Sorry that it’s been several days without an update… I know you won’t believe it but we’ve been pretty busy. This having a kid thing is pretty time consuming. Who knew?
Let’s see… Evan sleeps really well. So far the nights have been pretty good, he’s been sleeping for 6+ hours at night but we have to feed him in between so we’ve been putting it down his NG tube while he sleeps (2AM feeding). The tube is actually pretty handy. I mean, of course I want it off of his face, but it has it’s advantages. 1) he always takes his entire feed whether he’s awake or not 2) having a problem getting him to burp? nope, you can syringe excess gas right out of his stomach, 3)wonder how well he’s digesting his food, you can pull up what’s left, if anything before a feed to see what’s left from the prior feed, 4) doesn’t like the taste or doesn’t want to take oral medicine? (see video), just put it down the tube.
Follow up care for Evan will be handled by doctors here in Kalamazoo. Evan’s first appointment with the pediatrician was Saturday morning. It was very basic, they just did the normal measurements, weight, listen to lungs, and heart and we filled out a ton of paperwork. The doctor admitted that she was late because she was reading all of the doctor’s notes from U of M. Uh ya…lot’s to read. We have another appointment in a couple weeks. Additionally, we have a cardiologist here in Kalamazoo and U of M set us up with several visits with a home care nurse as well. Her first visit was Sunday morning. The home care nurse comes every couple weeks to check on Evan’s progress. I’m looking forward to seeing the cardiologist, it was her that correctly diagnosed Evan and got the ball rolling way back in March. Look at him now.
Evan got his first real bath tonight. We’ve still got to get a countertop tub for him, but tonight we put him in the bathtub with a baby bath sponge thing. Turning the shower down to a trickle he really seemed to like the whole thing. He’s such a good baby.
We have two small dogs, Molly and Maggie. While we were in Ann Arbor various friends watched them for us and we’re very grateful. The dogs came back to the house Friday afternoon and have been great around Evan. They leave him alone and surprisingly do not seem to be interested in him at all. We’ve managed to coax them into smelling him but they really don’t seem to care.
Here are a couple videos from the past couple days and also some photos.
This is the first time that Evan really found his thumb and latched onto it. We put him on his belly for tummy time and he was not real happy about it but once he found his thumb it was just fine.
The short of it: Evan had a seizure early this morning and several more throughout the day. They are the result of a stroke he had some time ago but not sure when. He is comfortable, sleeping, and stable. His brain activity is being monitored continuously for 24-48 hours. He is NPO again (removed from feeding). We were scared but it appears he is ok for now. Here is how we got here…
I received a phone call at 4:45 am from a cardiology fellow. Overnight calls while your child is in the hospital are never a good thing. I was so out of it that I didn’t answer the phone, but had my bearings enough to immediately listen to the voicemail he left. Heart racing, I learned that Evan had a seizure and that he was currently undergoing a CT scan. Thank God he said the phone number for Moderate Care twice so I could make sure the reality of what I was doing was not some scary dream.
I called Moderate Care and spoke to nurse practitioner Denise who gave further details on the fellow’s message. She explained that at around 3 this morning, Evan’s oxygen saturation alarm was going off. The nurse suspected that perhaps the pulse ox band just came undone (it does happen a lot, but mostly when they are awake and moving or when you are holding them and moving around.) When she came to check it out, she noticed that Evan looked “mottled and dusky.” She took a blood gas sample and gave him oxygen. His pH was a little low, lactate was ok. After a little while he started doing better and became more responsive. The plan was to take another blood gas in an hour and see how it looks at that time.
At 3:30, the nurse went to reposition him and have him sit in his Boppy. Suddenly he stopped crying and moving, his breathing became sleep apnea like, his head moved to the left, his eyes deviated off to the side. She said he went “unresponsive” and called the cardiac fellow in to look. They pulled another blood gas and this had a better pH, lactate was still ok, white blood count was normal (indicating no infection), hematocrit was fine (indicating good response to transfusion yesterday), and his potassium was a little low so they gave him some extra. There was a concern he was having a seizure so they started him on phenobarbital. His feeds were turned off and they ordered a CT scan (he can’t get a MRI due to his pacemaker, but I think the CT is the default test).
Evan getting hooked up to the EEG
By the time we got to the hospital at 6:45, Evan was already back from his testing, his birthday balloons detached and bunched together because they had to move him in his bed for the procedure. He looked completely normal, still had his feeding tube in (which Evan ripped out but that’s for the better considering he is NPO again). I got to snuggle with him until 8:30 (Dad is feeling sickish and wants to keep some distance) until I had to step out for a bit. When I came back at 9 people had arrived to place Evan on EEG or Electroencephalogram. They are going to continuously monitor his brain activity for 24-48 hours, depending on what they see. Additionally, he is being video and voice recorded as well, so they can see what happens when he has one of these fits.
Dr. LaPage playing with pacemaker settings
At 10:30, Dr. LaPage, the electrophysiologist, came by to check Evan’s pacemaker setting. He has been having low diastolic blood pressures today and they wanted to see if raising his heartrate from 110 to 120 would improve this value. It didn’t so they left it at 110. When your heart is in diastole, it is filling with blood before it contracts again. Your diastolic BP is the lower number. The fear is that a low diastolic BP may have contributed to his previous cardiac episode on the 16th, so they’ve been monitoring this value as well. It had normally been in the 40s but it was in the low 20s when they started trying to make adjustments. Its a teeter-totter balance between pacemaker rates and medications.
Yet another echo
An echo was ordered to see if perhaps there is something lingering with his broviac, a catheter placed into his heart during his first surgery. Perhaps a blood clot formed and traveled to his brain – the nurse suggested. Wait – blood clot? That sounds like a stroke. Thought we were talking about seizure here. A thorough echo was performed around 1:45 pm. It was perhaps the clearest images of his heart we had ever seen and we were pestering the technician with structural questions. “We’re nerdy science people who didn’t go into medicine,” is our explanation.
Dr. Leber and Neurology Fellow exam Evan
During the echo, the neurologist, Dr. Leber, and a fellow came to talk to us. During the conversation we talked about the CT scan images and he said, “Do you want to see them?” Why yes, yes we do. The majority of the questions resulted from the images. Evan had a stroke, not yesterday and not when he was born, but sometime. The doctor did make a comment like it might have happened “a week ago.” Hmm a week ago… what happened then… Oh that’s right his cardiac incident where he went critical with acidosis and was rushed back to PCTU. Unfortunately this is the only CT scan we have so we can’t compare to anything, but Evan did have an ultrasound performed on his head the day of his surgery and when looking at those images (although not nearly as easy to see) the doctor did not see any damage at that time. Damage. Yes, Evan has some on the left side of his brain. On the CT images, it looks quite large.
This isn’t Evan’s brain and I think it is a “normal” adult one but I’m not sure. I just drew this up for visual reference. A CT scan is like slices of your body from your toes to your head, so when you look at images of the brain its like looking up someone’s nose. The left and rights are backwards. The area of injury permeates through several “slices” of Evan’s brain. The image I drew would be the damage at its largest. As you travel the slices toward the top of his head or toward his toes, the area tapers in dimension. CT scans are gray in color, and the damaged areas turn darker gray. White is the skull. Black is water and having some at his age is ok.
So what will the damage be? It is hard to say in a baby this young. If it were you or I, the doctor said we might have trouble feeling our right leg, hand, or right side of our face. We might have trouble with verbal comprehension but not talking. We might have issues with being able to name/identify our fingers on our hand. We could have attention problems. Who knows how this will affect Evan. His brain is growing so rapidly that maybe no damage will be done. We don’t even know his handedness yet (I’m thinking southpaw but that’s just me). There is another area of concern on Evan’s right side as well. Evidently, as the damaged stroke area gets older, it gets darker in the CT scans. There is a slightly shaded area on his right side that would be indicative of a separate stroke incident if it turns out to be something. They are going to check in a week to see if the area darkens and to confirm if there was another stroke (think of the stroke areas as slowing developing polaroid images). Even when he is 20 a CT scan will show a dark area on his left side from the confirmed stroke region. It might get smaller, but it should get darker. The neurologist said that in adults the area retains a brain look but in babies it often disintegrates into a watery slush (?) but couldn’t say why this is so. Water on the CT scan looks black, so as he ages it should turn into a blackened mass.
The treatment for now is to continue to monitor the seizures on the EEG. Seizures can damage the brain cells on the fringes of the stroke region. Or it can further damage blood supply to the stroke areas thereby causing more damage to previously unaffected areas. If they see more seizure activity, they will manage that with phenobarbital doses. We asked about other medications but that is the best option for babies. In looking up seizure medication lists there are a lot of familiar names. Phenytoin Sodium anyone? More of the wait and see game.
And just after the conclusion of all of this, a nurse drops a package off at Evan’s bedside table. A gift from the VanEseltine family. Lots of tears. Many thanks. Your support, thoughtfulness, and kindness means everything to us and it couldn’t have come at a better time.
Results of the echo are fine. There are no indications of a clot on his broviac or associated with the heart. Maybe there was one and it was missed before and that traveled to his brain? The neurologist said it is possible that happened before, but this latest echo again did not show any smoking gun. Good news is because we identified it as a brain issue, there is no need to keep him NPO so they will start feeding him sooner than later, starting over on the complex feeding protocol.
Please pray for the doctors to have the wisdom to figure all of this out. If he had 2 separate events then what is the source? Are there still more potential clots out there? Could there be more events? How much longer will the seizures last?
Sensor that communicates to the pacemaker through the skin.
Dr. LaPage playing with pacemaker settings
Mom documenting everything she can on such a busy day.
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.
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.
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.
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. 🙂
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.
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.
The past few days have been a little rougher for us. Both Bill and I are beginning to feel the strain of doing this routine over and over. It’s not like we haven’t been enormously blessed and have had such a smooth experience thus far, but we are entering a lull and need to get over this hump for the sake of our sanity. We’ve heard from other families how they have been here for 4 months, home for 4 days, and then right back in the hospital. I cannot imagine what it must be like for those long-term families when we’ve only been here for 2 weeks. We just can’t wait to walk into the next room to pick up our boy free from wires and tubes instead of driving 20 minutes for tethered snuggling sessions. Thanks for all the words of encouragement – they really help to lift our spirits.
Evan has been moved to “moderate care” and it is actually quite comfortable and less crowded in there. He is struggling with eating, which he never really did before. We think the vent tubes scratched up his mouth and throat and has just made swallowing painful for him. When bottle feeding, he often makes these horrific gagging faces and looks like he is in pain. We’ve asked for some pain meds but it will just take time for the tenderness to go away. In the meantime, he is being tube fed and has been tolerating that well, but he is throwing up more and never did that before. His food is supplemented to make sure he is getting enough calories. His metabolism is faster because his heart has to work harder so he needs the extra calories to make sure he gains weight. Please pray he can take his bottles so we can get rid of his NG tube.
Evan is still in complete heart block. On his own, his ventricles do not get the signal from his atrium and therefore do not beat fast enough. His heartrate should be 140-160 beats/min. Currently, on his own his ventricles pace at 58 beats/min yesterday and 72 beats/min today. That isn’t going to work. The doctors will not let him leave the hospital with complete heart block without getting a pacemaker first. They like to give kids 10-14 days after surgery to give time for swelling and edema to go down. The docs will make their decision Friday or Monday and schedule it for next week. It will probably give us an additional 5ish days in the hospital. Dr. Hirsch stopped by today to talk to us about it and she actually said that he had his own beat in the OR and it wasn’t until bringing him to the ICU that he developed heart block. So there is hope it can come back. Please pray for this.
Evan continues to poop like a champ but now he has diaper rash. Poor buddy! We now slather a super thick cream on his buns so hopefully it will go away soon. And daddy fell victim to the first pee spray yesterday. Frankly I’m surprised it has taken this long.
Maybe it is just me because I am new to this or maybe it is a change that happens between 1 and 2 weeks old, but lately when looking at Evan his eyes cross pretty frequently. Maybe his vision is improving and he is trying to focus?? Fellow parents, is this normal?
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.
Let’s see… Evan sleeps really well. So far the nights have been pretty good, he’s been sleeping for 6+ hours at night but we have to feed him in between so we’ve been putting it down his NG tube while he sleeps (2AM feeding). The tube is actually pretty handy. I mean, of course I want it off of his face, but it has it’s advantages. 1) he always takes his entire feed whether he’s awake or not 2) having a problem getting him to burp? nope, you can syringe excess gas right out of his stomach, 3)wonder how well he’s digesting his food, you can pull up what’s left, if anything before a feed to see what’s left from the prior feed, 4) doesn’t like the taste or doesn’t want to take oral medicine? (see video), just put it down the tube.
Follow up care for Evan will be handled by doctors here in Kalamazoo. Evan’s first appointment with the pediatrician was Saturday morning. It was very basic, they just did the normal measurements, weight, listen to lungs, and heart and we filled out a ton of paperwork. The doctor admitted that she was late because she was reading all of the doctor’s notes from U of M. Uh ya…lot’s to read. We have another appointment in a couple weeks. Additionally, we have a cardiologist here in Kalamazoo and U of M set us up with several visits with a home care nurse as well. Her first visit was Sunday morning. The home care nurse comes every couple weeks to check on Evan’s progress. I’m looking forward to seeing the cardiologist, it was her that correctly diagnosed Evan and got the ball rolling way back in March. Look at him now.
