Sunday, June 30, 2013

Post Op Day 5

I have to begin this post with a lot of thanks! First, to the big man above for continuously watching over Frankie and providing him with the strength he needs to continuously overcome the huge obstacles that have been thrown into his 21 months of life. And second, to all of our family, friends and the many, many other people out there that we don't even know who have been praying and continue to pray for Frankie. It's incredible. He's come a long way since Tuesday and he still has lots of healing to do but today he has done very well. 

Morning: Frankie slept through the night. He got much needed rest! Dr. Keller came by and took a look at Frankie and was very happy with what he saw. His belly looks good and sounds good. He's had several poops and lots of gas! The replogle was pulled and Frankie got the okay to start eating again! Only at 1/3 of his usual rate though. So far, he's tolerated it very well. We snuck in an Oreo and a Pringle, too. :) Frankie actually drank 120ml orally before deciding no more for the day so I put his ng in to do the rest. All of Frankie's leads were taken off of his chest and an iv out of his arm. He only has one iv now that he gets fluids through and his antibiotics (he won't be off of those until his drain tube comes out). 

Afternoon: Frankie officially left the icu! And hopefully for the last time ever! He is now on the 10th floor which is the surgical floor. It's SO nice to have all four of us in the same room! We've missed each other! We got all settled in and Frankie took a nap. 

Evening: Frankie has been super snugly and tired. He slept on Joe for quiet some time. They were so cute. I got some snuggle time, too. All of us are staying at the hospital tonight. In the same room. It's a big DiFranco slumber party! Now that Frankie is out of the icu, Lu can come into his room. And since I'm breast feeding, she can stay the night with us! We've taken over the entire room. Hopefully they don't get crazy up here and make us bunk with someone else! Anyhow, Frankie's O2 is at 1/2 liter. Leaving it there overnight and weaning more tomorrow. For pain relief he is getting a rotation of Tylenol and ibuprofen. It seems to be doing the trick. We're all off to sleep now. 

Much love and thanks to you all! 
No more replogle, leads and minus one iv! 
              Napping with daddy. 
                   Daddy pillow! 
                Both babies! At last! 

Saturday, June 29, 2013

Post Op Day 4

HUGE day for Frankie the incredible! Frankie passed yet another ERT this morning and is officially extubated! Thank you Lord! He's been on O2 all day (like he used to be before his ASD repair). He was on 1 liter but they put him on 2 just to have the extra flow. His O2 sats have constantly been at 100%. I assume tomorrow they will start to wean the O2 but they wanted to leave him chillin' the way he is for 24 hours after extubation. 

Frankie is very jittery from the stop of all of his sedation medications. But not enough for them to give him any to make him chill. He's still pretty weak. He's trying to roll over to sleep on his belly but doesn't have the strength to do it just yet. As for sleeping, he didn't do much of it today. He has been so jittery that he wakes easily and has a hard time falling asleep. He literally just closed his eyes (7:29pm). I'm hoping he sleeps like a rock. He needs it. 

Surgery just popped in and took a look at him. His incision looks good, his belly is softer, he's tooted and pooped a couple times now! Big deal right there! I didn't think I'd ever be so excited about poop and toots! But I am! The plan is to take his replogle out (suctioning stuff out of his belly) and replace it with a ng tube and start feeding him tomorrow. Little steps in that department. We don't want to do too much too fast. 

Frankie is still getting his PD (therapy to break up the goop in his sleepy lung). He's coughing some up every now and then. Sounds yucky. His X-ray this morning showed improvement and they don't plan on doing one in the morning. Just continuing the PD. 

So, tomorrow (if all goes splendid this tonight) Frankie will start eating and move to the floor! Praying overnight goes perfectly! 

He's been more of himself today. Talking a little. Watching some tv and holding some toys. He's coming around a little bit at a time. Joe and I are so happy that we have our Frankie back! It's been SO hard for us not to see those eyes and smile or hear that voice! 

Here's a picture of the sleepy head:

Love to all! 

Friday, June 28, 2013

Post Op Day 3

With each passing day, things are getting better. It's nice. Frankie was more awake today, even though the breathing tube is still in. He hates it! Well, as he should! Today he gave daddy "fives", "ones" and "knucks". Amazing! Our baby is in there! It brought tears to my eyes. Frankie also did a lot of reaching today and trying to talk. Breaks my heart that he makes facial expressions that we know so well but we can't hear a peep. Hurts our hearts. Also, he kept pointing at me. I kept telling him as soon as that tube is out and they say okay, I will hold you! For as long as you'll let me! Ohh how we long for that smile! 

Frankie's day went pretty well. Uneventful which is nice. Very nice. He passed his ERT this morning but they wanted to give him 24 more hours of lasixs to rid some more fluid retention to help with his respiratory rate. We have been calming him just by talking to him instead of giving him a bolus of sedation meds if we can. He mellows easily but also startles easily. He doesn't want any clothes or blankets on him but his temp was getting low and he felt cool to the touch so we kept sneaking a blanket on but leaving his feet out because that's the one thing he did not want covered. 

Frankie got much needed rest today thanks to his awesome nurse Dustin and his awesome respiratory therapist John. They're a hoot! Not to mention, it's nice for Joe do have "dude" talk! 

So the plan after rounds tonight is to do another ERT and extubate in the morning! Frankie will more than likely need supplemental O2 just until his body makes the final adjustments. After extubation, surgery will talk about starting him on SLOW feedings. Not right away but probably at night. We shall see. We think Frankie will be a much happier camper after the tube is out. He keeps trying to roll over on to his belly to sleep (that's what he's used to) but he can't because of the breathing tube. 

Continue the prayers, love and support! They work! Thank you all, from the bottom of our hearts! 
                     Resting today. 

Thursday, June 27, 2013

Post Op Day 2

Lets get down to it! 

Last night: Considering what Frankie has just been through, you'd think he needs ALL the rest he can get, right? Yeah, we thought so, too! All night long the nurse was irritating Frankie. Joe finally spoke up and said enough! And kindly but firmly asked that everyone be as hands off as possible. They tried to do his ERT (extubation readiness test) but he was getting bothered and desaturated so they decided to end it and leave him on the vent for today. Which I think he needed one more day. Frankie was irritable and wasn't seeming to respond to his mild sedation medication. Why you ask? Read on...

Morning: The iv that the sedation medication was going in to had blown out and they didn't know yet. So he wasn't getting any and was antsy and too awake to have a breathing tube. They switched to another iv (the one his fluid was going in to so they had to turn that off for a bit). Once he was mellow again, the iv team came in and poked 3 times to get the iv in. The actually ended up using ultrasound to get it because they were having difficulties. Once that was in, they returned to giving him fluid. Frankie has been getting a little respiratory therapy on his left lung. To be technical it has a small collapse in it. It's nothing to freak about. They do a little banging (gently) on his left side to loosen mucus. Then they suction it out through his vent. It's more like a "sleepy lung". Minor, but it's getting taken care of. The docs started giving Frankie lasixs every 12 hours to help him pee and get off some fluid since he was so swollen. No more fever. 

Afternoon: Frankie's vent settings have been weaned all day. They're pretty dang low. So, the plan is to do another ERT in the morning and PRAY for extubation. I think Joe and I are as ready for the breathing tube to be out as Frankie is. It's just scary. Frankie made three small steps this afternoon. We will take any size steps forward we can get! Frankie had his epidural removed and his catheter! He's been peeing well on his own! Surgery came by and said he looks great (very good to hear that from them!) and if he gets off the vent tomorrow, they will try giving him some food through the ng tube. We shall see! 

Evening: Frankie got a good amount of rest today. He hasn't had any major issues. No major desats in o2. He's holding strong. He's a tough dude! He was peaceful when I left to bring Lu home. He was a tad antsy at shift change when they messed with him but he calmed well. Joe has been staying overnight with Frankie so I can bring Lu home and let her sleep. He's a rock star dad. Joe and I are so used to being teamed up, side by side through every moment and since Lu can't come in to the icu it's been tough. My mom has been extremely helpful in watching Lu and visiting Frankie all at once. It's so hard as a mom to be in two places at once. My heart is so torn! I know Joe's is, too. We are both looking forward to Frankie moving to the floor so Lu can be in his room. 

Overall, Frankie's doing fine. As Joe and I both said today, slow and steady wins the "O" race! We have to do this in "Frankie time". He will let us know when he's ready for the next step. 

Side note from Joe: I love my wife and family very much and it is comforting that the other o baby is going through a lot of the same stuff. I had to towel off with a pillowcase after my shower and Frankie tries to pee on the nurse. -I asked Joe want he wanted to add and this was it!-

Please continue to send Frankie (and his O buddy and neighbor in the picu) and Hayden your prayers. We all appreciate it so very much! Love to you al! 

Wednesday, June 26, 2013

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! 

Monday, June 24, 2013

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,

Tuesday, June 18, 2013

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. 

Wednesday, June 12, 2013

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. 
-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.