Frankie's Appointments on 11-15-12

Hey all! Sorry I am just now getting out this update on Frankie's two appointments he had on Thursday last week! Overall, everything went PERFECT! Our first appointment was with pediatric surgery...

The reason we went to this appointment is because we were concerned that Frankie's hernia had returned in his right testicle. Joe, the pediatrician and I had all tried to reduce it with no luck (we didn't try too much because it obviously doesn't feel well to have someone squeezing your jewels). The pediatrician just said to go see surgery unless it starts to change colors then go to the ER. Dr. Keller (surgeon) tried reducing it as well with no luck. He was actually pretty bummed about the entire situation. He said, and I quote, "If there is a loop of bowel in there, someone is going to have to wipe tears from my eyes because I don't know what to do with this kid." Eeek. That was hard to hear. Dr. Keller doesn't feel comfortable doing any sort of surgery on Frankie at this time. Also, if he was to go back in and fix that hernia, there is a pretty good risk of damaging his ball.... We were sent off to get an ultrasound of the family jewels to make sure they looked good. THANK GOD, THEY LOOKED GOOD! Frankie has a hydrocele in his right testicle (fluid) and it should go away on its own. We will return to see Dr. Keller in 3 months to check up on it. Where does the fluid come from? Since Frankie has recently had an ear infection and a runny nose, a lot of times they retain fluid down there from being sick and it will eventually go away.

Neonatology: We went for Frankie's one year developmental testing. The Baylee test is what they did. Frankie is not delayed at all! It's so amazing! His doctors were impressed! He has been through so much this last year and has spent an awful lot of time in the hospital and I am just so happy and impressed with Frankie that he isn't behind in any area! He is very close to walking! He needs a big boost in confidence but he is SO close! Joe and I have gotten him to take 4 steps at the most at a time. He does a couple here or there. Of course, Frankie is small and they would like him to be larger but I think his doctors are starting to realize that he is just a little (but mighty) guy! I will be speaking to a cardiac dietician hopefully Monday about the amount of calories Frankie should really be getting.

I do believe that is it! HAPPY THANKSGIVING! We love you all so much!

Frankie was passed out when we arrived at the hospital for his appointments! We arrived at 1030am, I had to carry him in and push his stroller. This is in the waiting room. He didn't wake up until they weighed him! And, we didn't get home from our appointments until 4pm-ish. LONG day! He did great!

Amazing!

Today, my mom and I took Frankie to see Dr. Grady (cardiologist) for his final follow up on his asd repair.

First, the fellow came in, asked lots of questions, took a listen to him and said he looked and sounded great. Dr. Grady came in and then agreed. We were then sent off to get an echo to actually get a picture of how things are looking.

Frankie did great during his echo! He usually doesn't enjoy them but this time he laid in my lap and we watched a couple of his favorite music videos on my phone. When the doc came back with results I was extremely impressed with my child! I just couldn't believe it! Frankie's heart looks fantastic and his lung pressures do, too! We are not in the clear of the pphn yet but his pressures were certainly low enough that they couldn't measure them through the echo. This is tremendous! I mean, just 1 1/2 months ago Frankie was on oxygen, extra doses of meds and was having a hard time breathing! Now he is off of oxygen and they actually eliminated a medication today and dropped one of his doses of Sildenafil!GO FRANKIE, GO FRANKIE, GO FRANKIE! This kid is a freaking all star! I can't wait to see what his life entails!

I asked about his pphn and since it is getting better, the only real way to get a good look at it at this point would be to do another cardiac cath. They do not have a plan to do this, at least not for now. I'm sure we will in the future. We don't have to see cardiology for 6 months! That's right, 6 MONTHS! I almost peed my pants! Love this kid.

Frankie does have two other appointments this week, too. On Thursday morning I am taking him to see pediatric surgery because, unfortunately, his hernia has returned on one side. Joe and I are totally bummed... one more damn surgery. Ugh. So, Dr. Keller (surgeon) will be taking a look at that on Thursday morning and give us his opinion. Also on Thursday in the afternoon, Frankie will be having his one year appointment with neonatology. This appointment will take awhile. They do all of his screenings to see where his development is. He is doing this one a couple months late due to his asd repair but it's okay! Needless to say, Thursday is going to be a long day! Not sure how we are going to fit a nap in, but I will work it out!

That's all for now! Much love to you all!

ASD Repair Follow Up

Last week, Frankie went and saw cardiology. They just took his height, weight, blood pressure, a quick listen to his heart and a look at his incision. All of that went well! We talked about how he has a lot more energy and a bit more interest in food, too. Now is the time for us to be aggressive with his feeding plan. Around Thanksgiving, I will take Frankie back to cardiology so that they can do his echo and EKG. They wanted to make sure he was completely healed before doing this. Healing time is 6-8 weeks. He's currently 3 weeks post op!

Today, Frankie saw his pediatrician. She was impressed as well with how great Frankie is doing and looking and how good and different his heart sounded. Frankie is on the smaller side for his age but he is still growing really well. He's a little over 18lbs now. She too, told us to be aggressive with his feeding now and do our best to get him off of the dreaded feeding tube. Of course it's easier to feed him this way but it causes so many other issues and annoyances. Frankie does have his first ear infection in his right ear. I'm very bummed and unhappy about this. I'm 99.9% sure it came from his Little Gym experience last week. It was nasty and I was very displeased with it and am even more so now. He's on antibiotics and doing well. You never would've known he had one! Just a stuffy/runny nose and a watery eye.

That's pretty much it! He's doing really, really well! Definitely a Tank! He's close to walking, too! He just needs a bit more confidence! Almost there!

Next appointment: 3 weeks to see the pediatrician again about his ear. After that, it won't be until we go to cardiology around Thanksgiving.

Much love and thanks!!!!!

Mended heart maniac!

We've been home now for three nights. When we brought Frankie home on Saturday afternoon, he was really excited! We let him play for awhile before lying him down for a nap. Let me tell you a little something about Frankie's sleeping habits...
Typically, Frankie is a great sleeper. When you lay him down for a nap he will play until he falls asleep, no issues. He also sleeps through the night, no issues.
Saturday, I had to rock Frankie to sleep for a nap, drive him in the car to fall asleep in the evening (he just kept crying and crying in his bed) and he woke for several hours crying. Sunday was a repeat. Very short naps, waking a lot at night. Joe and I feel so awful. We tried any and everything possible. As soon as we would lay him down he would cry. Like he was afraid they would do something to him or wake him to poke at him. It's heartbreaking. All we could do is reassure Frankie that we were home and we were here for him. Yesterday, he fell right asleep for a nap and talked himself to sleep at night and slept! He slept GOOD! He woke one time at 115am for a split second. I put his blanket on him and he went back to sleep. I'm praying for his sake, that we are getting through the sleeping troubles and that he's no longer afraid. I mean, he did just go through a traumatic event.

Frankie has been even busier than he used to be, if you can believe that! He's pulling up on EVERYTHING! Scaling the walls! He's extremely close to walking. He has more energy, stamina and less fear of doing new things! Frankie has also been more in to eating by mouth! Joe and I are so excited! He will try anything and put food in his mouth! Yay! Praying this stays this way and we are on our way to saying goodbye to the ng tube! HOPE, HOPE, HOPE!

Frankie still has bruising from his Iv's and central line. His incision is looking great! By next week we won't have to bandage it up anymore.

On October 11th, we have Frankie's follow up appointment with cardiology and the 16th we go see his pediatrician.

Overall, he's doing amazing. I just can't believe it. He's an absolute inspiration and is incredibly strong and resilient.

Joe, Frankie and I are beyond thankful for all of you. We wouldn't be able to get through any of this without all of your love, prayers and support. From the bottom of our hearts, THANK YOU!

I will keep everyone posted with anything new and most certainly after his follow up appointments.

Much love!

Emotion: A state of feeling.

If only we could turn emotions off. If only it were that easy. Where do I begin?

The two nights before Frankie's heart surgery, I cried and cried. Almost uncontrollably. Thinking about what was to be done to my sweet baby was absolutely gut wrenching. Made me want to vomit. Took my breath away. Made me wish it were me instead of him. I tried and tried to take things one day at a time but what was to happen on the 25th was inevitable and I couldn't ignore it, even if I tried.

Tuesday morning, day of surgery, the 25th: We woke Frankie up about 530am. Little buddy did not want to wake up! I can't say I blame him. But he is hard to wake when he isn't ready. Once he was awake, we bathed him with this special hospital soap they had given us. It was just a quick bath. We then packed everything up and headed out the door. Upon arriving in the parking garage, Frankie had fallen back to sleep and was a little peeved that the car stopped moving. Of course, as soon as he saw other people in the hospital he was his bright and smoky, flirty self. He was actually in a great mood! We checked him in to surgery and sat in his room while the docs floated in and out and prepared to take him to the OR. They gave him some versed so that he would be loopy when they took him from us. He played like a mad man in the pre-op room! Cruising all over! Eventually, the anesthesiologist asked for us to give hugs and kisses... This was extremely, extremely hard. Poor little guy didn't know what he was getting himself in to. I handed him off to her and he helped push his own be down the hallway, waving bye bye as tears streamed down my face. I walked out in to the waiting room and lost it, completely. My mom had just walked up and ran back to see him real quick. He was excited, as usual, to see her and gave her kisses. Once I collected myself, I went in to his waiting room to wait on the first call. They took Frankie back at 8am.

First call, 930am: The OR nurse called and said that he did well going to sleep. He didn't get upset until they out the gas mask on him and at that point, he got loopy. She also said they had just made the incision and all was going well thus far and he would call me back in 1.5 hours.

Second call, 1130am: Essentially, the repair was complete. They closed Frankie's asd with his pericardium. This is the sack that is around your hear that isn't needed. They took it off and used it to close the hole instead of using a man made gortex patch. Frankie's entire atrial wall was about 12mm. His hole was 8-10mm. Almost his entire atrial wall. They ended up leaving a small 3-4mm hole as a pop off valve for his extra blood to go. His body is used to having that and if they would've closed it completely, his lung pressures would be extremely high. Also when she called she said that he was coming off of bypass (heart and lung machine since they had to stop his heart). The next step was for the cardiology team to come down and take "pictures" of his heart and make sure that everything looked good and was doing what it was supposed to be doing. Then, they closed his chest back up.

1230pm: Dr. Boston (surgeon) came in to tell us that Frankie's repair was complete, all went well and that he was in recovery where they would extubate him and take him up to the CICU (cardiac intensive care unit). Once he was settled, we could see him.

1:30pm: We FINALLY got to see Frankie! It was, once again, emotional for me (I wonder how I would've taken this if I weren't pregnant?!). I washed my hands and quickly walked up to his bed. He opened his eyes, saw me and started to cry. Joe and I quickly comforted him and he was asleep again. When we arrived try had NO pain management schedule for Frankie. It was morphine "as needed". Are you flipping serious?! I quickly said this wasn't going to work. The kid just had his sternum opened up, heart stopped, repaired and started back up again and then wired back together! What the fuck?! Dr. Boston came in shortly afterward and was asking why he wasn't on numerous things and then they started things up. But at this point, he was already behind, thrashing and attempting to cry. He couldn't exactly get a cry out and ended up holding his breath so long he would turn blue. No shit, full one blue. It was terrifying. Needless to say, we ended up playing catch up for HOURS.

What's he hooked up to?
Frankie has an art line in his wrist that measures his blood pressure constantly. At first it was elevated as his body had to adjust to the new blood flow. They put him on meds to lower it. Currently, it's great. He has an IV in each arm, just in case. He has a central line in his neck that they can draw blood from (no sticking!) and it gets meds into his system faster if necessary. He also has a small chest tube that is draining fluid away from his chest cavity. The output of that has been good. He's on a mild sedative drip, morphine occasionally now (it was hourly) and toradol for pain. They couldn't give this at first because its similar to ibuprofen and would mess with clotting and increase bleeding from his chest tube. He had a catheter for a bit but no longer does. And he's on his usual oxygen. As each day progresses, we will get rid of some of this junk! Hopefully SOON! He isn't digging it!

7pm: The wonderful nurse Tammy comes on for the evening! We are so thankful for her! She got things under control and was extremely sweet to our little Frankie. We would keep her forever if we could!

Joe and I slept in 2-3 hour shifts on the fold out chair in the room. We knew the first night would be tough and that Buddha would need us to be on top of things for him. So, we both stayed (one of us is always here, we both just cant sleep in here. There's no room. One of us, usually Joe, has to sleep in the parent lounge.... Bleh) and comforted him as much as possible.

As of now, he is resting well. He isn't moaning, groaning or crying out. Thank God. We are going to put his ng tube (feeding tube) back in and start him on pedialyte. Why they didn't put it back in when he was still asleep after surgery is beyond me. This is just going to piss him off. Hopefully not too bad. But, he needs to eat. It's been 32 hours since he's had anything to eat. Which could cause some of his discomfort, I'm sure.

I'd like to thank you all from the bottom of our hearts for all of the love, prayers and support. It has been far beyond all that we ever expected. We are truly, truly blessed to have such amazing support in our lives! Our support group is larger than I can ever imagine! THANK YOU!

Here's a couple pictures:

Let me remind you....

Hey everyone!

Since Frankie's heart surgery is just around the corner (Sept. 25th), I wanted to just send out a couple reminders about Mr. Frank and how important it is to keep him healthy.

Frankie has a lung disease, PPHN. When he gets sick, it is ten fold for him what it is for the "typical" child. That being said... It is EXTREMELY important to remember to wash your hands around Frankie. And, if you have been exposed to someone who is sick or you aren't sure if you're fighting allergies or a cold, it's best to steer clear until you are all better!

Second thing.... smoking.
Second and third hand smoke: People smoke, I get that. Here's my thing... if you do it and your clothes reek in smell of it, please do not hold my child. It affects him and my biggest concern is the affect on his respiratory system.
Third-hand smoke can remain indoors even long after the smoking has stopped. Similar to low-level lead exposure, low levels of tobacco particulates have been associated with a higher prevalence of ear infections and respiratory symptoms, as well as cognitive deficits among children.

In short, the same chemicals that leave a stale cigarette odor on clothes and upholstery also can be swallowed, inhaled or absorbed through the skin of non-smokers. Smoke residue may linger for hours, days or months, depending on the ventilation and the level of contamination.

If you want to smoke, wear a jacket while smoking outside so that you can take if off before playing Frankie and please be sure to wash your hands. THANK YOU!

We appreciate this more than anyone will ever know! Frankie just doesn't have the strongest of lungs. Someday he should! But until then, we need to take all necessary precautions to keep him as healthy as possible. Thanks for understanding and much love! 

"O" Thank Heavens!

Today I took Frankie to see Dr. Keller (pediatric surgery) about his O. It was so nice to zip in and out of the doctor with nothing but good news! We've just been dealing with so much because of his heart and lungs recently that I was afraid there would be just one more thing to add to the list. His O looks great! There's a lot of good skin growing up and around it. We no longer need to use silvadine unless a spot becomes raw from him scratching at it (when we unwrap it, he scratches like crazy from the gauze itching him!). Here's what the doc said:
-Once Frankie is 100% healed from his heart surgery, they will bring him in and consider his first repair surgery.
-Frankie has to have the "okay" from cardiology before any repair work can be done. Once his heart is fixed, that's out of the equation but his lungs will need to be very, very strong. When they start to put things back in, it will feel like he's had three Thanksgiving dinners and it will make him breath harder at first, until he's used to it.
-When will this be? Not until he's AT LEAST 2. We must remember, we are on Frankie time. And he needs a good amount of time to recover from his heart surgery.
-After Frankie's heart surgery, he should be able to grow much better since his heart wont be working over time. Frankie still needs to be larger to put things back in. He's still a little guy.
-It will take most likely 2 surgeries for him to be closed up. Definitely not just 1.
-Most likely have to use a "patch" to help close up his abdominal muscles.

All of this is good news. Let's get Frankie through this heart surgery, give him time to GROW LIKE A WEED! And then we can start working on his tummy! Which is knows now and will pat it when asked and it's extremely cute. That's it for now! Love you all! Here's a picture of him doing his usual.... Hamming it up!