HPTP Training + 4th Open Heart Surgery

"Little Warrior" Shirt c/o Jacob .Grace Designs

As medical parents, I legitimately feel like “we’ve done it all”. Okay, so I know that isn’t quite true, but going home with a GTube, trach, home ventilator, oxygen and IV therapy…. you can’t fault me for feeling that way. I didn’t think we could get anymore attached or tethered then we already are while at home – but guess I’ve learned that it’s still possible (however, I would like to boldly clarify that the trach/vent will remain as the most critical, intense and complicated of it all…it’s an airway after all). After cardiac conference this past Tuesday (which I’ll get to in a moment), we were officially given the green light to initiate the Home Parenteral Therapy Program (HPTP) and work towards discharge. A nurse from the Infectious Disease (ID) clinic came and met with me on Wednesday (October 26) to go over the basics and set up the timing and training of it all, but I’ll admit that I was a little surprised by a few small logistics. I guess the biggest surprise is the fact that though Evanna only gets ceftazidime three times a day, she is hooked up to the home IV pump 24/7 (we only disconnect her to change out IV bags once every 24 hours). I plan to post the mechanics of it sometime later next week, but basically even though Evanna essentially gets 3 doses of ceftazidime every 8 hours in the form of a “bolus” through her PICC line, to help avoid unnecessary disconnects while at home, the pump continues to deliver a very small amount (I believe it’s 2mLs/hr) in between each bolus. Talk about a small “pain in butt” -- though I’m still incredibly grateful that this is an option that we are able to utilize and allow us to take Evanna home – even if it’s just for a little while.  

On Thursday (October 27), Nick and I met with the ID nurse down in clinic where we spent almost 2 hours going over how to work the IV home pump and change the bag IV bag once a day. I had to chuckle because even though the nurse was showing us “best practice” that is taught to parents – Nick obviously did a few things “his way” due to his profession as a Paramedic (which the nurse didn’t mind at all).

Yesterday afternoon Evanna was hooked up to the home IV pump, and we were finally allowed to take her home. The homecare team came out this afternoon to walk us through our first bag change around 3pm, and will come again tomorrow. They will come again once more on Monday as they have to come every THREE DAYS while we’re home to prime and attach a new line regardless, but we should be good to go from there on out. I’m most nervous about Tuesday, as we have a follow-up appointment with Cardiology around the same time we have a “bag change” ….so that’ll be interesting to try and handle in the middle of an appointment (thankfully I’ll have one of our night nurses with me to help if needed).

OKAY…onto cardiac conference. Though it’s already been 4 days since Dr. Fruitman (our primary Cardiologist) came and explained the situation, I’m still trying to wrap my head around it all. It was decided by the Stollery surgical team that we do in fact need to transfer Evanna back up to Edmonton in the very near future and replace her hardware/prosthetic material (BOTH the conduit + valve). This is both because of the type of infection we are dealing with, and how long it took to clear from her blood stream. From an infectious disease perspective, Pseudomonas is an incredibly scary bug to have within your bloodstream. It’s not one easily cleared from the blood, and while it’s hard to see from diagnostic imaging, it more often then not likes to create an impenetrable “biofilm” around foreign material (ie. heart prosthetics). While every open heart surgery comes with an enormous amount of risks – the fact that have 4+ negative blood cultures makes them all breathe a little easier and not as hesitant to proceed with this plan of another OPEN HEART SURGERY -- Evanna’s 4th to be exact. We however have to wait until the end of November due to the rhinovirus/enterovirus (cold) that we experienced last week (the sole reason why we ended up in PICU) before the surgical team can proceed going back into Evanna’s chest.

This means that yes, though we are HOME from hospital – it’s only temporary (*cue tears*) for just a few weeks. We don’t quite have a date, but I’m assuming it will be sometime after November 17th, as that’s about 1 month from the positive viral swab we took in October -- but we will hopefully know more after Tuesday when we see our Cardiologist for follow-up. While it hasn’t been confirmed, I’m also 99% sure that we initially will have to admit Evanna down here at the Alberta Children’s Hospital so she can be medically transferred up to the Stollery Children’s Hospital due to all of her medical equipment (trach, ventilator, oxygen, etc), and I anticipate that we will be in Edmonton/at the Stollery for 1-2 weeks before transferring back down to ACH to continue Evanna’s recovery (this timeline is complete guess based off our own personal experience).

------------------that’s not all------------------

Our HPTP journey won’t quite end after this next open heart surgery either – Evanna will have to complete another 4-week antibiotic course post surgery, and so if we experience a decently quick recovery, we will once again come home with HPTP.

While the details are all a little fuzzy, the cardiology team has also decided that it’s time to do another cardiac cath, as Evanna hasn’t had one since May 2015. I doubt they will do it before Evanna’s open heart surgery, but I’m not sure if it’s something they’ll do right after or have us come back up to Edmonton at a later date to complete. Cardiac caths on Evanna are a bit more complicated, as the routes they normally take are clotted, and so they have to go through her liver instead (which is a bit more risky). One of the main reasons they want to do another cardiac cath is to accurately measure the pressures in Evanna’s heart and send those results to Dr. Hanley in California….. which brings me to here: we have ALL of this going on over the next 4-8 weeks, and we still potently have California on the table. Oi

>> you may be wondering that if we're still waiting to hear from Dr. Hanley, why not just wait and possibly hold off on going back up to Edmonton/Stollery and avoid an "extra" open heart surgery, when Dr. Hanley could potentiality replace her prosthetic material and work on her collaterals at the same time? Well, now that Evanna is much more stable compared to 1.5 weeks ago, the surgical team believes the risks of going back into Evanna's chest have come down greatly and if and when we do hear from Dr. Hanley, we could be looking at several months before we could secure a surgery date anyways (he tends to book months and months in advance). It's better that we completely take care of this infection now and get Evanna in "tip top" shape before we potentially send her down to California --hope that makes sense to you. 

By now Nick and I are somewhat use to going with the flow and the odd curveball when it comes to Evanna…. but to say we’re currently a little overwhelmed at the moment would be a slight understatement to say the least. I’m trying to just focus on the current steps directly in front of us (home on HPTP and transfer back up to Edmonton), but I’m a little in disbelief when I think about all what has recently transpired, and everything that’s coming our way within the next 2-6 months.

Just a current glance of “our plate” right now:

– Trached child who is ventilated and on 4L of oxygen 24/7

– GTube feed every 4 hours (0200, 0600, 1000, 1400, 1800 + 2200)

– Manage IV therapy which involves changing and hanging a new bag every 24 hours (and know that this will be something we will have to deal with for at least the next 8-12 wks depending on the timing of everything…)

– Facilitating a HPTP homecare visit every 3 days so they can prime and attach a new line
– Continued juggling of our unique work schedules (full time shift rotation for Nick and casual/part time for me)

– Prepare for another hospital transfer and admission up to Edmonton for open heart surgery (though, at least we have a few weeks to prepare vs a few hours that we’re somewhat use too lol). This includes packing, arranging hotel/Ronald McDonald House, booking off work, informing and canceling any ongoing therapy appointments, etc

– Evanna’s very first dentist appointment (at the hospital) on Monday

– Check-up & ECHO with Cardiology on Tuesday

– Complex Airway Clinic & Infectious Disease blood work appointments within the next few weeks

– Quick personal trip/vacation to Seattle in less than 2 weeks with a friend (not that I’m at all complaining about this) that I hope to still attend and still have to make plans for (welcoming all ideas!)

– RSV shots every 28 days starting at the end of November (so happy that Evanna was approved for yet another year of RSV protection!)

– Resume physical therapy as much as possible before having to press “pause” once again for 4-6wks after Evanna’s OHS (ugh…this one hurts a little as I can’t emphasize just how far behind Evanna already is, and she’s soo darn stubborn when it comes to PT activities to begin with)

– Continue to stay on top of our night nurses schedules (my job), their paychecks (Nick’s job), and make appropriate arrangements with them once we get an Edmonton date.

– Squeeze in an immunology follow-up appointment when we find time (they’ve already called to schedule an appointment, but I had to ask them if I could call them back once we had a better idea of how our December/January will look like).

– Schedule a swallowing test with ENT asap

– Advocate for and book a new bronchoscopy with Respirology + ENT after the holidays

– Um…CHRISTMAS!

So this is where we currently stand, and we still are missing a few pieces of key information that I hope to gain over the next few weeks. We're so glad that Evanna is completely back to her baseline and at home with us -- even if it's just for a short while. Nick and I could definitely tell she was getting a little bored the past few days before discharge, but as you can see -- she is very happy to be home. Continued prayers + good thoughts would be greatly apprecitated at this time, and I'll update one I know more on both Edmonton and California. 

xo The Irvine Home