Wednesday, September 26, 2012

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:

Saturday, September 8, 2012

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!