When people ask me on a whim, "How are you doing?" Instead of quickly muttering an easy "fine, busy or good" because I don't have an hour to really tell you about the last 21 months of my daughter's life...
I'd like to say, "Imagine yourself on a rollercoaster for the first time, it's tracks fly you through a never ending jail cell and the only way to stay alive and make it to the end of the ride is by dodging firey crossbow arrows shot straight at your heart.
That's how I'm doing.
It's a good thing I didn't have time to write this blog post Monday or Tuesday night. That would of just been an angry, sad tone, negative sounding blog post.
"And we just don't need that kind of negativity around here now do we Kyla!?!"
"No we don't, Positive Kyla."
"Now let's hear a cheer for Bella fighting the bug, no fever today, antibiotics are working!"
"But we are admitted in hospital, Bella is hooked to lines and cords again, flashbacks of past hospital life make me cry, Bella's hooked up to monitors as well."
" I told you to go home negative Kyla. Go on now, git."
It is extremely hard to stay as positive as I sound most days but I strongly believe that speaking positive brings positive. I don't want to let the overwhelming agonizing emotions from every curve ball bring me down when Bella needs my energy, she needs my prayer, she needs me ready. Life is throwing us every curveball, bad card, and crap that it has in its pockets. But Bella's going to hit everyone of those curveballs out of the park.
So lets start with the most recent rollercoaster ride: Our recent admission back in to hospital. Monday started as a normal day but by 3pm Bella seemed a little off. She wanted me to hold her and she just nuzzled into me for a solid half hour. I thought that was a little strange and her energy disappeared and she felt warm. No pukes, no diareah, no crying, but a high temp, a temp of 40!
So her BMT nurse said bring her in right away. They took blood cultures to send off, checked her all over and we were admitted one unit 1 at ACH by 4pm.
And it all comes flooding back.
It's only been 3 months out of hospital but coming back brought a flood of agony and anger I was not prepared for. And it all hit me as soon as Bella was hooked to IV, hooked to the monitor and poked for blood. They had to do a heal poke for a cap gas, but also drew blood from her central line. The weighted feeling of having to be back in hospital with Bella is just the raw feeling of breaking down and crying, alone, in a jail cell. With Lyle having to be back in Swift Currenr for work, it's even more difficult. Monday night was full of unknowns, why the high temp? Bella's heart rate was almost 200, she was puffy, couldn't sleep, in pain, fever, and we didn't know why yet. I didn't want the fear and reminders of her Sepsis attacks overwhelm me but they were there, and I just prayed and cried and prayed.
So Monday and Tueaday were pretty sleepless. I just couldn't keep my eyes off her and the monitor that showed me her stats. Waiting for the antibiotics to do their job with every next dose and pray the docs figure out what's happening right away. They knew right away there was infection but we needed to make sure it didn't affect her line. She currently has too much blood work these days that having her keep the central line is essential so that they don't have to poke her for blood work.
Poke... Such a light, pretty way of saying what actually happens: You hold your child while they root around for a vein. And your child has to endure as many jabs as it takes because they need the blood to know exactly what her immune system is doing, her counts, her med levels. I just can not fathom them having to poke Bella for blood, this line (CVC) must remain clean.
So fast farward to today. It's day 4 that we have been back on Unit 1. They have taken blood cultures from Bella everyday. First they take them to figure out what bug she has, if she has one cause it could of been a virus. Then we wait for the blood tests to come back negative. So they found Bella had a bacterial blood infection. One that is common to get when you have a central line (CVC) sewn into your chest. Good news is they know what it is and can treat it. It is a Gram positive bug of the Micrococcus species that resembles Staph. (The bug that almost killed Bella and sent her into 4 Sepsis attacks on March 19th before her BMT was a Gram negative bacteria.) This is a totally different scenario now, and on the other side of Bella's BMT (Bone marrow transplant) with a new working immune system that can fight bacteria now. The docs told me this recent bug is on our skin all the time, and can find its way to a central line very easily, in any person. It's nothing we did wrong when cleaning her line or what not. This can just happen. That information is quite hard to swallow when you are doing everything thing in your power to prevent infection.
So they run the antibiotics that kill this bug and it should go away. Crappy news is this course of antibiotics is 2 weeks IV. They also did an echo of Bella's heart to help determine if this bacteria was forming and growing in Bella's line. That would mean they would automatically have to pull her line. But it's not, so they don't, thank God.
Bella having her ECHO done. We did eventually have to take her dressing off so the tech could get an exact picture of the tip of Bella's CVC and her heart valves.
Another good sign is Bella's fevers stopped. They found the sensitivities to the bug, and have the right antibiotics to get rid of the whole infection. So it's working and she's feeling better. I'm not allowed to take her on pass (Out of her hospital room) until they get a negative culture back from her daily bloodwork. This usually takes a solid 48 hours to say for sure if it's negative. So hopefully the blood they took on Tueaday or Wednesday shows negative by tomorrow. They also tell me the 14 day antibiotic course only starts when that first negative result comes back. So we may be in hospital until Sept. 9th.
On a random side note, I wouldn't be walking Bella outside at all in Calgary this week. It's odd how upset I am about her being isolated in a hospital room again when I would not be able to take her outside anyway because of the horrible thick smoke in the air from the wild-fires. Calgary's air quality is extremely poor right now.
Bella's 8th Surgery
What first happened was that Bella's BMT docs over-shot her immune suppressant med (Cyclosporn). This can have an effect on her Lymphnodes. They had been tracking the size of a few of her nodes for month and a few on the right side of her neck got larger and stuck around. This along with some of Bella's numbers that shot up, alarmed her docs and they wanted to check it out quickly even though they felt they were looking into things quite early, they wanted to be extra safe.
These numbers that went up could mean 2 things: 1. Her lymphnodes are reacting normally to a virus we all have or 2. She could have PTLD (Post Transplant Lymphoma Disease), cancer.
Talk about a slap in the face for possible outcomes. Great! The regiment of Meds to cure our daughter may have also gave her cancer... No thank you.
So they planned Bella's surgery to remove these lymphnodes and know for sure that there is no PTLD. The anxiety Lyle and I felt for those 2 days waiting was horrible. Thankfully on the Thursday (before we got the biopsy results) her BMT nurse called me and said the numbers have come down. This was a good sign that they did just over shoot her med dose, there should be no PTLD and that they needed to lower this med dose and that worked. So a good sign that it was not PTLD. But the biopsy of the nodes would tell them for sure.
CT Scan: Bella also had a CT scan of her whole body prior to surgery which also gave us good news. This showed the function of her organs as normal and also showed no other hiding lymphnodes that were of concern. All normal.
Camera scope: Bella also required a camera scope of her air way and back of her tongue before surgery. This was a crappy experience for her but she actually handled it pretty good. Lyle had to hold her so the doc could put the camera tube down her nose into her throat. I tried to hold the iPad for distraction but she just cried and pushed through it. The doc wanted to make sure the nodes on the back of her tongue were not too large cause that could affect how she was intubated. All precautionary checks before surgery.
The surgery itself was pretty quick but still hard on our little girl. She had to be NPO ( no food or drink) for 13 hours total. For all of Bella's previous surgeries she wasn't eating or drinking by mouth so it wasn't as hard to be NPO. Well it was still hard but in different ways. This time Bella was eating, and knows how to request food when she's hungry. Now that she could eat by mouth and I had to tell her "no" because of this surgery, was heart breaking. The morning was really hard, she got quite upset. By the afternoon she sort of "gave up" on asking and then it was really hard on me. I was just thinking, this is another set back for her. Her surgery didn't happen until 5pm because she was an "add in" to the OR surgery docs that day. She also had to be intubated (breathing tube down her throat for surgery) because they wanted to be extra safe and because they weren't quite sure how she would need to be positioned to remove the 2 nodes from her neck. So all precautions were taken with her breathing. If this was you or I having this procedure or even an older kid, they could just give local anesthetic, cut the skin and remove the nodes. But not in Bella's case.
She came out of surgery quite upset. With a sore throat, hence the pictures above of her drinking cold apple flavoured Pedialyte. When she's been NPO that long or sore mouth, she will drink from a bottle for comfort. This is how I know she can suck and drink. So we were really excited that a week after this surgery (August 23rd) she actually started drinking from her sippy cup with the straw!!
It was also helpful to hear her surgeon's concern about minimizing the scar for Bella. She has had so many surgeries cause so many scars on her little body. It was helpful to hear a surgeon try his best to lessen that and hopefully hide a tiny scar that now sits just under her right ear.
Bella recovered quite well from this surgery and Lyle and I were able to take her back to RMH that night at 9pm. She was so hungry (and so were we because we tried not to eat in front of her all day) that at 9pm she ate some perogies with us as a late supper.
So those have been a lot of our ups and downs lately... Mainly downs with good outcomes. So happy she does not have PTLD cancer and that the blood infection she had is gone and we can continue to use her central line for blood draws. We are currently waiting for the confirmed negative culture date (hopefully it was Tueaday or Wednesday) because from that day, Bella's on IV antibiotics for 2 weeks. I should find out in rounds today from her doctors. But most likely we'll be in hospital until Sept. 8th for her course of antibiotics.
Thank You Again and Again
I have to say with Septemeber coming up I have been quite sad and depressed about missing my career. I have been pulled away from my job, my family, my life in Swift Current. I've never felt more detached from the world and my own life because of our extended hospital stay for Bella. This all comes flooding in on me this month when my mat leave support is officially over as well. Lyle and I can't thank you all enough for the financial support and generosity for our family. Especially this month, it eases so much anxiety I have. I thank God for the PCIC (Parents of Critically Ill and Injured Children) benefits that carried us for the first 9 months of Bella's hospital stay. That EI support was a huge blessing. And then of course my year mat leave support and the huge support from the Chinook School Division (where I work in Swift Current as a Special Needs Teacher.)
But the financial EI support is officially all over now and we are still in hospital, Calgary with Bella, for Bella.
Septemeber being here also starts a clock for me. The clock that would be my mat leave at home with my daughter. I don't get that. Based on what Bella's docs say about Bella's case and when we can be home with her, I can not plan on working again until Sept. 2016. So I'm coming to terms with not getting a year at home with my daughter before I need to work again.
I notice all the donations on Bella's GoFundMe site and I cry thankful tears. It means so much right now. Thank You.
The Ups of our Recent Ups and Downs.
How Things Are Going Today • Day +156 post BMT
Well since Monday we have settled in to our room on Unit 1. Bella has been fever free and happy for a few days now and we want it to stay that way. She has been really cuddly lately. She'll pull me in for a hug and wrap her arms around my neck. She'll nuzzle her head on my shoulder and hold my hand while she snacks and watches cartoons. My baby girl is so good, such a blessing. She has been happy to chat with some of her old nurses and blows them kisses and gives them all smiles. And she has been chatting up a storm and continuing to talk a lot. Her doctor was quite impressed with her iPad skills yesterday. Being locked away in hospital, I don't get to see what other kids her age are doing but I hear from a lot of other people how impressed they are with Bella's advanced iPad and speaking skills. For a few months now Bella has mastered the iPad. Well since she turned one in December for sure. She can turn it on, swipe in to her apps, choose an app game, or photos to look at or YouTube. She'll swipe and click to get where she wants. She'll goin in and out of app games and play them. She'll also swipe and select her own YouTube cartoons. It's pretty cool to watch. She even knows when to swipe up and down or sideways.
Our room (this time) on Unit 1:
Bella's Walk of Hope
A huge Thank You to my cousin Sandra for planning this walk of Hope for Bella. My mom and sister and cousin are organizing pledges for the marathon my cousin will be in. I can't thank you all enough for this support for Bella. If you would like to pledge or support Bella's Walk of Hope please contact my mom, sister or cousin Sandra. If you need help with ways to contact them you can message me on Facebook as well. (Kyla C Thomson)
Check this out!
I found out that through the ACH website you can send Bella messages! They print, seal and deliver the message to Bella in her room here at ACH. This link allows you to type up the message you want to send.
Thank You For Giving Blood!
Bella needed a blood transfusion on Wednesday. She received blood because her Hemeglobin was too low. I think this is about the 10th time Bella has needed blood in her life. Thank you all so so much for giving blood!
