Happy Easter!
Warning: This will be a long post! :)
What we have learned about Joey: He is a typical boy! He is filled with boogers and slobber, likes to stick his tongue out at people when they are poking and prodding at him, and he blows some pretty awesome spit bubbles.
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Joey's road to recovery has begun! There have been a few hiccups, but the doctors tell us that none of it is really out of the ordinary and these are things that they see a lot with babies like Joey at this point in treatment. I think the best way to share everything is to break it down, timeline style, so you can get a better picture of what has been going on in the last few days.
Wednesday Night
Wednesday was pretty uneventful compared to Tuesday night and what was to come on surgery day. Except that Grandma and Grandpa got to come and visit! We were told after asking a couple nurses earlier in the week that they can make exceptions to the no visitors rule, but it really depended on who the charge nurse was and they recommended waiting until right before surgery to ask and that would give us the best shot at getting them up here. My parents still had not gotten to meet Joey, and they had only seen him very briefly in his transport carrier while leaving Huntington Hospital on the night he was born. Up until now we had tried our best to send pictures and videos and Facetime so that they could see him. So on Wednesday morning we asked the nurse if she could let the charge nurse know they we wanted to speak with him or her regarding having visitors. At about lunch time he came to do his rounds and we were able to ask. Because Joey was getting a new roommate that day, and because another patient on the floor had recently gotten a viral infection he had to get approval. He said it was about a 50/50 chance, so we waited. We went downstairs for lunch and he called us to tell us we could have them come for about 20-30 minutes if they came pretty soon. So they got in the car and were here in about an hour. They finally got to meet him in person, but in true Joey fashion, he slept the whole time! I still think he was excited to see them.
During the evening a doctor from the surgical team came to speak with us and get consent for the surgery the next day. Until now we had given consent for a few procedures like the PICC line, the balloon septostomy and a blood transfusion. It's always the same, they sit you down and ask you what you may already know and understand regarding the procedure, explain the process of the procedure in great detail and then go through ALL of the risks associated with it. That's always the hard part; knowing that your child needs to have this done, there are no other options, and have to sign that you understand that all of it could end in some catastrophic way. They do try to put you at ease and give you the likelihood of those things happening and with anything in life, you have to assume there is a risk.
During the evening a doctor from the surgical team came to speak with us and get consent for the surgery the next day. Until now we had given consent for a few procedures like the PICC line, the balloon septostomy and a blood transfusion. It's always the same, they sit you down and ask you what you may already know and understand regarding the procedure, explain the process of the procedure in great detail and then go through ALL of the risks associated with it. That's always the hard part; knowing that your child needs to have this done, there are no other options, and have to sign that you understand that all of it could end in some catastrophic way. They do try to put you at ease and give you the likelihood of those things happening and with anything in life, you have to assume there is a risk.
This surgeon explained Joey's condition again and reviewed what the surgical plan was. He explained both the Arterial Switch and the Nikaidoh Slide and said that both were options. He also explained that if the slide was done they would use a homograft from a cadaveric donor, and that it would need to be replaced a few times during life as he grew, but maybe not always with an open heart procedure. We were slightly confused because, again, we were hearing different things from different people. Although Dr. Herrington had just told us that the Nikaidoh was what they were going to do, this surgeon explained that once Dr. Starnes got in there and saw what was going on, he would then choose which route to take, and that it may not even end up being a true Switch or Nikaidoh but he may just reconstruct and repair as he sees fit. He touted Dr. Starnes accolades and surgical abilities and let us know that Joey was in the best possible hands. (Which we already knew!)
Joey was the second surgery on the schedule for Thursday which meant that, depending on the first surgery, he would be prepped and taken to the OR between 11 and noon. We could plan that anesthesia would take about 30 minutes and the surgery, with both surgeons working on him at the same time, would take about 3 hours. He then would be switching rooms in the CTICU (finally to a private room!) for recovery.
After we signed consent, we got some more cuddle time and got to hold him for quite a while. He slept the whole time, but it was nice to be able to spend some time with him in our arms. We packed up for the night and went to the apartment close by to get some rest before getting back to the hospital early the next morning.
Thursday Pre Op
Jamie and I got to the hospital bright and early Thursday morning after a pretty restless night of sleep. (Plus, the bed at the apartment was SO uncomfortable, it didn't help). We spent most of the morning at his bedside. He was awake for a lot of the morning, just looking around at us, but he was also pretty cranky. The nurse checked him all over, she was concerned with one of his IVs, but checked it twice and it seemed to be okay. He had been congested a lot and she thought he just may be clogged up. He was doing a lot of rooting and so we grabbed the pacifier for some suckling practice. He loves it and is quite a professional now! This is a good sign for feeding later on!
At about 11 o'clock the nurse started his antibiotics and said that we had about a 30 minute wait. And at about noon the anesthesiologist came in to roll him to the OR. We were able to follow him through the maze of hallways until we reached the last set of doors. We said our "see you later"s and had the long walk back without him. (As I just proofread this last part, I realize I made it sound pretty easy and casual. Just know that it was not. I was a crying mess the whole morning. I was so scared and nervous and felt so bad for what our little boy was about to go through.)
Jamie and I gathered up our things from our room so that we could move into Joey's new room down the hall once he was in recovery. Since arriving at CHLA, he was placed in a double room because they were so filled up in the CTICU that they reserved most of the single rooms for post operative patients. He was finally moving to his own room, but they were still sure of what room he would be moving to, so Jamie and I took all of our things to the second floor waiting room and parked ourselves there. The nurse said that the surgeons would look for us there to give us the after surgery update. They said that they typically don't give updates throughout the surgery because it moves so fast. We could then expect to be called by the nurse about an hour after that to let us know that he was settled back in his room and we could join him. So we had about 4-5 hours to sit and wait. The nurse suggested we go downstairs or out to eat, but I couldn't leave that waiting room. Luckily, because of the visitor restrictions we had the whole family waiting room to ourselves the majority of the time. We ate the lunch that we had packed, and I even was able to take a few little naps. But I think I woke up to look at the clock about every 15 minutes or so. Time couldn't have moved any slower.
At 3:15 the door to the room opened and I jumped up to see Dr. Starnes with a pleased look on his face walking over to us. He then proceeded to give us the best news ever! Joey's surgery had gone VERY well. He was able to repair the holes, do a simple switch of the arteries and coronaries and remove some muscle tissue around the pulmonary valve to unblock it. He was confident that the pulmonary valve would be able to sustain Joey, even as he grew, so a homograft or valve replacement was not needed! We breathed a HUGE sigh of relief. This meant that, unless there were some unplanned circumstances that came up later on, Joey would not need any follow up open heart surgeries! To know that we would not have to go through this again 2-3 more times was the biggest weight off of our shoulders.
Dr. Starnes told us that Joey was off the heart-lung machine at that point and that Dr. Herrington was finishing up the procedure. Joey's chest would be left open to allow for swelling and would probably be closed on Friday or Saturday.
For the rest of the day we had doctors and surgeons (some of whom we didn't even know) come up to us and tell us that they saw or heard about the surgery and how impressed they were with what Dr. Starnes did and the result. I didn't know that a surgery could be described as "beautiful" but that is how most of them described it.
After Dr. Starnes left us, Jamie and I waited patiently for a full hour and a half before getting too antsy and calling the nurse. She said that they had about 20 more minutes to get him all settled and then we could come in the room to see him. So we waited...
The nurse was great at going through and explaining what everything else on him was. He had a main line IV in his neck, a sensor on his forehead, they moved his breathing tube from his mouth to his nose, he had a feeding tube through his nose, a drain tube coming from his chest, two wires coming from his chest that were connected to the heart and worked like a temporary pacemaker so that they could control his heart rate, a urine catheter, his normal sticker sensors and two of the three other IVs that he had before surgery. The nurse told us that once they got him in there they found that the IV in his left hand (the same one she was suspicious of and checked twice earlier) had gone bad and was leaking. His hand was super swollen because of it. No wonder he was so fussy throughout the morning... She apologized for missing it. Bad IVs seem to be the story of his life.
The rest of the day on Thursday he was pretty sedated and they were just trying to keep him comfortable. They were concerned with a low blood pressure and the nurse said the first 12 hours usually had a lot of ups and downs and were the most critical. But they thought he was in pretty good shape.
At about 11 o'clock the nurse started his antibiotics and said that we had about a 30 minute wait. And at about noon the anesthesiologist came in to roll him to the OR. We were able to follow him through the maze of hallways until we reached the last set of doors. We said our "see you later"s and had the long walk back without him. (As I just proofread this last part, I realize I made it sound pretty easy and casual. Just know that it was not. I was a crying mess the whole morning. I was so scared and nervous and felt so bad for what our little boy was about to go through.)
Jamie and I gathered up our things from our room so that we could move into Joey's new room down the hall once he was in recovery. Since arriving at CHLA, he was placed in a double room because they were so filled up in the CTICU that they reserved most of the single rooms for post operative patients. He was finally moving to his own room, but they were still sure of what room he would be moving to, so Jamie and I took all of our things to the second floor waiting room and parked ourselves there. The nurse said that the surgeons would look for us there to give us the after surgery update. They said that they typically don't give updates throughout the surgery because it moves so fast. We could then expect to be called by the nurse about an hour after that to let us know that he was settled back in his room and we could join him. So we had about 4-5 hours to sit and wait. The nurse suggested we go downstairs or out to eat, but I couldn't leave that waiting room. Luckily, because of the visitor restrictions we had the whole family waiting room to ourselves the majority of the time. We ate the lunch that we had packed, and I even was able to take a few little naps. But I think I woke up to look at the clock about every 15 minutes or so. Time couldn't have moved any slower.
At 3:15 the door to the room opened and I jumped up to see Dr. Starnes with a pleased look on his face walking over to us. He then proceeded to give us the best news ever! Joey's surgery had gone VERY well. He was able to repair the holes, do a simple switch of the arteries and coronaries and remove some muscle tissue around the pulmonary valve to unblock it. He was confident that the pulmonary valve would be able to sustain Joey, even as he grew, so a homograft or valve replacement was not needed! We breathed a HUGE sigh of relief. This meant that, unless there were some unplanned circumstances that came up later on, Joey would not need any follow up open heart surgeries! To know that we would not have to go through this again 2-3 more times was the biggest weight off of our shoulders.
Dr. Starnes told us that Joey was off the heart-lung machine at that point and that Dr. Herrington was finishing up the procedure. Joey's chest would be left open to allow for swelling and would probably be closed on Friday or Saturday.
For the rest of the day we had doctors and surgeons (some of whom we didn't even know) come up to us and tell us that they saw or heard about the surgery and how impressed they were with what Dr. Starnes did and the result. I didn't know that a surgery could be described as "beautiful" but that is how most of them described it.
After Dr. Starnes left us, Jamie and I waited patiently for a full hour and a half before getting too antsy and calling the nurse. She said that they had about 20 more minutes to get him all settled and then we could come in the room to see him. So we waited...
Thursday Post Op
We were prepped ahead of time by the surgeon that did our consent and by our nurse on what to expect in terms of tubes and wires and what Joey would look like post surgery. I guess that I was just so relieved to see him that I didn't care too much about what I saw. But it was still very hard to see him in such a state. When we entered the room, the nurse asked if we would like her to cover up his chest with gauze, but it was too late, we had already seen it. His sternum was open about and inch wide and about 3-4 inches long. It was covered by mesh and a yellow sterile tape/patch. You could see his little heart beating, and it oddly gave me comfort to see it working like that. (It wasn't as gruesome as you might be imagining, you could see the movements from the beats, but not really the heart itself.) Jamie had a harder time seeing him like that because he was worried that he was in pain or suffering, but with all of the anesthesia, sedation and pain medicine we knew he wasn't feeling any of it. We had to be strong for our little man.The nurse was great at going through and explaining what everything else on him was. He had a main line IV in his neck, a sensor on his forehead, they moved his breathing tube from his mouth to his nose, he had a feeding tube through his nose, a drain tube coming from his chest, two wires coming from his chest that were connected to the heart and worked like a temporary pacemaker so that they could control his heart rate, a urine catheter, his normal sticker sensors and two of the three other IVs that he had before surgery. The nurse told us that once they got him in there they found that the IV in his left hand (the same one she was suspicious of and checked twice earlier) had gone bad and was leaking. His hand was super swollen because of it. No wonder he was so fussy throughout the morning... She apologized for missing it. Bad IVs seem to be the story of his life.
The rest of the day on Thursday he was pretty sedated and they were just trying to keep him comfortable. They were concerned with a low blood pressure and the nurse said the first 12 hours usually had a lot of ups and downs and were the most critical. But they thought he was in pretty good shape.
Friday
During morning rounds we got an update on the night. Everyone said it went very well and had many more highs than lows. His lung collapse was doing better since they moved his breathing tube from his mouth to his nose. The only things that were negative so far was that his blood pressure had been high and he was very puffy and holding on to a lot of fluid, which they would try to fix with more diuretics. The cardiologists came in after rounds to check on his heart rhythm and found that he was in a heart block. His heart rate was junctional, which means that it was beating from the center of the heart rather than the atrium and ventricles communicating and working together to form a regular "lub-dub" rhythm (thanks Bill Nye the Science Guy). Joey's atrium was beating much faster than the ventricles and they are disassociated and just out of synch. They examined it further with an EKG and the immediate plan was to just monitor because this is something that is not uncommon and is known to self regulate with the help of the pacemaker to "train" the heart to beat regularly. There is a more serious intervention for this problem that includes a medication to slow the atrial rate down and then speed it back up with the pacer to match the ventricle rate. But using a cardiac suppressant like that is not something wanted to do unless they had to.
The good news was that Joey was on the list for chest closer that day! We waited until about 1 o'clock and then were asked to leave the room for an hour. Although they did the chest closure in his room, it was still a surgery and they had to create a sterile environment. Plus, with the anesthesiologists, doctors, nurses and surgeons in the room it got crowded very quickly. Jamie and I went to eat lunch in the waiting room and returned about an hour and a half later and he was all closed up. They explained that the breast bone is pulled closed with wire that remains in the body and the bone continues to grow around it. All of the stitches are internal so there are no sutures to remove later on and the skin surface has a tape that will eventually flake off like dried glue. This makes for a smoother scar, which is exactly what we are hoping for!
Joey was pretty sedated for the remainder of the day again, and the only concern seemed to be around his heart rhythm. He was still in heart block and the cardiologists had a specialist in electrophysiology come to look at him. Even the specialist said that the best thing was to just wait and monitor. Joey had been on so many different meds since surgery, that they just wanted to see if he would level out on his own.
Saturday
Saturday was interesting because along with our nurse, we had a second nurse that was cross training, so our nurse was explaining EVERYTHING to her in great detail so Jamie and I got a lot of free lessons!
Early on Saturday morning Joey was more awake and aware than he had been since surgery. And he was having a hard time. They had to readjust his pain meds and were trying I figure out what he needed. Because of the diuretics he was given to get some of the fluids out, he was peeing a lot more and therefore passing more of his meds through than when he was retaining a lot of fluid. So they upped his Fentanyl. He was also so congested. They worked their hardest to get his lungs to loosen up and to get him to cough up the gunk enough so that they could suction it out. And just when they thought they had gotten most of it, he would have more congestion in his chest. All of this pain management and coughing was causing him to desaturated, which he hadn't done at all since surgery, and his blood pressure and heart rate kept climbing. They tried a nitric trial to see if the desaturation was coming from pressure in his lungs, but it proved not to be the case. Instead, they just made him more comfortable with meds, suctioned him more frequently and rolled him over to his left side. He seemed to respond well to all of this. He also had bloody secretions coming up when they suctioned him, so they x-rayed his chest and saw that his breathing tube was too far down in his lungs, so they pulled it up and the bloody secretions began to clear up.
This was all before morning rounds that day, but when the doctors came around their main goal was to get all of his excess fluid out. He was still so puffy in his feet and hands, and his urine output was not where they wanted it to be. As far as weaning from the ventilator, they would not focus on that until later, but when he was feeling better, they could back off of the ventilator as the Respitory Therapist saw fit. We were also excited to hear that they were going to take his chest tube and catheter out today as well as give him breast milk through his feeding tube today!
Since the late morning he turned into a different baby! He was much more content, comfortable and the plan that the doctors put in play for the day seemed to be working well. We played with him while he was awake and gave him a little pacifier practice. When Jamie and I left for the night, only his feet were a little puffy, he still had congestion, but everything seemed to be loosening up, he had two less tubes coming out of him and they lowered his pressure support on his ventilator!
The plan for the near future is to get the breathing tube out, continue breast milk through the feeding tube, get his heart rhythm under control, do more pacifier play, and possibly try feeding with a bottle.
We will keep you all posted!
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