We were having the surgery done at Joe Dimaggio. This place is an awesome hospital, and looks so cool. It is just bright and colorful, and it is just made for kids. We had to be there at 630 am to check in. It's not bad enough he is having surgery, but you have to wake us up at 3 am? We drop off Brady the night before at like 10p, at Craig's parents. First small breakdown occurs. I am already nervous about the surgery, and now I am spending the first night without Brady since he has come home from the NICU. Deep Breaths. I set my alarm to 430am, that was we have 1 hour to get us all ready, and we can leave by 530am to allow us enough time to drive there. Craig feeds Patrick at 130 am, so he doesn't wake up in between, since he can't eat formula after 2 am. Here is where the day started to go downhill... My phone alarm goes off at 430. I grab it so it doesn't wake him, and roll over. So we are clear..I am not a snooze alarm person. I have never hit the button, nor even know where it is. I always get up within ten minutes of my alarm going off. That being said I was exhausted because I had been working a lot this week, and on my days off Craig worked, so I was on baby duty. That being said, the next thing I knew, Craig was whispering to me that it was 530am. WHAT! Holy crap! Apparently I had slipped into a coma as soon as I rolled over. Okay, so now I am up running around like a chicken with it's head cut off. Wait, as I write this, I think to myself, that saying doesn't even make any sense. If something has no head, it's not running around, so why do we say that. How about, I was running around being chased by an axe wielding farmer? That makes more sense right? Okay, so, it's 530 am, the time we should be in the car leaving, and I am running around like a chicken being chased by an axe wielding farmer...on bath salts. Okay that just stepped it up a level, but now you know this is for real. I don't have time to shower, so I get dressed and make myself somewhat presentable, and attempt to make myself smell clean. Where is Craig? I don't hear movement yet. He's still in bed. I yell to him to get up! Okay. I asked him if he packed his overnight bag? He says no. I remaining calm, but slightly want to punch him in the throat. Hurry up! Okay, so we get our stuff together and grab Patrick. Patrick is like WTF? Craig said "Now you know how it feels to be on the other end of being woken up in the middle of the night." Touche. We jump in the car, still asleep and head down to the hospital. What's that? My phone won't load for the maps to the hospital. Ugh! Okay it finally loads and we get to the hospital at 6:25am.
We casually stroll in like nothing is wrong. We go to registration, where Patrick is quietly hanging out, with a smile now and then. Mommy guilt sets in.
He did really well for his exam.
About 15 minutes after that though, he realized he was up, and was hungry. No good. He then cried on and off for about an hour. Finally his nurse came back and asked if she could hold him. She said sometimes they associate food with mommy and daddy, so someone new might help. She walked around with him for a few minutes and it seemed to help. She then traded him to the other nurse who helps and she rocked and walked him. It worked. He fell asleep until about 830 when they came to take him downstairs to the cath lab. Three nurses come up to take us downstairs to the "Cath lab" We get in all white "hazmat looking suits" and a surgery cap. I felt like it was 28 days , or a contagion scene. You know what I am talking about. We carry him in and place him on a super long bed that moves. They tell us that they are going to gas him down, and then place a cath. I told them that was good, because he beats up nurses. They put the gas mask on his face, and he struggles. Vomit in my stomach. Deep breaths. It's not as bad as I thought, but it sucks. We kiss him, tell him good luck, we love him, and head out. I...hate...this. we go upstairs, make sure they have our phone number, and take the chance to eat. After a cold breakfast from the cafeteria, we head back upstairs. They take us to a family room with a big tv, a comfy couch and a giant playroom for the kids on that floor. The nurse gives us blankets right out of the dryer because they said the room gets cold. Good thinking, because it did. We sit down, snuggle up, and watch "Let's make a deal." It's hits about 945. His nurse comes in with an update." He is doing well, but...." Ugh... here it is. "They are having trouble placing a cath. Sometimes it can be because he was a preemie and everything is so small, or because he had a lot of catheters and he has scar tissue." Wait, isn't a catheter how they are getting this occluder in? she didn't seem concerned so I didn't freak out. After all, this is Patrick, he is known for this type of baloney. We snuggle back up, and watch "The price is right." Its now an hour later. The procedure takes two hours, it's now been two and a half. Next thing we know lunch comes in. I guess on Wednesdays they feed the families with outside catering. Sweeet. Not hungry though. Craig decided to go check up. He comes back and said they just called. Sweet. The doctor comes up to talk to us. He said the procedure went fine. They couldn't place a cath that, I guess makes the procedure faster, and smoother by letting them test to make sure the occluder is in place. He said the occluder was placed, but it took them a little longer to make sure it was placed right, and doing it's job, because the other cath couldn't go in. He said he tried, and the other surgeon tried. The other surgeon, per Craig, is like the head chief of the peds cardiology and is a big deal. Not big enough for Patrick. He said there was also a small opening in between two arteries, that may still close on it's own, and should not get any worse. We will just keep an eye on it here and there. It shouldn't cause any problems. We head back to the family room, eat two bites, and then the nurse comes and gets us to go see little man. We grab our stuff, head down to the other building, and go the PACU.
He looks so sad.
I start to tear up right away. Partly because I hate that this shit keeps happening to him, and because he made it through surgery, and I just want to hold him forever. The nurse says hi then starts us off with this... "He is doing well, but...." WTF Patrick!!!??? "He has been dsating since he came out of surgery." Oh is that it? hahaha We say yeahhhh, he does that, that's kind of his "thing." We text their NICU nurses and tell them what is happening, and we all had a good chuckle. One said "What else is new?" The other "Knock it off Patrick!" His day nurse laughed and said "Well, at least he is consistent!" She said it happened after he ate, and we told her that is what always happens, plus he has bad reflux, he hasn't had his zantac since 1 am, so he is probably hurting. She also says because of the surgery, he is required to stay laying flat on his back for 4 hours so they can make sure everything clots. Well that definitely isn't helping the reflux, and I'm sure that not burping him after he eats is making it worse. Plus..I can't hold him for 4 hours! More sadness. The anesthesiologist comes over and says his and explains the deal. We then tell him his history of dsating and go over everything. He said that because he is doing it, he might have to stay for 24 hours, instead of the 6 that was planned. They are worried because he was a preemie, that he might have sleep apnea. We say that is fine, we knew this would happen, we packed bags. We then stayed in the room for the next 6 hours. In the meantime, they did an ultrasound on his heart while he was laying there, and she said that the flow looks really good, and everything looks great. She even showed us the occluder. She said it looks great. Awesome!
They were planning to move him to a PICU room when a bed was available. Over those few hours he wasn't dsating as much, and he was eating. At some point with the anesthesiologist, the conversation about him going home from the NICU came up, and we told him that we had oxygen, an spo2 monitor, and an apnea montitor at home. He stops and considers letting us go home. He talks it over with someone else. A hour or so later, he talks about monitors again, and cpr comes up. Well, what do you know, Craig is certified in all kinds of CPR! He says "What?! Well, then I feel even better about you guys going home!" Really!? Good and bad, I am so happy, yet terrified. This is a familiar feeling indeed. It is now 530ish. We have been up since 530am. We are overally tired, hungry, and now Craig's headache is starting to set in. The nurse comes over and says we are going to discharge you at 615, you can leave at 630. Yes! We get him dressed, and we start packing up our things. They pull out his catheter, and show us his incisions.
We get our discharge instructions, and we head out. We get home and take him out of his car seat. Why is he so hot? He has a fever of 100.6. Okay, not nervous, it was probably from the car ride, he tends to get hot in the car. Give him some Tylenol. Hook him up to stupid monitor. Beep beep beep! Oh how I missed that sound. No, I didn't, I hate it, which is why when he started crying, it started beeping, I was trying not to fall asleep standing up, I had a slight emotional breakdown. I may be used to the monitors, but I not comfortable with baby cpr emergencies. For Craig, cpr is another day at work. I told his to sower, fix his headache, and get the hell down here, to help me.he calmed down, and went to sleep. I went to go get Brady, and was so excited to see my big man. When I got home, they were both asleep, and Brady stayed asleep. I finally went to bed at 12am. What a long fricken day!!! This morning we had no fevers, and he didn't seem painful. He had lots of smiles, and was trying to dance and jump like usual. He has no idea what just happened. Thank god it's over!!!
Thank you to all of my family and friends who gave us encouraging and supportive thoughts and words through out the day. We could not get through this without you. you all have been with us from the beginning, and you have no idea how much that means to us.One day when the boys grow up, I will show them all the support that they had, and show them how many people cared for them. They are the luckiest boys to have all of you. Thank you all from the bottom of our hearts!
I will keep you all updated on his recovery. We have a recheck in a week. I will update you then!
Big love to all of you!!
The Connor family
