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.
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.”
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!
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.
