Day 9- Getting to Comfortable

Sorry I was unable to post the update last night the hospitals wireless was down.

The everyday, everyone has certain things or activities in their daily life that just become so normal and even routine you don't even give it a second thought. Some things are no big deal like brushing our teeth, doing the laundry, cooking dinner. However we forget some everyday things we do can pose major risks due to us becoming so desensitized by doing it everyday. Like driving to work everyday, your chances of being killed or seriously injured in a car accident are ridiculously high but how many of us seriously think about that risk every time we get in a car.....? You don't, you don't think about it until it happens to you or someone you love. Then you can't forget the reality of it anytime soon.

I was very quickly knock back down to our reality today with three little words "Open Heart Surgery". Riley has had over 15 broviac placements over the last year, she has also gone under anesthesia or sedation at least twice that many times. My daughter going to surgery, as sad as this sounds, is just an everyday thing.... We truly forget the risks and just always think everything will be fine because it always is. I woke up just like everyday with the doctor in the room trying to talk to my half asleep self. We talk about this and that and how we will be back quickly and then get everything wrapped up to go home the next morning. After he left, I ran downstairs as fast as possible to quickly get the coffee I desperately needed before they came to take her to pre-op. As I came back through the doors they tell me they called for her. I quickly change her clothes and we were off. So much for my shower... :( Downstairs it's business as usual everyone ohhs and ahhhs over Riley and says how big she's getting. Surgeons are running behind as usual so we had a last minute switch and one of the other surgeons was going to do it. Whatever....they all know her. I give her a big kiss and off they take her to the OR around 10am, finally... I head off to the waiting room and make myself comfy and get on my laptop. It had been about 30 or 45min and I knew it was a little longer than usual but nothing much, didn't think much of it and was just expecting the surgeon to come out any time. Next thing you know the doors open and I see him motion to me to come with him, rather than him coming over to me like they normally do and tell you how it went. So, I quickly grabbed my stuff and walked though the doors not thinking much of it. He then begins to tell me he was able to get it in the left but kept bumping into the stent. At that point he tried to get in the right and was able to get the guide wire in but once he threaded in the catheter it pushed the stent into her heart. That's when it started to feel like a dream, this couldn't be happening.... He then proceeds to tell me she's still in OR and completely under, he called the IR(Interventional Radiology) Cardiologist but he was in his office seeing patients, he was coming over as quickly as possible, he was going to try to "fish it out" going in doing angioplasty again, if he couldn't which he really didn't know if he would be able to, that meant she would have to be opened up and we would have to place her on bypass while they went into her heart to get it.... This is at which point I went numb, this could not really be happening, this was just a broviac placement.... and now my baby, who had a no cariac issues a few weeks ago, was going to have her chest opened and her heart cut into! Not to mention this stent is metal it could easily nick her heart or an artery when bouncing around and she would quickly bleed out. It felt like someone had just slapped me into reality. This Dr. mind you has always been my least favorite because while he is actually a quite competent surgeon he has NO bedside manner and he's just a complete butt head most of the time. He was almost in tears while telling me this, he felt horrible. After all this was RILEY. I was the one telling him it's ok, it was a complication and it is a risk we knew was there and it was nothing that was done wrong. We can't always be lucky. He said he would let me know when David (Cardio IR) showed up. I was in utter shock when I walked back out. I could barely manage to get my thoughts organized enough to tell the receptionist I would be right back since I needed to find her dad. I think it was the shear fact of everything catching me so off guard. This might be one of the worst times I have been through. Mind you Riley had had much worse happen many times over but NOTHING has ever blindsided me like that.

Yes, this was our morning and it was crazy. David ended up showing up and coming to tell me that once he looked at it under floroscopy real quick it had moved into the pulmonary system already. He was hoping to take her to cath lab and maneuver it into the pulmonary artery. It would be able to sit and stay there for awhile without doing any harm. Problem was with stents in a child this small as they grow the stents will need to be re-sized. Our hope was at least in the pulmonary artery we can forget about it for a year or two. The other issue was some one was in the middle of a procedure in the cath lab already. It would be at least an hour before they were done and the room was ready. So, she had to be kept in the OR under general and on the vent until they could move her over. David finally came to find me around 2:45pm to tell me the stent was safely sitting in the Left PA and this was probably the best outcome we could have hope for. We are hoping the stent being in the SVC for a few days was able to stretch it enough that for now she will be ok along with starting the blood thinners.It will have to be for now anyway since we are kind of back at square one and can't replace the stent in her SVC while her Broviac is in....

She made it to PACU by about 3pm. So she was kept under anesthesia for over 5hrs. Then we had the lovely task of keeping her laying flat for 6hrs this time! Yes, all that fun I was hoping to NEVER repeat again after Friday. We made it back to our room about 12hrs after we had left. But yet so much more thankful to be "home" than normal! Speaking of home they are still planning on letting us take her to our real home today!!! They still have to pull the femoral line since it was forgotten about with all the chaos yesterday. You know it's crazy, this has been a very eventful stay even for us and even with everything that happened yesterday, today still just feels like every other normal day in our lives. This is now our world, OUR norm, we face life threatening issues everyday and someone walking by us in the grocery store would never have a clue what are life is REALLY like. Just be mindful the next time some one cuts you off in traffic or gives you an attitude at the grocery store for no reason. You never know what someones life is really like and what they are dealing with everyday just by looking at them.Just another day..... but ever so grateful to have another day!