Thursday, May 30, 2013

Home Sweet Home


Can you believe it? All of the worry, anticipation, anxiety, fear, what ifs, and tears- gone. We did it, we crossed the finish line of the longest race of ours lives. I couldn't be any more proud of Evan! 

We were discharged home yesterday morning. Now we are focusing on continued healing and rest for Evan, as well as encouraging the little guy to eat/drink and helping him build his strength back up in his legs. It will still be a few weeks before Evan is feeling like himself again so please continue to pray that he recovers well at home. 

I know so many of my heart mama friends are "Fontanning" it this summer and I want to make sure I share our experience in detail for you. We all know it is rare for our kids to share the exact same experience, but hopefully you find encouragement and reassurance through Evan. 

Before Evan's Fontan, I researched and learned as much as I could about the Fontan. I asked post-Fontan moms for advice and read through as many Fontan blogs as I could. I was confident that I was more than prepared for what was to come. But the truth is, I wasn't prepared at all. 

The Fontan freaking sucks. 

Really. For myself as a parent, it was the worst of the 3 surgeries. Going through open heart surgery with a newborn and 5 month old seemed HORRIBLE at the time, but the Fontan takes the cake. Evan was miserable all day every day. He needed our attention 24/7 and it was exhausting. The first day, we stood at Evan's bedside trying to keep him calm for 8 hours. The next day, I sat in a chair with Evan in my lap for over 6 hours. I spent so many hours laying in bed with him that I was sure I would have bed sores by the time we were discharged. I spent every second worrying that Evan was in pain, scheming to trick him into eating or drinking, and begging God to help us get through it all. It was awful, but it didn't last forever and we are already falling back into a normal routine at home and I know these memories will eventually fade into just that- a memory. 

For those of you preparing for the Fontan, I have compiled a list of 10 things I didn't know before the Fontan. These are things that no amount of research could have prepared us for because they were unique to Evan. If you've already survived the Fontan, I am interested to hear what your "list" is! Alright, here we go: 

1. I had no idea the conduit they use for an extracardiac Fontan was SO big. I had trouble uploading the picture on my last post so here it is again. It's hard to believe something so big fits a 2 year old's heart. 

This is a 24mm conduit.
2. Evan's oxygen saturations before surgery were 80-81. After surgery, he was 90-91. Because of his fenestration (a small hole between his heart and the conduit, used to help with pressure) his sats quickly drop when he is upset. He would drop to 70 after just 30 seconds of screaming and turned super blue. But, as soon as he started to calm, his sats would rise back to normal very fast. I've never seen Evan desat and recover like that before, but now that he can physically show signs of a true desat, it will be easier to recognize and help him recover. 

3. For the Norwood and the Glenn, Evan only had one mediastinal chest tube. For the Fontan, his surgeon routinely places a mediastinal and two pig tail drains, one on each side of the chest, for pleural effusions. Not every surgeon does this, but I was surprised to learn that there are several who do this routinely just in case the patient develops PE and then they don't have to go in and place more chest tubes. 

The big tube in the center is the mediastinal. The small tube with the cotton ball over it is a pig tail. 
4. During the removal of Evan's chest tubes in the past, the PA just rips it out and applies gauze and tape over the opening and it heals. This time, the surgeon had a suture wrapped around the tube and when the tube was pulled, the PA synched the suture. No bleeding! 

5. Scooping a 30lb toddler like a newborn is NO JOKE. Ladies, start building up those biceps and shoulders. There were several times when I was holding Evan that I literally thought my bicep was about to rip in half. It's so hard not to pick up a toddler under the arms. Try it for a day now and figure out what works best for you before you are fumbling bed side with a fragile kid. 

6. I never knew so much fluid could come out of a little body! Evan ended up draining almost 45 ounces from his chest in just 7 days. He drained 15ounces in one day alone! On the day he drained over 400mls, I thought for sure we were going to be inpatient forever. The next day, he only drained 56mls. Don't get discouraged! 

7. My kid is an animal. He loves to eat and drink all day long. We have never had a problem with Evan gaining weight or eating enough. I did not expect his appetite not to return after surgery. It was a struggle all day long (and still is) to get him to eat anything. We tried all of his favorites and tried games/distractions, nothing worked. At one point he had to be given IV fluids and there was talk of a NG tube because we couldn't get him to eat more than 2 goldfish crackers. 

8. I didn't realize managing his pain would be as hard as it was. Right after surgery, Evan was still on morphine and coming off the the anesthesia and he was still thrashing around. We could not keep him still, even after max doses of some heavy pain medications. The only time I broke down was one night where we could tell he was in some serious pain and there was nothing anyone could do or give him to calm him down. I have never felt so helpless as a parent in my life. Prepare yourselves for that, mamas. 

9. Walking was impossible. Guys, if your child is anywhere near as stubborn as mine is, no amount of begging, pleading, bribes, or tricks will get your kid to walk with the chest tubes in. We tried every day to get Evan out of bed and walking and he just refused. It wasn't until all of the chest tubes were removed that he tried to walk but by then he had laid in bed for 8 days and his legs were too weak to support himself. He was so frustrated that he wasn't able to stand and walk. On day 6, our amazing nurse brought us a mat for the floor so Evan could get out of bed and play. I wish we would have had that on day 2! Also, wagon rides outside of his room were worth all the effort it took to get 3 chest tube boxes, a monitor, oxygen tank, and IV pole out with us. Evan was happiest rolling through the unit. 

This is the walking contraption they.. Chest tube drain boxes, oxygen tank, and the monitor hang on the sides. 

Two nurses and a tech to go for a wagon ride.. So worth it. 

10. It will be over before you know it. The whole time I kept thinking "Man, I have no idea how we survived being inpatient for 30 days for the Norwood". We were discharged on day 8 and now the fun begins.. 

Pretty soon you will be home snuggling in bed <3 

THANK YOU to all of our friends and family who contributed to Evan's treasure box. Everything came in handy and Evan loved playing with his new toys! Because there were so many things donated, we wanted to share the love and gave a bunch of stuff to the Child Life Specialist so that other little ones on the cardiac floor could have something new to play with too. There were so many little ones left alone all day with no family there to visit, we know they will enjoy something special. & thank you to our family and friends who came to visit Evan, he enjoyed sharing laughs with you all and it meant a lot to us! 

We are so blessed... <3 

Tuesday, May 21, 2013

We are post Fontan!!

We just met with the surgeon and everything went as planned. The surgery went very smooth and the DR is happy with the procedure. I just want to jump for joy and scream!! I cannot believe we are officially post-Fontan! Thank you Jesus for taking care of my little boy! Will update later after we see  Evan.

Fontan update #3

Evan is still on bypass. The surgeon is finishing up the conduit and then will be checking out the blood flow. Should be another hour before our next update.

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.

Monday, May 20, 2013

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.

Sunday, May 19, 2013

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.

Friday, May 3, 2013


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!