean for her future? Well, like any normal kid with a strong immune system with undamaged kidneys it might mean a day in bed and drinking more water. For Bella, it would mean her and I back in hospital with the IV fluid support to get her back to normal. How ever long that takes. How might it feel to think that every time your child becomes ill THAT means a stay in hospital not knowing how long the stay will be. sigh**
The good news from this was when her doctors told me this is all fixable, her kidneys will recover they just need time.
And then the hit of new information came today about her lymphnode biopsy results... And it does not look good for her kidneys. But keeping in faith, I hope I'm wrong and they will be ok.
Lymphnode Biopsy Results: Round 2
I had to receive this news alone, without my husband, and as soon as all 6 doctors left the room... I broke down into a puddle of tears on the floor.
And what resonates in my mind is what Lyle said to me right before he left this past weekend. He said, "Hunny, just turn on the Jays game. It'll be like I'm still here."
What I would have given for a Jays game to be on at that moment, in the room after the doctors news. But it wasn't. However Bella has been enjoying the sports channel being on a lot more often this week.
This scenario has happened too many times and my heart is ripped out of my chest each and everytime. And everytime it's a group of doctors, telling me horrible news, I don't have Lyle with me, no one is around and I just sob.
A bug has grown from Bella's lymphnode biopsy. It's an EXTREMELY RARE bug. I'm sick and tired of hearing them say, "This is rare, we've never seen this, we don't know how or why." I'm sick of it! Bella has had enough of this and I just can't take another RARE diagnosis.
The bug is called: Non- TB (Tuberculosis) Mycrobacteria. Or NTM.
As I mentioned in the previous blog post Bella had surgery to remove 2 of these larger nodes from her neck. They checked them for PTLD (cancer) and that was negative. Then before finalizing the report they found a bug has grown, the NTM bug. They just told me this yesterday. I want to go back to when they said these larger lumps are just her New Tcells reacting normally to normal viruses we already have in our systems. No, these lumps have not gone away and what the docs think to be happening is the Tcells are still doing their job but trapping this rare bug inside the nodes and causing them to become these larger Granulomes. Bella's Tcells are protecting her so this bug does not go into her blood system. They are checking for that right now and just took the bloodwork last night.
Why is this so bad?
On Tuesday they just finished telling me the smallest hit sets Bella's kidneys back, because they have no reserve. And then Wedneaday they hit me with not only this news of a rare bug she has, but that the treatment would be a YEAR on antibiotics..minimum. They just finish telling me her kidneys can't handle small hits like the Norovirus and need in hospital IV support to recover and THEN they hit me with the news of her possibly needing antibiotics for a year, NOT what her kidneys need. In fact it's the opposite. They needed time to recover not a diagnosis involving a year of antibiotics.
The doctors are hoping to know the sensitivity of this NTM bug by tomorrow. They need this to know exactly what antibiotics to use to ensure it leaves Bella's system and that her nodes shrink and go away. There is a possible 20 different antibiotics to use depending on this bugs sensitivity. I'm praying that it only requires a mild antibiotic. If it's a bad strain of bacteria there is one antibiotic that would basically ruin Bella's kidneys to the point of needing a kidney transplant... We DONT want that.
They think right now that it may require a minimum of 3 antibiotics for minimum a year. That is also a lot of money. The day I planned on celebrating Bella being off all BMT medications has now transformed into a disappointing day of more long term meds.
How did this happen?
They don't know and they may not even be able to tell me. What they do know about NTM is: it's in the environment, soil, water, non-treated water. Etc. Its in the environment but not explainable as to how Bella got it. Its very confusing to me at the moment but her Infectious Disease docs can tell me more when they receive more specific sensitivities that the bug has. As for now I can't beat myself up over a possible prevention, there wasn't any.
NTM is even more rare in non-immune compromised patients because you or I could walk outside and get it, but our working immune systems could handle it. Bella's team of doctors have also not seen it in any SCID patients. It is mind boggling how Bella got this bug because she has been robbed of being in the environment! She's been on over 300 days of isolation! Of all people, Bella has been strictly protected and lived in a hospital her whole life. We just don't know how this has happened, but it has. Rare.
Since discovering this bug that was found in two of Bella's lymphnodes the doctors have been trying to figure out how to best tackle this and get it out of Bella. At one point they actually considered cutting out every node.
Can you imagine?! She has these nodes on her head, neck, armpits, groin, abdomen... She has many. You can't just CUT out every node! How do you even know if every one of her nodes is infected!? You don't. Hence the start of antibiotics. They can't just cut into her little body to take out all the nodes, but they are still considering cutting out the larger ones. So possibly another surgery. Right now they are discussing another CT scan for Bella (her 3rd) to help with these decisions.
Prayer:
My prayer request list for Bella is a mile long but she needs it so so much. Right now I'm praying that this is all just wrong, the lab is wrong, the biopsy is wrong, the rare bug doesn't exist. I'm just so angry and upset. But we need to pray that Bella's doctors have the wisdom and knowledge to know exactly what is happening with her lymphnodes and that they can some how know exactly where the bug is and is not and how best to treat Bella. Pray for strength and full recovery for her kidneys. Pray that how ever the doctors need to get rid of this bug that the medications Bella requires will not harm her kidneys or cause any long term damage.
We will know more on this new diagnosis tomorw after more blood work, tests, etc.
Bella's Current Counts
Aside from everything else going on Bella's new immune system is still growing very very well. Her counts continue to go up and remain stable during this incline. Her virus fighting Tcells have shown growth! In terms of numbers from her last large panel of blood work, the CD3s have gone from 10-60! Bella's immunologist will be coming by soon to show me the numbers on paper and talk about her continued progress of her growing new immune system.
Her next big panel should be drawn next week on Tuesday. This will be her 6th MONTH PANEL! This is the one that the doctors hope to see the most improvement on. This is the panel that we have hoped tells us we can go home. They should draw this panel of blood work from Bella next week and then a few weeks after that we will have the results.
So please continue to refrain from asking me when we are going home. I'll be honest, I despise that question. And like I've said before, trust me, you won't have to ask,to know when we get to go home.
I also REALLY hate it when people ask me how I am doing. Please stop asking me this. I don't want to answer it and really, I'm an open book. You just have look at my face. I hate to be a grump about it but it's really wearing me out. I know I really can't prevent it just by writing in this blog, but I just wish that if anyone sees what I am going through, just know. Don't ask, just know. Please. I'm not sure how else to deal with this right now. Maybe I'll come up with a jollier response at some other time.
Thankful News
As hard as it is to call the RMH home right now, they are. I go back and foreth from the hospital to RMH right now and it's like a boost that I need each time. The support that RMH has received gives them the ability to feed me when I don't have the energy to cook or the time or money to go and buy groceries. They make this happen for families. By supporting the RMH you are essentially supporting Bella and her family, Lyle and I through our toughest times in life. It means so so much. Thank you for supporting RMH Southern and Central Alberta.
September is Newborn Screening Month
This is mainly a United States thing. I follow the Immune Deficiency Foundation on Facebook and they share tones of valuable information related to Bella's condition, SCID. They share the importance of newborn screening and the USA have almost every state conducting the screening now. I still need to find support in advocating for Canada. If Bella was screened at birth I can't even list all of the painful scenarios that could have been avoided. What's previlent right now is the first 11 months of Bella going undiagnosed harmed her kidneys and caused a year of trauma and antibiotics. Could have been prevented if Newborn Screening was available in Saskatchewan for when Bella was born.
Here is a link that talks a bit about SCID from the IDF Facebook site:
Keep sending the well wishes!
Because we are still admitted Bella can still receive the electronic well wishes. These are so exciting for her to receive. And I'll admit, I love getting them for her as well. I am not sure how much longer this admission will last but for now (after the recent news) we'll most likely stay in hospital for another week. So no matter where you are, who you are, please send more Well Wishes Bella's way!
Her full name: Isabella Thomson
Apple is Funny Mom
A couple weeks ago I caught Bella's beautiful, contagious laugh on camera. It needs to be shared with this world, so I added it to YouTube on my channel. Please feel free to enjoy and share her adorable chuckle.
Oh no! That is NOT good news! :( Will be praying.
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