Treehouse and Chill • Daily Diaries

Thursday Oct. 15th 2015 

(1 week ago)

I think I've come up with a better way to blog that I am goin to try so it's not so overwhelming when I have a bunch of updates pile up on me and then things get crazy with Bella's hospital life. So I'm going to try daily diary type writing on here, save the draft, and come back to working on this post when I have time in the evenings. This may be an easier way of posting in Bella's blog maybe once per week. I also have found some moments that I should of shared, are missed when I don't write about them right away. 

A Side Issue - Bella's Right Wrist

This has been on the back burner since Bella's BMT back in March but her wrist doctors have been on the sidelines still supporting Bella with improving her range and use of her right arm/wrist/hand/fingers. 

Back Story: In my whomb Bella's right arm was very squished and stuck in the same position for a while. So bad so that they couldn't even measure it properly through an MRI when I was 7months pregnant. And when she was born her thumb was flush with her wrist, it was that bent. So the doctors know there may be some sort of nerve damage she has there and it has affected her use of this wrist/hand.  

Since birth Bella has had to have a few different braces/splints on her wrist to help stretch it out and give her more range of motion and use. She uses it as best she can and definitely doesn't ignore it even though she can't use it as well as her left hand. Whats affected most is her grip. She also has limited extension from her elbow being so tight from it being so tucked and squished for so long. 

The doctors are not sure how this nerve damaged happened or even exactly where and what the damage currently is. They need to figure this out before deciding if a surgery will fix it. 

So what now?

Bella had a nerve conduction test on Tueaday that was not pleasant. They had to send pinching electrode shocks about 20 times through her right arm. She was pretty strong and handled the first couple , but cried through the rest of them. They still are unsure as to what exact nerve is damaged and how. But they need to know and do more tests to figure out what nerve to fix. If its the nerve, the nerve connection to muscle or just the muscle causing this issue? If a tendon transfer surgery fixes this they need to know what tendon to transfer so they don't transfer a weak one. 

Bella's use has also improved so this makes them wonder if surgery should happen now or later. The next test to help in this decision would involve them putting tiny needles into Bella's arm to test the nerve to muscle connection. Knowing Bella has a surgery coming up on Nov. 4th they may try to do this test then, while she's under so it doesn't cause her pain. They may also do an MRI at this time to help understand her nerve damage better and then be able to really decide if a Tendon Transfer surgery is the fix, or if Bella will just regain full use over time. 

The 9th Surgery Decisions: 

This 9th surgery for Bella is meant to be a "happy" one because it's a step closer to home. But now with the recent hemolytic anemia issue, I'm not sure if this surgery will be postponed or not. We have 3 weeks to decide. Changing Bella's Broviak lumins (the iv lines dangling from her chest) to an Ivad port (button under her skin) before going home to Swift Current was supposed to happen because #1 she should only be requiring blood work once every 2 weeks at most before we go home and #2 because the port is less risk of infection. Well... Our recent hospital admissions have meant DAILY blood work. So that is a step backwards in terms of Bella getting this Ivad port. I haven't spoke with the docs about this yet, but I'm praying this all smooths itself out this week. 

I'm hoping the surgery still happens because Bella is also supposed to get the much "easier to use" Gtube Mickey button for her belly. Genetics is also chiming in to get a skin sample because Bella's original blood before her BMT (to use for genetic testing) is in Winnipeg and there is just a tiny bit left. And from her BMT, her blood and blood type have changed to the donors. Lastly is that the wrist doctors need those 2 tests done for her wrist while she is under anesthetic. 

A better afternoon

By the end of the day Bella was showing me a glimpse of being back to herself. She was walking with the pushcart at lot and just loving it, giving me snuggles and we even had a mini dancing session. 

Friday Morning:

Things took a turn again and her hgb started the day at 81. Basically her cut off point to need a transfusion. So this is telling us that the steroids we tried for the past week are not doing their job. We can wait and hope that maybe this is a slight dip and she'll come back up by the time they check it again Saturday morning. But by the afternoon Bella still had no energy, quite upset and looked more pale. 

Friday Night @ 2 am:

I'm up right now because of a major flaw in this medical system and I'm more than pissed about it. To add to this I had to deal with a power trip, young resident doctor you obviously didn't get the right communication from Bella's day team of doctors. I have been through this way too many times and I'm sick of the lack of communication, and preventative measures/ plans that get thrown out the window when you leave decisions to power trip snot nosed residents at 2 am.

 Sick of it! 

Let's call her Dr. Peabrain. 

Bella's blood pressures have been high for the last week. We know this because of the steroids she's on. They were on a high trend yesterday so we made a plan with Bella's day docs to set perameters so we are not kept up all night with 500 fricken blood pressure tests on Bella's arm and waking her up for the oral med under the tounge. 

So here we go, 2am Dr.Peabrain has to fight with me in the hallway because I'm not going to let her do another fricken bp, that wakes Bella up, for nothing, when we just did one 15min ago!!! 

And you know what Dr. Peabrain does...threatens me with Brain Bleed theories! Are you effing kidding me??!!

#1 You do NOT threaten a mom ( or any parent for that matter) who has sat at their child's beside day after day, watching anxiously while doctors at times seem to solve problems like she's a science experiment. You don't NOT threaten a parent when what they need 99.9% of the time is REASSURANCE of a proper med dose, or plan. 

#2. Don't be a fricken Dr. Peabrain.

She completely denounced the plan I had made with the day doctors about Bella's night time blood pressures and when I questioned her plan, she went on a condescending power trip of threats like I wasn't taking my daughers blood pressure health seriously and proceeded to threaten me with Brain Bleed theory.

I just wanted to be reassured that her change of plan (though it was different from the trusted day team doctors plan) was safe for my daughter. 

Dr. Peabrain did not do that. She did the opposite in a real bad way. She threatended an already exhausted, worried mom with outrageous theories causing her (me) to staying awake longer, unrested, stressed, more worried and doubtful.

I am happy I am able to finally communicate this hidden flaw in our medical system and I need to find Dr.Peabrain and explain this to her so she doesn't do it to another mom or dad... and I will. 

But if you are a nurse or doctor out there reading this right now, please take it to heart and help prevent scenarios like this for other moms and dads. Please stop the production of Dr. Peabrains in this world. 

Saturday Oct. 17th

This day is Treehouse and chill. 

Bella is exhausted. Too tired to even utter "momma" and crying a lot from being so uncomfortable. I had an amazing, experienced nurse let me cry on her shoulder this morning as she reassured me Bella's going to be ok, in all the right ways today. 

Bella's hgb fell to 69. Waaaaay to low again. She's got her 4th blood transfusion (in one week), running right now. 

Bella has been very uncomfortable. Her energy very low due to HGb of 69, her tummy is very distended and she is backed up because of the anemia and steroids. She crying in waves and agony because of the steroid and the aches it is causing in her tiny body. The doctors will be in soon to discuss next steps for treating the Hemalytic Anemia. And hopefully after the blood transfusion, stool softener, Tylenol and nap, she'll wake up feeling much better. For now, it's Treehouse cartoons and chill time.

New Plan / New Med

We are starting the medicine Retuxamab today to fix Bella's hemolytic anemia. The doctors are very confident this will be the fix. Problem is they had to get permission to use it and to qualify to use it they had to try the course of steroid meds first. It's also like a $10 000 med. Bella will be given 4 doses, 1 per week. Retuxmab is good because it means we can start taking Bella off the horrible steroid (Predisone) that causes her so much hurt, anxiety and just makes her a completely different kid. The crappy part is that Retuxmab must be given via iv over 7 hours! I'm calling it Bella's "high maintainance med." ha ha. It's technically a chemo med so there are many precautions and procedures with giving Ratuxabab, although it does not cause any chemo type effects at all, so thats good. And already within the first hour it brought down Bella's rediculously high blood pressures she's been having. So that's really good as well. 

The rest of this day turned out wonderful and I am so happy Bella's doctors are quite confident with this medicine fixing the hemolytic anemia issue. If all goes well and Bella's hgb stabilized and continues to stay around 100, we could be discharged and able to be back at the Ronald McDonald house later this week.

Tuesday, Oct. 20th

Even though we are still in hospital things have been going pretty well since Saturday. Bella's hgb has held steady with and few dips, but only to come right back up without needing any blood transfusions since starting the new Retux. Med. I'm getting her out of the hospital on daily passes and those have been going good as well. Her hgb is hovering around 80-85, but she's also getting 2 blood draws a day and the draw for her cross match was quite large (10mL). Once she has a couple more steady days, then the doctors will start to wean off the steroid med and we'll hopefully be discharged. Our days in hospital look mainly like this:

Wake up around 7/7:30am

Nurse does vitals at 8am 

I get Bella's meds and breakfast going

Watch cartoons, wait for Doctor 

Doctors assesses Bella

Between 10am-12pm I wait to go to Rounds (daily meeting with Bella's medical care team)

Get Bella's 11am feed/snacks going

Bella naps 11:30am- 1:30pm

Take Bella on pass to RMH 2-6pm

Back to hospital room for assessment and bloodwork. Nurse assessment.

Meds/bath/get ready for bed.

8pm, New nurse and his/her assessment

Sleep another night in hospital

There's a lot more to a typical day then that, but that's the gist. 

Wednesday Morning

Amazing, Thoughtful Friends Brighten My World.

Right now I am typing this blog post with so much ease! My friend Bradie suprised me with a bluetooth keyboard that works with my phone and iPad! How did I not realize these existed before?!  This may get a bit dangerous (evil laugh**) as its going to make it a LOT easier to write more, which would mean longer blog posts. My kind husband has informed me they are already a tad long to read. ha ha. Either way I'm sure I have some followers out there that look forward to my weekly novels about Bella's progress. 

Selfie while using the Bluetooth keyboard for this blog post. 

Thursday, Oct. 22nd 2015

This week has turned out to be a lot better for Bella, she's feeling really good even though we are still admitted in hospital. We have been taking daily passes to go out for walks and hang out at RMH. Her hgb has been down in the morning and back up in the evening as they are drawing blood from her and checking twice daily. After the 4th day of this "up and down" hgb level buisness, they are more confident that she is actually steadily above 80 and that there may be some lab errors with the early morning draws. We'll chat at rounds today, but hopefully they will go back to checking just once daily now. I also am anxious about them accessing her line so much as that poses more risk for infection. And less blood work is a step closer to home, so lets get back on that train. 

Me:

Well, I've been feeling a lot better and less down. I've managed to shove the setbacks Bella has had, to the back of my mind and try to take things one day at a time lately. I know once we are discharged, and back to just weekly clinic visits, "going home planning" will kick back into gear. So far its looking like we could be discharged by Monday. Bella has her 2nd dose of Retux med (that takes 7 hours to infuse) this Saturday. They most likely want to keep us inpatient for that. So, next week we'll hopefully be back to our normal routine at the Ronald House. And my mom is coming to visit too! 

The doctors are happy with how well the new med is working and getting rid of the Hemolytic Anemia issue. Bella's immunologist is very confident after the second dose of Retux, that we'll see her hgb levels stablize even better at a higher more normal level. 

Mommy Break

Thanks to my hubby's wonderful sisters I had a much needed Mommy break last weekend and was able to relax and have fun at his sister's Stella and Dot party while Lyle stayed with Bella. It was such a wonderful much needed night out.  Thank you so much, Jo and Melissa. 

What A Gift!

Keep Calm and be Bella Brave

A wonderful coulple I know at the house (RMH) have a sweet daughter also named Isabella. Their cousin had these amazing shirts/sweaters made for their Isabella for the Rock the House Run back in September that read "Bella Strong." As a gift she made two for Lyle and I! (Lyle's  Tshirt is back and white) She even added details that I absolutely love like: Bella Brave, the mountains picture, She Has Moved Mountains and #BellaBrave.  

Thank you so much Catherine, we love them!

Today, RMH had some pretty amazing guests stop by to spend time with all the families. I was so happy I was able to take Bella on pass from the hospital to meet all these amazing guys, The Calgary Flames! 

Tonight I am going to bed happy. Happy Bella is feeling so good, happy her medications are working, happy she is happy...life is actually pretty good in this momment. I can take a deep breath and smile tonight before I rest my head. 

...I could be working on more YouTube videos...sheesh I've gotten behind on my Hospital Mom Hacks videos. I have about 4 ideas ready right now, just haven't got around to posting them on my channel yet. I still receive comments from parents that my videos have helped, and I tell ya, what a good feeling to have...knowing I've helped someone in that way. I have even recently seen that I have gained a few more subscribers to my YouTube channel as well. So I'm happy my videos continue to support hospital parents in need. 

Thank you again for following my blog for Bella, it means a lot to me. Just knowing many of you take the time to read whats becoming my weekly novels...truly means a lot. Thank you.

Not sure how many of you know this about me, but I love memes...I find them hilarious. If I'm having the worst day, a meme always, always makes me laugh. I created this one just in time for flu season. Get your flu shots people! Not everyone has a fully functioning immune system. Remember, Bella was born without one and we are going to make sure her new one has every possible chance to grow without harm.