Post Op Day 1

Hey everyone,

Sorry for just now getting an update out. The first 48 hours after surgery are always so tough. Getting the right sedation without over doing it and getting the right about of pain medications. The perfect "cocktail" as my mom put it! :) So, let me break this down and try and get all the details I can in this post. 

Surgery: Everything went well. There were no complications or unexpected problems. The surgery only took about 3 hours. They were able to obtain full muscle and skin closure without any synthetic materials! That's amazing! We weren't sure if this was going to have to be a stages surgery or not. Frankie did not end up with a g-tube. With the placement of his liver and the way they would've had to have finagled it around his organs to his stomach, the surgeon wasn't comfortable placing it. If he is to get one, it won't be for 6 months. Honestly, Joe and I are hopeful that after he is fully recovered, we can pull the ng tube and just let him figure out how to eat by mouth. He's actually (prior to this surgery) been doing pretty well drinking is soy pediatric drink and eating some foods and telling us when he's hungry. Ideal as if the no g-tube may be a blessing in disguise. We shall see! 

Overnight: Frankie has done fairly well now is still intubated as of now (11:47am). The plan is to wean his ventilator settings today and tonight and then extubate in the morning tomorrow. They just don't want to rush it. He's initiating all of his own breaths which is great but still has to be weaned down on some pressure settings. Last night he had a couple of bad de-sat moments and his ox-saturation drop in the 60's and then another time in to the 40's (terrifying). They are trying to keep Frankie lightly sedated so that he can breath on his own. He is on versed for that and something they call "dex" (dexmedetomide) to take the edge off. He's on a small amount of fentanyl for pain. He has an epidural in his back that administers the good pain meds to his abdomen. His urine output tapered off last night. This caused him to swell a bit. They are planning to take his catheter out since it keeps clogging. This should help the urine output and relieve some swelling. If he doesn't urinate in 6 hours, it goes back in. Frankie also developed a fever last night. It's not as high as it was last night but he still has a mild one. They're doing urine, blood and respiratory cultures to make sure there's no bacteria growing. 

The plan today is just to wean his vent settings and make sure he remains comfortable. And get him to pee! I do believe that is all for now. I will update Facebook later this evening. 

Please keep Frankie in your prayers through this difficult recovery process. He is strong but all the prayers and good wishes definitely help our Frankie! Also, please keep his fellow O buddy Hayden in our prayers, too. He is just a few rooms away in the picu with us. 

I'm posting pictures of Frankie's surgery. They aren't gruesome but may not be for everyone. We are so proud of our son Frankie and want to share all of his amazing strength with you all! Love you all and many, many thanks!!!!

                    Last O picture, ever! 

                     Muscle closure! 

                    All closed up! 

       Flat belly! This is just after surgery.    Our first time seeing him. Still intubated. 

           WE LOVE YOU FRANKIE! 

A letter to Frankie.

Dear Frankie,

The last 21 months of your life have been nothing short of a roller coaster ride. From your birth day to your first nicu stay. From your bowel obstruction to your second nicu stay. From your pphn flare ups to your ASD repair. And from your most recent cardiology visit (no my evidence of pphn and a healthy heart!!!!!!) to today.... You continuously amaze not only your daddy and me, but the entire world! You have an unsurmountable amount of love, STRENGTH and courage! 

You've been known for your O, Frankie. It's made you who you are. It's the only way we have all ever known you. So, to think, that tomorrow morning it will no longer be there is so strange. So bittersweet. To know that after tomorrow, all of your major medical concerns will be taken care of is unbelievable! To look at you the day you were born and then to look at you today, I never thought you'd be such a force! A force that has not only changed me but many, many other people! There are thousands of people, all around the world (from the US to Canada to France to Australia) praying for you! That think of you every single day! 

Tomorrow is going to be a huge day for us all. It's going to be tough for me to see you down and out instead of running around, giving kisses, playing with choo choo's and asking endlessly for Elmo! I'm going to miss that for a couple of days but I know that it will all be worth it. I will be looking back at all of this one day in amazement. 

So, hear me scream it out loud Frankie Michael... I love you! To the moon and back! You are my Tank, my force, my Buddha, my sugar beets. My EVERYTHING. And your father and I love you more than anything else in this world. We know that you will overcome this "small" hurdle just like you have everything else that's been thrown at you. I can't wait to see all that life offers you and what you make of it. You were obviously put here, on this Earth, to teach us all love and strength and many other things I look forward to discovering as you grow. 

With ALL my love to you Frankie,

Mama

1 week....

One week from today, Frankie will no longer have an O. Is this reality?! After 21 long months, I'm hopeful this is either his last or second to last surgery. God has blessed us with the strongest child. LOVE. 

Anesthesia Consult...

Yesterday, we took Frankie to SLCH for his anesthesia consult for his surgery on the 25th. All went well. We went over the usual business:

-Versed to calm him before they take him back. 

-Gas to knock him out. 

-Insert IV's (several I'm sure), ART line, possibly central line (hopefully not). Anesthesia meds through IV.

-Intubate him. 

-Surgery. 

-Always the possibility of a blood transfusion (Donate blood everyone!)

Surgery will be roughly 4 hours. 

I'm having a very hard time getting ready for this. Lulu can't go in to his ICU room or stay over night at all. Once he's on the floor, she can go in to his room but not stay the night. 

Lord, give us all the strength (especially Frankie) to make it through this. 

One month...

One month from today, Frankie will be getting his first (hopefully only) belly surgery. Sheesh, my heart aches. 

Frank the Tank!!!!!!!! 

Holy moly, it's happening!

We took Frankie to see pediatric surgery today (Dr. Keller) and he is ready to start Frankie's O repair/closure surgery! Hopefully only one surgery is necessary but most likely a couple. 

SURGERY IS SCHEDULED FOR JUNE 25th! Early morning. Not sure on an exact time until the day before. 

Is this really happening? I swear I just was in the OR delivering him and being terrified! And I swear we were just in the NICU wondering when we could take our baby home! I'm happy, scared, nervous all at the same time! This is a MAJOR, MAJOR step. Like, the beginning of the end! Wow! -tears in my eyes- 

Keller is hoping to put a g-tube in at the time of surgery but if he has to use alloderm, he's going to wait until it's healed to do that. Otherwise there's far too much risk for infection. We DO NOT need that! Dr. Keller is very confident in Frankie and thinks he will do great. He said his heart was the worst of it all and since that's all fixed, this should be a breeze for Frankie! Very hopeful that is the way things will go! He's been through the toughest part already so he should rock this! Keller anticipates us being there for a week. Being in the ICU the first night as long as there's no complications. Then we will move to the surgery floor. 

I am typically on top of all my questions and concerns, but today I was just fumbling over my words once he said let's do this! All my questions went out the door, lost in space. I was a nervous wreck. I had I apologize to the doc because I was all over the place. He understood! 

Anyhow, I'm rambling. This is a big deal and I have all the faith in the world that Frankie will do well and that the doctors and nurses will take exceptional care of him, as usual. This is just so scary. These next 6 weeks are going to be tough for me, emotionally but as a family and with all of the love and support we get, we will all get through! 

If there's questions (since my mind is all over), don't hesitate to ask me! 

Send your prayers to Frankie! Love you all! And thank you SO MUCH! 

Chilling at the doctor today! :) 

Can I get an Amen?!

Cardiology visit today was AMAZING! Frankie has yet again, defied the odds and kicked ass! Prayers work! 

So here's how it went. Frankie had an echo done to look at his asd repair and pphn. Surgery wanted Dr. Grady (cardiologist) to give the okay for them to repair his belly if his heart and lungs could handle it. Frankie did great during the echo. Chilled, watched his Elmo with daddy while Lu ate (as usual!). We went back to our room and Grady came in and gave the best news!  NO evidence of pphn anymore! And the okay for belly surgery! AND no more sildenafil (Viagra)! He's been on that since birth! So now Frankie takes NO medications! How freaking sweet is that?! Dr. Grady feels as if Frankie will do well as he's shown us he can do. He said he may or may not do an echo right before the surgery since he will be off the meds but he's pretty much out grown his dose so there may be no need to do one. If that's the case, we won't see him for a year! Unless complications arise during belly surgery. 

Joe and I are beside ourselves. This is the best news we've had in a long time! For them to tell us no evidence of pphn is unreal. When we first were told about it and explained the complications and the likely hood of him outgrowing it, we were so scared. It very well could've been what took his life. I remember the doctors just doing trial and error and being hopeful things would work and they have! Tears were in our eyes! And thankfulness in our hearts! It's not over yet but dang, what a hurdle that's been overcome! This child is truly a miracle! He doesn't even know how amazing he is yet! He's so special, a blessing. And I can't wait to see what all his life has in store for him! 

Thursday we meet with the surgeons and I will update again after that. THANK YOU, THANK YOU all for all the prayers and support. They're working. For sure. Hopefully this belly surgery is the last hurdle for the tank to overcome. Love to you all! 

Here are some pictures of his belly today. And step by step of how we wrap it. Pardon his weewee. I don't have an app to edit pictures on my phone. 

Applying Xeroform:

Wrapping with gauze:

Ace bandage:

And complete!