Home again...home again...

Wednesday started very early for us. We woke up at 5am. I let Molly sleep until 5:45am. Luckily she woke up in a great mood. We left for the hospital at 6:30 and stopped at Dunkin Donuts and we were on our way. We had to be there by 9am and we knew would hit traffic which we did. We arrived around 8:30. We checked in to the pre op clinic and they said they would call us back in about 10 minutes to check her vitals, give her her ID bracelet and allergy bracelet. About an hour later we still hadn't been called back so I went to the desk to find out what was taking so long and they had a few emergency cases that had to go first. Now it's almost 10a and they still hadn't called us back and she was going to the OR at 10:30. Finally a child life specialist asked if we had been seen yet and we said no so she went to find a nurse and she said the OR was ready for Molly so they were going to rush us back. She started crying the second we went into the room. We went through her medical history (which isn't a quick conversation), checked her vitals and we were on our way. They walked us down to the pre op area where Molly changed into her scrub pants and johnny and I suited up to take her back to the OR. We met with the surgeon, anesthesia, signed the surgical concent, went over what they were going to do and we were ready to go. We were also told that her medical chart is longer than War & Peace and weighs more than Molly does. I walked Molly back to the OR. I was so nervous this time because every other time she had a procedure done she was either already intubated or had her trach. This time they had to intubate her once she was asleep. I knew medically there was no reason she wouldn't be able to extubate but I just had flashbacks. So we were in the OR, I sat her on my lap, they put the mask over her face and she started screaming, kicking, pushing their hands away from her, it broke my heart. She finally fell asleep, they took her away from me, I kissed her on the cheek and left her in the hands of all of these strangers. I teared up as I walked through the hallways to meet back up with Jay but I refused to cry. Why should I? She had been through so much worse and she was going to be just fine.

They walked us down to the surgical waiting room where we met up with the nurse liason. She told us the surgeon would be out in about 45 minutes. So we waited and waited. After an hour I started to get nervous. We were originally told it would be about an hour and a half but she said 45 minutes so after an hour I checked in to find out what was going on. She called the OR and the surgeon was still working on the trach site then he was going to do the bronch. He said it should be about a half hour. Well, 30 minutes passed, then 60 and now I'm really freaking out. It's not like me to pace or to be a pain but I hunted the liason down again. She was going to call back. I went back to my seat and waited and a doctor comes out, not our surgeon. She was from audiology. They were doing a hearing test on Molly because she had never had a newborn hearing test. We were more concerned about her heart than her ears. The pediatrician had some concerns about her hearing because Molly isn't talking yet, plus she's been on a ton of meds and that can effect her hearing. I explained to the pediatrician that there is nothing wrong with her hearing and she doesn't speak yet because she was decannulated in August. Again, she doesn't have any experience with kids like Molly so she doesn't understand. Anyway, she has perfect hearing in both of her ears so we can stop worrying about that. We were so excited to hear this news! Not many things with Molly have gone the way they were supposed to the first time. As excited as we were we still hadn't spoke to the surgeon. He was supposed to come out before Audiology. Apparently he was taking his time. He finally came out and said her airway looked "OK", her site is closed, he cleaned her ears out for the hearing test and she did well. Of course we hang on to every word. We didn't like the he said her airway looked "OK". To us that sounds like there could be something wrong. We heard that word too many times in the CICU to know that it doesn't mean great. Turns out this surgeon is just a dink and there is nothing wrong with her airway. So we can officially scratch ORL off of our list of clinic visits. He said that Molly was in recovery which confused us because we were told she was going to the Cardiac ICU. Well, she ended up going to the floor instead which didn't make us very happy. We like the CICU. That's what we are comfortable with. There are too many sicknesses on the floor. But we went. It was only one night after all.

So we met Molly in recovery. She was very heavily sedated. She got a TON of sedation. The problem with Molly is that they want to see an immediate response when they give her a drug and she doesn't respond immediately. They gave some sedation..nothing, gave her more sedation...nothing, gave her more sedation and it all hit her at once. Well, what happens when you give a baby all of tha sedation and it hits them? Their blood pressure drops. She usually sits in the 90s and her blood pressure dropped into the 50s so they had to give her Dopamine to bring it back up. They also had a little trouble with her airway. She was bronchospastic which is when the airway narrows. They said the reason for this was because she had a lot of secretions. They gave her something to open her airway back up. So when you wonder why we get nervous about a simple procedure these are reasons why. There's no such thing as a simple procedure with Molly.

When we were finally able to see her she was so out of it. Her eyes were open but she was really groggy. She was so thirsty. I've never seen her drink so much. She was on oxygen and every time we tried to take it away her sats would drop. She usually sats 97-100 and when we took the O2 away she would drop to 93. It took her a few hours to no longer need the O2. Once she was awake she didn't require any pain meds or Tylenol. She is a trooper. We got to see some of our old friends. Some of the nurses that used to take care of her, her cardiac surgeon and a few other people. It's great to hear what they think because we see her all of the time. One of the cardiac fellows stopped in and was amazed at how well she looks. He said that they don't often see a baby that was there for as long as Molly and turns out to be a "normal" baby. Her cardiac surgeon said that she is their prize possession. It's just so great to hear. We know that she's special but we just assume that there are a lot of success stories like her. Sadly I guess there isn't. We were discharged on Thursday and she came home and took a nap but she isn't in any pain. She's still not back to herself but she's getting there. We just love this little girl more than anything and we love Children's Hospital almost as much!

Thank you again to every one who wished us luck, kept us in your thoughts and prayers, checked in on her throughout the day, sent us text messages, emails and Facebook messages. We truly love you and love how much you love Molly.

Happy Easter!
Kerry