The Big Surgery

Yesterday Emma had the big surgery to get the 3D splints put in to hold her airway open. Michael and I got to her room in the PICU at 6am for more prayers and kisses while she was still sleeping. All of the surgeons and anesthesiologists started coming in around 7 and she was wheeled out of her room at 7:45. We were told that she should be back in her room around 2pm, so we hung out in the Family Lounge and watched movies for several hours. Every hour or so a nurse would either call us or update us face to face on how things were going. 

Last week one of the cardio thoracic surgeons explained how the surgery would go and we signed consent forms for the splints and the procedure. He told us that the cardio thoracic surgeons are the ones who would perform the operation because they were working so close to the heart. Dr. Green would be helping from the head of the OR table (we were told it's like how they show it on Grey's Anatomy) and would tell the surgeons what do to and where to place the splints. Having the surgery explained to us step by step helped Michael feel more relieved and at ease about everything, while it made me nervous. I began picturing a huge DeWalt power saw being pushed through our baby's chest with sparks and bone shards flying everywhere. Obviously that's not at all how it happened, and I was assured that the medical saw is very small, but my brain likes to blow things out of proportion and cause unnecessary worries. So I cried the morning of the surgery and a little bit the night before. The surgeon told us about how she might have to be put on bypass, where they use a machine to pump blood in and out so they are able to control her heart and lungs if she started to have problems during the surgery. That thought scared me too. One thing I thought was interesting is how many 3D splints they make for each patient. He used great analogies and explained that if Emma has a spot in the airway that has a collapse and needs a splint that measures 20mm long on the CT scan, they will make eight splints for that one spot between the length of 17mm and 23mm. That way if they measure during surgery and see that her spot actually needs a splint that is 18mm or 21mm long they already have it right there! 

Everyone at this hospital is super great about communication. Someone is coming in every few hours, usually from different departments and specialties, giving us an update or just seeing how we're doing and asking if we have any questions. The day before the surgery (Tuesday) we knew Dr. Green would come in to talk to us again, so we made a list of ten questions and he gladly answered all of them for us. The first thing he mentioned while shaking our hands is that the splints couldn't be sent back in time because of the weather (they get sterilized for a week in Utah).. but then quickly added that he found out that Fedex makes emergency medical shipments, so they had the splints! Oh, phew!! We confirmed again that Emma was the 16th patient to get the splints. Before her were 14 children and one adult. He had no concerns about any of Emma's pre-existing conditions getting in the way of doing the surgery. He said they would keep her on the same vent settings for a few days or so after the surgery to let her body get used to the splints before weaning her down. This means her PEEP (positive end-expiratory pressure) level on the ventilator will remain at 18. We were told by several people that the first few days post-op are the most "dicey", but usually once it's been two weeks after we will be "in the clear" and everything should be fine after that. I expected that she would be puffy again from the IV fluids. When we asked about her being put on bypass, Dr. Green felt very certain that they would need to do that. 

At 9:30am yesterday was when they began the procedure, starting with the another bronchoscopy. At 10:40 a nurse called to say they were starting the actual surgery (making the incision). At 12:50 we were told that the first splint was in, on her trachea and that they were about to start working on the ones for her main bronchi stems. By that point we knew it would be later than 2pm before we'd see her. But we were told that so far Emma had not been needed to be put on bypass! I was so happy about that. At 3:05 we were told that all of the splints had been placed. Then they would evaluate her to make sure she was still stable, close her up, then do another bronchoscopy before bringing her back up to the PICU room. Around 3:25 Dr. Green came in to talk to us and tell us how things went. He said she had not been put on bypass at all, although they kept the machine on stand by just in case. Oh my gosh, she is so strong!! He did say that her bronchi tissue was very thin -the thinnest they had ever seen- but they were still able to successfully put the splints in. However, several of the stitches needed to attach the splints to the bronchi were creating tears in the tissue and they had to use dissolvable surgical adhesive to cover the tears. He said after a week he would not be worried about new tears. Emma also had an infection from the puss in her lungs and they sent a culture "stat" to check that and immediately started her on broad antibiotics. 

We also talked to Dr. Ohye who works closely on the 3D splints as well. He said that although Emma has further bronchomalacia that collapses in the smaller branches in the lungs, they should be able to get more oxygen with the ventilator. He explained that before the surgery the vent was working hard just to keep the main stems open, but since they are now being held open with the splints, more oxygen can flow through to the lower areas. Hooray!! We were told that Emma's bronchi splints were all made bigger than her airway actually was, so they used smaller sterile packaged pieces that they had left over from another patient's surgery. A big thank you goes to that little kid! Now maybe the next baby can use the ones they didn't use for Emma's.

At 6pm the Nurse Practitioner told us that Emma was in the room, but they needed to place another PICC line that had two tubes since she was getting so much medicine. She said once that was done we could go back and see her. She also told us that they would keep Emma sedated and paralyzed (with neuromuscular blockers) for 24-48 hours. I thought that was a good idea due to how much she moves around and arches her back when she gets uncomfortable in bed. 45 minutes later one of the Fellows came to get us. He said they weren't able to place the new PICC line, but the one that had been in her arm for two weeks was still good for now. We walked back with him and finally got to see our daughter after 11 hours of waiting! She was puffy, but not as bad as we have seen in the past. The dressing bandage on her chest made the incision look smaller than I expected, and the chest tube was not that noticeable, but I'm used to seeing her with stuff taped all over her body. She also has another sensor connected to her arterial line in her groin that keeps track of her blood pressure, as well as pacer wires attached to her heart for a week in case of another cardiac arrest. Even with all the medicine in her system we could still see her right foot twitching once in a while. 

Today was pretty boring, but extremely wonderful. Boring is very good in a hospital. Emma still looked puffy, and got even puffier as the day went on due to her body holding in the IV fluids. The biggest problem we have faced so far is that she is barely getting out any urine. She got lasix once so far to make her pee, but that has not really worked yet. The nurses did a bladder scan -one in the morning and one in the evening- but they showed to not be full. She said she is waiting for the night doctors to do their rounds and give her the new instructions. Emma did not have any big alarms go off and when Dr. Green came in to check on her this afternoon he admitted that most of the kids code on the first day post-op. The night nurse started her formula feeds again through the NJ tube in her nose. She started with 3ml and is scheduled to go up by 3ml every four hours until she reaches 21ml, which is the amount she has been on (per hour with continuous feeds) this whole month. Emma is also getting eye ointment every two hours to keep her cornea lubricated since her eyes have stayed closed for two days now. She has metal stickers on her left forearm that they attached tiny jumper cables to in order to lightly shock her muscles every few hours so they can tell if they need to raise or lower the amount of paralytic medicine. The hardest part emotionally is that we are trying not to touch her much or kiss her at all because we don't want to stimulate her. She really needs to rest and heal these next few days, so we only get up from our chairs near her bed to whisper a few motivational words; telling her how proud we are of her, how beautiful and strong she is, and that we love her. At one point this afternoon I did place my hand on her head while talking to her and I noticed her right arm and lip moving a small amount, so I let go. 

** Today Emma is 200 days old ! **