It has been 2 months today since Frankie has his belly repair! I can't believe how quickly time has gone. The child is truly a tank. He has been without his feeding tube for about 4-5 weeks now. Consuming most of his calories through his fortified pediatric drink, but he's doing it! Gotta start somewhere, right? He rocks! Short and sweet post right here! Love to you all!
Thursday, August 1, 2013
Speechless defines the way I feel, 100%.
We can not thank Keller and his team enough for all they have done to not only save our child's life, but improve it. Bring normalcy back to it. Love them all tremendously!
Saturday, July 27, 2013
I don't even know where to begin. There's so much good stuff to talk about! Lets see...
First and foremost... Frankie has NOT had his ng tube in for 2 weeks! You heard me right! He's been successfully meeting his caloric intake without it! It's wonderful! Frankie needs around 1,000/cal/day. Just from his soy pediatric drink alone, on average, he gets 750/cal/day from that. And then add the additional food he's eating. He's doing great! No need to put the tube back in at this point (or ever as far as I'm concerned!). Frankie will continue to see his OT, Ellen, once a week. The dietician is watching him very closely also since the tube is out. Lots of weight checks. So far, he's maintaining.
Frankie saw his PT on Thursday... He has graduated from physical therapy! Her services are no longer needed! It was emotional to say goodbye! She (Angela) has been with us since Frankie was 5 months old! We will miss Angela!
Frankie's scar looks great! Each day it's looking better and better. His follow up appointment with his surgeon is on Thursday. I'll be sure to blog about that as well. And hopefully get a picture of Frankie and the amazing surgeon as well! He's done SO much for Frankie to change his life, it's unbelievable.
Frankie's been having a wonderful summer. Lots of swimming, water play, park time, museums, hanging out with Rae and Riley. It has been so wonderful!
And what else is wonderful? When someone looks at our son now, it's genuinely because he's handsome. Not because there's a tube on his face and they're wondering what's wrong with him and why he's "sick". It's so nice!
Love to you all! Lots and lots! Now for pictures!
Thursday, July 11, 2013
Frankie's kicking ass and taking names! I love every second of it! Here's how his appointments went...
Dietician and OT: The last 3 days I have been making an extensive list of what Frankie consumes orally. I'm going to submit these 3 days to the dietician and she will input the information into her database and see how many calories a day he's been consuming and all the nutrients and water he's getting from his food. Frankie has been eating like a mad man and both the dietician and ot are very impressed with this change! And we're all hoping that this continues. When Frankie went into surgery he was roughly 21lbs. When we got home, he was only about 19.5lbs. When he was at the pediatrician on Tuesday, he was back to his 21lbs! Go Frankie! Frankie is very close to getting rid of his ng tube. Once he does some catch up growth and maintains this good eating, we are saying adios to it! Praying, praying, PRAYING we can say good riddance to it by his 2nd birthday in September. It's doable! Frankie is not getting any food through his tube at all during the day. He only gets 2 feedings at night. And at this point, it may be an over kill in calories and he may not need the night feeding. We will see what the dietician has to say.
Pediatricajn: Frankie went to the pediatrician on Tuesday for his surgery follow up. She was so impressed with Frankie! She was almost in tears of happiness! She couldn't believe how well he was doing. The last time she saw him, he was getting extubated in the icu. She was very happy with Frankie and doesn't need to see him again until his 2 year check up! I am going to weigh him at home next month and then report it to her. She wants Frankie to be a little more than 22 lbs. I think he can do it!
That's all I have for now! I can't wait to hear from the dietician and see what she has to say about his calorie intake!
Love to you all!
Saturday, July 6, 2013
Frankie is without a doubt, a tank. Look it up in the dictionary and it'll say Francenzo Michael DiFranco. He rocks!
Frankie is doing so well! His incision looks great! Yesterday, I took most of the sterile strips off. The top two were still stuck on pretty well so I left them on. Discharge letter said to remove them on 7/5. I will remove the others when they loosen up. He is eating a lot of food! Joe and I are very hopeful the food keeps up! We'd love to see the ng go! That would be the last and final thing!
Frankie is back to running around, climbing, asking for Elmo and Choo Choo, doing his puzzles, putting trains together and coloring! The only thing Frankie is having trouble with is sleep...
There's still a bit of anxiety and stress when he goes to sleep. The last couple days he did really well. He went down fine for naps and bedtime but last night he slept from 8pm-10:30pm. And from then, he was up until at least 2:30am. And then back up for the day at 6:30am. He would freak if I walked out of his room so Joe ended up bringing him to our bed but he didn't sleep any. With each day, things will get better and he will fall back into his routine and forget about the scary surgery he just went through. Poor baby.
Overall, he's doing super though! Tuesday he goes to see his pediatrician for a follow up and weight check. I'll do an update then. He doesn't have his follow up with his surgeon until August 1st.
Good news on Frankie's O brother, Hayden! He was discharged today! So, thank you all for the massive amount of prayers you continuously give Frankie and Hayden. Means a lot! Love to you all!
Tuesday, July 2, 2013
FRANKIE IS HOME! I can not believe it! He is doing well. He's more and more himself each day. As soon as he got in the car, he lit up. He started talking more, smiling and laughing more. Thank goodness! Once we were home, he ate well orally and played with all his toys. He didn't nap much though. He has the separation anxiety that I knew he'd get. He wants Joe and me to be here, in site, at all times. He's afraid, I'm sure, that someone is going to bother him or hurt him. We've gone through this before. He slept on me for about 30-40 minutes but that's all. He just fell asleep in his bed for the night. It was a struggle to get him to sleep. Broke my heart but he's good now. Getting these babies back on schedule is going to be some work!
He's only had one dose of ibuprofen today and he seems comfortable. And eating a lot. Asking for food and water a lot. It's great. Praying this keeps up.
He sees the pediatrician next week on the 9th for a follow up and then he sees Keller August 1st for his follow up with him. I have to be sure to get a picture of the two of them together.
Walking out of SLCH today, I was fighting back tears like you wouldn't believe. Once we got in the car and headed toward the exit, I lost it. I remember so vividly the first time we walked into SLCH when I was pregnant with Frankie. We were meeting the Fetal Care Center to talk about Frankie. A couple days before, I had gotten my amnio. Joe and I were sitting in a conference room with the fetal care coordinator, a surgeon and a neonatologist. Listening to the things they had to say was unbelievable. Lots of sad things and not the best of outcomes. The outcome of the pregnancy did not look good. But since Frankie didn't have any chromosome abnormalities and his heart looked good (so we thought) then there was no reason for us not to fight for Frankie. So, here we were walking out of SLCH with Frankie, 21 months old, repaired. Pphn is gone, ASD repaired and his O repaired. All the things that were battling against him, he overcame. Like a champ. He has defied odds countless times. Joe and I are so thankful to have such a stronger fighter and the support of all of our family and friends.
Thank you all. So much. I will post another update in a couple of days unless Frankie starts doing cartwheels or backflips. :) it's possible! Love you all, very much.
Monday, July 1, 2013
Frankie said goodbye to 2 more things today! His O2 and his drain! Wait, make that 3. No more antibiotics either! He still has his iv in but it's not being used. They're flushing it just in case. It'll be the last thing to go.
As you can imagine, it's hard to sleep in the hospital. That being said, Frankie didn't nap well at all today (neither did Lu). It took me 2 hours to get him and Lu to sleep this evening since they were both overly exhausted. I kindly asked the nurse to have the tech hold off on vitals as much as she could tonight. We shall see how that goes.
Frankie ate a lot orally today. Joe and I are impressed! We hope this keeps up! We've been slowly increasing his soy formula and he's doing well with that, too.
The nurse told us that it's written in the computer for us to be discharged tomorrow. I sure hope so! We're all yearning for our home routine.
Frankie got to go play in the rooftop garden today! Fresh air at last! He's still wobbly on his feet. Gaining strength each day. I'm just beyond thankful, blessed and amazed at all the differences a little sleep and healing from one day to the next can make! It's unreal.
Lets all be sure to keep Frankie's O brother Hayden in your prayers, too. He needs prayers for rest, relaxation and strength. Don't forget about his amazing parents, too! Love to the Hoskins!
Short and simple this evening. I like it. Love to you all!