Surgery Update

Caden's nurse and Emily, our social worker, have both made phone calls to CVICU in regards to the possibility of surgery today. What they tell us is there are only 4 beds available for the immediate post-op patients and none of those beds are available at the moment. However, they did say it was very possible it would happen over the weekend because Dr. Reddy often does surgeries then. So, we will continue to wait for further information. But at this point, it is very unlikely surgery will happen today. We are obviously disappointed, but we did know it was a possibility this would happen. So, we are trying to take it all in stride and be patient. Easier said than done. In the meantime, however, Caden is just hanging out. He is very mellow and relaxed today. When it comes time for surgery, he is all set to go. So that is good. We are grateful that surgery wasn't canceled because Caden was sick or something like that. We will keep you all posted.

Surgery on Hold

When Greg and I arrived at the hospital early this morning, Caden's nurse told us his surgery had been put on hold. She said the charge nurse had just let her know about 10 minutes before we got there. We are of course disappointed. But apparently there are no beds available in CVICU. We think it's because somebody didn't get discharged that they expected. So, we aren't sure if there is still a possibility of surgery later today, or if it's off entirely. But, it could still happen over the weekend, if not today. Please pray that things will happen in God's timing and that we may have the patience to wait.

Thursday, January 22

Today when we went to the hospital we were hoping that nothing had changed in regards to Caden having surgery on Friday morning. The nurse told us she thought things looked good, but couldn't guarantee it. She said that the lab work had been ordered for early Friday morning and that was a good sign. However, she said they had not ordered the blood from the bank yet. So, they were hoping that would still happen this afternoon.

While we were sitting with Caden, the nurse asked us if we wanted to hold him and we jumped at the chance. We haven't been able to hold him since they put him on CPAP last Sunday. She thought it would be nice for us to hold him before he goes in for surgery. So, Greg held him first while I ate and pumped. Then when I got back, we switched and I held him. Over all I think we held him for about 2 ½ hours. It was really nice to be able to do that.

An anesthesia fellow came by while I was holding Caden and talked to us about what to expect when surgery happens. She told us she didn't know whether we would have surgery tomorrow or even Saturday so that made us a little nervous. We so desperately want to get through surgery so Caden can begin the healing process. But, she told us if it is tomorrow morning, they would come get Caden from NICU around 7 or 7:15 am. She said we could walk with them to the doors of the operating room and then we have to say goodbye. We will get a pager that works anywhere in the hospital so we can be notified as soon as surgery is over. She said if the surgeons say it will take about four hours, that is for their part and doesn't count the time it takes for anesthesia to get Caden ready in the beginning. And, she said once surgery is over, the anesthesiologists will take Caden to CVICU and get him settled there and get his care transferred over to the staff in that unit. So, she said we should anticipate it would take an hour and a half to two hours above and beyond surgery before we can actually see Caden again.

This evening when we went back to the hospital, Caden had a new nurse and we talked with her for a few minutes. She said the blood had been ordered from the bank. That was the last hurdle in preparing for surgery. And, the medical staff we have talked to say that being scheduled for the first surgery of the day is the best position to be in. That is the least likely position to be bumped for something else. That is reassuring as we are ready for this to be done with!

Greg and I plan to go to the hospital around 6 am tomorrow so we can spend some time with Caden before they take him to surgery. We would appreciate your prayers for the surgeons as they work on Caden. That they would have steady hands and there aren't any complications. And, we ask for your prayers for us as we wait during surgery. Give us the peace, strength and courage to get through the surgery as well as post-op recovery.

Wednesday, January 21

Today was a very eventful day in terms of communication regarding Caden. We got to the hospital a little before noon and upon arriving, one of the cardiac surgeon fellows came by and said they were going to talk to pediatric surgery regarding how to do Caden's surgery. Shortly after that, the neonatal nurse practitioner came by and started giving us an update regarding conversations between neonatology and cardiac surgery. At that point, she said it sounded like cardiac surgery and pediatric surgery were going to coordinate to do the surgery together, but the timing would be driven based on Dr. Reddy and availability of a bed in cardiovascular ICU (CVICU).

The neonatology attending and our social worker came in and joined in the conversation as well. The neonatologist said he had talked with pediatric surgery and they were planning on joining in the surgery after Dr. Reddy had finished with the coarc repair. They would take over and repair the diaphragm and close up. It was nice to know there was finally some communication going on, but it still sounded like Dr. Reddy hadn't made a final determination.

In the meantime, our nurse had told us they needed to take out Caden's central line from his belly button because it wasn't going to last much longer. And, they were going to put a PIC line in to take it's place. She said we would need to sign a consent in order for them to do the procedure. The transport nurse assigned to do the PIC line came by and explained everything to us and we signed the consent. We didn't want to see her put it in, so we decided to go back to RMH to eat. No sooner had we gotten back there and were eating, than Caden's nurse called me and said that Dr. Reddy was coming to NICU to talk to us about Caden's surgery. This was a pleasant surprise since we had been wanting to speak with Dr. Reddy, but had given up on the idea because it did not appear to be a possibility. We did not waste any time heading back to the hospital.

We ended up being there almost an hour waiting for Dr. Reddy to show up, but at least we were there when he arrived. He said it was up to us whether we wanted the surgeries done separately or together. He said if they were done separately, that pediatric surgery would need to repair the diaphragm first because they would need to relieve the pressure on the right lung. Then, Caden would spend a few days recovering from that surgery before Dr. Reddy would go in from the left side and repair the coarc. He said he wouldn't do the coarc before the diaphragm if the surgeries were done separately because in order to go in from the left side, they have to partially collapse the left lung. And, if the right lung was already compromised, they wouldn't want to compromise the left lung at the same time.

He also said if he went in through the chest and did the coarc from there, he could very easily take care of the diaphragm at the same time. He said he would be willing to talk to pediatric surgery to see if they wanted to scrub in and participate, but he wouldn't leave Caden in the middle of the operation. He said he would remain through the whole thing and would be the one to open and close. But, he said he had not personally spoken with anyone from pediatric surgery, so the cardiac surgeon fellow that was with him, paged peds surgery and they called him right back. So, while we waited, Dr. Reddy talked with one of the peds surgeons and they agreed that Dr. Reddy would do the surgery by going in from the front and would repair the coarc first. Then, someone from peds surgery would come in and they would work together to repair the diaphragm. Then, Dr. Reddy would complete the surgery and close Caden up. One of the main things Dr. Reddy was concerned about with simply handing Caden over to peds sugery in the middle of the operation is that they are not used to doing surgery from the midline and cardiac surgery is used to doing repairs from that vantage point. This is the approach we are most comfortable with so we are glad to have had the conversation. Caden will only have one surgery and Dr. Reddy will remain through the whole thing. But in order to ensure the diaphragm is repaired well, peds surgery would scrub in and assist in that piece.

Once we had sorted out the surgical plan, we discussed the dilemma of timing. Dr. Reddy said that Caden is scheduled for surgery on Friday morning at 7:30 am. He is the first patient on their schedule that day. Dr. Reddy reminded us that there is always the potential for that to change if another patient who is worse off needs surgery, but for now, this is where we're at.

As Greg was leaving the hospital after our conversation with Dr. Reddy, he ran into the neonatology attending doctor and told him about what Dr. Reddy had said. The neonatologist expressed some concern about the arrangement, but he said he was going to close the loop and contact peds surgery and see what they told him. He wanted to make sure everyone involved was okay with the arrangement before we proceed. We are okay with that because we want what is done to be in the best interest of Caden. So, hopefully he will get back to us today with what he finds out.

I can't express how relieved I am that we now have a direction. I feel like my stress level has decreased immensely today simply because there is a plan in place. Even if Caden's surgery gets bumped for another baby who is more critical, I at least know there is a plan and that he's not being ignored. We just want to make forward progress. So, I don't know if we'll get any more news in the next day that is different than what we were told today, but if so, we'll keep you all posted.

In the meantime, we would appreciate your prayers specifically for Caden's surgeons and that everything will go smoothly in the operating room. And, prayers for us as we wait for him to come out and start his recovery. That will have it's own set of stresses, but we are really happy to be moving forward. It means we'll be one step closer to bringing our baby home! We appreciate all those who have been praying in earnest and we are reminded that when we work we work, but when we pray God works!

Tuesday, January 20

On Tuesday, a good friend from Sacramento came over to visit. She's so awesome to drive all the way over here for a short visit. It was great to see her even though it was brief. During her visit, we went in to see Caden. After awhile she went out and my sister came in. While my sister was in the room with me, one of the neonatology fellows came to tell us he had just spoken with one of the cardiac surgeon fellows and he was going to come talk to us in about 10-15 minutes. I told Cheryl to go call Greg and tell him to come to the hospital right away so we could both talk to him. Up until this point, we had been unable to talk to any of the surgeons and were quite anxious to do so. Especially because we knew that on Wednesday mornings, the cardiac team has their weekly meeting to discuss the patients needing surgery. We wanted to make sure Caden was on their radar screen and that they would talk about when to do his surgery.

Greg showed up shortly and arrived before the surgeon. When he got there, we had many questions for him, but he didn't have any real answers. He did tell us he had a procedure scheduled with Dr. Reddy that afternoon and he would talk to him at that time and would give us an update later in the day. He said Dr. Reddy would be the one making the decision about when to do surgery. And, he didn't want to speculate on what Dr. Reddy might be planning. However, he did give us his cell phone number and pager number and told us to contact him after 7 pm last night so we could get the update. We were so happy about that because even though he didn't give us any answers, he was a contact person and he has access to Dr. Reddy, which we don't.

In the afternoon, Emily, our social worker, called me to check in and see how we were doing. I told her the truth, that we were very stressed and that every day it seemed to be getting worse. We just want to have some sort of timeline for surgery for Caden and feel that he is important to the surgeons. She was very understanding (it is her job, I suppose) and promised to talk to the neonatologist attending handling Caden's case. She said it's the neonatologist's job to be the advocate for the baby with the surgeons. So, she called him and called me right back, telling me that he was arranging a meeting with himself, the pediatric surgeons, and the cardiac surgeons for Wednesday. This is the first time I think all of these people will be getting together at one time to discuss Caden's case. There has been some discussion on the phone about him, but I don't think all three areas have all met at one time to make a plan. So we are very excited to hear what comes out of that meeting.

Then, last night, Greg called the cardiac surgeon fellow to find out what Dr. Reddy had said in regards to Caden. Again, he didn't have a lot of new information. But he did say that Dr. Reddy said they were going to aim for Friday or Saturday for surgery. However, he added that Dr. Reddy didn't really want to give us a day because he thought if it got changed, that we would be upset. The reality is for us, that we would rather have an idea of the date and if it gets changed we'll have to deal with it. But the not knowing or having any idea of when it would take place was really hard on us. So, the cardiac surgeon fellow told us he would get in touch with us on Thursday to get our consent for the surgery and hopefully it would happen on Friday or Saturday.

I'm feeling slightly more optimistic today than yesterday and that is good. I just want to know that Caden is going to be taken care of so we can start the recovery process and go home. We're not able to hold him right now and know that the longer that is the case, the harder it's going to be for him to bond with us. We want to be able to hold him and love on him like any parent should with their child. And, we can't do that until surgery is taken care of and he starts to recover. Hopefully we will get even more specifics on Wednesday.