Posted Oct 10, 2007 8:53pm
We got here on Sunday night at the Ronald McDonald House. Jenna did not care much for the crib, so she slept with Daddy and I. She had an upset stomach also, so it was not a fun two nights before surgery. Anyway, we did testing on Monday and bloodwork, and everything went well. Jenna enjoyed playing with the stethoscopes everyone was wearing.
On Tuesday we arrived at Same Day surgery at 6am to say goodbye to family before going back. We went back and began asking last minute questions to the nurses and doctors, we met with anesthesia also. They felt like it may be best to give Jenna some medication to relax before going in to the operating room. So she relaxed quite well after that. We had everyone come back to see her and had my dad say a prayer. This was very emotional, but we made it through. Everyone left, and Justin and I walked her to the operating room. No one can prepare you for what you feel when you hand your child over to a stranger before surgery. My heart just broke when I saw the look in her eyes. Daddy was very sad also. It was about 7:30am when she went back.
At about 9am we received a call from OR nurse stating that she was placed under anesthesia fine, she fell asleep immediately when placed on the table. She said that the first incision was being made at this time. We then received an update around 10am from the nurse practitioner Brandy. She said that she was doing well and the surgeon Dr. Eghtesady was dissecting her collaterals at this time. He did in fact find a pulmonary artery which he thought was non existent. This was great news, but it was still possible that it may not be functional. We heard from her again around 11:30 stating that he was still working on the collterals and everything was fine she was stable. Another update came around 12:30 stating that she had been on the heart lung bypass machine for about 30 minutes and was tolerating it very well. He was now able to begin connecting the collterals together. Around ten til 2pm she came out and said that he was still working together to connect the arteries and he soon would be placing the conduit in the heart for her pulmonary artery. The one found was not functional enough for the job so he had to place the conduit in after all. Around 3:30 she came out again and stating that were warming her up to get her off of the bypass machine and she was doing well. She said that they would be closing her within 45minutes to an hour and would be out with the surgeon at that time. At 4:30pm we received a call to go into the conference room to meet with the surgeon. At that time, he said everything went well and he was very pleased. He said that they combined the three good collaterals which she had along with the artery which was found for the blood flow which goes to her lungs. At that time, he stated that each collateral supplies a certain amount of blood to each lung, her right side is sufficient, but her left has a lower amount and not as much going to it. He said that there was not much he could do about this because this was her "makeup from God" and time will tell how she does. It is possible later on that she will shows signs of fatigue when active. It could also close off and cause the lung to not be functional. This news was a little upsetting, but we managed to be fine. Also, he said that she came off of the machine fine and would be going to ICU soon. We would be able to see her in about 1 hour.
He said that he did manipulate an artery around her voicebox (this was the location it was at and he needed to re-arrange it to the proper location), so she may be a little raspy in her voice for some time. He said that only time will tell with how she will react to the surgery and she will need additional surgery and angiograms down the road in to keep those arteries open. Her blood flow to each lung was still the same. Her arteries are very small in size (1-2mm) so it was very difficult to place them together. He expects her to be on CICU for at least 5-7 days and then she will transition to stepdown and be there for 2 days for everyone day in CICU. So we could be here for up to three weeks. Unfortunately. He did not close her hole in the lower ventricles at this time
When we arrived upstairs, she had developed a partial left collapsed lung, but was recovering. Her levels all looked good. She was currently on many medications such as Fentanyl for pain, Dopamine for her heart rhythm, another to keep her heart relaxed, another to keep her lungs flexible, and many others. She is on about five or six drips at this time. She a rough first night, but it doing well. Her oxygen levels are stable and increased from before, she is now on about 50% oxygen, down from 100% at first. She is still on the ventilator in her nose for her breathing, has two chest tubes (the right side is still draining a significant amount), a central line in her collar bone, an A line in her right wrist, two other ivs in her right hand and left foot, pacer wires in her chest, a foley catheter for urine output,and a tube in her nose for drainage. Tonight she will be taken off the machine to keep her lungs flexible, which she is able to tolerate now and does not need. Once done, they will begin weaning her off of the ventilator, hopefully she will be off of it by tomorrow night. They are also beginning her on TPN for nutrition through an IV for tonight and will begin her on a feeding tube tomorrow if she tolerates it. So at this point she is doing well. Last night she began to wake up, so they are keeping her sedated well and have restrained her hands so that she will not pull anything out. Hopefully they will be successful. Once she is off of the vent the next step is to get her off of medications, then to feeding by mouth. Hopefully we will not have to go home on a tube again.
So she is doing well at this time. Unfortunately Justin will be leaving tomorrow to return to work. So everything be thinking about him and also for me as I endure this process here at the hospital. We thank everyone for thinking of our baby girl and keep praying for her. It is helping a lot. Thank you again and I will keep everyone posted.
Love, Jenny, Justin and Jenna