livingwithevan.com

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  • 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. 🙂

  • Home this weekend??

    This morning Evan had a chest x-ray and everything looks great.  He still has a wet-sounding cough occasionally but it must be residual congestion and is not indicative of any illness.  Good news.

    Evan also had another EKG and visit from his electrophysiologist.  They had originally turned his pacemaker down to 80, but Evan was slightly below that so they turned it down to 70.  Since then he has been pacing on his own.  The docs want to collect 24 hours of his own pacing and they will evaluate the data on Thursday and make a final decision about the pacemaker.

    It was put to us that Evan is in a gray area when it comes to the pacemaker.  With his anatomy, he will need one.  And with a low heartrate, he will need one.  The question is when.  He appears to be tolerating the low rate well.  He does sleep a lot and we aren’t sure if that is because he is a newborn or because of his heart.  He also has feeding issues still but again it might just be due to everything he has been through and not because of his heart.  The question is – although his heartrate is low, is it steady and stable enough to delay installing a pacemaker until his 2nd surgery?  There are risks and benefits to both situations. If they decide to put it in now, the same incision on his chest will have to be opened as well as a new one on his belly.  He’ll have to go back on the ventilator, stay at least overnight in the ICU, and then we would have to work on his feedings all over again.  If there is room, he could have the surgery on Friday, otherwise have it on Monday.  I would guess we’d be here through the end of next week.

    If they decide to hold off, we can essentially leave.  It is the only thing holding us here.  He doesn’t eat well so we need to learn how to take care of his NG tube.  I installed the one he is using now and it did stink to have him cry so much but it really wasn’t that big of a deal.  We can work on his feedings at home just as well (or better) than at the hospital.  We would just need to watch him more carefully and they would teach us those signs.  All he needs is his “little boy” procedure and we could go.  Holy cow.  They would make sure we are well educated before going home.

    Evan is also no longer considered to be in complete heart block (3rd degree heart block).  They said he is more into a 2nd degree heart block with his atrium conduction followed by the ventricles, but that there is a pattern of a growing delay between those two events.  I checked it out and it sounds like Type 1 (Mobitz I/Wenckebach).  Here is another source.  When we were discussing his condition the nurse was watching his ECG and noticed that Evan had 4 normal heart beats in a row.  So maybe he will be ok after all.  That’s why they are going to look at the past 24 hours worth of data and also why they get paid the big bucks to make decisions like these.

    I understand better now where the debate was and why they wanted us to wait so long.  I don’t really know how to feel or what to think; I would just be nervous without one but the thought of him not having to undergo another procedure at this point is very appealing.  Just the thought of being able to have a cordless baby makes me giddy with excitement.

  • 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.

  • Evan 2 days post surgery

    Evan continues to make steady progress and has been showing signs that his body is turning a corner, giving the doctors a lot of optimism in his recovery.

    – He is continuing to be weaned from various blood pressure medications.  The nurses continued to dial down his epinephrine dosing to reach the level his doctors wanted and Evan responded very well.

    – His lungs still sound a little crackly but he has been initiating his own breaths while still on the ventilator.  Per his medical team, his vent was initially set to a “volume” setting and they typically don’t use this setting so it was giving him a little more help than usual.  But today they were able to change from the “volume” setting to whatever their typical setting is and they are also able to wean him down from that setting as well.  So lots of progress on the vent!  Overnight, they are going to attempt to run some breathing sprints, where they turn the vent down so Evan would essentially be breathing on his own but with the tubing in place.  They sprint for about an hour, give the patient time to rest, and repeat it a couple more times.  They just want to make sure that when they take someone off the vent the person will not have to go back on it.  Even if he breaths on his own, they will leave the tubing in place due to his still high fluid volumes.

    – Evan gained about 2 lbs after surgery and I would say most of that was fluid retention.  They have been giving him Lasix through his broviac catheter and they added another diuretic to the mix to speed up the process.  Boy did it work.  He lost about a half-pound of fluid in a few hours.  He even blew out his diaper a couple times, much to the annoyances of his nurses.  Getting rid of the extra fluid around his chest and belly is a big step toward being able to remove the vent and being transferred out of the PCTU.

    – Evan is still suffering from complete heart block.  I don’t know if it is a matter of still being weaned by other things or giving his body more time to heal as to whether or not he will be able to shake this.  It is the most serious remaining complication he has and if not remedied he will need a pacemaker.

    – Evan started to receive some IV nutrition today.  Previously he was just recuperating and getting nutrition is a good sign.  Next he will move onto using his feeding tube, then the bottle, and hopefully back to breastfeeding.  One step at a time tho.

  • 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.

  • YAYYYYYYY. First surgery done!

    Just got the news from the nurse practitioner. Who’s the happiest daddy in the world? That’s me! We were told that he’s off the heart and lung bypass machine and his heart is doing it all on it’s own. His little heart started right back up and is kicking hard… good boy! It will be an hour or so in the OR while they monitor his blood pressure since his blood gets thinned during the procedure. Then he will head up to the 5th floor where we will spend the next week or so in the pediatric cardiac intensive care unit (PCTU). It’s still going to be a couple hours or more until we get to see him. Once he gets up to the floor they need to hook him up to all their monitors, ventilator, and get his meds going. It’s going to be a couple days until we can hold him but just being able to see him and touch him will make mommy and daddy so much better. Dr. Hirsch will be stopping by the waiting area once she leaves surgery to definitively tell us how it all went. Words cannot possibly express how relieved I am or the gratitude that I have for Dr. Hirsch and the entire U of M team of doctors, nurses, and staff. I might even get a U of M shirt before we leave.

  • Quick Update #2

    Short and sweet – We just got briefed on Evan’s progress and so far everything is looking great!  Big boy is doing awesome and continues to kick ass in the OR!

    Dr. Hirsch is now working on installing the BT shunt that will connect the subclavian artery to his pulmonary atery.  She is also going to install an IV that will lead directly to his heart to improve administration of medications as well as monitor his blood pressure continuously.  It will stick out of his skin but will be better for him after the surgery. She has already completed the Damus-Kaye-Stansel (DKS) procedure, which combines his pulmonary artery and aorta.  She also whittled away at his atrial septal defect (ASD) to make sure it is sufficiently large that it will not close on its own.  She has also tied off his patent ductus arteriosus (PDA) because it is not needed for blood flow to the lungs, now that he has a shunt.

    When the anesthesiologist was carrying Evan away and Will and I started crying she said, “I know… I have your heart in my arms.  I promise we will take good care of him.”  I have no doubt they are and that he will recover beautifully.  Everyone here is awesome and we are so fortunate to have such a facility close to home.  This is the first step to going home and hopefully that is only a couple weeks away. 🙂

  • Pre-Surgery

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    Just sitting with the little guy getting in our last cuddle time before his big day. He’s so amazingly peaceful this morning especially for not having been fed his least two meals. I’ll be posting here as we hear news throughout the day. Please send all your positive thoughts and prayers Evan’s way today.