Monday, May 4, 2015

Spreading Sunshine {Birthday Week}

»»»»» PCICU Day 205 - 211 «««««

We're back in Calgary, and slowly settling in quite nicely. There are a lot of adjustments and we're trying to get into a new routine that comes with being at a new hospital, and being at home verses the Ronald McDonald House (by the way – McHappy Day is this Wednesday! So be sure to visit your local McDonalds and indulge in some “guilt free” fast food, as the money goes towards such an amazing cause that is very near and dear to my heart).

The transfer back to Calgary went very smoothly, and Evanna enjoyed yet another private plane ride with her entourage of medical staff. We meet with Dr. Mahoney who was the main intentivist on for the week when we arrived at the Alberta Children’s Hospital (ACH), and she was actually very pleased at Evanna’s medical state and progress. She stated that while she knew what medications Evanna was on prior to transfer, she did not know the amounts, and was actually quite surprised at how low the doses were that Evanna was on. The Evanna they know from back in November and February was on very high doses of sedation medication, and she was always incredibly hard to wean. This past week we have been making small, but steady weans every day, and Evanna has been handling it very well. It really goes to show how much better Evanna is feeling, and how far we’ve come the past few months.

The first night back, the PICU decided to not touch a single thing and just leave Evanna alone. Hospital transfers can be really hard on children, and so they decided that the transfer was enough excitement for Evanna to handle for one day.

Tuesday was a very busy day, as we began to meet with different medical disciplines from all over the hospital. Cardiology came down and assessed Evanna, but because she is very stable from a cardiac standpoint they will be just following us throughout our admission and remain somewhat “hands off” at this point. We also met with the Respiratory Therapy (RT) manager of the PICU who will be heavily involved in transitioning Evanna over to a home ventilator and getting Evanna home. One thing that kind of surprised me was when Dr. Mahoney told us that the ONLY thing keeping Evanna in the ICU is the fact that she is still on a hospital ventilator. Once we get her on a home ventilator, there is technically nothing else holding us in the ICU, and we can actually look at transferring Evanna up to the ward and work towards being discharged home! I’ve become so accustomed to ICU life, that transferring to a regular ward is going to be both really hard and weird to me. I know it has to happen, but this is what happens when your child is in the ICU for almost 7 months.
At other points in the day, the Pulmonary clinic stopped by to see us, as well as Dr. Drummond (ENT). They too were pleased with Evanna’s progress, and were shocked when I told them that Evanna’s tracheomalacia is gone. We know that Evanna has a still long way to go before she can be decannulated (the process of taking the trach out), as Dr. Doughty pointed out the other night that the prolonged intubation has left Evanna’s lungs incredibly weak and stiff.

Wednesday was another very busy day. Why? Because it was Evanna’s FIRST BIRTHDAY!! The morning begun with staff bringing us balloons, and singing “Happy Birthday” to Evanna. They had one of the hospital musical therapists come in with a guitar and any nurse or RT that wasn’t busy came in and sang to Evanna. Later my mom, sister, niece and nephew came to see Evanna and brought cupcakes. Unfortunately around the same time, they tried to trial Evanna on the home ventilator, but she didn’t do very well. We think because of the over stimulation and how busy everything was, and so it was just too much for her.

Later that day my dad dropped by, followed by Nick’s side of the family. It was so great to see everyone, including Nick’s dad and brothers, all of whom I haven’t seen since before Evanna’s first surgery. Overall it was a beautiful day. All I wanted for Evanna's birthday was to be back in Calgary, and for her to be awake and interactive. I knew she'd still be in the ICU, and for a long time I was told that my wishes were very realistic by our Edmonton medical team. Then when her valve clotted for the 3rd time on April 11 and another open heart surgery just one week before her birthday became our new reality, I knew my "wishes" were no longer achievable. I just wanted the simple things for Evanna's birthday, and so I cried when I thought of what her birthday would know look like just 1 week postop. I was speechless when they brought up transferring Evanna down to Calgary for her birthday, and in disbelief that it ACTUALLY HAPPENED! Evanna was awake all day for her birthday and the smiles were endless. My humble prayers were answered, and I was blessed with this beautiful tender mercy.

On Thursday Nick stayed home to get some errands done around the house and make some meals to take to the hospital. Occupation Therapy and Physical Therapy (OT/PT) came by to assess Evanna, and I was extremely nervous with what they were going to tell me in regards to Evanna’s development and how behind she was, however they were ecstatic with what Evanna WAS doing. PT loved that Evanna was bringing her arms up “midline” and playing with her hands. She also noted how much Evanna was kicking her feet, even though one of them had a big arterial line in it at the time. In regards to possible oral aversion, OT doesn’t think Evanna has any. With the way she loves her soother and reacts to being touched around her mouth leads her to believe that she’ll go back to eating by mouth easily. I was so happy to hear all of this, and relieved to hear that despite everything Evanna has gone through, this incredibly long hospital admission won’t affect her too much. Unfortunately we have to wait until Evanna is off a few precautions, and back to NG feeding before we can proceed with these therapies. Evanna still has about another 4 weeks of sternal precautions because of her last open heart surgery, and until Evanna is transitioned over to the home ventilator, they don’t want to rock the boat and switch her from NJ feeding to NG feeding either. So we’re stuck at just doing minor and simple things with Evanna for a few more weeks before we can progress and start pushing Evanna to her full potential.

Jennie (of Guenard Photography) came on Friday to take some family photos for us, and help document this moment in our lives. She’s had been wanting to come take some photos of our family for a while now, but I was uncomfortable doing professional photos while Evanna was still intubated, and I wanted to wait until she was more awake and interactive. Nick asked the nurse if many people have family photos done in the ICU, but the nurse responded back by saying that not many families have such long stays in the hospital either.

The rest of the weekend was spent with Evanna and having more visitors come see her. One thing that all our visitor have been saying is that they’re all surprised with how awake and interactive she is.

This actually brings me to my next topic:

Visitors! We (well I) absolutely love visitors, so if you are at all interested in coming to see Evanna and I (Nick isn't here as often), please feel free to do so. Before you do, here are a few tips: 

1. There are no set visiting hours. The PICU is a 24hr unit, so as long as I'm here (which I usually am from 9am-9pm, give or take), you are able to visit.

2. Message me first! Either by text or Facebook, let me know when you would like to come by. I try to space people out, so not everyone is coming at the same time, and make sure I have nothing planned (like errands) while you're here.

3. Feeling sick? Have a cold or runny nose? Then please stay away! Being in the hospital already exposes Evanna to her fair share of bugs, and the last thing she needs is another one. Also, I'd appreciate you be up-to-date on your vaccinations. I'm not talking about flu shots - just your good ol' fashion childhood vaccinations (in case you're wondering where we stand on the whole vaccination debate - now you know).

4.  Please know that visitors are the highlight of my day, so try your best to come when you say you’re going to come UNLESS you're not feeling well (see #3). This has been a very emotional and exhausting journey. I've opened up and been very public about our situation, and invite you to come visit, hang out and see for yourself what we go through every day. Though I don't take it personally when people cancel, it doesn't necessarily help either and can unfortunately add to my stress level. Again, I LOVE visitors and having someone here to talk to during the day. It makes my day and lightens the mood, but cancelling plans to come visit is just another thing I'd rather not deal with. So when making plans to come see Evanna, please double check your schedule to make sure you are in fact free, and try your best to make it up to the hospital.


I would finally like to end this post about an amazing organization that ANYONE can take part in. Over the past few months I have been graciously asked to participate in some beautiful and wonderful campaigns, all aimed and geared towards sick children, and I can’t wait to tell you all about them (stay tuned for Spread The Lovey in the next few weeks). Our family has been on the receiving end of so much love and support, and so I want to make sure that others in need feel and receive that same love and support too.

Today I would like to introduce you to Spreading Sunshine. They are a non-profit organization that sends boxes full of “sunshine” to those who need a smile. So how does that involve you? They depend on people like YOU to sign up to be sponsors. Once you submit an application, they will match you to a child in need, and give you information on what that child likes and needs in order for you to fill and box and send it to them. 

“You simply fill a box with items that your sunshine buddy would enjoy. When you are matched as a sponsor with your child, a list of ideas is provided, but items often included are coloring books, crayons, sidewalk chalk, small toys, stickers, jewelry, puzzles, clothes, games, and favorite snacks. These are just a few examples of all the small things that can bring rays of sunshine to your special buddy.” 

This is such an incredibly easy way to give back and do a good deed. Our family was matched with a wonderful group of nurses out of BC Children's Hospital. Within weeks of being matched they sent us a lovely box that I opted to wait until Evanna’s birthday to open. It definitely brought us a little sunshine, and put a smile on our faces when I opened it, and we have already used many of them items sent to us.

Please click HERE to read their sponsor guidelines and HERE to sign up. Do it with your family for Family Home Evening to teach about service and showing kindness towards others in  need, or like our box in particular, do it as a bonding experience with co-workers. Let me know if you have ANY questions, and I’ll do my best to answer them or direct you to someone who does.

Thank you so much for continuing to follow along, pray for our little girl and showering us with love and support.

xo The Irvine Family

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