This is my life now, it has purpose and I won't forget that.
This is his life, he carries me through but he needs carrying too.
This is HER life, she's moving mountains... keep up.
A side note before I get going with the 3 year summary. This is my therapy. Writing is my way of releasing some stress from myself. You may have heard bits and pieces of our story from the Facebook page, or snapchat updates, or my Facebook page... but I often try to make sure my blog writing is different. The writing in my blog post are of course way more detailed, and the the words/thoughts I just need to get out there.
Thank you for listening, thank you for reading and thank you for caring about our story.
March 4th 2017 - Day 620 in Hospital
Since Isabella (#BellaBrave) was born (Dec. 6th 2013), I've counted the days spent in hospital. I never had my blog running until after she turned 1 year old. So that whole first year in hospital wasn't well documented, but with all the chaos that has become our medical life... in the time span of 3 years and 3 months thus far, we have had roughly
a glorious 10 months in our home.
Jan. 25th 2017 we entered back into living the hospital life with Bella, once again.
It is quite difficult to keep up with our years in hospital and all the reasons why. #1 For people who try to fathom it for the first time it seems just flat out "Not Real." How can that many things go wrong, time after time with no break?! #2 The reasons Bella needed highly professional care, specialists all over the world to slowly discover 6 rare diagnosis, like perfectly timed blows in a boxing match.... "Round 1: left hook, Round 2: right hook, Round 3: Uppercut, Round 4: Jab Round 5: Cross Punch, Round 6: Bolo Punch..." I'm just waiting for the KO like its expected now. And #3 the countless times we have been told we are going home and don't, they think she's fixed and she's not, 'catching a break' is proven to be a flat out myth to me now.
Here's a Medical Summary of Bella's Hospital Life from Birth:
Pregnancy: A wonderful, easy pregnancy where I never got sick and we knew nothing of what was yet to come.
Born: December 6th 2013 in Swift Current, SK hospital
3 days old: Air ambulance to Saskatoon hospital for 1st bowel surgery dealing with Hirschprungs Disease affecting her colon/Got her first ostomy pouch.
Jan 28 2014: 2nd major bowel surgery taking down scar tissue thinking it was the blockage.
April 9th 2014: 3rd major bowel surgery to take more of her colon thinking more of it was affected by Hirschprungs.
April 10th 2014 (Bella is 4m old):
First Septic Shock episode nearly taking her life. Most likely due to major bowel surgery with no immune system (unknown SCID at this time)
June 2014: transferred to Alberta Children's Hospital in Calgary
July 2014: 4th Major Bowel Surgery that took her whole colon but also took away her ostomy so she went back to pooping normally.
Bella still had oral aversion at this time due to the ng tube still placed down her nose and throat to feed her formula.
September 8th 2014: a brief and very stressful few weeks at home still unaware Bella had no immune system.
October 2014: Admitted back to RUH in Saskatoon for lung infection, needing Oxygen.
November 2014: transferred back to ACH in Calgary because Saskatoon could not clear her infection.
November 20th 2014: Bellas biopsy of an enlarged lymph node from her armpit showing she had no immune system, absolutely no Tcell or Bcells and thus diagnosed with a rare unknown form of SCID.
- This happened a week before Bella would have received her 1y live vaccine that
would have killed her because she had no immune system to build antibodies from the vaccines. Hence
why I advocate for Newborn SCID screening to happen in all provinces. Genetics began to make connections between how Bella has CHH, HD and SCID.
> We remained in ACH Calgary, AB and prepared for her BMT to cure her of SCID < Strict ISOlation protocol began for Bella.
March 20th 2015: After about 6 days of chemo an infection in Bella's cvc sent her in to
Sepsis and they removed her cvc 2 days before her BMT was due.
March 25th 2015: Bella's BMT
May 2015: We moved from strict Isolation in hospital to strict isolation at RMH across the street.
- we would walk across the street every other day to have her BMT team examine her at ACH
- Bella is 1 1/2 years old at this time and just learning to eat solid foods and went from ng - Gtube use.
October 2015: It is discovered that Bella may have contracted a severe MAC bug prior to BMT that survived chemo and BMT, so now she is treated with a year long dose of 3 antibiotics and only allowed Distilled Water.
November 2015: Bellas has her first Hemalytic Anemia Attack (a rare complication post BMT) Her case required a med called Retuximab to fix the Anemia but it required wiping out all her Bcells. This turned out to be a need of a year long dose of steroids.
Steroids kept her Immune Suppressed for an entire year.
December 1st 2015: At 2 years old Bella took her first steps and learned to walk.
December 13th 2015:
We went home. Monitored weekly with bloodwork by Swift Current doctors and travelling to Calgary monthly to see her doctors there.
April 2016: Admitted in ACH Calgary for second Hemalytic Attack, receiving more blood transfusions and longer need of steroids.
June 8th 2016: We went back home.
- Many motility bowel distension issues began and got worse. Bella is now eating solids and more stress is on her bowel to move food through. Bowel issues still unknown. Much blame was put on the use of steroids and antibiotics and diet. Many restrictions and medications were laid out and trialed.
-We still make monthly trips to Calgary.
December 6th 2016: Bella's first birthday celebrated at home, she turned 3 years old.
January 25th 2017: Bella's rushed from Swift Current hospital to ACH in Calgary for emergency Bowel surgery.
January 26th 2017:
Bella's 5th major bowel surgery. Her 13th surgery since birth. (She's had other surgeries for cvc lines and biopsies, etc) This was also her first surgery with a working immune system and her not being immune suppressed from steroids.
February 21st 2017: Bella's team of primary specialists (11 people) meet with Lyle and I to discuss the rarity of their finds from Bella's recent bowel surgery and what the plan is moving forward.
March 1st 2017: We continue to remain admitted in ACH waiting for Bella's bowels to begin working, they haven't yet, so we continue to drain built up fluid from her stomach.
> It has been
36 days that Bella has NOT been allowed to eat and it remains that way until her bowels start to work. And even then, she'll only be allowed small sips of clear fluids. <
I can't watch anyone's child eat. I can't walk through the cafeteria any more at the chance I may catch a glimpse of the ability some other child has to pick up what ever they desire and see the simple choice of nutrients be chewed with ease and swallowed with no effort and glide down their throat to be processed by their working bowels which have never been touched by the hands of a surgeon, have never been been cut wide open on an operating table, cut apart and put back in. I can't describe the pain that wells up inside me right now when I see how easy it is for other children to be nourished without torture and pain. I just can't.
I sit here and day after day and I train (with Lyle and our Home PN nurse) to run the TPN through IV, through my child's veins to keep her alive
and I wonder what it would be like to sit down for supper as a family again.
I can no longer eat in front of her any longer. Once again (Just like all of 2014) She can't eat, I can't eat.
How Did This Come To Be?
I can tell you first off, what makes it harder to believe that all of this could happen to one little girl before she even turns 3 years old, is that it has not been at the hand of humans. This is strictly a hand full of bad cards that was dealt from birth. I know this because her Amazing team of specialists from ACH have worked tirelessly, night and day to understand the whys and hows with me.
So What Do We Know?
We know from highly specialised Genetic Testing Bella was born with mutated genes that caused the damage: CHH, SCID & HD.
We know that the MAC bug was a bug that normal immune systems can get rid of but Bella caught this from the environment somehow before she had a working immune system.
We know the Hemalytic Anemia can be a complication post BMT, they have seen this happen to other patients. Its rare but it happens and its fixed.
We DON'T KNOW how or why this new bowel blockage formed, or the time it took to form. From here we make guesses with the information we have. And in a later section I'll explain how the surgeons explained why they believe this blockage piece took time to form and why it was appearing as "normal bowel" in the previous 4 bowel surgeries.
Leading up to the 5th Bowel Surgery on Jan. 26th 2017
Bella began struggling with bloat distension and motility issues since June 2016. From there they worsened. So many factors were always at play when asking, "Why is this happening to Bella?" We began to blame a lot of her bowel issues on her history of HD (Hirschprungs Disease) but it just never made sense that with antibiotics and no colon that she was severely severely constipated and needing more and more laxatives to poop. We also blamed steroids for a while as well. Her doctors tried many meds thinking this was a chronic motility issue that would eventually be sorted out with the right med. But in actuality a 5cm section of her bowel was narrowing and becoming what would eventually be a full on blockage that they cut out on Jan. 26th 2017.
The Details Around The Surgery Itself
The day the Ambulance delivered Bella to ACH her surgeon wanted her in the OR stat! Thank God they recognised her worsening symptoms before she went down hill fast and possibly went through septic shock due to a perforated bowel. Instead they had Lyle and I sign the papers for a "Emergency Exploratory Bowel Surgery" and we walked our baby girl to the OR for the 13th time. But hey! First surgery with a working Immune System and not on Immune Suppressant drugs! Bright side to everything right?! (If only you could see my face right now as I type this...)
When you go through this much medical trauma in this amount of time, as parents, you do become desensitised. Its why I may look at you like you have 3 heads when you tell me your poor child had to stay in the hospital for one night while they had the mild flu, or if you complain to me about. anything. at. all.
So we kept positive remembering things like the fact Bella has never had issues with anaesthetics, she's not immune suppressed, we know her surgeon so so well and he knows Bella, we are in a world renowned children's hospital, and Bella is one tough cookie. But entering hour 3 into surgery we get a phone cal from the surgeon's clerk...
I don't care what sort of positive things you tell yourself to distract yourself during the wait of your child's surgery... it is the most gut wrenching wait you'll ever have to go through. And then to get a phone call in the middle of the surgery, well it just drops your heart into your stomach and your stomach is a blender, shredding your heart until you hear the words, "She's doing great."
So she was doing great but since this was exploratory surgery and they didn't know what they were about to discover or what they even knew they needed to discover meant that they needed to tell Lyle and I the surgery would be another few hours.
Our surgeon came to speak with us promptly after the surgery to best explain what he (and the other gallery of surgeons in the room) also saw. And I quote, "It was WEIRD and ODD." What the fuck (sorry mom) else would we expect right? We have a huge family of prayer groups diligently praying for Bella, we have been seeking and searching for concrete answers for SO SO long and still we receive the worst of all... "We have never seen this before and no one else in the world has either."
We were left with this:
Bella's team of surgeons went through every piece of her small bowel, from her stomach, inch by inch all the way to the end which would be her bum. They cut scar tissue away but did not see any bands "choking" the intestine. That would be an 'easy' answer and why would we ever deserve that, right?! As our surgeon meticulously searched along her bowel for answers he became worried that nothing would be found and then IT appeared. Near the end (bottom third) of her small bowel the diameter of her bowel went from as wide as the bottom of your coffee mug to the width of a pencil. The Blockage was evident and then cut out. It was roughly 5cm in length.
This narrowing blockage formed in her small bowel. Hirschprungs Disease is a Large Bowel (colon) disease...
so what was this? How did it form? It explains a bit of why it was not seen in the 4 previous surgeries... you don't look anywhere else for HD, its only a colon disease. So what was this narrowing in Bella's small bowel?
The surgeon told us the extent of the trauma done to her bowels from the distension. 4 Litres (an entire milk jug) was drained from her tiny torso. The bowels were trying so hard for so long to push what ever food and drink was thrown at them, through an entire bottom third of her bowel in order for her to poop. Her bowel needed rest and so the ileostomy was built. This is where they bring the upper end of her small bowel to the surface of her abdomen skin and cover it with a pouch. This allows her upper small bowel much needed rest. Her bottom third and rectum remain inside her body for rest, healing and not being used.
6 hours later we met our baby girl, intubated in the PICU.
Even though she was on the 'Loopy Meds' she looked at me like, "Get this effing tube out of my effing throat NOW mom!"
As I looked over her body my eyes welled up as I realized what her tiny bodied endured. The cuts through the scar tissue through her abdomen, the deep purple bruises on her arms from the Art line and IV line that pierced her skin, the new ostomy pouch attached to her, exposed a small bowel stoma on her right side, sitting so close to her trusty Gtube button on her left.
Looking and realising I can't see her skin, I just can't see any of her precious, porcelain skin. She was covered in the patches, pouches, buttons, tubes and lines that she required to survive this whole ordeal.
Finally I came across her soft exposed thigh, to gently rub, in hopes my touch there comforted her in some way while I kissed the tiny patch of skin on her forehead.
The Team Meeting
Feb. 21st, 2017
This is the information we received with ALL Bella's specialists present (11 people). This team was made up of Bella's primary doctors: Immunology, Hematology, BMT, GI, CHIRP, Surgery and the Pathologist. Bella's team in total currently sits at 43 people. So the 11 top specialists on her case attended this meeting. This also included the surgeon who conducted her 4th bowel surgery. Basically, we had everyone there that we needed to get the clearest picture of what is actually going on and what we need to know.
We didn't think Bella's conditions and issues could get any more rare, and now we were about to hear the rarest of them ALL...
80% of HD (Hirschpurngs Disease - dead cells of the colon) stops at the junction of the colon. 5-10% of HD kids it goes up from there a little more. Less than 5% of HD kids have it affect their entire colon (Large bowel)... this was Bella by the time of her 4th bowel surgery. That was her full colectomy surgery, colon gone. And now to the
Odd, Weird, Rarest part no one has seen before and some doctors refuse to believe exists: Skipped Lesion Hypoganglionosis. So it may be possible that abnormal cells ( like a form of secondary HD) skip'd up into her small bowel. Unheard of, never seen before, some choose not to believe it exists. Thankfully none of those people are Bella's doctors and everyone in ACH wants to know exactly what THIS is.
The team is not sure how or when this section of blockage formed. Once the Pathologist could tell us about the slides and cells she meticulously inspected, she found that the cells from the biopsy were abnormal. So not only did they look funny, (not like normal cells) they were also sporadic and not in their 'right spots' for normal bowel function to occur. So how did these eff'd up cells get to this spot in Bells'a small bowel, why did they form here and how did they form here?
We don't know that yet.
We then discussed how this section was not seen in her previous bowel surgeries. First of all doctors don't look for HD in the small bowel, its not supposed to be there. Then comes the weird and odd part of this section of rare... Bella seems to have a longer Transition Zone (from bad cells to good cells in the colon) than typical HD patients have. Roughly 10 years ago it was noted in HD documents that a typical transition zone was about 3cm long. Then more recently a New Jersey HD specialist changed that to 10cm long. So when surgeons are looking at the bad HD cells and deciding where to cut the bowel so that all the bad cells are taken out, they would go roughly 10cm up from the bad cell section.
Bella's was longer than that. So she was never Typical HD even in the first place and then to have a longer than normal transition zone complicated things further. So through all her bowel surgeries the doctors never wanted to take too much of her bowel and then also followed the most typical guidelines for cutting out HD affected colon.
So they understand now that the bowel 'appeared' normal in the previous surgeries and they also technically didn't need to look there (her small bowel) after her first surgery when she was diagnosed with HD.
Between her 4th and 5th bowel surgery there was a 2 year gap. This is where we start guessing as to how and why the recent blockage section formed. We are still asking at this point
"Are all her cells in her bowel 'abnormal' or just this last section they took out? In order to find that out her surgeons have to do a future surgery where they MAP Bella's entire bowel from her stomach to the bottom of her small bowel. This would be an extensive surgery where they biopsy a chunk of her bowel every 5-10cm. So we aren't there yet, that will be down the road. For now, we guess, and try to get her bowels to work.
Bella's surgery was so extensive on Jan. 26th that she couldn't walk for 9 days after.
- The Valentines card we wrote for all of the other children as inpatient on Unit One for Valentines Day. -
Guesses on how the recent blockage formed:
Bella's whole team believe a lot
masked what struggles her bowels were really under-going during that 2 year gap. They recognised that the majority of those 2 years Bella was on IV fluids through transplant, NPO with oral aversion so her feeds were a very broken down formula or TPN IV, so no solids. Bella didn't really start eating solids until later in the 2 year gap and when that was going on she was also on many many medications including lots if antibiotics. So for a while her gut was under very little pressure and everything was just liquid form flushing through.
Then she began eating solids and taking steroids and becoming bloated and distended and from there the pressure on her gut to process increased. Possibly, after this something could of triggered her bowels to reach their breaking point and they shut down thus showing us a full on bowel blockage that was quite evident.
So perhaps those abnormal cells were there from birth and as the pressure on her bowels to process increased, the narrowing began on one end, and the distension on the other. Her doctors still do not know for sure, but this is there best guess at this point. We will not know FOR SURE what is going on until they get that chance to
map and biopsy her entire remaining bowel.
So Now What?
Lyle and I left that meeting quite deflated and discouraged. We never received answers and no 'for sures' and there was even discussion around the Bowel Failure Team being involved and what scenarios led to the need of a full bowel transplant for Bella. (Worst Case Scenario) And at the date of this meeting it had been nearly 4 weeks since surgery and also still NO movement from her bowels, no bowel function at all. This meant stressing procedures that needed to be done on our fragile 3 year old daughter. The older she is now for these most traumatic situations, is showing the harmful effects of stress on her mind as well. She is fully awake and aware when they need to dilate her stoma, or when we need to drain her entire stomach contents from her Gtube button because her bowels are not working. It has been somewhat of a horror movie 5 inches from her own eyes.
In the last month my daughter has been the most aware for the harshest procedures. She has remembered for a long time and they can't tell me anymore, "Don't worry mom, she's a baby, she won't remember." No, now I have to stare in to her tear-soaked eyes with mine and pray she forgives me for holding her down as she screams, "Mommy no!"
We were also left with what we have usually received from Bella's doctors...HOPE. There is hope that her bowels wake up and start working just like they had before, she comes off TPN iv and is allowed to eat again. There is hope that the rest of her bowel functions beautifully with the support of an ileostomy pouch and that in the future she could hydrate herself enough for us to remove the CVC line in her chest. Speaking of which, thank GOD for the life line known as Mr. Rigatoni (her Broviak cvc). We were just looking forward to taking him out because the Hemalytic Anemia was gone and we only needed to see her BMT/Immune/Hematology team once every 3 months! We were almost at a 3month break point... but thank God we still had her cvc line and didn't take him out early. Mr.Rigatoni has saved Bella a ton of pokes.
Daily
Daily we wait for her bowels to wake up. Daily Bella is connected to IV lines that feed her veins all the nutrients (TPN for 22 hours) her body needs when she can not eat. Daily we try to keep our heads above water as we strive to keep her comfortable, thankful, aware and learning. The doctors stream through her door like a revolving sushi train. As soon as I swallow one's ideas, orders and concerns, the next one comes by.
For a while I could see the stress of all of this rearing its ugly head in my daughter's mind. She felt her entire world was out of control and not one person was going to get away with one thing, not even a "hello." It broke my heart to tell people that saying, "Hi" to Bella stressed her out, so shut your mouth and walk by without speaking, thank you. This was my Brave girl who loved 20 doctors in her room and hated being home alone with mom. Now, I had our nurse telling me not to worry, this is the way a 3 year old should react to hospital. Which part of me believed but part of me also knew this wasn't "3 year old behaviour" this was my baby girl not herself and stressed out. I mean no one could even compliment her. If she did not initiate the convo, then no, you are not allowed to engage. She needed complete control of her world as she healed and this is how she started to gain it.
Things have brightened in her world this week and I'm getting glimpses of my happy girl coming back. But I mean she started with the tiring job of dealing with the distension that she put up with for so long, with a smile on her face! Then she went through a extensive surgery at an age where she is very much aware of her surroundings. And after that, being told she can not eat, no snack, no food, no drink.
Say you have a 3 year old right now... could you call them from the other room right now and tell them,
"No hunny, I'm not giving you supper tonight. In fact, Mommy is not allowed to let you have a drink before bed and I won't be giving you breakfast in the morning. Actually, hunny... Mommy won't be feeding you for another month."
The pain in my chest still lingers since the first week after surgery where Bella sobbed because I had to say no to a snack for her. It lingers because now she has given up, she's "put up," she's fine with it now. And the chest pain continues to linger because the PTSD from her entire first 8 months of life when the NG tube down her nose and throat caused an oral aversion and I wasn't allowed to feed my baby girl a bottle. And that aversion continued to the point in time when I WAS allowed to feed her a bottle and she wouldn't accept it because she had given up, she had put up and she was fine with it...over it. So the fear from those months when she was forced to "put up with' it all for so long that she just gave up on trying.
God, I pray for my brave girl's chance at eating again. Please.
My Mental Health
This paragraph may not be long because really my only question is: "When you are receiving support from your Mental Health nurse for PTSD from a year of exactly what your worst nightmare is, that you have already lived through (Bowel Hell)...
and your PTSD nightmare becomes real life AGAIN (Bowel Hell Take 2)... Do you spontaneously combust?
I feel like I have strived ruthlessly to prevent prevent prevent; pain, mistakes, hardships on my daughter. Why has it all just blown up in my face. I begged my doctors to figure things out quickly and they tried tirelessly to never see me beg them again because they are amazing. Yet issue after issue arose for Bella and I still feel like I'm tied up, beaten and gagged while my daughter suffers. I need this suffering to stop for her. I need her quality of life to never have the word 'pain' enter it ever again. If only..if only.
I miss my dog so effing much it hurts.
I miss my 2 cats a lot. I miss the way they bring my heart rate down.
I miss the way that Sajak (my male kitty) thinks he's human.
I just want to hold my dog the more I think about my cats.
Dammit all I miss them!!!!
I hate this!
If One. More. Person. asks me, "How are you?" I'll blow up.
STOP ASKING THIS TO PARENTS IN HOSPITAL WITH THEIR CHILDREN!
Gaaaaawwwwww
How are you? Honestly... come one people!? Really?
"Oh, I'm fucking fabulous! Holding my double shot latte, with my new outfit, driving my car to my job, in the town I live in, which is also the same place I live and see my dog and cats daily, while my healthy child goes to daycare and my non-stressed husband picks her up after his daily job which allows me "self care" time to work out at my fab gym before showering and going for wine with all my girlfriends at the local pub downtown." Just. effing. fabulous.
I get that this is just the common phrase that rolls off your tongue and that it takes a little more brain function to try and think of ANYTHING ELSE to ask...but please try. For my mental health sake, please try.
How Is Bella Lately?
Today is March 4th, so even though it has been exactly one month and 5 days since she has been allowed to eat she is 'putting up.' Bella's GI docs have allowed her a max of 200ml per day of clear fluids, because her bowels are supposed to be allowed to fully rest. This 200ml of clear fluids is for comfort for her in the safest way possible. Its less than a juice box a day that we have to drain from her stomach 2-3 times in a day anyway, while we wait for the day that her stomach is empty, which means her bowels have started to move stomach contents through! While we wait Bella has been doing well with her options of juice, popsicles or suckers. She has not puked at all and has been relatively comfortable other than the soreness from irritation at her Gtube button site. The strain from the stomach drain tube has irritated the button site and has made it quite painful for Bella even when we touch it.
Slowly as we coach her in to regaining control of her current environment she's becoming a bit more friendly little by little. Slowly I see her "happy girl self" coming back and lighting up every hallway she walks down in that Children's Hospital. She is a girl of routine. Here she feels control and comfort in knowing what will come next. It has even got to the point of a surprise blessing for Lyle and I. Shortly after her surgery, roughly 2 weeks after, Bella told us flat out to leave her room. This was her bedroom now (hospital room) and
she demanded her quiet, alone time. Even though I was a bit taken back by this request...I could see her craving for peace very clearly. So a couple times in the day it started with, "Mommy, go sit down." Quite a harsh demand but I respected it. I was standing at her crib-side too long and she needed a break from 'nurse-mom.' But then it escalated to, "Mommy, Daddy leave." And Lyle and I sort of stood there in shock. So we contemplated leaving her hospital room to actually sleep at the Ronald McDonald House, free from lights and loud alarms over night. Bella was telling us to go!
I double checked if I was hearing her right and asked, "Hunny, should I leave?" and Bella would respond, "Yes mommy, mommy...coat and boots. Put on your coat and boots and go." And as I picked my jaw up off the floor I turned down her lights, plugged in her toe probe monitor for the nurse, gave her a kiss goodnight and walked towards the door. As I closed the door I'd say, "Ok hunny, Mommies going to leave now (as I triple check that she was still ok with this) is that ok?"
And she responds, "Yes, night mommy." These little bits of her showing how brave and grown up she is, melts me.
What if her Bowels don't wake up?
We have been given a time period from her GI specialist for her bowels to wake up and work. It was confusing because after surgery they said hopefully they would begin working in about 2 weeks. Then once they realised what they were actually dealing with they switched that time line to 2 months. So given what they know in regards to Bella's case her doctors are telling us they will not start to worry about her bowels not working until April. Given the trauma her bowels went through right before and during surgery, her doctors don't expect them to start waking up and working before April. So if they do before then, great, bonus.
If April comes along, then her bowel's rest period is over and they will try putting them to work. This means throwing every motility med at them until they do work. Bowel transplant will only be considered after every possible motility med has been tried, even the ones they need special approval for. So currently today we are still holding on to hope that Bella's Bowels will wake up on their own and begin to work on their own with-out any medication support.... its possible.
Currently Lyle and I are also back in school taking Home TPN Training. This in a nut shell is us being taught how to administer nutrients through IV for Bella at home. It may be a while before Bella can eat again, so she needs TPN through her cvc line to stay alive, to get all the nutrients she needs to gain weight. So yeah, we have gone from managing just dressing changes of her cvc line site, Gtube (stomach button) use, to now ileostomy maintenance and full on IV hook ups, lines, pumps, beeping pumps, flushing her line, checking blood return, running fluids through her IV, etc.... at HOME. We won't be done training for another week and even then, we don't take Bella home until we feel comfortable and confident enough to administer TPN IV at home.
Me as Nurse-Mom just hit a whole new level.
You may have thought I had enough to carry around for Bella due to her Gtube and cvc line and regular toddler needs... now I have a full on hospital room that I'll need to adjust to hauling around. We are getting the IV Home TPN training in hopes that we can bring Bella home once our training is done and care for her in the comfort of our own home, & wait for her bowels to wake up there. Thats a blessing. $15 000 is what it costs per child, per month for a parent to be able to administer TPN through IV at home. Thank GOD we live in Canada and it costs nothing for us to do this for our daughter. Thank GOD.
So I am going to bite my tongue a bit harder and remember not to complain when I relearn how to function out of hospital, and competently tend to my daughter's medical needs at home.
Thank You Is Not Enough
Without question our friends, family, hometowns, friends of friends, extended family have support us in spectacular ways and Lyle and I can not thank you all enough.
To stick by our sides, for our daughter through this unusually long endeavour has meant the world to us. We feel your love when we are alone in our RMH room, we feel your support when Bella is in her hospital room, we know you have our backs all the way through, thank you from every inch of our hearts. To all the friends that I can't always reply back to right away, please know I will get there. Days can become overwhelming and I'm trying so hard to keep up with the Thank Yous that even that can become overwhelming at times. So please know, when I have time, when I finally get home with Bella... we want to thank you so so much.
Thank you to everyone supporting me with my book sales. I hope I can physically get to my shipment soon and be able to set up my own book signing event for you all to pick it up from me in person.
Thank you to my thoughtful, selfless, amazing co-workers, the Chinook School division, Central School, Hodgeville School, Ecole Centennial and All Saints Catholic school for all your loving support.
Thank You From Inside Out Creative Studio for the keychain & magnet fundraiser for Bella.
Thank You to my loving friend Becky Warnke for the GoFundMe page and the BellaBrave online auction fundraiser.
Thank you to our community for the auction support and everyone for the support through the GoFundMe page.
Thank you to my friends Carissa, Stephanie, Alana, Jess, Alanna, Melissa, Jenna and Brooke for all the hard work you have done to bring a smile to Bella's face.
Thank you to my Medical Mom friends in Calgary who have made breaks in the day possible for me. I cherish you SO much.
Thank you to my mom and dad and Lyle's mom and dad who have been the foundation of the abundance of family support in our lives for Bella.
A Thousand Thank Yous to all of our friends near and far. Please keep the prayers for our Brave Girl going,
she's not done moving mountains yet. Keep Up!
