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Dr. Bradley, the electrophysiologist came to talk to us this morning. We thought he was going to tell us that we were free to go home and that the pacemaker was stable enough to last until the spring when Evan is already scheduled to have his next surgery. To the contrary, Dr. Bradley informed us that he felt Evan’s pacemaker lead needed to be replaced as soon as possible and they were working to open up space in the OR for tomorrow or later in the week. This came as quite a shock to us but as Dr. Bradley explained it became very clear. It’s a safety net, plain and simple. Evan’s pacemaker is nearly at its max settings and it’s only giving him 90 beats per minute, if the problem with the lead or the connection gets worse there is no wiggle room with the pacemaker settings and it becomes critical. Could the pacemaker lead make it until the spring? Maybe. Maybe not. It’s the maybe not that we need to prepare for. Prepare for what is the safest course of action for Evan. Nobody wants him to have an extra surgery, least of all mom and I, but we understand and are in agreement with the doctors. I like safety nets. Other than the obvious concerns that we have about this surgery like intubating him, opening him up, infections, there is also a concern about more scar tissue both in his chest and on his heart there the pacemaker leads go. During the last surgery Dr. Hirsch had a very difficult time with all the scar tissue and this new surgery is just going to make the surgery in the spring that much more difficult.

So now we wait… again. As of this 5:00pm earlier today we had not heard if any space had been opened up in the OR. We should hear something in the morning. So now it’s clear, we’re going to be here at least the rest of the week, maybe longer if they can’t get him in until later in the week. For now we’ll just hang out and have a good time with Evan. We’ve been going for walks and playing alot. He’s so close to crawling. He will get on all four and move a couple feet. He hasn’t quite figured out the leg movement yet.

We walked over to the adult cardiology building today. There is a beautiful atrium there where we stopped to look around and take a few pictures.

We also hung out near our room and watched the people and cars way down below us. Evan loved smacking the window while he watched the world go by below him.

Enjoy a few pictures we took today…

I can say that Saturday and so far Sunday have been a huge improvement over Friday.  Friday night was just ghoulish.  It was an insight into how terrible coming back for the Fontan next summer will be with a toddler in tow.  Saturday into Sunday was a much better night of sleep for everyone and that was a huge relief.  Except when they come in and get his vitals at 1 or 2 in the morning and wake him up… that’s always a pain.  So far tonight he doesn’t really want to sleep but daddy thinks he has found the answer to it with a dirty dydee so hopefully that fixes everything.  He should be tired because all he has been doing today was play and move around.  He is so active it isn’t funny.  I think he is starting to figure out this crawling business and is finally not afraid to get on all fours and try to move around.  He has taken a couple crawls so it will be very soon that he is adept at it but it does make it harder to crawl in the hospital with a monitor in tow.  He keeps getting tangled in it.  Saturday we stayed inside more or less and watched a lot of Olympics but went on a couple walks.  Saturday night brought thunderstorms and it was pretty dreary during the day but the afternoon turned out quite nice so we were able to take some pictures outside.

We don’t have any new information as far as his care is concerned – we are still waiting to hear from the team on Monday.  My gut feeling is that they will be sending us home with additional monitoring and not do any surgical intervention at this time.  The last time they adjusted his pacemaker was Friday night at around 7ish and it took a while for it to stick.  It wasn’t until 1ish in the morning that his rate finally stabilized around 90.  I don’t know why that is and that is the only thing that bothers me.  Why was there a 5 hour delay from setting his pacemaker to when it worked consistently?  Since then his heart rate has stayed in the 90s and I’m sure that is the reason they will be sending us home.  The only other new issue is with the last 2 sets of vitals his blood pressure has been high.  I don’t know if it is related to him just being active and therefore not getting a good result or what.  It will be interesting to see what his value is during his nighttime vitals – although since they will be waking him up and irritating him I’m sure it will be a skewed value.

In any case, indulge in this cuteness…

Some things change and some things remain the same… today something remains the same from last year to today…

We’re in the hospital again. 😥

Each month we send a pacemaker transmission to the University of Michigan for their review. This transmission contains all kinds of data about how the pacemaker is acting. Typically, within a couple days of sending the tranmission we get an email saying that everything looked fine. Yesterday the story was different however. Sarah received a call at work from a pacemaker specialist and was told that something was wrong with the pacemaker and we needed to come in. They provided very little information as to what was wrong. Sarah called me at my desk and within a few minutes I was on my way to pick up Evan from my parents house. I was reluctant to drive the 2 hours to Ann Arbor without a little more information. We have a cardiologist in Kalamazoo that’s capable of interrogating the pacemaker so I wondered if that would be enough. Knowing that if it were serious we would have to go to Ann Arbor we were questioning what we should do but without more information I wasn’t comfortable doing anything. When we sent in the transmission the day before it was a little strange, it took longer than normal, and some of the lights on the display were different for some reason. We did it while I was holding Evan in my arms instead of laying down on the counter like we normally do so I thought maybe that had something to do with it. I wanted to send another transmission just to be sure. After several phone calls a waiting we ended up at our cardiologist in Kalamazoo to have the pacemaker interrrogated.

Both my second transmission and the interrogation confirmed the first transmission, that there was indeed something wrong with the pacemakers function. Evan’s heart was only responding (beating) to the pacemaker occaisonally. For the most part Evan’s heart was beating at his underlying rate of 60 beats per minute (bpm), not the normal 110 bpm that his pacemaker is set for. They changed some settings on the pacemaker and were able to get his rate up to about 80 bpm consistently. The cardiologist then explained to us that they had increased the voltage as high as they can and it was still not enough, there’s likely something wrong with one of the leads attached to the heart. Either the lead itself is broken or there is a problem with the attachment of the lead to the heart. In either case Evan will need surgery to replace the lead. We were told that Mott Children’s Hospital would have a bed ready for us by the time we got here so we went home to pack.

We arrived at Mott Children’s Hospital at about 6:30pm and made our way to our new room. It was  a very long night as Mr. Evan had no interest in going to sleep. He was out of his element and not happy about it. He was extremely active however. In his hospital cirb he was moving all over the place, playing with his toys and throwing everything over the side. Sometime shortly after midnight Evan finally fell asleep…for an hour, when I was awoken by the nurse coming to get some vital signs. Nevermind that I had a different nurse grab some vitals before he fell asleep. 😕  But he went back to sleep without much problem.

 

 

 

The plan for now is to just hang out for the weekend. Evan’s heart is being monitored closely and on Monday the surgical team will look at the different options and make a recommendation. There are 2 options as I understand it.

1. Do nothing. Evan will be having the final stage of his surgical procedures (the Fontan) in the spring of next year. If the team feels that the pacemaker is doing a well enough job to make it until then they might suggest we just wait. This would certainly mean that we would monitor him more closely at home with more frequent pacemaker transmissions, watching for various signs that it’s not performing correctly (fatigue, sleeping more, bluer, etc), and probably checking his heart rate regularly. Having the surgery comes with risks just like any other surgery. He will need to be intubated again, more drugs, cutting open his chest again, infection, etc. This will also create additional scar tissue on the hear from where the leads are placed which they would like to avoid since the’ll be replacing his pacemaker during the next surgery anyway.
2. Schedule surgery and replace the lead(s). This would mean opening up his chest in two places, one where the pacemaker sits and also the lower portion of his existing incision in the middle of his chest. They would not need to open the whole thing.

I’m really on the fence as to which one I would prefer… we’ll see what the doctor’s say. On one hand having another surgery does carry a lot of risk but does it carry any more or less risk than a pacemaker that’s working a little flaky? That’s what they’ll need to answer for us on Monday. I’ll keep you all posted.

Here are a few pictures from the last week or so including some of us in a ‘big pool.’ It was Evan’s first time and although he was very hesitant at first he warmed up to it and had a good time.

 

 

 

A year ago today at 5:39AM Evan was born. The journey of a ‘heart kid’ was described to me once as a roller coaster, and this year has been just that. Birth, open heart surgery, pacemaker, strokes/seizures, G-tube, second open heart surgery, chylothorax, bacterial infection in chest, feeding issues, developmental delay… the list continues to grow. But you know what… none if it matters.

This is all that matters. Look at at that amazingly happy baby. Despite all of the things that I listed, all of the meds, doctor’s appointments, therapy after therapy… he’s just a perfectly happy little boy. Mom and I feel so lucky each and every day to have such a wonderful son.

 

 

 

 

Evan had several wardrobe changes throughout the day, you can’t just buy one birthday outfit, and he can’t keep anything clean for more than a  couple hours. Evan slept in this morning, when we finally went in to wake him up this is what he was wearing.

 

Surrounded by family and friends we celebrated Evan’s first birthday. On the surface it was just that, a birthday party, but for us, and for other parents of heart kids, it is so much more than a first birthday. It’s a time to be thankful, thankful for modern medicine for one thing. If Evan had been born 30 years ago his chance of survival would have been zero, that’s right, zero. So what am I thankful for? And what will I be thankful for until the day that I die? Doctors, researchers and those that fund them. The work that they do to save the lives of these little babies is amazing and they are nothing less than heroes in my mind.

OK, sorry…. got a little off track there, on to the party and the pictures. The theme of the party was “It’s a splish splash birthday bash,” and everyone had a great time, especially the baby of the day. We had 5 kiddie pools with various sprinklers and a slip and slide. Tents and canopies to keep everyone cool… The day was overcast and absolutely perfect for an outdoor party. Evan has friends and family that are way too generous that got him so many wonderful things. We even got some things that little Joel Harger (a close friends baby boy with a mother that knows how to say “sold”) does not have if you can possibly believe it.

We ordered cakes from Bert’s Bakery in Comstock (and now in Kalamazoo also). They did an amazing job and the cake tasted delicious. Evan was not very interested in eating or playing in the cake, by this time he was already feeling pretty tired, I think. He managed to get a tiny smidge into his mouth and he was not happy about it. Someday buddy, someday.

After a very long day Evan was completely zonked out, hopefully he gets a good nights rest so that tomorrow he can wake up and do what every little boy wants to do, play with all his new toys. To him it will be like any other day but for us it’s one day past a very significant milestone in the life of a heart kid. Each year 100,000 babies will not see their first birthday because of a heart defect, and sadly we’ve met some of these families. We’re beyond grateful that Evan is doing so well and hope that it continues.

Thanks so much to Aunt Kate and Uncle PJ for coming down a day early to get everything setup for the party. Thanks to Nana and Grandma Nanc’ for making a bunch of food. And thanks to everyone who came to the party and is reading this post. Your love and encouragement have made  a world of difference over this last year.

This day last year we drove to Ann Arbor to begin waiting out for Evan’s arrival (it was his due date) and had no clue if we would return home as two or three.  Today we drove to Ann Arbor for follow-up development and neurology appointments.  What an evolution of a year.  Can’t imagine having one more eventful and don’t think I would want another one like it either!  The fog is lifting… a day at a time…

The developmental follow up is for the TECS study.  We signed Evan up for a number of studies when he was born.  Apparently now tho a developmental evaluation at 1 year is standard of care at UofM and that  is great.  He proved to be pretty much where we thought he was – delayed in gross motor, delayed in “self care” (being able to feed himself etc.), and delayed a bit in speech.  The speech part was new, hadn’t been mentioned to us before, but I think the feeding has a correlation to speech since it uses the same muscles.  Once he figures out how to eat I bet his speech improves a lot more.  They said for us to watch it and if by 18 mo he isn’t saying things to consider speech therapy.  Meh I’m not too worried again considering I think it is connected to feeding.  He’ll get there.  We go back for the TECS study re-evaluation when he is 3.

We also had a follow-up with his neurologist Dr. Leiber because Evan had at least 1 stroke and seizures last August.  He didn’t find anything remarkable and agreed with our earlier findings but we will visit him again in a year.  Evan had his head measured and it was basically at the 100th percentile.  The growth curve for his head is crazy steep.  We of course know he has a big noggin considering it is difficult getting 2T shirts over it.  The Dr. checked our heads just for good measure and turns out that dad’s head is larger than the average.  (ok mom’s is too but not as much as dad).  So buddy will be stuck with a big head – full of big brains too.

Fortunately and unfortunately we were able to see our friends the Wilson family.  Mia was recently admitted as she just isn’t feeling like herself lately.  Prayers that they either figure it out or that she gets better and gets out of the hospital and home soon!  And funny timing that another friend Aly was there for her 3 yr assessment the day before.  If we could only coordinate better next time.  Well… it does look like Mia and Evan will both have their Fontans next summer, so who knows.  It is nice to have familiar faces in the hospital.  Oh and we saw a sign for the Evan Newport Hope Award and it made us smile.  Scott met and talked with us a while after Evan’s birth and there is no doubt he is  passionate.

After all the hospital bidness we went to Toys R Us and returned what I had originally bought for Evan (the Tek Nek pony – his legs are too fat! and the 1 song was lame-o) and got something else instead.   Mama has some hope it will inspire to keep working on his PT!  We also bought some extra receiving blankets seeing as he had 2 spitups, 4 pukes, and 3 outfit changes during the day.  We were all out of our extra supplies and needed some backup just in case.  We also ran to the party store to get the remaining party supplies for Saturday.  The VanSolkema family bought out all of the design in Kalamazoo so we had to drive to Ann Arbor just to get anything. 😉  We’ll need to plan better next year.  (Momma VanSolkema works at Pfizer too and had twin boys on the 17th, so with birthdays only 4 days apart there will always be a lot of the same for us too.  Actually, there were a lot of boys born last year so we get ideas from everyone else and make our party that much more awesome 😎 There are perks for being last!)

Evan slept all the way home and then some.  Poor guy was pooped.  Hopefully uninterrupted sleep tonight.  Whoo hoo!  We rounded out the day watching some Dark Night, going for a walk with the present  Dadda bought, and watering the flowers.  A truly lovely day.

BTW I think this is the fastest we have ever done something and posted it.  I’m pretty proud of us for that. 🙂  I do have lots more photos to share tho and hopefully I can make another post soon.

How some things change… and some things stay the same??

 

 

 

Yeah… we love the pool.  Yesterday Grandma Nan and Uncle PJ came over to play.  Evan showed them his dancing moves, jumping moves, and throwing moves.  But most of all, he showed them his splashing moves.  I think we will need to get him some swimming lessons for sure.