It’s a very surreal feeling, being back in general care. We were here once before for a very short time. We thought then that we were on our way home, that was two weeks ago. Hopefully this time will be different. It feels different. All that stands in our way is one more trip to the OR to remove the Broviac catheter from his chest (scheduled for Wednesday morning), his little boy surgery, to continue doing well with feeding, and all the normal stuff that goes with discharging a baby. We’re being told Friday. Evan will go home on 4 medications. Lasix for fluid retention, captopril for heart function, phenobarbital to suppress any more seizures (this one we will only have for a month), and baby aspirin which he’ll take forever to help prevent clots. I’m not sure how long the Lasix will last. The captopril will last until the next surgery at the very least.
As strange as this may sound to most of you, it will be with very mixed emotions that we leave this place. The biggest thing is knowing what to do with and how to take care of Evan if something happens. Not having the safety net of doctors and nurses right there is a scary feeling. The hospital is doing a great job of preparing us and providing us with resources above and beyond our doctors in Kalamazoo. Additionally, over the past 40+ days and nights we have met many great people, both families and staff. Even though we have not grown really close to any one person it feels, at least to me, like we’re some kind of big family. Maybe family is too strong of a word but we’re all here for similar reasons and we all have the same goal, to get these kids healthy enough to go home with their families where they belong. Sarah and I spend much of the day on our computers looking at various things on the internet, one of these things is blogs of other families who have been in our position already or are walking this winding road with us. Sometimes this can be very difficult since not all stories are happy ones, but other times it is very uplifting and therapeutic to see how well kids do after having these surgeries. One such case is Aly Jean. Aly was born in June of 2009 and has had all three of the surgeries that Evan must have. Her last surgery, the Fontan, was performed here in Ann Arbor (as were all of her surgeries) in March 2011, she was in the hospital for a mere 8 days after that surgery and is now thriving like any two year old. Among a group of kids playing, you would never pick Aly out as being any different. She’s an inspiration to us and I can only hope that Evan does as well as this amazing little girl. You can follow along with Aly here.
There are several other families here that now hold a special place in our hearts as well. The Butcher’s are a family we met through Aly’s website and happen to be here at Mott right now as well. Their daughter Brittany (13 years old) had a heart transplant in late 2008 and her body is now rejecting it. For the past several days she’s been sedated and paralyzed to let her body recover stress free. She’s on about 20 medications, a ventilator, and her blood is being removed, ‘washed,’ and put back in her body. This is called plasmapheresis and essentially strips her immune system to zero in order to stop the body from attacking the heart. Mia Wilson is another miracle in the making. Her and her family (parents and 3 sisters from Akron, Ohio) have been here for nearly 6 months and unfortunately little Mia still has a long way to go. Before she was born her parents were told that she wasn’t going to make it, but 4 days after birth she was still holding her own. She was flown to Mott Children’s hospital where the amazing staff here has helped with her heart problems, a stroke, bouts with severe hypoglycemia, hyperbilirubin, hepatic insufficiency and multiple stomach and bowel problems. Mia’s website is http://www.miasbigheart.com/ and I highly recommend watching the 13 minute video. Please keep these and all CHD families in your thoughts and prayers. Congenital heart defects are the #1 cause of death among all birth related defects. Nearly twice as many deaths occur from CHD than all childhood cancers combined.
A group called Metals4Mettle came by today and gave Evan a medal from the Detroit Marathon. They had dozens to choose from but I chose this one because it’s close to home and looks very cool. These metals are donated by finishers of marathons all over the world and given to children and adults that are “fighting debilitating illness who might not be able to run a race, but are in a race of their own just to continue to live their life.”
We got to go for our first walk outside with Evan today. We put the two med pumps that he’s still on with us in the bottom of the stroller and went out for a 15-20 minute walk in the huge courtyard. Evan was asleep before we ever even made it outside and never opened his eyes while we were out there. Let’s be honest though, the walk was not for Evan, it was for mom and dad. It felt so amazing to do something ‘normal’ with him, and more than that it gave us a sense that the end of our hospital stay was drawing near. Let’s hope that’s true.
Here are a few pictures before, during, and after our little adventure. Oh, I got him a new outfit for the occasion. 🙂
Since reloading the phenobarbital and continuing the maintenance dose Evan has not had any more seizures. This afternoon he was removed from the EEG and we gave him a nice bath to get all the wax and adhesive off of him. He was awake and alert for a very long time today, from about 10:30am until 4:00pm. Lots of looking around, making faces, smiling, and best of all zero crying…which was made up for by the two kids on either side of us screaming most of the day. Seeing him alert, moving around, making faces, it’s the most wonderful thing in the world.
The doctor’s restarted Evan’s feeding yesterday afternoon, and recently increased him to 6 mL/hour. They will keep increasing him every 8 hours until he’s at his goal intake of 22 mL per hour and then they’ll switch to 44 every 2 hours, and then 65 every three. This will take several days to get him there but they want to make sure that he is handling it well.
As far as the seizures go, he’s had 3 non-clinical seizures since yesterday afternoon. One at 9:30pm, one at 4:00am, and one at 9:30am this morning. A non-clinical seizure is a seizure in which there are no outwards signs like twitching, loss of body control, non responsiveness, etc. Sarah was holding him at 9:30pm last night and did not notice anything out of the ordinary, it was only after the neurologists reviewed the information from the EEG that they know he had the 3 seizures. They gave another dose and are continuing the maintenance doses of phenobarbital and will continue monitoring him on the EEG. Since they gave the extra dose at 11:00am he has not had another episode as of this post. Typically seizures only last a little while (days to weeks) after a stroke so they will continue the non-seizure medication and reevaluate him at a later time. Research is on-going in the neurology community to see what length of time is best but right now they just don’t know.
The CT scan is still scheduled for next week to take a look at the other side of his brain to see if there is indeed something there indicating another stroke at a different time.
He’s sleeping a little bit more as the phenobarbital is also a sedative but when he’s awake he’s very active and alert. The neurologists came by to examine him a couple times today and they do not see any signs of any long term effects. In fact they were very pleased to see how active he was and all of the movement he was making.
That’s all for now. Thanks for being on this journey with us.
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.
It has been seven days since Evan’s cardiac episode (NEC scare) and the surgeons are slowly starting to feed the little guy again. This morning they started him out at 3 mL per hour for 24 hours. It’s being pumped directly into his stomach through an NG tube continuously. If there are no bad signs by tomorrow morning then they will slowly start increasing his feeds back up to the point where he was. Tomorrow they will increase the continuous feed by 3 mL per hour every hour until he’s up to 22 mL per hour. Once he’s there they will stop the slow continuous feed and him on a more normal ‘all at once’ type dose, (this is called a bolus dose) of 22 mL. The following day 44 mL every 2 hours, the day after that 65 mL every 3 hours. This will put him back up to what he was eating before. Once he’s okay with that then they will start increasing the calories of the breast milk from 20 calories per ounce to 22 calories, and then to 24 calories. If you’ve been doing the math that’s about another week of us being here.
The nurse came in to give him blood today, this was news to us. She said his hematocrit (the percentage of red blood cells in blood) was low. We’re not sure why this happens, I think it’s just due to blood loss during surgery and such. We’ll confirm with the doctors when we see them next. It was not dangerously low by any means and in an adult they likely would not have done anything but they have found that in infants it’s best to have them at the high end of the normal range after surgery.
Evan is still on Milrinone for cardiac function and we’ll likely go home on a similar oral drug called Captopril. Until his feeds are back up he’s also still on IV nutrition consisting of TPN and lipids (fat emulsion). With food back in his stomach, he’s getting Reglan to help digestion and of course he’s still on Lasix to get rid of extra fluids. As far as tubes and wires, he had the NG tube put back in his nose this morning, a catheter in his leg for blood pressure monitoring and blood draws (which may come out tomorrow!), the dual lumen intracardiac Broviac catheter going through his chest and into his heart for medication, nutrition, etc, the pulse oximeter (red LED thing), and the 4 sticky pads on his chest to measure breathing and pulse.
Students are starting to show up here in Ann Arbor for the fall term. The streets are getting pretty busy. Get me out of here!
It may not seem like much, being one month old… but given what Evan has gone through in his short time here we wanted to celebrate a little.
Evan,
You never cease to amaze us. Every coo, every quivering lip, every smile, every scowl, every cry, every movement, and every look of amazement as you look around your new world melts our hearts. We’ll be forever in awe of what you can do and we’ll be there every step of the way. Thank you for choosing us as your parents and being such a strong little boy.
Sorry for the lack of updates the last couple days but as they say, no news is good news. Evan was moved out of the PCTU yesterday (Friday) morning and back to moderate care. He has not had any more episodes and he’s looking much better. Pediatric surgery has been following him and they have not seen anything in his x-rays that would lead them to believe that NEC is an issue. I’m still waiting for a decent explanation to what exactly happened with his heart, why, and what can be done if anything. I don’t know that we’ll ever really know. Dr. Mackie did say something about the fetal echo that has me concerned, his ventricle function was not as good after the episode as it was prior to the pacemaker surgery. He said this could be temporary. Did the coronary eschemia leave any long term effects? It’s been several days, do another echo and tell me if it’s temporary or permanent. Did portions of his heart tissue die? What does this mean? Can anything be done about it? No, probably not, but I’d still like to know if damage was done, how much, and what this may mean for his heart down the road.
Evan cannot have anything by mouth for 3 more days. He’s been amazingly good about it despite how hungry he must be. He’s been more awake and more fussy, but overall he’s been pretty good. His belly has to hurt from being hungry so he’s not getting as much sleep from the discomfort and surely from not getting those milk coma’s after a nice warm bottle. When they allow him to feed they will start out really slowly… The nurse practitioner stated that it would probably be over the course of 5 days. That means that the earliest we would leave would be August 29th. <sigh>
Tomorrow is Evan’s one month birthday! Yay. Happy Birthday little man. It’s hard to believe that it’s already been a month since you brightened all of our lives. Harder to believe all that you’ve gone through in such a short period of time. Life isn’t all it’s cracked up to be sometimes but it will get better my son, it will get better.
A special thanks to Evan’s friends at Community Shores Bank and Grandma Nancee for bringing Evan this huge monkey.
As you read yesterday things went really crazy really fast. Evan is now stable and relatively happy back in the PCTU. The echo, x-rays, blood gases, and cultures are not pointing to NEC which is great. Because he had some symptoms and because the doctors take NEC very seriously they are treating him with IV antibiotics and putting a hold on any feedings by mouth for at least a week. He will get nutrition through his IV but nothing can go into his stomach so he’ll be pretty irritable for the first 2-3 days. This will give his stomach and intestines time to calm down and heal if there was anything going on with them.
When he was moved to the PCTU he was under a lot of stress so he was sedated and intubated (put back on the ventilator). Additionally, the femoral arterial and central lines that had been removed for us to go to the floor were put back in so they would have access for delivering medications and fluids. His feeding tube (that daddy worked so hard to put in the night before) was replaced with a similar tube for removing gas from his stomach. He went back on Milrinone, was given potassium, and some other things. Through the course of only a couple hours his pH and lactate were brought back into the normal range and he’s been doing well since. His ventilator settings were reduced through the night and by 9AM they did a sprint and removed him from the ventilator. One of his femoral lines and the tube in his stomach for gas was also removed.
Dr. Mackie came by this morning and discussed another possibility with us that they are investigating. It’s called coronary ischemia and essentially means that there was not an adequate amount of blood being supplied by the coronary arteries to the heart. This possibility was brought to light during the echocardiogram done yesterday. Also during this echo they noticed a difference in his ventricular function (the beat of the ventricle) in comparison to the echo done a week ago. This could just be due to the stress he was under yesterday or because of the pacing being supplied by the pacemaker. They are still investigating whether or not this is an issue and what they might be able to do about it. They are monitoring it by testing the cardiac enzyme troponin. These levels are currently elevated but not at a remarkable level.
Since he’s unable to eat for at least a week and it’s going to take time for him to work back up to feeding once he’s allowed to eat again I suspect we’ll be here at least 2 more weeks. We don’t know what that means for us. We don’t expect them to keep us in the PCTU for that whole time if he’s stable, but I don’t really want to go back to general care unless they learn what happened and do something about it. We could go to moderate care or to the Holden NICU.
We appreciate everyone’s concerns and your thoughts and prayers during this difficult time.
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.
It’s a very surreal feeling, being back in general care. We were here once before for a very short time. We thought then that we were on our way home, that was two weeks ago. Hopefully this time will be different. It feels different. All that stands in our way is one more trip to the OR to remove the Broviac catheter from his chest (scheduled for Wednesday morning), his little boy surgery, to continue doing well with feeding, and all the normal stuff that goes with discharging a baby. We’re being told Friday. Evan will go home on 4 medications. Lasix for fluid retention, captopril for heart function, phenobarbital to suppress any more seizures (this one we will only have for a month), and baby aspirin which he’ll take forever to help prevent clots. I’m not sure how long the Lasix will last. The captopril will last until the next surgery at the very least.
A group called Metals4Mettle came by today and gave Evan a medal from the Detroit Marathon. They had dozens to choose from but I chose this one because it’s close to home and looks very cool. These metals are donated by finishers of marathons all over the world and given to children and adults that are “fighting debilitating illness who might not be able to run a race, but are in a race of their own just to continue to live their life.”
