I spoke with the surgery schedulers at Seattle Children’s today. The gal on the phone was very kind, she was reading the notes in his chart from his cardiologist as well as the notes from the entire cardiology/surgical team at the cardiac conference they recently had where Gideon’s case was presented. She compared the notes with Dr. Chen’s schedule and asked me how July 16th would worked. I started crying. Whoops. I stammered “but that’s only 4 weeks away, that’s too soon.” She replied telling me that the notes all say surgery was to be scheduled within 6 weeks of the cardiac conference they had this week and Dr. Chen’s schedule is already full since he is leaving and Gideon will be growing out of his pulmonary band in the near future so he doesn’t have a ton of time left before he needs to have it done. So I said ok, if that’s when we need to do it, then that’s when we do it. Then she found a schedule conflict for him that day and told me it would have to be the 27th instead. 6 weeks from today. I gulped. Said thank you, hung up the phone and cried a bit more as Elijah and I were driving home from the grocery store. Elijah asked if I was sad and I explained to him that Gideon is going to have surgery to get his heart repaired and we’re excited about healing for Gideon but it’s sad to think about having to spend so much time in the hospital again, not being able to see my big 3 boys every single day for a period again, and Gideon having to deal with all that he will go through with the surgery. I explained that it’s a good thing, but it’s still scary to go through and while we are so thankful for the help we can receive from others, sometimes big things like this can be emotional to go through.
I pulled myself together and we had a good discussion about it on the way home. Then I checked the mail on our way in. I brought all the groceries inside and set them down and opened the 1 piece of mail we received today which was addressed to Gideon. Strange, he never gets mail and today I got 1 thing only and it was for him…I opened the mail in the kitchen and just started crying again. It was his “Heart Hero’s” cape that I forgot I had ordered weeks ago as a gift from http://heartheroes.org/. Their mission is to provide support to children and families affected by Congenital Heart Defects through the distribution of superhero capes, which they offer for free.
Clearly, he was less than thrilled to be wearing his SPIO suit again as well as having to be propped up for a photo shoot with mamas cell phone but I had to get some pictures. It’s no shocker that I don’t believe in coincidences so, to me, this was just a little gift from God to comfort me when a scary time hit with the scheduling and reality of his upcoming surgery. I’m glad he is already wearing his superhero cape proclaiming his healing from this defect, I just need to get some better pictures of it later but I was in a hurry to update you all on the scheduling so this was the best I could do in a pinch.
His surgery is scheduled 6 weeks from today on Friday, July 27th. We know very little at this point, we have a pre-op appointment and a consult with the surgeon (who is AWESOME and did his first repair as well) on the 17th so we will find out more then.
How can you help?
1. Pray for us. For the whole surgical team, Gideon, his surgery, his post op time, my parents who will have our big kids for a few days, the big kids, Bo & I, people who will be helping us. There is just a lot to pray about and we covet your prayers!
2. Donate blood. Gideon went through a LOT of donor blood during his last surgery. It wouldn’t be available to save his life if people didn’t donate so please consider giving blood to save his and others lives who need it to live.
3. We will be opening our care calendar back up that my friend Paige made for us the first time. Our biggest need will be help with childcare when Bo is home alone with the 3 big boys. We will need helpers to come over and spend time with them here, just hanging out so Bo can get a breather and have some help while he is here with them and I’m at the hospital with Gideon. They are fairly easy going (well, they are WILD but they love basically everything so that’s what I mean by easy going) lol. Turn the sprinkler on out back, kick the soccer ball around, play board games, card games, do play doh out back, paint, do craft projects, work on school work, etc…If I really get on my game, which is unlikely, lets just be real, I’ll try to have a list of activities to do with the kids for anyone who is willing to come over and spend some time with them and love on them.
We will not be allowed to receive flowers, balloons or eat/drink anything in our room again when we are in the CICU (cardiac intensive care unit) and we don’t know how long we will be on that floor in recovery until he is stable enough to move to the post surgical recovery area before coming home. We do still have our paypal account to receive donations to help cover any hospital related expenses. His surgery should be covered in full, We hit our out of pocket max for medical expenses from insurance back in January and we have secondary financial aid through Seattle Children’s so we don’t expect medical bills so donations would be more for helping out with food, gas, childcare, etc while we’re living in both places again.
I still hope to draw out his surgical plan so you all have a better understanding of just what he will be going through but I know you’ve read that before. Ok… I just did this… I hope it makes sense…
The 2 sections that are circled in yellow are missing from Gideon’s heart. He doesn’t have the septum (wall) that separates the left side of his heart from the right side of his heart, nor does he have the septum or valves that separate the top part of his heart (atria) from the bottom part (ventricles) of his heart. So they are going to open his chest, open his heart, build the center septum that divides the left and right sides of the heart out of gortex or something similar then do the same for the top and bottom creating the separating wall and add the valves so the blood will finally flow in the right directions. Right now, his heart is basically just a big open bucket where all of the blood pools together that is supposed to be separated and directed in very specific pathways via the valves and it pumps out incorrectly taking the path of least resistance which for him, goes straight to his lungs. So he has a band sewn into his pulmonary artery right now restricting the blood flow to his lungs so he doesn’t go into congestive heart failure (suffocating because all the blood backs up into his lungs) which he will be growing out of in the next pound or 2 that he gains so that will be removed once they repair the heart and the blood flows properly.
I hope that makes sense! Either way, I need to get to bed. THANK YOU for praying for us! We will keep you posted on up to date prayer requests for sure! For the most up to date information, join his FB prayer page if you’re on FB. I plan to go live on that page with updates in person because that’s super quick and easy to do and you get to see us live! Feel free to share this blog and/or his FB prayer page with others, we love all the prayer we can get. Here is a link to his FB prayer group: https://tinyurl.com/Gideons-FB-Prayer-Group