The Rest of the Story....

Well, I was trying to write what all happened during our hospital stay, but the words aren't flowing, so I think I'll go timeline style. First off: WE MADE IT THROUGH OUR FIRST SURGERY!!!!

Wednesday
3:00-3:30am fed Susannah
6:00am got to the hospital
7:40am passed her off to the PA. Susannah was very happy and friendly with everyone that talked to her. She didn't cry when we handed her to the PA, which I was glad of, but kind of sad because she had no idea what was coming.
9:30am update that they were just beginning the surgery. Apparently it took quite a while to start lines. We counted at least 28 sticks where they had tried to start iv's. She had a central line in her neck, an arterial line in her wrist, and a regular IV in her foot.
11-11:30am we called and they were closing her up, so we waited for the surgeon to finish and come talk to us.
12:30pm the surgeon came and told us everything went great! They did a TEE (transesophageal echocardiogram) during surgery while they put on the PA band. When the surgeon put the band on, he said they saw her septum move because of the increased pressure. He thought it was too good to be true, so he took it off and put it on again and it did the same thing. He thinks he got it on there perfectly. Tight enough to help and make a difference, but loose enough to allow for growth and further tightening. He also closed off the PDA.
1:00pm the surgeon took us back to the PICU to see Susannah and left us with the team there. The respiratory therapist suctioned her a few time and we waited for her to wake up enough so that they could extubate her. She had a breathing tube, central line, arterial line, IV line, Foley catheter, temporary pacing wire, O2 sensor on her forehead, one on her back, EKG lines, and a pulse ox. on her toe.
2:00pm Around 2 they took out the breathing tube and she did fine with that. She was still pretty out of it due to sedation and pain medicine. She "groaned" all evening and never seemed like she was sleeping peacefully. Her nurse was wonderful and was very careful with what medicine she gave her. Every time she gave her something she watched Susannah's respirations very carefully to make sure they didn't drop any. She tried a few different things trying to help her stay calm and rest. They let her eat some that night and she actually did really well with it. The nurse also let me hold her a few times. It felt so good to have her in my arms!
7:00pm was shift change and the night nurse kind of concerned me because as soon as she came on she was trying to get the doctor to ok some different medicines to give her to help control her pain. Susannah was still somewhat sedated and on several different pain medicine, so while she didn't seem peaceful, I don't know that she was uncomfortable (if that makes sense).
They also had a temporary pacing wire in that came out through her belly with an external pacemaker at the end of her bed in case they needed it.

Thursday:
3a.m. Anyways, the nurse ended up giving her Ativan at some point and at around 3a.m. her respirations started dropping and they had to bag her and give her a little Narcan to reverse some of the pain meds. Thankfully those things worked and they didn't have to intubate again. However, they took her blood gases and she was a little acidotic. Her hematocrit was also low, so they gave her some blood. They gave her one syringe pretty quick and then the second one they let go in slowly (They're big syringes that go into a IV pump). After all of that she didn't groan any more and it seemed like she was sleeping peacefully.
Susannah was still pretty out of it for most of the day. She ate well in the morning, but later in the day she quit eating. She had two blisters on the bottom of her tongue that I think were rubbing on her two bottom teeth while she tried to suck. Her belly was fat and she was swollen all over, I guess just from the fluids and such. They were giving her Lasix to help the fluids move out, but it seemed to go slowly.
They stopped all sedation Thursday evening, so it was a rough night keeping her calm and peaceful.
Mom and Dad came up to see her Thursday evening while Melissa watched the kids.

Friday:
It was a rough night with Susannah being awake a lot. She wouldn't eat well. I finally had one of the nurses look in her mouth and she had a buildup of white stuff on the back of her tongue, so they started treating her for thrush. She would just chew on her bottle, she wouldn't swallow or suck. I think her mouth and throat were just too sore. :( She had a better day today and even played with a couple toys. They removed all the extra lines and such. Her IV in her foot and become unusable due to her rubbing her feet against each other. All she had left was the Central line in her neck and then the heart monitors and Oxygen sensor. It was much easier to hold her with fewer lines. It didn't seem to bother her with us picking her up or moving her around. She was so sweet to hold. She just laid their so still and calm. Usually she's wiggling and trying to see everything. :) Mom and Dad brought the kids up to see us today. They weren't allowed in the PICU because it's flu season and we didn't get the flu shot, but Leigh and I got to go to a family room and visit with them for a little while. It was good to see them!

Saturday:
After a few doses of the Nystatin, and the blisters on the bottom of Susannah's tongue going away, she did a little better eating today. By Saturday, however, she was so mad with getting medicine stuck in her mouth, it was a fight to get her to take her bottle. If anything liquid touched her mouth she clamped her jaw together and squished her little lips shut and refused to open her mouth. She's a little bit stubborn when she wants to be. She started smiling at us today and had a fairly normal day. She played a little bit and started reaching over to one side. They brought a mobile for her to look at and she was so excited about it, smiling and reaching for it as it moved! It was so cute! She had a bit of tachypnea with stomach breathing that the doctor noticed and we talked about. She has "episodes" of that at home, so to me it was "normal." They ordered a chest x-ray for Sunday to make sure it wasn't due to fluid in her lungs or anything like that.

Sunday:
The chest x-ray was clear, so we were allowed to go home. Yay!! She slept really well through the night Sat. night. She only woke up for her medicines to be given. It took the nurse a little while to get everything together. Her other patient was very needy (it was a teeny baby next door). So we didn't get home until about 5:30pm. We had to stop at the pharmacy to get all the meds we needed. She went home on Lasix and Enalapril (she's been on both of these for several months) and then they added Nystatin for the thrush, and Motrin round the clock for pain and inflammation.

Then until now:
Susannah is doing well. She's still not back to 100 percent but she moves a little bit more every day. Her 1 week after surgery cardiologist appointment was this past Wednesday. It went well. He was thrilled with her weight gain. She gained 13 ounces in a week in a half. We go back in two weeks for a weight check, so hopefully it's not a fluke! She's eating just a little bit more than she had been before her surgery. She hadn't gained anything in about 6 weeks. He said there's no leakage from the PDA ligation, so that's good. There's still a little bit of a pericardial effusion that should go away. There was a little bit there on the Sat. before we were discharged which was the last ECHO they did in the hospital. They sent us home with an increased dosage of Lasix to help it go away, but I don't guess it changed. He sounded like it should go away soon and didn't seem worried about it. The tricuspid valve is still leaking a moderate amount. He's hoping maybe it will get a little better over time with the banding helping to keep that ventricle smaller. Overall he seemed pleased with how everything looked.

Her first two days in the hospital were two of the longest days of my life I think. I didn't know how in the world I would ever be able to do this again. But by the time we left, it was as if it wasn't so bad. The unknown is hard to think about, and I thought the roller coaster emotions were over, but whew! I felt rolled right over! I don't know how people go through things like this without God. If I didn't believe 100 percent that God knows what's best and is in control I think I would just quit! I am so thankful that God knows what the future holds and I'll do my best to not worry about what may or may not happen. I am so thankful for what He has already done for us and in our lives and pray others can see Him through us. While I do have days that I cry for what she will have to go through (it's scary), I have an overwhelming sense of peace and  gratitude to God for giving her to us. She is a precious little girl and I feel so blessed that we were chosen to be her parents. I hope we're up to the challenge! :)