For the most part, the last week or so has gone generally well in regards to Evanna's recovery. We still experienced a few issues and bumps, but everyday she has made improvements, and so I guess we're happy with that.
Evanna's medical team did try and putting her straight back onto the Trilogy home vent (her Septic Shock episode caused her to be put back on the hospital ventilator as she needed more support), but unfortunately some line infections (IJ/central & PICC) didn't make the transition back go very smoothly, so Nick and I reluctantly agreed to doing "trials" and do a slower transition. This unfortunately will keep Evanna in the PICU longer and overall a longer hospital stay. A few days ago we started with just 1 hour, but now we are up to two 2-hour trials a day. The Respiratory Therapy Manager made out a schedule, and we just have to hope that Evanna will follow it (after all, it's her that controls the show).
Speaking of lines, boy oh boy, have we had an adventure with these. For a few days, it's was a constant battle of whether or not to take them out or leave leave them in. Getting a line into Evanna isn't the easiest thing to do, and ICU doctors sure do love their access. While the IJ is what saved Evanna during her Septic Shock episode as it opened up a lot of access and they were able to pump multiple drugs, antibiotics and blood products into her body -- it also has a high risk of becoming infected, especially the longer that they're in. Well, last week, Evanna was still a little "sick", and so they were very reluctant in wanting to take our her central line in case they needed to use it. However, the IJ was in such a terrible spot (her cubby neck), and due to sweat, her trach ties and position, it was very hard to keep clean, covered and do dressing changes. In fact, dressing changes had to be done several times, and it required multiple hands and sometimes even some sedation medication to help keep Evanna from moving while they did it. It was seriously quite the ordeal doing dressing changes, and they ended up having to do them more often as the sweat in her neck would cause the dressing to lift. Finally last Saturday, an RT that was changing Evanna's trach ties accidentally lifted her dressing, and I kid you not -- the IJ just FELL OUT! It was the weirdest thing as the sutures were still attached to the line, and her skin was still intact. Basically it was meant to fall out in my opinion, as Evanna's high fever that day dropped after it came out, and I basically told the RT that he was my favourite person. I will say though, the intentivist that put the IJ in wasn't exactly to pleased about the situation and I was surprised at how angry she was. Like I get that it was a huge loss of " access ", but it had to come out! Oh well.
A few days later, Evanna began to spike temperatures again, and so they ran cultures and her PICC line came back positive for a fungal/yeast infection. Dr. Gilfoyle told us that fungal infections are nearly impossible to clear from lines, so her PICC had to come out (sorry Dr. Cave!!). We were definitely a little sad about this, as Evanna has had this same PICC for almost 9 MONTHS, and it has literally saved her life a few times, and so I have a major attachment to it. I knew one day it had to come out, but I was hoping it was because we were getting close to discharge, not because of an infection. Thankfully the line came out very smoothly for the Resident, and plans for a new one are being made (it was suppose to be put in on Friday, but her continued fevers have delayed the procedure to at least Monday). This involves a quick trip to the OR and anesthesia, but in the grand scheme, this isn't a big deal to us and a very straight forward procedure. Now that Evanna is bigger, they are even going to try and put a "double lumen" PICC line in, and hopefully this will help avoid medication capability issues that we've often ran into in the past (boy, am I beginning to sound like a nurse lol).
Probably one of the biggest milestones that we celebrated this past week was getting Evanna completely off Ativan! She has been on benzodiazepines (it's basically a type of sedation medication, but overtime you can build up an addiction to it) since OCTOBER, and so this is a HUGE DEAL! It's a really hard drug to wean, and it was definitely our first focus when it came to weaning her sedation medications. Next up and what we're currently working on is her Methadone, but apparently it's an easier drug to wean as it has a longer half-life (meaning it stays in your system longer), and once we're almost done weaning the Methadone, we'll work on the Chlonidine last.
Another drug that both the intentivists and cardiology are slowly working on is her lasik (this is a diuretic), as Evanna is on a hefty dose (according to my RN friend, Evanna is practically getting an adult dose on a daily basis), and overtime it's not very kind on your body. We often refer to Evanna as being very "lasik dependent", meaning she doesn't pee unless she is given a diuretic medication (lasik), and we need to work on getting her on a lower dose and then even completely off. We definitely have to be very careful, as too much fluid is hard on her lungs thus making it hard for Evanna to ventilate properly, however too little of fluid is even worse for her. Due to her special heart, Evanna requires what the cardiologists refer to as a "fluid preload", which helps her heart pump better. Anyways, what I'm trying to say is that while we need to wean Evanna's diuretics, we have to be conscious of her fluid balance and not hurt her heart or lungs in the process.
What else? Well something that I've asked for the intentivists to keep in the back of their minds is getting Evanna back to NG feeding (food going into her stomach) so we can proceed with a swallow assessment and feed her orally, but this darn fungal infection has just been brutal, causing Evanna to throw up, which means we've had to keep her NJ feed (food going past her stomach). We started her at a very low amount today (3mls/hr), and they will reassess during night rounds whether or not to go up. Evanna is still somewhat getting over this fungal infection (her temperature is finally showing some improvement), so we're in no rush and want to take it nice and slow. As for medications, all of them are "oral" (they are administered through her NJ), except her antifungal medication, which is IV drug given through her peripheral IV that's currently in her foot (which has lasted longer then I thought it would).
Another accomplishment this week, was securing a new pediatrician. Though we are still a ways away from a discharge, I asked the PICU if we could work on getting a new pediatrician lined up. After Evanna was born, we did get referred to one by the NICU, and though we didn't dislike him, we weren't overly thrilled with him either. At our first appointment with him last summer I asked if he had a lot of experience with 22q, and he admitted that he didn't, and so that didn't necessarily sit well with me. I didn't let it brother me too much, because at the time we were being seen by our cardiologist and the Cardiology Clinic quite frequently, however someone pointed out to me that as Evanna got older, we would probably see our cardiologist less, and rely on our pediatrician more often. We have only meet with him twice, and that was last summer before Evanna's very first open heart surgery, so I decided it was a good idea to switch now, as we technically wouldn't lose out on anything by switching and Evanna is a completely different baby now. A local 22q mom told me about her pediatrician who literally picked out 22q11 by looking at her daughter, and said that this pediatrician has lots of experience with DiGeorge Syndrome. So the resident made a phone call asking if this particular pediatrician would take us, to which she agreed and so we officially have a new pediatrician (now we just need to get discharged so we can actually meet her lol)!
Lastly, Nick and I have finally met with homecare and the finance department to go over what we need to do for "self managed care", and while it's initially a lot of work, I really think it will be the better option for us. It gives Nick and I more control over who is in our home watching Evanna and we can decide how to use the nursing hours allocated to us. Basically we are given a certain "allowance" based on Evanna's needs and we can hire who we want. There is a lot of "checks and balances" to ensure that we are using the money appropriately and we definitely can't keep the money for ourselves (any money not paid to care givens is definitely paid back to AHS). Basically we are given money to have nurses watch Evanna at night so we can sleep, and then some hours for the day time to use as "respite" (so we can actually leave the house to run errands and attend appointments). There are lots of other little things (it won't be as nearly impossible for me to go back to work then I initially thought), but I won't get into it all right now. While it may seem awesome that we'll have someone in our home to watch Evanna at night, so we can get a good nights sleep, please remember at what we also stand to lose. The privacy of our home is quite literally being stripped away from us, and we have to learn to deal with someone else always being in our home. Other the flip side, if a nurse calls in sick (which WILL happen), one of us will have to stay up and watch Evanna to ensure that she gets suctioned when she needs it (or worse, do an emergency trach change). Family trips and vacations will be pretty much a no-go while Evanna is trached and vented unless we can figure out a solution that will involve some serious planning (and a nurse willing to come with us). I really can't emphasis enough how much this will impact our life and just how different things will be for the next few years, however, I know it's not forever, and just like the past 10 months, I'm sure Nick and I will get through it. We'll figure a way to make it work for our family, and we'll just take it a day at a time. The beginning will be hard, but just like this prolonged hospital stay, we'll get into a grove/system and before we know it, it'll be all that we know.
The only other thing I can think to talk about at the moment is we're also getting back to do lots of physical therapy with Evanna and get back to where we were before our transfer back to Calgary. She's doing extremely well in the tumbleform chair and we've begun to introduce the bumbo chair. She's back to trying to roll to her right side on her own and of course is always playing with her hands. The only thing that we are really missing is Evanna's smiles. We thought she would start smiling again once the olanzepine was discontinued, but that hasn't been the case, so hopefully as we come down on the Methadone, we'll start to see our cheeky little girl.
Thank you so much to the families that have made and dropped off meals to our house and the hospital since we've been back to Calgary. It's definitely been the biggest help, and while Nick and I are definitely capable (okay...well Nick is) of making food to bring to the hospital, it has been greatly appreciated.
Sorry if this blog post seemed so all over the place. I definitely need to do these posts closer together (like I use too), as details get forgotten and I don't want that to happen. The goals for the next week is to continue with the antifungal course -- we still don't have a stop date, but I anticipate it will be weeks due to Evanna's conduit. Yeast/fungus likes to stick to prosthetic devices, and so they want to ensure that they really clear everything up to help avoid another open heart surgery to replace that. We also plan to continue to wean her Methadone and stick to her Trilogy Home Vent trials, and I'm hoping a swallow assessment can be done by the end of this week. Nick and I now have a few things we can work on in regards to setting up homecare, and though we've been back in Calgary for a few weeks, I've finally been able to get some much needed things done around the house (even found a few unopened birthday cards last night and it was so nice to read some words that were written in them).
Here's to hopefully another good week!
xo The Irvine Family
+ I've partnered with Baby Jack & Co as a "Kindness Rep" in their #spreadthelovey campaign. They make sensory blankets, and have created a way for YOU to purchase one, which will be donated to a family in the NICU/PCICU/PICU. The blankets purchased through THIS LINK (<<--- click there), will be shipped to me, and I in turn will pass them along to families here at the Stollery Children's Hospital. My personal goal is about 50 blankets (between the 3 ICU's here at the Stollery, there are about 40 beds), but I need YOUR help to get me there! Currently I'm at about 40% for my goal, so please let me know if you have any questions, as I would be happy to answer them! {Also remember: Enter code KIND to offset the pre-set shipping on the website. No matter what shipping info you enter, it will be shipped to the donation recipient (me) in 1 bulk shipment}
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