Saturday, April 26, 2014

Quarantine: Day 6 (The One with HUGE NEWS from MUSC!)

Day 6 of quarantine was a pretty good day! I was up early with the kids and managed to get a lot of housework done, which was a huge relief. Then it was on to LO's last soccer game of the season, ThankYouJesus! She was excited to see Gramma & PaPa as well as her 1st grade teacher! And of course Chase was happy to be out of the house. But my goodness was it ever a hot day today! Temps in the 80s and this mama didn't even grab the sunscreen! #momfail

LO with her teacher

We also had the joy of watching a little entertainment in our backyard. Previously there was a huge dip in the yard for drainage purposes, so hubs put in a drain and some piping and the builders put down some top soil to level out our yard.


Today they came out to put the sod down. It looks so much better! Well, except that they ran out of sod, so we have a lovely little "dirt island" right in the middle! LOL! I think they're supposed to have that taken care of next Tuesday or so? Too funny.


I also managed to squeeze in tiny little moments of sewing here and there, which was super great since I'm desperate to make a few hospital gowns for Chase. I finished my very first one a few days ago, but really want to knock out the Super Mario and Despicable Me gowns before we leave... especially since I told him the Super Mario gown has super powers! He tried it on for me and we agreed it was a tad too long (an easy fix!), but he was happy to wear it (over his pj's) and "play Mario" for a while before bed. It was too cute!


I've saved the best for last... the HUGE NEWS from MUSC!

I received an exciting email from one of the Pediatric Cardiologists on staff at MUSC. He's been my go-to resource to email for questions about Chase, especially when it comes to a hospital stay, and he responded to my latest bout of inquiries today. We were concerned about having to leave Chase's side when a new case rolls into the PCICU and also from 7:00 - 8:30 AM and PM every day for rounds/shift change. This wasn't critical when Chase was an infant following his first two heart surgeries, but it's a pretty big deal this time around now that he's old enough to know when we're there and when we're not. Seriously, hubs and I were having slight panic attacks at the very thought of dealing with this frustrating policy during Chase's post-op period. But we were very pleased to hear that MUSC has worked hard on family-centered care over the last year or so and no longer routinely make families leave for cases and always welcomes families on rounds! This is a huge answer to prayer!!! We were also happy to hear the typical ICU stay following the Fontan is 2-3 days (before moving to the step-down floor on 8D), with an average total hospital stay of approximately 2 weeks. Of course there are a zillion variables and possible complications that could come into play, but we're so very hopeful that we just might be able to experience a 2 week admission!

One of the other GINORMOUS reliefs I experienced today happened when I took a quick peek at the Pediatric Cardiothoracic Surgery operative results from MUSC. The last time (a month or so ago) when I checked, the results were from 2007. Obviously that wasn't very helpful, right? So I was pleasantly surprised to see the results were now posted for patients from 2009-2013 -- this even includes Chase! I'm so pleased that we are already through the Norwood (Stage I) and Bi-Directional Glenn (Stage II), but would you take a look at the operative results for the Fontan (Stage III) that Chase will be undergoing in just under 2 weeks at MUSC?! Seriously! Take a look!


Source: Operative Results for the Pediatric Cardiac Surgery Program

I cannot tell you what a relief and answer to prayer finding these updated operative results has been for me. One of the posts I've been avoiding writing is the one where I share the real thoughts, feelings and fears in my heart and mind heading into this surgery. I can't bring myself to put those thoughts out there for all of the world to read, so let's just sum it up by saying I've been afraid. So very afraid for the life of my son. So very afraid for the successful outcome of this surgery.

But to see that 100% of the patients at MUSC who underwent the Fontan survived???

THIS. IS. HUGE!!!!!

We continue to covet your prayers in the weeks ahead as we prepare for Chase's surgery, for LO's adjustment to homeschooling, and to balancing life between Chase in the hospital and LO and E at the rental house. I cannot say Thank You enough to those of you who have reached out to us to ask how you can help us through this journey. It's so comforting to know we have a community of loved ones rallying around us, willing to help us and constantly lifting us up in prayer. We are so very blessed!

Quarantine: Day 5

Day 5 of quarantine is in the books! Things have really started looking up for me. Well, I mean, nothing has really changed from my massive To Do list, but I definitely feel as though God has brought His peace into my heart and mind with everything going on now and in the weeks ahead.

Friday was a rather quiet, slow day, but it was also quite productive! Lots of laundry, a little cleaning, but the biggest/best thing is that I was able to run out and pick up some little toys, games, puzzles, etc. to put into the "Treasure Box" for Chase that we'll be bringing to the hospital. It's a combination of entertainment options and rewards for the many uncomfortable procedures he will be going through. Having all of that purchased and ready to wrap was a big relief to me.

I also spent a good deal of time on the packing lists and shopping lists. There is So. Much. Stuff. to bring when you're basically relocating a family of 5 for an unknown duration of time! But now I have my lists and it's just a matter of thinking through what we're forgetting. Thankfully there are plenty of stores near our rental home, so I'm not terribly worried.

Turns out I didn't take any pictures yesterday, so I guess I don't have anything else to share! It was a productive day with plenty of family time... perfect!!!

Hope everyone is enjoying the new Chase-approved blog theme! ;)