livingwithevan.com

Tag: Surgery

  • Another setback…

    Being in general care is pretty nice.  The room is a typical hospital set-up; 2 beds in the room separated by a curtain running down the middle.  There is also a couch that can be used for a bed, meaning Evan would be able to have an overnight visitor.  I elected to stay overnight with him and give this whole sleepless Mommy thing a trial run.  We had a midnight feeding and then got all settled down and sleeping around 1ish.  Evan had another feeding at 3am and the nurse must have just set it up to be a tube feeding because he was sleeping.  I woke up to Evan getting restless and fussy in the middle of this feeding.  That isn’t all too uncommon for him.  He has his own personal internal limit and then anything beyond that makes him fuss for a little while and then he calms back down and usually sleeps through the rest of the feeding.  He did that and we eventually got all snuggly and sleepy around 415am.

    Wouldn’t you know but of course at that time the sticky electrodes on his chest for his ECG decided to randomly not be sticky anymore and his alarm kept going off.  Now, the thing about general care is that the nurses have a lot more patients to take care of so the response isn’t the most immediate.  It was going off intermittently for about 10 minutes and then it was silenced once and for all.  I cannot wait until we aren’t hooked up to things anymore that give false positive results and make a whole lot of noise for nothing.

    Evan is still battling a cough as a result from coming off the vent.  He sounds junky, like he would have a bad chest cold.  About 10 minutes after settling him down from the alarm he had a series of strong coughs.  It’s great that he is working on getting things out of his system but they must still hurt a bit to cough that hard, so he was awake and upset.  He calmed down easily again at around 5.

    At 520ish, a nurse came in to draw some blood.  Now, because he still has lines she did not need to poke him or anything but the lines were firmly underneath the blankets and he was fast asleep. No more… the nurse woke him for the blood draw. He was very restless, more than usual and it took quite a while to get him calmed down. There was nothing apparent that was wrong. We slept off and on with continued interruptions from the nurses and as the early morning wore on he became more and more irritable and more and more difficult to console.

    Will got to the hospital at around 9AM and took over with him so I could get some sleep on the fold out couch next to the bed. Here is his account of the rest of the day up until now:

    Evan did not want any part of his 9AM feeding that Sarah had been trying to give him in a bottle since about 8:30AM when he woke up crying so I setup the feeding tube and took over rocking chair duties from Sarah. He was extremely fussy, much more than normal. No matter what I did he was not calming down which is pretty unusual for him, he’s normally so easily consoled. The small grunts on every breath turned into full blown screaming and crying that lasted for quite some time. The nurse practitioner was called in as well as the current attending doctor on the floor who just also happens to be one of the electrophysiologist’s, Dr. Martin LaPage. They wanted a quick chest x-ray to check for fluids around his heart and an echo to look at his heart function. While they were waiting for people to show up they ran a blood gas and that’s when all hell broke loose, there must have been 8 people standing around his bed. His lactate was at 20 (should be 0.6-1.5) and his pH was down to 7.0 down from 7.40. This was pretty alarming to the doctors and they busted ass back to the ICU. Evan was put back on the ventilator and all the lines that he just got out were put back in so they would have access for medications. They stabilized him pretty quickly with medications and he’s comfortable. They have ordered/performed/planned several tests. They took saliva and urine samples for more cultures. Three x-rays. And as I type they are doing a very extensive fetal echocardiogram. Three people have been at the helm of the echo for the last 45 minutes or so looking at everything. Doctors from pediatric surgery came down and examined him as well. Given the problems that he’s had with feedings and and the susceptibility of these kids they are thinking that it might be Necrotizing enterocolitis(NEC). This is not good… this has been a huge fear of ours. The little girl that I mentioned in my previous post, Eva, she has several bouts of this. We’re not coming home this week and if it turns out to be something as serious as NEC then we won’t be home for quite some time. I’m being kicked out of the ICU because they are bringing another patient back, so I am going to stop it here… i’ll keep posting as we hear more. Keep the sweet little boy in your thoughts and prayers.

  • Post Pacemaker Surgery – Day 3

    Post Pacemaker Surgery – Day 3

    A little bit of catch up is in order… my apologies.  Yesterday Evan came off of the ventilator around noon.  He had completed his sprints beautifully and came off it without any problems.  He thrashed around a little bit so the nurses gave him some dexamethasone to reduce some swelling in his throat.  He was still in some discomfort and once again had his little squeaky cry back but honestly sounded and looked better than the first time off the vent.  Well, except for the coughing.  His lung x-ray looked clear but he still has a lot of congestion in his chest and does his best to cough but he is obviously a little tender.  The nurse tries to suction him, which of course is the equivalent of baby torture, but nothing much comes up.  It must just be out of reach.  He sounds much worse than he really is and with his solid coughing he should clear it up in a couple days.

    After coming off the vent the nurses like to wait 6 hours before resuming feeding.  Because he is awesome and because he was going to have breastmilk, they let him start eating a little earlier and Evan was very happy about this.  They start off on little increments and he chows it down like a champ.  Hope fully he will be able to bounce back with eating better this time around than the first.  But the best thing about coming off the vent is being able to hold the baby!  We got our snuggles in for a few hours and the whole fam benefited greatly from this.  You don’t know how much you miss something until you can’t do it anymore, that’s for sure.  Although he was no longer on the vent and had significantly gone down on medications and support, they like to keep babies overnight in the PCTU for observation

    This morning, Evan came off of Diurel and his arterial line was taken out.  We moved from the PCTU down to general care around Noon!  YAY!  This should be our last stopbefore leaving the hospital.  He still has his double lumen intracardiac broviac and an IV in his left hand.  They will need to sedate him to remove the broviac so they are leaving the peripheral IV in for that purpose.  His feeds are continuing to increase.  Evan seems to have topped out at 20 ml but he has gone from 41 to 52 ml this evening and doesn’t continue to take more orally.  The rest goes down his tube and it looks like we’ll have to work on this issue at home. Although he isn’t increasing in his oral intake we are very proud of his progress and it appears he is recovering from the vent much quicker this time around.

    There was some concern about fluid retention and the nurses are working at finding the right balance of medications and dosing.  There was also some concern about fluid around Evan’s heart so an ultrasound was done by Dr. Mackie.  I honestly don’t see how he can understand anything from the horribly grainy images, but his conclusion is that although there is some fluid around his heart it is not enough to worry about or drain.  We were also able to take a small walk around the hospital floor this afternoon.  Because Evan isn’t in a room with 24-hour nursing staff present he has to wear a tracking bracelet so he doesn’t get stolen.  Our walk was limited to the areas not in front of elevators or down hallways.  We are hoping that tomorrow we can go for a real walk and – gasp – maybe even venture outside!  They are able to disable his house arrest bracelet for a set amount of time and we can certainly walk around the hospital.  Outside might be pushing it but it will happen this week I’m sure.  I now predict that we will be discharged on Thursday, unless there are issues scheduling his broviac removal and “little man” procedure.  Then it would be Friday, but this week nonetheless.  And we’d still meet our goal of leaving before he is 1 month old.

    Go Evan Go!

  • Post Pacemaker Surgery – Day 1

    It’s been a day and a half since Evan’s pacemaker was put in and he’s doing fairly well. A doctor came by this morning and “plugged into” the pacemaker to check everything out and said it was working great. There is a sensor that you hold up to the skin near the pacemaker and it communicates with the pacemaker. They are able to run diagnostics, change settings, and do all kinds of other things that I know nothing about. Once we go home we will have regular pacemaker checkups performed over the phone by holding a telephone up to the pacemaker and it will talk to a computer on the other end. Cool. I talked to him a little more about the decision to use a single chamber pacemaker instead of the dual since I was still grey on this. There were several reasons but the one that sticks in my head is that Evan is going to have at least two more surgeries and during those the surgeons will be working on and around the atrium. If they were to place the atrium leads now there is a chance that they would need to be moved or replaced during subsequent surgeries. When a lead is placed careful attention is payed to how well it’s conducting to the heart, scar tissue from moving the lead can reduce the conductivity of the heart tissues and make finding an optimal place for the lead more difficult. It’s not optimal that the atrium and ventricle are not firing synchronously and will eventually be corrected with a dual chamber pacemaker but with a baby this is much less of an issue… he’s not going to be running any marathons anytime soon.

    Pretty normal things going on today for after surgery recovery… blood pressure stabilization, fluid retention, pain management, etc. He is still on the ventilator and they have been weaning him off throughout the day; the settings are currently as low as they go. Tonight they will do ‘sprints’ with him which are one hour blocks where they turn the ventilator down all the way and monitor his own breathing and how well his body is using the oxygen through blood tests and other monitoring. If that goes well then he’ll come off of the vent tomorrow. His blood pressure was a little iffy so they gave him some meds for that and that has since stabilized and the meds stopped. He’s on constant morphine for pain and gets an ‘extra’ dose when he looks particularly uncomfortable, like bath time. Last night when I was here the nurse had to suction the fluids out of his throat, something done quite often, but for some reason he was not happy about it. Instantly you could see on the monitor his blood pressure and heart rate shoot up and the looks on his face screamed “ouch.” The nurse was great she stopped what she was doing and went for the morphine, within a minute or two he had calmed down. It’s such a hard thing to see your child in such pain and be able to do nothing more than to caress their head and whisper into their ear, which I am sure does very little for them and more for me.

    One potential issue today… a fever. We came back from dinner and the nurse said he was at 102°F. He was pretty bundled up and it is very warm in here for some reason. They immediately put him on antibiotics (vancomycin, which is pretty much the end all be all of antibiotics) and took samples. It will be 2 days before the results come back since the cultures need time to grow. In the meantime they will treat him as though he does have something. If it turns out to be nothing great, but if it is something then they are 2 days ahead of it with antibiotics. His temperature was down to 97.9 the last time we checked so it might have been nothing at all. We’ll wait and see. It’s these kinds of things that you see a lot here that can be difficult. It seems that many of the heart kids are here not just here for heart problems but they have something else happen while they are here or when they go home that brings them back. Infections, viruses, etc. We’ve seen kids with MRSA, kids with stomach and intestine problems, etc, etc. One very sad story is of a girl named Eva that we were next to in the ICU. She was born in May, cleft lip and palate, premature, and a heart condition. She was too small to undergo the full Norwood operation and so underwent a hybrid operation to hold her over until she got bigger. She spent the next several weeks in the ICU fighting viral infections where she could not eat anything for 2 weeks while it ran its course. She had 3-4 of these infections, that’s 6-8 weeks without food in total, and 6-8 weeks of not growing. She was on IV nutrition, but that’s not going to help you grow. Her parents live 75 miles from here and took turns being with her, dad after work every night and mom all weekend, they also have a 2 year old at home. On July 28, the same day that we were kissing Evan goodbye for his big surgery, little Eva died of complications to a heart catheterization procedure. Sarah and I just found out about this the day before Evan’s pacemaker surgery and it hit us pretty hard. My heart goes out to the parents of the little ones that are not as fortunate as we have been.

    Evan opened his eyes nice and wide for the first time after surgery tonight… was great to see those beautiful eyes. He looked around for a little bit and we had a good conversation about how well he was doing and to keep it up. Then he got bored and fell back to sleep.

    I’ve also updated the Treatment of TA/l-TGA page with more detailed information of what was performed during the first surgery if you are interested.

  • 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.

  • 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.

  • 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.