Sunday, October 29, 2017

|| say HELLO to our homecare nurses ||

[a few disclaimers] this post is only possible due to several factors -- first is that our homecare nurses are privately hired by Nick and myself (though we are financially funded and quarterly audited by Alberta Health Services via their Self Managed Care program) and not through a nursing agency (which potentially could have made it impossible to publicly write a post like this). Secondly, posting these pictures are only done with the complete approval of our homecare nurses. Privacy is something that is extremely important in healthcare as well as on a personal level. While I've made the individual decision to be "a blogger", and choose to post about our family life in such a public way (though there are indeed several aspects of our life that we do keep offline and completely private), that doesn't mean our staff have to be subject to it. While it was indeed through this platform that they applied for the job to come work for us (probably the biggest blessing that has come from my blogging and Instagram posting when I think about it), they are still entitled to their individual privacy within their work environment. Thankfully, they agreed take photos with Evanna (and in return, have been been given permission to post and personally use these photos too!), and are allowing me to publicly post and talk about the side of healthcare (and essentially what is a HUGE part of our life) that often has to legally remain private.

Finally, I also want to also recognize my cousin Jess and good friend Amanda who also lend their nursing skills to be additional backup/respite to our main team, and work a few times per month when needed. It's never a bad thing whatsoever to have a large "pool" of people to pull from that we can completely rely on. When you have a child like Evanna, it immediately closes off all the normal channels of childcare... most of the time including your own family members. While I hope one day Evanna will get the normal experience of staying with Nono + Nona (my parents) or Grandma  + Grandpa (Nick's parents) for a sleepover, it's just not something that exactly feasible due to both safety and comfort levels. So it's been such a blessing to have these two other girls that have also been trained to watch Evanna and we can call upon should we need help filling some holes in our regular nursing schedule. 


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[Cecilia, Carmen, Evanna + Rebecca]

So to be perfectly honest, I've been trying to write this post for well over a month now, and somewhat hit a bit of a "writers block" when trying to convey exactly how I feel and what I wanted to say about our absolutely amazing homecare nurses. But how do you put into words and express your love + gratitude towards people who have literally been the greatest support (regardless of the fact that they technically get paid) in your life? Having and dealing with a very ill family member can be an incredibly heartbreaking situation, and unfortunately homecare can sometimes actually add to the stress of it all. However, we have been incredibly blessed with 3(+2) absolute angels that have not only come into our home and helped care for Evanna, but also become a huge part of our family. Heck, I often joke that because our nurses our physically within our home every night (and plenty of days too!), they know more about Nick and I than our closest friends and family (thankfully we don't have any embarrassing deep dark secrets lol).

While I'm always flattered with the comments of praise for Nick and myself as parents over the years in regards to Evanna, I feel it necessary to talk about what kind of goes on "behind closed doors", and the people we share a large part of our life with. I've made it no secret that due to Evanna's tracheostomy, we have homecare nurses who help watch her through the night, but being that we're coming up on our "2nd Homeversary", want to give credit where credit is due. So, basically what I want to state for the record -- is that a large part of Evanna's amazing growth, development, stability over the past few years (ie. remaining largely out of hospital), and why Nick and I haven't even come close to "burning out", is thanks to our lovely and wonderful homecare nurses!

Back when Evanna began to fail extubation after extubation, our medical team started to throw the word "trach" around, and absolute fear and dread came over Nick and I at the thought of it becoming our actual reality. Despite the fact that it would be one of the most simple and routine surgeries Evanna would undergo, we knew the huge impact it would have on our life -- including the fact that we'd now have to open up our home to homecare nurses and essentially loose some privacy that most take for granted. It was seriously one of the hardest consent forms I've ever had to sign (though, to be clear, I no longer feel this way), and became quite angry at our predicament.
Homecare isn't always "rainbows and butterflies", and I've read some pretty disturbing things within some special needs groups I'm apart of -- and we too even had a somewhat "rocky start" to our homecare journey, but overall, after finding the "right fit", it has become one of the greatest blessings in our lives and we're beyond grateful for this awesome resource that's been made available to our family.


So what kind of things do our homecare nurses do? .....let's start with the "basics". When they first arrive to our home at 10pm, we generally give a quick little run down of how Evanna's day was, and let them know if anything has changed medically (which happens less and less often the more stable she has become). Sometimes this conversation can be a total of 60 secs, and at other times can last almost an hour if I'm in a super chatty mood and we decide to talk about more personal stuff (what's going on in their lives, if I want to rant about something that's currently bugging me, etc). They will then run their personal belongings upstairs to Evanna's room, and come back downstairs and begin preparing her 10pm GTube feeds and get those started. After saying goodnight, I will head to bed around 11pm and go to bed feeling at ease that Evanna is safe and sound. The rest of the night is spent giving Evanna her other 2 GTube feeds (2am & 6am), medications (2am), taking her vitals (respiratory rate, oxygen saturations and heart rate) about every 3 hours, changing her diaper and suctioning as required, and recording all this in the nursing binder.
In between all this, they have a small (at least I think it's small....) list of tasks they need to complete to essentially help prepare things for the next day. Things like cleaning out both of the suction machine canisters (though, I have to laugh, as this is Amanda's [who by trade is a L&D nurse] least favorite task. Apparently secretions are much more gross than poop and amniotic fluid lol), clean the living room humidifier pot and refill it with distilled water. They then stock the living room and bedroom carts with alcohol swabs and other miscellaneous items while essentially trying to "straighten things up" from the previous day. They ensure there's a new suction catheter (and most recently a new HME for "ventilator sprints") ready to go on the living room cart, and even restock the "diaper basket" with diapers, wipes, some face clothes and a few swaddles.
The last few things they may do through the night consist of folding any clean laundry of Evanna's and help put that away if we've run a load through the washer earlier that day, straighten up her toys and prepare a new batch of feed if required.
Other than that, they can quietly "do as they please" the rest of the night..... within the confinements of Evanna's room of course. So anything from watching movies/Netflix, reading a book, scroll on their phones, and even knit or crochet! I know Carmen will spend some of the time doing school work as she's currently doing the RN bridging program (so proud of her!), and overall the girls are essentially are encouraged to do whatever they can to help STAY AWAKE!

Through the homecare program -- we also have a number of "daytime respite hours" that we are allotted each week. We use these hours to schedule the girls to help us take Evanna to medical appointments, or keep her home so Nick and I can run errands (as taking Evanna with us is "easier said then done".....as I visually demonstrated in this previous post I wrote last summer), or even just allow us breaks for personal social fun (ie. like when Nick's work rotation falls on a weekend, but I'd like to go for dinner with friends). Like I mentioned at the very beginning of this post (in the disclaimer portion), Nick and I don't have the luxury of normal childcare options available to us (whether that be in the form of family members or a daycare), and so we're given these hours to ensure we have have a way to get out of the house and enjoy some normalcy from time to time.
What kind of things do the nurses do during day shifts? Well, there's still some of the same stuff, such as GTube feeds, changing her diapers and suctioning as required. Evanna doesn't really have any daytime medications anymore (though this sometimes changes after an admission and may have a med or two we're weaning her off of), and would say the biggest focus is basically entertaining and playing with Evanna, and work on things such as physical therapy (ie. crawling, standing and walking) and oral/feeding therapy. I often describe our nurses as "medical nanny's", as the role has shifted more and more into that of a nanny, but still have that medical background and knowledge for Evanna's safety. 

On top of our regular nursing hours, we can also request 4 "respite weekends" per year, and essentially get an infusion of extra nursing hours if Nick and I want to getaway and have some time to ourselves. While we didn't really start using these hours until just this past year, we did use it once last summer when I wanted to attend a music festival, but it ended up landing on a weekend that Nick was working. So though we both were technically in the city, it ensured that Evanna was appropriately cared for while I went and had a weekend of fun with friends (as in "normal circumstances", we would have Evanna stay with my parents for the weekend instead).
This year Nick and I did our very first night away together since Evanna was born back in February to Lake Louise, followed by a quick getaway to a cabin with friends in June and a "babymoon" to Golden and Emerald Lake at the beginning of August. We've decided to "save" our last respite weekend of the year for when I go into labour, and ensure we have extra hours to pay our nurses to be at the house with Evanna so Nick can be with me at the hospital while I deliver (which the respirology clinic is super happy about this plan btw), and we don't have to worry about Evanna whatsoever.
[added clarification] homecare and what it entails does differ from province to province, and state to state -- and also takes into consideration the needs of each individual patient. From my understanding (so just take this with a grain of sand), Alberta has one of the more comprehensive homecare programs with full nightcare hours and a fair amount of day hours, and know other provinces within Canada (based on casual conversations with other Canadian trach moms) do not offer this same level of coverage. To my knowledge, homecare in the USA also differs from state to state and is paid by/through insurance and generally coordinated by private nursing care agencies. Apparently some states offer 24/7 pediatric nursing care to babies/kids with trachs, while others offer very little help/hours. Also, at the moment (and since we've been home), our family is fully "LPN funded" due to the fact that Evanna has a trach and requires home ventilation (plus I know her critical heart defect/lower oxygen saturations/high oxygen needs makes the trach team more nervous and believe they may not want to "rock the boat" and change our homecare contract until after our 2 big open heart surgeries that are set to take place in 2018), but once we wean Evanna completely OFF the ventilator, our night hours will eventually be reduced to "HCA funding", and we will lose some of our daytime respite hours too. Essentially, I can only speak to what homecare currently looks like for our family -- which is based on Evanna's diagnoses/healthcare needs and what our provincial healthcare system offers funding wise. 

Finally, our homecare nurses have not only been a huge physical support to Nick and I over the years, but mental and emotional too! We often reminiscence on those first 3-6 months home when Evanna was still somewhat very "sick" and her medical needs were extremely high. There are times I can't believe we survived that time period without any readmissions (our first unplanned readmission wasn't until April 2016 due to a sternotomy infection), and were able to find a nice little grove in a somewhat timely manner. 
We've definitely grown more and more comfortable with them in our home, and let's just say that my pregnancy has personally made me even made more comfortable and not be so overly modest lol (at 8.5 months pregnant, I'm currently in survival mode, okay??). They share some of the same fears we have for Evanna, and have definitely become Evanna's personal cheerleaders and continue to celebrate each and every little milestone. Our nurses were quite literally some of the first people we informed that we were pregnant with baby #2, as well as our very exciting "California news"
While it will indeed be a great day when we can finally "decannulate" Evanna (take out her trach), it will also be a very sad day, in that we will have to say a partial goodbye to this support system that has just been so incredible and wonderful to our family.

xo The Irvine Family


If you're interested, earlier this year I also stumbled across this article on pediatric homecare -- which is basically another perspective written by another special needs mother on what it's all about. She did a fantastic job explaining the roles of homecare nurses, and show just how valuable they are to families like ours. While there are indeed some differences between expectations and tasks (ie. Nick and I keep track and order supplies as needed, and our nurses definitely do not call any of Evanna's doctors), every family's needs differ from home to home, and it's very important that nurses are flexible to cater to that (having a homecare nurse "stuck in their ways" and unable to recognize the needs of each individual family can definitely make things difficult and create a lot of tension and stress on the family). Anyways, just thought it was an awesome post and makes for another a great read with even more information on pediatric homecare and what it involves!

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Over the next year or so (so I will be posting about them from time to time), I'll be partnering with the organization Tuff Sprout that's based up in Edmonton to help raise awareness for children facing extraordinary challenges and even raise a little bit of money for the Stollery Foundation (the hospital we called home for most of 2015). To find out more -- make sure to visit their website to see how you can help. Also, if you decide to make a purchase from their shop --- make sure to enter "Evanna" into the ORDER NOTES, which will ensure proceeds (20% of net profits) from that purchase are directed towards the Stollery Foundation! 


5 comments:

  1. What time do they leave in the morning?

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    1. Good question! Regular shifts are generally 10pm-8am (10hrs). This can sometimes vary on the weekends (I'd say about once a month on average), as we might ask them to come in early so we can maybe go for a date night, etc (so maybe have them work 7pm-7am instead).

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  2. Are they coming with you to California? Also what do the quarterly audits consist of?

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    1. Great questions!!

      We are indeed hoping that our homecare nursing contract will remain in effect during our time in California (as it normally is when Evanna is in hospital up here in Canada -- because if our nurses continue to "work" and fulfill their shifts, then we are allowed to continue to pay them for retention purposes). Our respirology team actually thinks it would be very beneficial if we brought one of our caregivers with us down to Stanford/LPCH and are highly recommending that we in fact do.

      Carmen as already indicated that she would love to accompany us down there, as the other two have other work obligations up here, and so it's now just one of the MANY logistics we're currently working on ironing out before we go (hoping to get a for sure answer by January). That said, our clinic trach nurse and main respirologist (who has a TON of influence/clout within Alberta Health Services) both believe it won't be hard to ensure our nursing hours remain in effect during our time down in California and we'll be able to continue to pay Carmen while we're down there. While I'm sure we'd survive just fine (as we've done so in the past), it will definitely be a huge help to have an extra set of hands with us when we go... considering we'll also be a bit busy with a newborn too! Our nurses know Evanna and her many "quirks", so they've been great resources to the ICU/units during other admissions over the past few years when Nick and I aren't present at the hospital. Anyways, if we're able to officially bring Carmen down with us, I'm sure I'll mention it at some point (for the record, they definitely won't pay her way down there and the goal is to be allowed to pay her with funds we would normally receive during that time anyways).

      So the quarterly audits essentially consist of Nick filling out a bit of paperwork (lucky him!) and submitting the nursing timesheets and pay stubs that prove to Alberta Health Services that we are using the money appropriately and not keeping it ourselves....as it's actually quite a large sum of money that is deposited into a special trust bank account on a monthly basis. We're allowed to keep a certain base amount, and if we're ever over a certain "threshold", then we are to write a cheque and give back what we don't use. Essentially just your basic accounting/payroll type paperwork. Hope I explained it well enough!

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    2. Thanks for the answers! I hope it all works out for you out for you and you manage to bring Carmen there. I can't even imagine having to do and think about all this with a baby in the picture.

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