Fontan update #2

Everything is going as planned. Evan is doing well. Hoping to start taking Evan off of bypass by the next update.

Fontan update #1

Just got our first update from the OR. Evan went back at 7:15. He had no trouble going under anesthesia and all of his lines are placed. The surgeon is thru to the sternum now, next update will come in about an hour.

Pre-Fontan heart cath, check.

Hi friends.

It's been a long day. Evan didn't sleep well last night and we were up by 5am. Surgery registration was quick and we were back in the cath pre-op area by 7:30. Evan was pleasant until it came time to place his IV. It took four of us to hold him down :( Once he got the IV, it was pretty much impossible to keep him calm. The anesthesiologist came by a short while later and gave him a little dose of versed. Evan was instantly as high as a kite. He was giggling at everything, swaying back and forth, and babbling away. We met with the cath DR and went over the plan. He said they should be done in an hour and a half to two hours. Scott and I went down to the RMH and ate breakfast while we waited for an update. After and hour and a half without a phone call, we called into the cath lab. The DR had just located a large collateral vessel and was going to measure it to see if he needed to coil it. 45 minutes go by and we received another update- the DR had a hard time accessing the collateral and had just made access. They estimated another 45 minutes before they were finished. The cath DR came out and said all went well! He coiled just the one collateral and Evan's pulmonary artery pressure was excellent. Evan's pulmonary arteries are slightly narrow but the surgeon plans on stretching them out a little tomorrow during surgery. It was another 30 minutes or so before we were allowed back to see Evan. He was MAD as fire. Thrashing around and crying.. After a cath, a patient needs to lie flat on their back and still to prevent bleeding. The nurses helped place Evan in my arms and I attempted to calm him down but it didn't help. He was super groggy still, coming off of anesthesia, and pinching and smacking me. It was rough! We transferred over into our room at the CVICU and Evan and I got comfortable in a chair. We've now been in this chair for almost 5 hours. He finally went to sleep about 45 minutes ago and I am enjoying all of the snuggles. :)

Our surgeon's physician assistant came by this afternoon and we went over the game plan for tomorrow. Evan is the first surgical case of the day and is scheduled for 7:15am.  The surgery tomorrow is the final stage of Evan's 3 stage repair. He is having an extracardiac fontan. The surgeon will connect a synthetic tube from his IVC to the pulmonary artery. I asked the PA if she could find us a tube similar to what will be placed in Evans heart and luckily enough, she had one in her desk drawer. It was huge! Much bigger than what I expected. I snapped a quick picture of Scott holding it for you to see..
..

Thank you guys for all of the support and prayers you have offered our family. We know it is only because of God that we had peace today and the strength to be strong for Evan. Please continue to pray for him as he heads into surgery tomorrow morning. I will be sure to update our blog as we get updates from the surgeon tomorrow.

It's time.

4 months have come and gone. We are now less than 24 hours away from hospital admission time. Our bags are packed, Elli's grandma is on the way to pick her up, our dog has left with my parents, our room at the Ronald McDonald House have been confirmed, pre-admission registration is complete.. We are ready.

But not really.

I am not ready to hand my little boy over to have his chest cut open. Not ready to sit in a brightly colored waiting room for hours, waiting for my phone to ring with an update from the surgeon. I'm not ready to see the fear, confusion, and anger in my two year old's eyes when he wakes and realizes what has happened. I'm not ready to watch him suffer and know that I can't do anything to help him.

God, this sucks. This pain and fear.. I wouldn't dare wish it on another soul.

Oh, Jesus, hear my cries.. Please take care of my sweet boy.


We are checking into the RMH house this evening. We need to be at surgery registration at 7AM tomorrow morning. Evan cannot have anything to eat after midnight tonight and only clear fluids until 5AM. After his heart cath, while he is still sedated, he will get an echo of his heart. He will then be sent to the CVICU for the rest of the day/night. Evan is the first surgical case on Tuesday. We should have the "exact" time tomorrow. I will be giving brief updates via Facebook and will be updating my blog as well.

Friends, please pray for Evan, pray for Scott & I. We are worried, anxious, nervous, scared.. We need to be strong for Evan. Please specifically pray for God to guide his surgeon's hands. To be with everyone in the operating room Tuesday and everyone in the cath lab tomorrow. Pray that Evan has a quick recovery and that he doesn't have to battle extra fluid in his chest. Pray for no complications..

Thank you.

Overwhelmed

17 days... 

Tonight I am overwhelmed by the generosity of our friends and family. You all have responded to our requests for prayers, goodies for Evan's hospital stay, and blood donations! It is so awesome to see how much you all love our little guy!

Everything has been set up with the local blood bank for direct donations for Evan's surgery. If you are still interested in being a direct donor, and have O+ blood, please let me know and I will add you to the donor list! If you aren't O+ and still want to donate, Evan can receive credits for your donation! You can donate now or after his surgery. Next time you go to donate, just let them know you want to credit Evan Sawyer.

Check out Evan's hospital treasure box! It is overflowing with goodies to keep Evan occupied during his hospital stay! He is so excited to get into this box! He also has two full bags of his favorite snacks to munch on! Seriously, friends, thank you!

This week I finally got around to making Evan's hospital gowns. The hospital issued gowns are usually too big(and purple) so I figured I would take a shot at making my own. I couldn't find a pattern for what I was looking for so I grabbed some chalk and just winged it. I am SO happy with the way they came out! My only regret is not making a pattern before I finished them! LOL They are kimono style and open up in the front. I also added snaps to the shoulders for easy access to IVs and the Central line (the big IV in the chest that goes to a large vein near the heart). Each gown took about an hour to complete (including cutting time) and cost about $6-8. 

My model refused to stand up ;) 

Seriously, friends, we are just so grateful for your generosity.  We love you all so much! Big HUGS to all of you! 

Deja Vu

I wanna give him the world

I wanna hold his hand

I wanna be his mom for as long as I can

And I wanna live every moment

Until that day comes

I wanna show him

What is means to be loved.. 

I adore this kid. He is so full of life and love, always happy. He brings so much joy to my life! We recently had the pleasure of meeting a fellow central FL heart mama(to-be). I can't begin to explain what a blessing it is to be able to share my experience with someone who is just starting their heart journey. It was like deja vu- wasn't it just yesterday we were told our unborn babe only had half a heart & I was asking all the same questions? Sigh. Evan was his usual crazy self; he threw food on the floor, yelled, wanted to get down and run away, etc. You know, typical toddler behavior. ;) I think he was showing our new friend just how feisty HLHS kiddos are, ha! We are so happy to have a new friend and wish her the best in the months to come!

Special Request

Six weeks.

We are just 42 days away from Evan's heart cath and surgery. Barf.

Evan had his quarterly cardiology check up this past week. He is almost 30 pounds and still 35-36" tall. O2 sats were still low 80s and his blood pressures were good. He didn't get a complete echo because he will be having an extensive echo following his heart cath while he is still under sedation. Heart function still looks great, though, and no leaky valves! Evan was a total angel during his echo, thanks to Mickey Mouse and a watermelon ring pop. However, he threw his lollipop on the floor while we briefly waited for his DR to come in. Of course, I tossed it, and offered him a new one. Unfortunately, it was blue raspberry flavored and Evan was not ok with the change. He threw his first major meltdown in public and refused to calm down so that I could talk to his Dr. Don't let Evan's happy-go-lucky demeanor fool you, he inherited quite the Colombian temper and is not afraid to use it! ;) 

Ok, now to my special request.. Are you a local family member/friend? Is your blood type O+? Are you willing and able to donate blood? If so, please email me! We are looking for a couple of people to directly donate blood for Evan to use during/after his surgery. I know, it's kind of weird to be asking for your blood.. All I can think of is "I vant to suck your blooood", lol. But seriously, Evan always needs a few transfusions during and post surgery & it would be just awesome if he could use a friend's blood. Thanks!