livingwithevan.com

Author: William

  • Pacemaker Day

     

    I mentioned in yesterday’s post that his surgery was scheduled for 11:30AM today. The surgeon performing the operation is still working on the 1st case of the day so ours is being delayed. Sarah and I are hanging out with Evan waiting to hear when they are going to take him down. Evan has not had any food since 8AM and considering he usually eats every 3 hours he’s doing really, really well. He’s very awake but he’s not fussy and he is sucking away on his pacifier which he doesn’t usually do. Hopefully the surgeons call him down before he realizes that the pacifier isn’t filling up his belly and he starts wailing.

    I was surprised last night when I realized that I am just as nervous (or maybe even more) for this surgery than I was for the last one. It’s much, much less invasive, he does not need to go on a bypass machine, they don’t need to cut open his heart yet I am feeling the same things that I did on the morning of the first surgery. I left the hospital and went to see a movie to occupy my thoughts. After the movie however, I could not even think about going to sleep, I went back to the hotel, showered, changed my clothes, and spent the rest of the night back at the hospital. It’s quite a different place at 2AM, you should see the awesome parking spot that I got. 🙂

    It’s been 3 weeks now with the little guy and I know him that much better than I did two weeks ago. I see pieces of his personality, I am beginning to learn his cries and things that work for consoling him, which lucky for us, is almost anything. He has been such a great baby. Of course he cries but it’s short lived and usually pretty obvious what the problem is… first I look at my watch, how long has it been since his last feeding? 3 hours? OK, he’s hungry. Not been 3 hours yet? Well he probably needs a diaper change. Only on a handful of occasions has it gone any further than that. I know, I know, it’s still way to early to count my chickens, but let me live in this dream where he’s easy for a little bit longer. DOH! Jinxed myself…. unconsolable crying in full effect, but he’s hungry and can’t eat before surgery, that doesn’t count.

    More updates later…. going to hold screaming baby now. 🙂

  • Not home this weekend… but soon.

    Not home this weekend… but soon.

    One of the cardiologists came to see us this morning. She wanted to give us a heads up that the surgeon, cardiologists, and electrophysiologists are in agreement that the pacemaker should be done before Evan goes home. He’s scheduled to go back to the OR tomorrow at around 11:30AM. Normally pacemakers go in a persons upper left chest and the leads are fed through an artery and attached to the inside wall of the heart. In babies there is not enough room so they place it in his abdominal space and the leads are attached to the outside of the heart. They will go through the existing incision site to attach the leads to the heart and make a separate incision in his belly to put the pacemaker. Since he’ll be in the OR and knocked out again he will need to be on a ventilator which is pretty unfortunate, he’s just now starting to do well with feedings so we might be starting at square one with that again. Recovery time for a pacemaker is very short, we will likely spend Friday night in the ICU and he’ll be taken off of the ventilator and moved to moderate care on Saturday. After that all we’ll be waiting for is his little boy surgery and we’ll be on our way home. I expect that we will be home early next week! I really thought that we would be in the hospital for 5-6 weeks, but he’s done better than anyone would have expected and I couldn’t be happier. I’m so excited to spend some time at home with him before I have to go back to work. They are sending someone specializing in pacemakers to talk to us about it all, so I’ll try and post again after that with any new information information.

  • Slacking on the updates update.

    Slacking on the updates update.

    You know it’s time for an update when you wake up to several messages on Facebook, text messages, and a voice mail…Sorry I have been slacking on the updates.

    The truth is there has not been much going on to tell you other than he’s cute and cuddly, but you already knew that. The plan last week was to wait until Monday (yesterday) and make the decision on whether or not Evan needed a pacemaker. Well, wouldn’t you know it, Monday morning his own rhythm starting overriding the external pacemaker. The pacemaker is set to 100 bpm (beats per minute) and his little heart was going at 110-125 on its own! (Normal newborn heart rate is 120-160) Unfortunately it was short lived and was still not a regular rhythm. It did give the doctor’s hope that maybe he’s no longer in complete heart block and it’s only partial. They want to give it a couple more days and see what happens. <sigh> It should be a good thing, but we’re not very hopeful that it’s going to change enough to make a pacemaker unnecessary. At this point it seems like a pacemaker is the best thing for him and would make Sarah and I feel much more comfortable taking him home. Since yesterday morning I have not seen him override the pacemaker and when it was turned down his underlying rate was in the mid 70’s again.

    The picture on the left is from a display case outside our room that shows all kinds of medical devices that are common in cardiac kids. This particular shot is of a pacemaker. You can see how small it is in comparison to my car key.

    Evan had his first echocardiogram since the surgery. He was not a happy camper, although he was not very happy in general yesterday. He calmed down after about 5 minutes and let the man do his job in peace. We heard some results this morning which were good. The shunt that was placed looks good, no issues there. There is some very minor leaking in a couple of his valves which is not a concern, just something to watch.

    I was sitting in a rocking chair with Evan and after I got up and put him in the crib that my stomach felt cold…and wet. Diapers leak, even the good ones, end of story.

    Evan has been promoted to all oral medications, but he still has several. A couple diuretics, aspirin to prevent clots, Reglan to promote digestion, Tylenol and/or Motrin for pain, and Zantac for acid reflux.

    Evan loves to look around and loves to sit up. He can hold his head up a little bit and moves it from side to side to look at things. We sat him up in the Boppy and he looks around the room in amazement at everything he sees. Yesterday he watched some Family Guy and some Bachelor, nothing but quality television for our son.

    Click on any of the images below to see them larger. (is that red hair that I see? are we going to have a little ginger baby!!? ohhh no, it’s strawberry blonde, it’s strawberry blonde…)

  • It’s Friday!

    It’s Friday!

    OK… that has much less meaning when you’re not working and all of your days and nights run together. But it still feels good to say it.

    There is nothing new happening here. We’re still working on feeding and the little guy is still having trouble. We attempt to feed him by bottle for a few minutes and once he gets tired of it we switch over the rest of the feeding to his NG tube. If he’s interested then we also give him the pacifier so that he associates sucking with his belly getting full. The doctors and nurses say that this is completely normal after such a surgery and not eating at all for several days. It will just take time for him to relearn. I think that his “feeding schedule” also has a big impact on how well he’s doing. Here at the hospital it’s every 3 hours, no if’s, and’s, or but’s. He must have his calories…. they are calorie crazy. Babies sleep, eat, and poop, not necessarily in that order and certainly not according to a clock.

    It’s likely that Dr. Hirsch will make the decision on the pacemaker early next week. Although Sarah and I don’t like the idea of him having a pacemaker we feel like it’s the best thing for him. Even if he comes out of heart block today and everything looks great there is no guarantee that he won’t go back into heart block at a later time. With his heart’s anatomy he will always be at a higher risk for complete heart block and will very likely need a pacemaker someday anyway. I feel like if he gets it now it’s kind of a safety net. I would hate to go home and in 3 months, he go back into heart block. Granted, it’s not life threatening, his heart will still beat, but the risk is more than I care to take.

    Here are a few pictures that I took this morning of Evan and his favorite bear as well as his feeding tube. The tube, called an NG tube, goes all the way into his stomach. We add fortified breast milk to an open syringe and allow gravity to slowly drain the milk into his stomach. Sarah has been a milk machine, this morning she pumped 11 oz! That’s enough for 5 feedings.

  • Awwwww…… Look at that smile.

    Evan loves his bear. from William Wood on Vimeo.

  • Quick update Day 4

     

    When we arrived at the hospital today we were welcomed with more good news. His femoral IV’s, his G-tube (in his nose), and nearly all of his medications have been removed/stopped. He’s doing so well, they are going to transfer us to the moderate care section of the hospital. We would move directly to general care if not for the pacing problems in his heart and his need for the external pacemaker. The downside of moderate care is that it still only allows 2 people at the bedside at a time which we’re not happy about. The entire time we have been here we have been rotating mom, dad, and family in and out so that everyone can spend some time with him. A lot of time is spent sitting in waiting rooms killing time until we can see him again. It will be really nice when we’re finally in general care and not only be able to take care of him on our own but also to have more people come and see him.

  • Evan – 3 Days Post Surgery

    Evan – 3 Days Post Surgery

     

    Today has been and continues to be a very big day for the little guy. It’s only been three days since his surgery and he’s doing so well. Here’s is a rundown of what has happened today.

    • Chest tube removed
    • Catheter removed
    • Epinephrine stopped
    • Dopamine stopped
    • Down to lowest setting on milrinone
    • Lasix (diuretic) continues to be dialed down, only every 6 hours instead of a constant drip.
    • Lowered dosage of morphine (so he’s not so groggy and ‘lazy’ when it comes to breathing on his own)
    • Respiratory therapist performed 2 ‘sprints’ on him last night in which he breaths on his own for an hour and the see how he does. He did great!
    • At about 2:30pm this afternoon they removed him from the ventilator entirely and took the tube out of his throat!!! A very happy baby and parents.
    • Tonight after 9PM we are going to attempt to bottle feed him. He has not had any food since midnight on Thursday.

    We left the room for the removal of the vent tube in case there were any issues, we didn’t want to be in the way. We were told that he did very well and didn’t cry at all. The nurses said that he did manage a few dirty looks at them and the doctors. I think he gets that from his daddy.

    Since he’s had the tube out he has been a much happier baby but I think that’s running thin. Now that the morphine continues to be pulled back he’s more alert and is certainly feeling hungry. He was awake and looking around for a good couple hours after the tube came out and full of dirty looks and silent cries.

    He has been urinating and pooping all day and his stomach is finally looking closer to normal. The diuretics are certainly doing their job, the poor nurses had to change his bedding 3 times yesterday because the diaper was…. well… inadequate.

    One of the cardiologist’s stopped by and asked if we had any questions and we nailed him with lots of questions about complete heart block, his current pacing, how long do they ‘wait and see,’ what the possible treatment options are if it doesn’t come back, etc. Evan is still in complete heart block as Sarah mentioned in yesterday’s post. No progress has been made on that front since the surgery. Hopefully the tissues will start communicating with each other over the next several days. They will continue to monitor him and if there’s still no progress after a couple of weeks then the only recourse would be another surgery and a pacemaker implanted in the space above his stomach. We’re hopeful that this will not need to happen but it is a known possible outcome for babies with l-TGA since the nerves of their heart are often in weird configurations because of the ventricles and arteries switching places during development.

    All in all an excellent day for our little guy. Sarah and I are very confident that he’ll have no issues feeding tonight and we’ll be holding that beautiful boy in our arms again in no time.

  • The Day After Surgery

    We spent over 5 hours sitting in waiting rooms and the cafeteria today just waiting to go see Evan. First we couldn’t see him because his ‘roommate’ was coming back from the OR, then we couldn’t see him because they were doing a sterile procedure, then again, then it was shift change, then…. we finally got to see him. It was a very frustrating day until we got to see him.

    He’s looking a little better. His color is better, but he’s still extremely swollen and full of fluids. His little stomach is so huge and bloated. It looks and feels like a balloon. He’s certainly more responsive today. When you touch him he reacts to it and if you stimulate him enough he’ll open his eyes a little bit. We saw this when the nurse (Erica) gave him a bath and changed his bedding and a bunch of his wires. After his bath she took his weight, 2.5 lbs heavier than he was before the surgery, just a day and a half ago. Whoa… that’s a lot of extra fluids for a little fella that only weighs 8.5 lbs to begin with. They have removed some and reduced others of his blood pressure medications as he’s doing better in that regard. They also increased his diuretics by quite a bit. It’s going to take a few days for the swelling and fluids to go away. Hopefully that reduction in inflammation will help alleviate some of the other issues that are going on. His breathing is better but still not good enough to remove him from the vent and his ventricle is still not pumping without being triggered by the pacing machine. He’s not out of the woods by any means but he’s making small steps everyday and that’s all that we can ask of him.

    I’ve only been a dad for a week and you might not think that it would be possible to ‘miss’ changing a diaper, but I do. I miss changing his diapers, and feeding him, holding him, interacting with him, hearing the noises he makes (even cries), I miss it all. Seeing him in the state that he’s in is difficult and I can’t wait for the day when I am looking in my rear view mirror and see him in his car seat and Ann Arbor disappearing behind us.

    Keep on kicking butt little buddy.

  • Missing Evan…

    We have not been able to get back and see Evan today. The big room that he is in also has 3 other patients and one of them has had issues today so they are performing some procedures right there in the room. When this is going on there can be no visitors for the other patients in that room. I feel bad for the baby that’s having the issues and her family but I am missing my boy. They tell us he is doing fine, which is great, but this waiting room is L-A-M-E. He has been weaned from one of his medications but he’s still got a lot of others and lots of swelling, blood pressure issues, breathing issues, and his ventricle is still not pumping on its own. They say that these things are normal and can be caused by all the swelling and surgery that he’s had. We’ll keep watching it and hope that it corrects itself as his body heals.

  • Evan after surgery

    Dr. Hirsch came to talk to us at about 1:45pm and said that it went as expected. There was a little bleeding that they had to take care of in the OR but nothing out of the ordinary and nothing to cause concern, it just took some time. During the surgery she completed all of the things as planned and went ahead and inserted the cardiac IV line under the skin and into the heart. She told us that Evan would be wheeled up to the PCTU at around 2:30 and by 3:30 we should be able to see him. The unit was not ready for us at 3:30 and we had to wait until about 4:15pm. Our time with Evan was cut short (we got about 30 minutes with him) as a patient in the space next to Evan was being brought in and they do not allow people in the room during these times. We were told to come back in an hour. Since then we have spent some more time with him, talked to his doctor’s and nurses, and gotten a slightly better understanding of what is going on.

    In general Evan is doing well and the doctor’s and nurses are watching him very closely as his body responds to the surgery. A couple things that they are keeping a close eye on and working proactively to remedy are 1) his eyes are dilated and non-responsive, we are told that this is a typical reaction to atropine usage during surgery (atropine is used to help the nodes of the heart fire) and should wear off in a day or so. It can also be a sign of something more serious so they will perform an ultrasound on his brain to make sure that everything is ok. 2) His belly and chest cavity are filling with fluids due to the surgery, this is a normal reaction but the excess fluids need to be drained one way or another. Excess fluids cause undue stress on the heart and lungs. Typically, this is done through medications like lasix where the fluids will be processed by the kidney and excreted as urine. This also will take several days to remedy. He’s on many medications and has many tubes and wires all over him. He’s obviously on medication for pain, he’s feeling nothing. He’s also on medication for blood pressure, swelling, fluid retention, and vasal dilation (expanding and stretching of veins/arteries). As the days progress the medications and assistance from machines will be turned down as Evan gains the ability to do them on his own. Right now he is heavily sedated, he does not respond to our touch, or move on his own, he’s completely and utterly out of it. Tonight they will do no weaning from the meds or equipment and just give his body time to adjust.

    CAUTION:
    I am going to describe the scene in much more detail (and pictures) on a separate page. Some people may consider these graphic and be bothered by them. If you want to see the pictures and read the detail you can go to this webpage.