The journey continues...post-op Day 5

Well, we have made it to post-op day 5 of the Fontan. It seems like ages ago that we were anticipating this surgery, and now we are just living the aftermath. It's amazing how much lower my stress level is at this point. I know that most people think that continuing to be in the hospital should be the most stressful thing. For us, waiting on the other side of those double doors, not knowing how things are going, and waiting to hear a real voice and see symmetrical breath sounds post-extubation are the most stress creating. Now we are just living it. It is just a careful dance of coordination for Heath and I to continue working a few days here and there, making sure our other children are taken care of, and making sure someone is there for Addy. Yes, it is exhausting, but as long as I watch this girl sitting up by herself in bed and watching her Dora while singing "we did it, we did it" and "oh no, Swiper the Fox", it doesn't seem so bad. Yes, it really does suck sleeping on the pull out couch, my bones and joints ache so much in the morning I swear I've aged 20 years overnight. The hospital food court choices get old very quickly, and our diet is nothing but a whim of a thought. But all those negative things pale in comparison to the joy we have with how well she has done. The defining moment came last night that we knew our baby girl was starting to feel better. She was sitting up in bed and I asked her, "Are you OK" and she says "Yea, I ok!" I will admit, I became a little weepy for a moment, but you just can't imagine how sweet those words were to hear. It means slowly but surely, our baby girl will be back to herself.

She made is out of oxygen yesterday and with good coughing is slowly clearing up the pulmonary edema and junk in her lungs. Her appetite has been great but she continues to vomit liquids (all but the 1.5 cal Pediasure that is so rich it's like a milkshake), probably because she hasn't pooped since Tuesday (i know, TMI). They are finally scheduling a bowel regimen so the hope is that her ileus will resolve with this and she will be able to tolerate fluids. The biggest negative is that her chest tubes both continue to drain a LOT. I'm trying not to dwell on this because this is the nature of the Fontan game, and I should be thankful that everything else is going so well. However, I can't keep those nursing thoughts out of my head of the "what ifs". It is ONLY day 5, and many are still in the ICU or on oxygen at this point so I should just quit my whining. But in the back of my mind, I keep thinking that we have had such a good course (quite unexpected and problem free), is this going to be our big downfall? Is this going to be what stops us in our tracks? Is this the other shoe dropping that we have been waiting for 2 years?

As always, I must continue to document our journey in pictures. I think it's as much cathartic for me as anything, so please enjoy! We would like to say thank you for all of the calls, texts, and visits we have received from everyone. The support helps makes this hellatious journey just a little easier at times.

This is right after we got to see her- Post op day 0, she still looks like our girl even with all the wires and tubes!

"Dare", he's always there!

The next morning, Post-op Day 1, she puffed up quite a bit overnight!

Finally extubated later on Day 1, she was much happier to have that tube off and a few wires gone!

Post-op Day 3 we made it to the floor, she still hasn't smiled or played yet and is requiring a lot of pain meds

She finally found her smile on Day 4! This was after she had her first bath since surgery and was feeling a little goofy! Pain is finally being managed a little better!

Kisses for Papa, he helped get her all clean and got plenty of smiles from her!

Daddy got kisses too, still feeling good at this point of the day!

My favorite contemplative picture, she is watching Dora and saying "Hmm"

Post Op Day 1- What a day!

Well, yesterday was a long day but we are happy to say we are on the other side of open heart surgery #3. They took Addy back about 8am yesterday. We were thankful that they tanked her up on Versed so it made a very scary moment for us much easier to smile through. Versed is a good thing....it hit her like a ton of bricks! All the sudden she was holding my Kindle closer and closer to her face, and then she was asking "where my Kindle go, where my Kindle go?" while she held it in her hands. She went easily with the OR team and we began our wait.

 To anyone that has never had to sit in the surgery waiting room...it is hell. A colorful assortment of families inhabit this area throughout the day as they wait for their offspring to various procdures or operations. Some of these families are wondering if they will see their child again...others use it as an opportunity to have a hillbilly family reunion- this phenomenon seems to be most commonly witnessed when the child is having a relatively simple procedure such as tubes in ears or an umbilical hernia repair that brings in family members from all branches of the tree. So...now that you have an accurate picture of what we're dealing with here, we waited...and waited...and waited. Dr B. finished up about 2:30 and came out to tell us exactly what we needed to hear. Everything was picture perfect in surgery, no unexpected complications. Her anatomy and pressures were the best we could hope for and hopefully this will decrease the risk of post-op complications.

We didn't actually get to see her until almost 6:00 last night, due to some breakdowns in communication, but the positive note is that it didn't have anything to do with how she was actually doing. The downside is that after placing the Broviac, and replacing it, the line just would not draw- thus we were unable to confirm that it was a good line in place. Throughout the night she was initially a little behind with fluid management but once all of that was regulated her urine picked up, lactate dropped, and gases were perfect.

This morning, she has started waking up with a vengeance! She had her foley taken out and we have started diuretics to start the drying out process. Her chest tubes are still putting out a good but reasonable amount. One of her ART lines has been taken out and the other ART and IJ central lines will probaby be taken out tomorrow. They were able to secure a new double lumen PICC line to serve as access until she goes home since the Broviac didn't work out. This is great because she was still sedated and never knew otherwise. The CV surgery NP finally was able come and pull her LA and Broviac lines so that means we are officially ready for extubation! This is good because she has been blowing through Dilaudid and Versed like they're candy all day- she wants that tube out! She has opened her eyes and shook her head no to a few questions, but mostly she just cries and cries whenever she wakes up. She will grab Bearie and hold him and has mouthed "Mama" a few times. Even as hard as it is for her to look at me and cry with a scared look in her eyes, it's all worth it. I'll take these tough parts over many more things we could be facing....    going to extubate, to be continued....



It's now 10:30 at night and the last 6 hours have been a blur. Addy extubated to nasal cannula and within an hour was on room air! She has had the O2 back on some just because she is still desaturating when she gets ticked and holds her breath but for the most part her sats are >92% ,which is better than we have ever seen! She is definately not a happy camper but I am overjoyed to be able to say that Addy is still the same girl we sent to surgery! The first few hours she mostly slept off all the sedation and occasionally woke up distressed. After 3 hours she began demanding "Addy drink, Addy drink" and "momma hold Addy". She chugged down 3 glasses of fluids in about 30 seconds a piece and just couldn't satisfy her thirst. Finally they gave the OK to advance her diet and she got her favorite food in the world "appleshaush". She ate half a container, demanded to be held (we of course complied), let out the world's biggest belch, and promptly fell asleep! She even slept through both of her breathing treatments and never moved! They are anticipating removing her IJ central line and other ART line later tonight (when she is already awake if they are smart). We thankfully have a sleep room tonight so I am finishing this up to try to get at least 2 solid hours of sleep. The exhaustion has truly set in tonight to the point of feeling sick but it doesn't matter. I will go days on end without sleep if she needs me there. Luckily I think we have had great nurses so far so I trust they will take good are of her and won't hesitate to call me back if she needs me- so that's the only reason she is out of my sight for now. I just want to say how touched we have been by the outpouring of love and support from friends, coworkers, family, and complete strangers. We are truly blessed and feel that God continues to bless us every step of the way with not only one amazing little girl but a great amount of love from so many people!

Night before the Fontan

Today was a long day. We had pre-op appointments starting at 9 am that thankfully we were done with by 1:30. As far as pre-ops go, I don't think our timing was too bad. The only sour spot of the day was the crummy phlebotomist (who had previously been fired from ever taking her vital signs due to poor technique and attitude) that took 3 sticks (and a piss poor attitude) to get her labs drawn. Otherwise, she laid still like a big girl for her echo for the first time since she was a baby! She only got a little freaked a few times but Toy Story was on so she was able to be quickly distracted. Our meetings with Dr. B (surgeon) and K (cardiology) went great and they are happy with the shape she is in prior to surgery. Dr B. says that hopefully he will be in and out and she will fly through it the same as the last 2. We are psyched that he is going to put a Broviac line in while in surgery at our request. Let me explain why this excites us. For her previous surgeries, Addy (and most pts) went to the floor with their RA (right atrium) central line. The protocol has now changed and now they pull this line and then put a whole new PICC line in these kids when it comes time to go to the floor. Well, with Addy's history of making it out of the ICU in record time, we weren't psyched about another invasive procedure and risk of infection so soon after surgery. This way, if he puts the Broviac in while in surgery, she can keep it for as long as she needs the IV diuretics and doesn't have to undergo another procedure that she'll have to be traumatized and sedated for. Hopefully if this goes well this could be a new thing that they do for more of the kids. Yay for less sedation and traumatizing procedures!

Grandma has been hard at work the last few days making Addy special hospital gowns and tele-pack pouches for her during her stay. We have our Dora goody bag of new toys to occupy her once she gets to feeling better, and plenty of snacks to keep us awake while we stand guard at her bedside. The kids are staying with my parents tonight, it was pretty tough not to lose it as Hunter (big brother) broke down crying before he left because is worried about her. Maci understands Addy is going to the hospital to get her heart fixed, but not quite the intensity of it. We plan to let them visit after she is extubated, but just don't think that sitting in a hospital for 12 hours and waiting is fair to them. 
 
Addy had her chlorahexadine scrub bath tonight and is all clean and ready for surgery. Tonight I laid my baby girl down in her bed and kissed her for about the thousandth time today. The tears in my eyes and heart threatened to overflow as I wonder if it will be the last time I put her to bed. She smiled at me that gorgeous smile and said "night night Mama" as I closed the door to her room. Two years ago, we didn't know if we would bring our new baby home- and we thought that was hard. Now she is no longer a baby but she walks, talks, blows kisses, gives high fives and knuckles, asks for Dora, sings ABCs, listens to her heart, and about a million other things.....and I'm scared to death that her heart won't restart on that table tomorrow. You know, I think that any other kind of surgery would be easier to take than knowing that a surgeon is going to have to cut open your child's chest and stop their heart....and know that only his skill and Gods hands are what will restart it again and bring our child back to us just as she is. I know all of the heart parents out there would agree that as they grow and develop their personality it becomes oh so much even harder to hand them over. I'm afraid that this may be the first time that she will cry as they take her away from us. I'm not sure yet if she will need happy medicine yet, but I'm not opposed to it if her mood appears to be clingy in the morning. Since I know that at her age she eventually won't remember going to surgery, I think the happy medicine is really more to prevent the trauma of having to watch your child cry and be taken from your arms. After 2 years, I always think I'm so used to this that it doesn't even phase me anymore. But really, every single day it scares me to death. Please pray for our family tonight as we prepare our warrior for her last big battle.