Day +605 Post BMT (Bone Marrow Transplant)
Hopefully if you understand Bella's medical history, then you have caught on to the way I titled this post. :) I'll be sure to fill you in on all the good news about her Tcells, Bcells and blood cells in this post! Let's Cell-ebrate!
Isabella is soon turning 3! On December 6th 2016. This will be her first birthday NOT in hospital, her first birthday at HOME. Time to Cell-ebrate!
She has spent 580 days in hospital. Those were mostly the first 2 years of her life, from birth. We have now been home for a total of 278 days! We have a ways to go, about another 10 months or so (well...303 more days to be exact) before she has finally been at home more days, than in hospital. But who's counting right!? Well, me....ya. But It'll just be more to Celebrate!
So, November 20th is a special date. I wanted to make a point of writing a post on this date because of how special this date is to Lyle, Bella and I. I remember that Thursday very clearly. Thursday November 20th, 2014. This was the day we received Bella's SCID diagnosis and the first time that those first confusing 11 months of her life, were beginning to make sense. It was a bittersweet day. They sat me down in a closed room on Unit 2 in Albert Children's Hospital and began to tell me how she would need Chemo and a Bone Marrow Transplant to survive. But it was a cure! The bitter was over come by the joy of the sweet chance at a cure...she would survive. Boy, has she moved many more mountains since that day. March 25th 2017 will be Bella's second Life Day (Second Anniversary of her Bone Marrow Transplant). That will be another joyous day to celebrate and finally have a chance to see if we can meet Bella's Bone Marrow Donor.
So Holy Cow! Bella's turning 3 in like just a couple weeks! Last week it just sort of hit me as I was planning how to decorate and what cake to make... this is her FIRST birthday celebrated at Home. That feeling just over took me for a second and I'm still in shock about it. I am fighting to not let the pain and guilt of my baby girls first 2 birthdays, having to be spent inside a hospital, over shadow the joy of her celebrating at home...but its hard.
On to more good news! Bella's MRI and CT scans went very well and we no longer have to do blood work weekly. Her hgb has been very stable (118,112,113,117,113) and all of her specialist are very confident that the chance of a Hemalytic Anemia relapse is far behind us. So blood work is only once every 2 weeks now. Yay! Bella has been doing so well from a Transplant standpoint that all of her specialists are (in a funny way) fighting over who will remain her Primary. So her team of specialists are Hematology (The blood disorder docs), Immunology (monitor her new immune system) and Transplant (because she had a bone marrow transplant). They will all follow her for the rest of her life, but one generally is primary and then the main amount of information coming and going from Bella's Swift Current doctor only goes to one doctor, not 15. Each of the 3 specialists then have another set of specialists under the main specialists...if you follow. Lol It's a lot of doctors.
And more good news! For the first time in almost 3 years (since she was born) Bella is OFF ALL MEDICATION! YAY!!! Thank God. Her little system has conquered so much, this break for her couldn't come soon enough. Her bowels have been through the ringer with countless meds running through her tummy. I'm so happy her bowels can now begin to heal. The week of her MRI and CT was getting to a breaking point, the distention/bloat on her tummy has caused her so much pain and some set backs. It was getting so hard to manage that. For the last 3 weeks straight Bella has not slept through the night. And that is a big tell, because Bella has always been a good sleeper. SO she has been very uncomfortable. Now that she has been taken off those 3 antibiotics, her natural gut flora can start to come back and allow her system/bowels to function without bloat, gas build up and pain. Her doctors say it could take 3-6 months for the bad bloat/distension to go away, I pray it will go away sooner. She is still uncomfortable and not sleeping well.
There is more good news that comes with why she is finally OFF ALL MEDICATIONS! The main purpose of the MRI and CT scans were to look at all of Bella's lymphnodes. They needed to compare the size of them to the CT scans they took before and during transplant. The antibiotics were treating the MAC bug infection. They knew the antibiotics were working because her lymphnodes did not increase in size. After the year long course of antibiotics they needed the scans to show them all her lymphnodes remained smaller or normal size. An increase in size would suggest the MAC infection was still in her system. Thank goodness that is not the case, her scans were clear and they are confident the MAC bug is gone. They also needed to have her immune system in a state where if a trace of the MAC bug was still in a lymph-node they couldn't see or it came back, then her stronger immune system would know to recognise it, and kill it...like yours and mine have. The scans wouldn't of been able to happen if she had to remain on steroids. So happy that is behind us. So much has been riding on so much, I'm just happy it is all good news and good outcomes for our mighty warrior.
Bella's Immune System Outlook
Since Bella has been off steroids now since Sept. 5th, she is no longer immune compromised. Her Tcells have remained at 100%, meaning they have remained in her body at a number above normal and are functioning the way they should be, meaning they can kill viruses. For Bella to have a fully normally functioning immune system, Bcells need to come in and do the same thing, and thats what we have been waiting on for over a year now. That chemo like med to combat the Hemalytic Anemia wiped all her Bcells out, back in September 2015. Now they have started to come back in, but they are not at normal range yet. However, the last count of them has doubled from the very first count of them starting to recover... so they are increasing in numbers! Bella has a set of requirements that need to happen for them to even test her Bcell function off IVIG to see if she'll need IVIG anymore. She needs to be off steroids for a while, check! She needs her B cell numbers to go higher, getting there. And her system needs to makes its own Immunglobulins, IGAs and IGMs, hopefully soon. I bet most of you are like, "IG whats?" So I found this wonderful kids book that I am going to print for Bella from the Immune Deficiency Foundation. Its a easy to understand children's book that helps people understand more about the parts if the Immune system like the IGMs and IGAs and how they are important to Bella. Here's the link if you want to learn more, take a look:
https://primaryimmune.org/wp-content/uploads/2011/04/Our-Immune-System.pdf
We have about 6 months left for her Bcells to come up to normal range and work with her Tcells to make her fully functioning immune system. Once this happens, Bella will be allowed to start normal Immunisations and Vaccinations.
So what if her Bcells don't get to normal range? Well, of course we don't want that but we need to be prepared for that situation if it occurs. If they don't come in and work with the Tcells, Bella will need IVIG infusions for the rest of her life. These are the monthly boosters that protect her, like if she had a normal working immune system like you and I. She would not have a cvc in her chest for the rest of her life, so then it would also mean two needle pokes at least once a month for these infusions. The part I haven't figured out yet, and still have to ask about, is what exactly she is protected from? I know IVIG keeps her protected from a lot, but its not a measles vaccine or polio vaccine. So I need to find a lot more information out and try not to worry, but remain hopeful in the mean time. The things I think about around this topic are the hopes that one day she can go to daycare or school worry free. When we don't have to worry about any issue around catching something that, for example, if she were to catch right now...would be deadly.
Another thing, that is a current issue for us (could be a future issue aswell) is, we have to travel for these monthly IVIG infusions, to Calgary. Swift Current still has not acquired someone for this because it is Pediatrics. Our Calgary team is looking into this for us and hopefully even by Christmas they can figure out a way to have her IVIG done either closer to Swift Current or right in Swift Current. If they can do that, than no more monthly trips to Calgary! I think it would finally mean a trip to Calgary once every 3 months, instead.
Bella's MRI & CT
We are so thankful Bella got in for these earlier than expected. A lot had to come together for her to actually even be able to have these scans done, and then on top it, these scans needed to be done so that she could come off her remaining medications. It was a hard wait, but the day finally came. Bella has never had an MRI before only CT scans (3 total now) so I was unaware of every detail around a 2 year old getting an MRI. I completely forgot that receiving anaesthetic, to be put under, paralyses her bowel motility and just made all of her already horrible tummy issues, worse that week. So her bowel motility is still in recovery from the anaesthetic. You have to be completely still for an MRI, that's why she needed to be put under. Which is something I have never stayed around for, for Bella. This was the first time (out of all of her surgeries prior) that I stood there and watched them put her to sleep. And now I know why I never felt I should, all the times before... it was really difficult for me to watch. Bella was completely fine, totally comfortable...its me and what I saw, that was really hard. Bella's nurse for the MRI, of course new Bella and her many surgeries and was surprised I hadn't ever been there for that part before, but she understood. I guess for me, walking into the OR or past the area where they always took Bella away for surgery, gave me a sense of worry and fear...and I never, ever wanted a micro ounce of fear to enter my mind before any 12 of Bella's past surgeries. I felt I could remain calmer, stronger and more hopeful if I stayed out of the areas where that sight could trigger worry and fear to enter my mind. It helped that Bella always went with her surgeons, with a cheery smile or just excitement over a new room to be in, out of her isolation room. But I knew if I saw them put her under, it would be more difficult for me to remain more positive in that OR waiting room.
MRI's are not surgery of course so everything was done right in the room, including putting her to sleep. It began faster than I anticipated and I didn't get time to ditch that part and run away to the waiting room. Instead I fumbled through some jumbled words that fell out of my mouth as the Anaesthetist starting infusion Bella's CVC line with the anaesthetic. The doctor and nurse had a good chuckle, and I did too after...but it was hard for me to watch her struggle to keep her eyes open and then lay there limp.
The doctor prep'd me on everything they would do before, during and after the MRI so I had just thought I was going in the room to attached Bella's Gtube vent tube and then go. Nope, they were all set to start before I could leave the room. So as the doctor hooked up the anaesthetic to Bella's line I saw him attach this large white substance in a tube. And I think I said something like, "So, that's the anaesthetic? Doc says,"yes." Then I say, "Oh, okay, so I'm sure given your obvious expertise that that's the correct amount for her size, weight and all, and ya, of course it is....sorry."
Then we all kind of giggled around my nervous, jumbled question.
How Is Our Ex-CELL-ent Bella Brave? See what I did there?
Well I'm going to need to brag here a little bit because my two year old (soon to be 3y old) is already singing songs! She has memorised a ton of songs on her own and loves singing.She knows all the words to Twinkle Twinkle Little Star, Old McDonald, ABCs, Baa Baa Black Sheep and Row Row Your Boat!
She loves dancing! I hope so so bad that come spring her immune system is functioning well enough so that I can put her in some music or dance classes. I'm just so thankful she can and does enjoy these things at home given all the isolation she has had to go through. Makes me want to cry so many happy tears when she just gets up to sing and dance around the room.
Bella is doing wonderful at her physio appoinments for her right wrist and hand function. Thankfully part of her MRI focused on the nerves and muscles in this wrist and her Calgary Specialist will review what the MRI showed, with us in Calgary, next week. We are hoping she doesn't need surgery to regain full function. Bella will wake up almost every morning asking if she gets to go to physio, she loves it. Potty training has taken a big hit. With how bad her tummy distention has made things, its really uncomfortable for her to sit in certain positions. I'm so happy her bowels can begin to heal so the bloat goes away. I have been worried about it affecting her physical development in terms of climbing, running, potty training, etc. She'll catch up no problem though, just like after every other surgery shes had. She always showed that it won't hold her back for long.
One day about a month ago the teacher in me emerged and I showed Bella some learning worksheets. Well she loves them! I just printed off some fun sheets that help her learn to write, draw, count and color. Now sometimes if she is bored and trying to think of what she wants to do next, she request "work sheets". Her favorite part is having Lyle or I help her write her name at the top.
Waiting has been a tricky thing to teach. I haven't googled this special milestone yet, but I'm assuming its probably not in the near future. What I have tried so far is asking Bella to count her fingers while she waits. Well...that was a quick FAIL. Now all I ever get is a quick ten seconds before a big'ol melt down happens. She can count to ten really well, so I think its time to start counting to 20. She's almost there, she can get to 16 on her own. But now, when I say something is not ready, or wait a little longer she looks at me with these huge puppy dog eyes, sometimes with tears and says, "Okay, mommy...but just a little bit?" Melts me into a puddle every time.
How Am I?
I have to say, my PTSD treatment sessions with my Mental Health nurse have been helping me in so many ways. I am so thankful my doctor set me up with a mental health nurse for this, I'm stronger in more ways than I could see before. And I am open to share because it may just help someone else. It was daunting at first when, after understanding our story, how long my nurse thought I may need support in this way, for. But the way I have suffered from PTSD in not a typical way. Many understand it as someone suffering from one traumatic event or one traumatic experience. I have had many, given Bella's experiences, and then also current situations continue to be constant triggers trying to pull me into a constant state of fear vs healing from all the trauma. I can sum all this up in almost two words, "Bella's Bowels." The conditions, episodes and issues with Bella's bowels have been a constant from the day she was born. They have not been a single event, or a single traumatic episode like the 2 times she went septic. They have been the cause of many traumatic events, but also ongoing trauma. Bella's Bowels have been a constant trauma from birth and I am finally receiving support, coaching me on how I can train my mind to not be so severely effected any longer. It can be quite debilitating some days. The photo I shared about the Linen Cupboard Metaphor is very helpful when understanding this form of PTSD. And given recent issues with Bella's distension and bloat becoming harder to manage, this helped me not completely break down when Bella has tummy troubles. Lately, fear would swell up in my mind, memories from the first months in Saskatoon. Fear around bowel blockages, scar tissue legions occuring, micro perferated bowel causing sepsis, puking causing her to aspirate and gain infection, and on and on. So much of this fear would build inside me in the recent weeks. If an afternoon went by and Bella hadn't pooped. It would cause me to breakdown in fear, crying scared about what this meant, or is everything still ok?
I am thankful for my MH nurse and the treatment material she can use to help me, like these PTSD tools and EMI (Eye Movement Integration therapy). I'm getting closer and closer to being able to function through daily life and be more prepared for setbacks or minor medical bumps on Bella's road.
My Talk With RN's (Registered Nurses) of the Future
Eee! I'm so excited to talk about this! Having been given this opportunity has made me feel as though my whole purpose, after going through what I have with Bella as a Medical Mom, has been fulfilled! I want to do more!
I'm so thankful for the instructor of this RN class to invite me into their classroom to give my perspective and story. I was able to share our story so that our rare long term hospital stay can help them better understand patient and family experience and better communicate with their patients. And the reward from being able to speak with these students, it priceless.
Thank you to my fellow medical parents from my online groups who offered me their input. Please know I compiled ALL of what you all wrote and was able to combine it on handouts for each RN student. The RN students were so kind and receptive. As my eyes would well up with tears, explaining certain experiences, they listened with calm open ears. And the feedback they offered me after I finished speaking is so valuable. I was able to record my talk so I can prepare for more opportunities like this, and I look forward to many more! The instructor was glad to pass on my information to her colleagues in other colleges and universities. I am making time to also create shorter videos of sections from my hour long talk with these students. My intent is to post these videos online so that I can reach more student nurses like I have with this one class. I also really need to put together some sort of video/picture summary of our story. Its getting hard to use words in a condensed manor to share all we had been through in hospital for those 2 years. I also need to start my talks with, "Bella is currently doing very well." I probably should not start with "she has been through 12 surgeries, and bone marrow transplant, 2 septic shock episodes"...without stating first...that she is still alive! One, most likely worried student, interrupted me (with a slightly panicked tone) in the beginning, to ask how Bella currently is doing. Oopsy on my part there. But hey! first time for everything, and I will get better at these talks. I hope I get to do many more, especially for the nurses in our own province.
Thank You's
I am constantly thinking about and remembering all the donations, financial support, gifts and all of the other ways all of our friends, family and even distant friends have support us. Please know I think of this daily and not a day goes by where I wish I could see you face to face to say thank you. So if you are reading this and remember how you have supported Bella, Lyle and myself, please know I am remembering too and I'll never forget, thank you. The GoFundMe page that our dear friend Becky started when we were still in Saskatoon has carried us so far! The unexpected long term stays were SO long, and this support was a huge blessing that helped us through so much of the extensive medical expenses that added up for Bella's care. Thank you to all who supported us from there.
I still think about the photo-shoot that Natasha conducted. I look at those photos and can remember the faces of who gave so much to help. Thank You all!
The other week a restaurant in Swift Current called The K, prepared a separated, secluded section just so that I could feel comfortable having Bella out in public without worry of the risks a public place can bring like catching a cold or flu bug. This special gesture from The K allowed Bella to have a restaurant experience with my Aunty and Uncle who had not had a chance to see her since we have been home, and they were passing through Swift Current.
My goodness I could go on and on with many more Thank Yous. This road has been so hard, and stupid long...the amount that you all have supported us with has been breathtaking. I cherish it all and will pay it forward, and teach Bella to pay it forward also.
A last little bit of neat news!
Remember the promotional video we were asked to do for the Ronald McDonald House in Calgary?! Turns out that video got pretty far and recognised in an exceptional way! The President of RMHC Global chose our video out of hundreds of options, to be featured at the Global Gala in Pasadena, California! How cool is that?! All of the major CEOs and Employees of Ronald McDonald Houses all over the world got to see our story, Bella's story. Thanks again to the work of the MARCOM team and producer of NRG Media for making this happen and being so kind in they way they recorded and portrayed our RMH experience. It's also been exciting to hear that our promotional video has been viewed many times in a few of the Cinema theatres in Calgary, AB aswell. Here's the link to the videos they created, starring Bella and I. The one featured at the Global event is the interview style one of me talking. (Top, left when the 3 pop up on your screen.)
Link: https://drive.google.com/drive/folders/0B7-zMrUJ7EcSLVhURjZlcXF3TDQ
Videos:
A reminder that I quite often share up to date, day by day news on Bella's condition on her Facebook Page: Isabella's Mustard Seed. Please visit her page if you'd like to see updates on how our warrior princess is doing. I also have not figured out how to post videos on this blog yet, so I save those for her Facebook page as well. I recently posted a great one of Bella announcing her "Best Day Ever!" because she no longer needs any medications...and also because the words were on her shirt, and that got her super excited to shout it out loud...all day. :)
Let's Cell-ebrate Good Times, Come On!
So Holy Cow! Bella's turning 3 in like just a couple weeks! Last week it just sort of hit me as I was planning how to decorate and what cake to make... this is her FIRST birthday celebrated at Home. That feeling just over took me for a second and I'm still in shock about it. I am fighting to not let the pain and guilt of my baby girls first 2 birthdays, having to be spent inside a hospital, over shadow the joy of her celebrating at home...but its hard.
On to more good news! Bella's MRI and CT scans went very well and we no longer have to do blood work weekly. Her hgb has been very stable (118,112,113,117,113) and all of her specialist are very confident that the chance of a Hemalytic Anemia relapse is far behind us. So blood work is only once every 2 weeks now. Yay! Bella has been doing so well from a Transplant standpoint that all of her specialists are (in a funny way) fighting over who will remain her Primary. So her team of specialists are Hematology (The blood disorder docs), Immunology (monitor her new immune system) and Transplant (because she had a bone marrow transplant). They will all follow her for the rest of her life, but one generally is primary and then the main amount of information coming and going from Bella's Swift Current doctor only goes to one doctor, not 15. Each of the 3 specialists then have another set of specialists under the main specialists...if you follow. Lol It's a lot of doctors.
And more good news! For the first time in almost 3 years (since she was born) Bella is OFF ALL MEDICATION! YAY!!! Thank God. Her little system has conquered so much, this break for her couldn't come soon enough. Her bowels have been through the ringer with countless meds running through her tummy. I'm so happy her bowels can now begin to heal. The week of her MRI and CT was getting to a breaking point, the distention/bloat on her tummy has caused her so much pain and some set backs. It was getting so hard to manage that. For the last 3 weeks straight Bella has not slept through the night. And that is a big tell, because Bella has always been a good sleeper. SO she has been very uncomfortable. Now that she has been taken off those 3 antibiotics, her natural gut flora can start to come back and allow her system/bowels to function without bloat, gas build up and pain. Her doctors say it could take 3-6 months for the bad bloat/distension to go away, I pray it will go away sooner. She is still uncomfortable and not sleeping well.
There is more good news that comes with why she is finally OFF ALL MEDICATIONS! The main purpose of the MRI and CT scans were to look at all of Bella's lymphnodes. They needed to compare the size of them to the CT scans they took before and during transplant. The antibiotics were treating the MAC bug infection. They knew the antibiotics were working because her lymphnodes did not increase in size. After the year long course of antibiotics they needed the scans to show them all her lymphnodes remained smaller or normal size. An increase in size would suggest the MAC infection was still in her system. Thank goodness that is not the case, her scans were clear and they are confident the MAC bug is gone. They also needed to have her immune system in a state where if a trace of the MAC bug was still in a lymph-node they couldn't see or it came back, then her stronger immune system would know to recognise it, and kill it...like yours and mine have. The scans wouldn't of been able to happen if she had to remain on steroids. So happy that is behind us. So much has been riding on so much, I'm just happy it is all good news and good outcomes for our mighty warrior.
Bella's Immune System Outlook
Since Bella has been off steroids now since Sept. 5th, she is no longer immune compromised. Her Tcells have remained at 100%, meaning they have remained in her body at a number above normal and are functioning the way they should be, meaning they can kill viruses. For Bella to have a fully normally functioning immune system, Bcells need to come in and do the same thing, and thats what we have been waiting on for over a year now. That chemo like med to combat the Hemalytic Anemia wiped all her Bcells out, back in September 2015. Now they have started to come back in, but they are not at normal range yet. However, the last count of them has doubled from the very first count of them starting to recover... so they are increasing in numbers! Bella has a set of requirements that need to happen for them to even test her Bcell function off IVIG to see if she'll need IVIG anymore. She needs to be off steroids for a while, check! She needs her B cell numbers to go higher, getting there. And her system needs to makes its own Immunglobulins, IGAs and IGMs, hopefully soon. I bet most of you are like, "IG whats?" So I found this wonderful kids book that I am going to print for Bella from the Immune Deficiency Foundation. Its a easy to understand children's book that helps people understand more about the parts if the Immune system like the IGMs and IGAs and how they are important to Bella. Here's the link if you want to learn more, take a look:
https://primaryimmune.org/wp-content/uploads/2011/04/Our-Immune-System.pdf
We have about 6 months left for her Bcells to come up to normal range and work with her Tcells to make her fully functioning immune system. Once this happens, Bella will be allowed to start normal Immunisations and Vaccinations.
So what if her Bcells don't get to normal range? Well, of course we don't want that but we need to be prepared for that situation if it occurs. If they don't come in and work with the Tcells, Bella will need IVIG infusions for the rest of her life. These are the monthly boosters that protect her, like if she had a normal working immune system like you and I. She would not have a cvc in her chest for the rest of her life, so then it would also mean two needle pokes at least once a month for these infusions. The part I haven't figured out yet, and still have to ask about, is what exactly she is protected from? I know IVIG keeps her protected from a lot, but its not a measles vaccine or polio vaccine. So I need to find a lot more information out and try not to worry, but remain hopeful in the mean time. The things I think about around this topic are the hopes that one day she can go to daycare or school worry free. When we don't have to worry about any issue around catching something that, for example, if she were to catch right now...would be deadly.
Another thing, that is a current issue for us (could be a future issue aswell) is, we have to travel for these monthly IVIG infusions, to Calgary. Swift Current still has not acquired someone for this because it is Pediatrics. Our Calgary team is looking into this for us and hopefully even by Christmas they can figure out a way to have her IVIG done either closer to Swift Current or right in Swift Current. If they can do that, than no more monthly trips to Calgary! I think it would finally mean a trip to Calgary once every 3 months, instead.
Bella's MRI & CT
We are so thankful Bella got in for these earlier than expected. A lot had to come together for her to actually even be able to have these scans done, and then on top it, these scans needed to be done so that she could come off her remaining medications. It was a hard wait, but the day finally came. Bella has never had an MRI before only CT scans (3 total now) so I was unaware of every detail around a 2 year old getting an MRI. I completely forgot that receiving anaesthetic, to be put under, paralyses her bowel motility and just made all of her already horrible tummy issues, worse that week. So her bowel motility is still in recovery from the anaesthetic. You have to be completely still for an MRI, that's why she needed to be put under. Which is something I have never stayed around for, for Bella. This was the first time (out of all of her surgeries prior) that I stood there and watched them put her to sleep. And now I know why I never felt I should, all the times before... it was really difficult for me to watch. Bella was completely fine, totally comfortable...its me and what I saw, that was really hard. Bella's nurse for the MRI, of course new Bella and her many surgeries and was surprised I hadn't ever been there for that part before, but she understood. I guess for me, walking into the OR or past the area where they always took Bella away for surgery, gave me a sense of worry and fear...and I never, ever wanted a micro ounce of fear to enter my mind before any 12 of Bella's past surgeries. I felt I could remain calmer, stronger and more hopeful if I stayed out of the areas where that sight could trigger worry and fear to enter my mind. It helped that Bella always went with her surgeons, with a cheery smile or just excitement over a new room to be in, out of her isolation room. But I knew if I saw them put her under, it would be more difficult for me to remain more positive in that OR waiting room.
MRI's are not surgery of course so everything was done right in the room, including putting her to sleep. It began faster than I anticipated and I didn't get time to ditch that part and run away to the waiting room. Instead I fumbled through some jumbled words that fell out of my mouth as the Anaesthetist starting infusion Bella's CVC line with the anaesthetic. The doctor and nurse had a good chuckle, and I did too after...but it was hard for me to watch her struggle to keep her eyes open and then lay there limp.
The doctor prep'd me on everything they would do before, during and after the MRI so I had just thought I was going in the room to attached Bella's Gtube vent tube and then go. Nope, they were all set to start before I could leave the room. So as the doctor hooked up the anaesthetic to Bella's line I saw him attach this large white substance in a tube. And I think I said something like, "So, that's the anaesthetic? Doc says,"yes." Then I say, "Oh, okay, so I'm sure given your obvious expertise that that's the correct amount for her size, weight and all, and ya, of course it is....sorry."
Then we all kind of giggled around my nervous, jumbled question.
How Is Our Ex-CELL-ent Bella Brave? See what I did there?
Well I'm going to need to brag here a little bit because my two year old (soon to be 3y old) is already singing songs! She has memorised a ton of songs on her own and loves singing.She knows all the words to Twinkle Twinkle Little Star, Old McDonald, ABCs, Baa Baa Black Sheep and Row Row Your Boat!
She loves dancing! I hope so so bad that come spring her immune system is functioning well enough so that I can put her in some music or dance classes. I'm just so thankful she can and does enjoy these things at home given all the isolation she has had to go through. Makes me want to cry so many happy tears when she just gets up to sing and dance around the room.
Bella is doing wonderful at her physio appoinments for her right wrist and hand function. Thankfully part of her MRI focused on the nerves and muscles in this wrist and her Calgary Specialist will review what the MRI showed, with us in Calgary, next week. We are hoping she doesn't need surgery to regain full function. Bella will wake up almost every morning asking if she gets to go to physio, she loves it. Potty training has taken a big hit. With how bad her tummy distention has made things, its really uncomfortable for her to sit in certain positions. I'm so happy her bowels can begin to heal so the bloat goes away. I have been worried about it affecting her physical development in terms of climbing, running, potty training, etc. She'll catch up no problem though, just like after every other surgery shes had. She always showed that it won't hold her back for long.
One day about a month ago the teacher in me emerged and I showed Bella some learning worksheets. Well she loves them! I just printed off some fun sheets that help her learn to write, draw, count and color. Now sometimes if she is bored and trying to think of what she wants to do next, she request "work sheets". Her favorite part is having Lyle or I help her write her name at the top.
Waiting has been a tricky thing to teach. I haven't googled this special milestone yet, but I'm assuming its probably not in the near future. What I have tried so far is asking Bella to count her fingers while she waits. Well...that was a quick FAIL. Now all I ever get is a quick ten seconds before a big'ol melt down happens. She can count to ten really well, so I think its time to start counting to 20. She's almost there, she can get to 16 on her own. But now, when I say something is not ready, or wait a little longer she looks at me with these huge puppy dog eyes, sometimes with tears and says, "Okay, mommy...but just a little bit?" Melts me into a puddle every time.
How Am I?
I have to say, my PTSD treatment sessions with my Mental Health nurse have been helping me in so many ways. I am so thankful my doctor set me up with a mental health nurse for this, I'm stronger in more ways than I could see before. And I am open to share because it may just help someone else. It was daunting at first when, after understanding our story, how long my nurse thought I may need support in this way, for. But the way I have suffered from PTSD in not a typical way. Many understand it as someone suffering from one traumatic event or one traumatic experience. I have had many, given Bella's experiences, and then also current situations continue to be constant triggers trying to pull me into a constant state of fear vs healing from all the trauma. I can sum all this up in almost two words, "Bella's Bowels." The conditions, episodes and issues with Bella's bowels have been a constant from the day she was born. They have not been a single event, or a single traumatic episode like the 2 times she went septic. They have been the cause of many traumatic events, but also ongoing trauma. Bella's Bowels have been a constant trauma from birth and I am finally receiving support, coaching me on how I can train my mind to not be so severely effected any longer. It can be quite debilitating some days. The photo I shared about the Linen Cupboard Metaphor is very helpful when understanding this form of PTSD. And given recent issues with Bella's distension and bloat becoming harder to manage, this helped me not completely break down when Bella has tummy troubles. Lately, fear would swell up in my mind, memories from the first months in Saskatoon. Fear around bowel blockages, scar tissue legions occuring, micro perferated bowel causing sepsis, puking causing her to aspirate and gain infection, and on and on. So much of this fear would build inside me in the recent weeks. If an afternoon went by and Bella hadn't pooped. It would cause me to breakdown in fear, crying scared about what this meant, or is everything still ok?
I am thankful for my MH nurse and the treatment material she can use to help me, like these PTSD tools and EMI (Eye Movement Integration therapy). I'm getting closer and closer to being able to function through daily life and be more prepared for setbacks or minor medical bumps on Bella's road.
My Talk With RN's (Registered Nurses) of the Future
Eee! I'm so excited to talk about this! Having been given this opportunity has made me feel as though my whole purpose, after going through what I have with Bella as a Medical Mom, has been fulfilled! I want to do more!
I'm so thankful for the instructor of this RN class to invite me into their classroom to give my perspective and story. I was able to share our story so that our rare long term hospital stay can help them better understand patient and family experience and better communicate with their patients. And the reward from being able to speak with these students, it priceless.
Thank you to my fellow medical parents from my online groups who offered me their input. Please know I compiled ALL of what you all wrote and was able to combine it on handouts for each RN student. The RN students were so kind and receptive. As my eyes would well up with tears, explaining certain experiences, they listened with calm open ears. And the feedback they offered me after I finished speaking is so valuable. I was able to record my talk so I can prepare for more opportunities like this, and I look forward to many more! The instructor was glad to pass on my information to her colleagues in other colleges and universities. I am making time to also create shorter videos of sections from my hour long talk with these students. My intent is to post these videos online so that I can reach more student nurses like I have with this one class. I also really need to put together some sort of video/picture summary of our story. Its getting hard to use words in a condensed manor to share all we had been through in hospital for those 2 years. I also need to start my talks with, "Bella is currently doing very well." I probably should not start with "she has been through 12 surgeries, and bone marrow transplant, 2 septic shock episodes"...without stating first...that she is still alive! One, most likely worried student, interrupted me (with a slightly panicked tone) in the beginning, to ask how Bella currently is doing. Oopsy on my part there. But hey! first time for everything, and I will get better at these talks. I hope I get to do many more, especially for the nurses in our own province.
Thank You's
I am constantly thinking about and remembering all the donations, financial support, gifts and all of the other ways all of our friends, family and even distant friends have support us. Please know I think of this daily and not a day goes by where I wish I could see you face to face to say thank you. So if you are reading this and remember how you have supported Bella, Lyle and myself, please know I am remembering too and I'll never forget, thank you. The GoFundMe page that our dear friend Becky started when we were still in Saskatoon has carried us so far! The unexpected long term stays were SO long, and this support was a huge blessing that helped us through so much of the extensive medical expenses that added up for Bella's care. Thank you to all who supported us from there.
I still think about the photo-shoot that Natasha conducted. I look at those photos and can remember the faces of who gave so much to help. Thank You all!
The other week a restaurant in Swift Current called The K, prepared a separated, secluded section just so that I could feel comfortable having Bella out in public without worry of the risks a public place can bring like catching a cold or flu bug. This special gesture from The K allowed Bella to have a restaurant experience with my Aunty and Uncle who had not had a chance to see her since we have been home, and they were passing through Swift Current.
My goodness I could go on and on with many more Thank Yous. This road has been so hard, and stupid long...the amount that you all have supported us with has been breathtaking. I cherish it all and will pay it forward, and teach Bella to pay it forward also.
Special dinner date at The K Restaurant
Thank You for the support and memories!
Bella at the very clean and comforting Urban Ground Coffee House in Swift Current
Thank You Alana and Prairie Pop'n Balloons for the fun balloons that are still making Bella giggle every day.
A last little bit of neat news!
Remember the promotional video we were asked to do for the Ronald McDonald House in Calgary?! Turns out that video got pretty far and recognised in an exceptional way! The President of RMHC Global chose our video out of hundreds of options, to be featured at the Global Gala in Pasadena, California! How cool is that?! All of the major CEOs and Employees of Ronald McDonald Houses all over the world got to see our story, Bella's story. Thanks again to the work of the MARCOM team and producer of NRG Media for making this happen and being so kind in they way they recorded and portrayed our RMH experience. It's also been exciting to hear that our promotional video has been viewed many times in a few of the Cinema theatres in Calgary, AB aswell. Here's the link to the videos they created, starring Bella and I. The one featured at the Global event is the interview style one of me talking. (Top, left when the 3 pop up on your screen.)
Link: https://drive.google.com/drive/folders/0B7-zMrUJ7EcSLVhURjZlcXF3TDQ
Videos:
A reminder that I quite often share up to date, day by day news on Bella's condition on her Facebook Page: Isabella's Mustard Seed. Please visit her page if you'd like to see updates on how our warrior princess is doing. I also have not figured out how to post videos on this blog yet, so I save those for her Facebook page as well. I recently posted a great one of Bella announcing her "Best Day Ever!" because she no longer needs any medications...and also because the words were on her shirt, and that got her super excited to shout it out loud...all day. :)
Let's Cell-ebrate Good Times, Come On!
No comments:
Post a Comment