Author: William

 

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[/frame_left] Dr. Hirsch stopped by today and laid out a tentative schedule for Evan. Two weeks on antibiotics (from the day that the pacemaker was removed, last Wednesday), new pacemaker placed, and then some time recovering and being monitored before we go home. That would put us home sometime the week of Labor Day. It’s still a couple weeks away but it sure sounds better than the 6-8 weeks that I anticipated we were going to be here.

Also today occupational therapy, physical therapy, and infectious disease all stopped by for a consultation. For OT, there really isn’t anything that they can tell us or do for us that we don’t already know to do from our OT back home so we’ll start working on those things here. For PT, they brought us a nice mat so that we can play on the floor with Evan. Since Evan is just now becoming really active and mobile we’re afraid what the next surgery will hold for his progress when Dr. Hirsch has to cut into him in two more/different places to make room for the new pacemaker and leads while staying away from where the infection may still be residing. The physical therapist said to really work him hard now while he’s able, get him used to the movements and such and it will hopefully reduce the ‘lost time’ due to the surgery. Infectious disease came by to assess what the doctors had decided on antibiotics, course length, etc. They removed one of the two antibiotics that Evan was on (Tobramycin), saying that it didn’t really provide anything extra that the Zosyn was not already providing based on the studies of Evan’s cultures. Tobramycin is an antibiotic that requires regular blood draws to check the levels in the body, so discontinuing that one is not such a bad thing.

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[/frame_left]Mom took Evan to the courtyard for a nice walk today. If you’ve been following us since the beginning you might recognize this courtyard from Evan’s first trip outside. (second trip might look more familiar) It will be a year next week since Evan went for his first adventure outside. Time really does fly. To look at pictures of him then and now, I cannot believe how much he’s grown. These pictures are not a great representation but it was the best I could find at 1AM, click on it for a larger view.

 

 

 

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[/frame_left]Since the surgery it has been pretty uneventful, thankfully. Evan continues to recover quickly and is becoming more like himself again. He’s still more sleepy than normal but that may come from the lower heart rate and the pain meds. His heart rate has been very consistently 55-65 bpm and he has not really needed any supplemental oxygen in the last day or so. One of his IV lines was removed but he still has 3 and 2 chest tubes. The plan is to take one of the chest tubes out in the morning and leave the other until it’s very dry. The IV’s continue to flush well and he’s not messing with them so we’ll just leave those in case we need them.

Now we play the waiting game. We don’t know how long we’re going to wait before the pacemaker goes back in and we don’t know if that entire wait will be in the hospital or if we will go home and continue the antibiotics and then come back at a later time. Evan’s heart rate will give us the answer over the next week or two. Sarah and I have major hesitation about going home without a pacemaker. He had the pacemaker put in because he needs it and going home without out it is very scary. I trust the doctors, so if we watch his rate over the next week or so and it’s solid then i’ll warm up to the idea of going home but it will still take a lot of convincing and a very solid monitoring/backup plan. If we do go home it will only be for 2-3 weeks and then we’ll be back to have the pacemaker put back in. Although it certainly would be nice to go home it makes us very nervous so we’ll just wait and see. Paying multiple insurance deductibles for this would not be very nice either.

Evan seems to have a lot of “first’s” while we’re in the hospital and this stay has not been any different. Up until the surgery he was crawling around more than we’ve ever seen, he’s getting his first molar, and he’s learning how to wave really well (albeit at himself).

Here are some pictures from the last 3 or so days.

[frame_left][/frame_left]Just wanted to let everyone know that they came to get Evan at 6:30AM to take him to the OR for his surgery. Dr. Hirsch said it would be about 3 hours. They will be removing his pacemaker, leads, and a strip of GORETEX that’s overlying his heart. From there we’ll go to the ICU for a day or two until they’re sure he’s stable and then we’ll move to Moderate Care. Dr. Hirsch indicated that his course of antibiotics will last a minimum of 6 weeks from today, not from the day we started last week. We’re still not clear on how long they will keep us here or how long before they will put the pacemaker back in. They did indicate that it was not out of the realm of possibility that we come home without the pacemaker, continue the antibiotics at home and come back in a few weeks to have the pacemaker re-implanted. Obviously he would be on a heart monitor the whole time but mom and I still have not warmed up to this idea.

We’ll let you know when we hear more, until then please keep the prayers and positive vibes coming.

 

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[/frame_left] Evan has been feeling a little better today but the antibiotics have kicked in and he’s… well… we’ve had to change his bedding 3 times today from leaky diapers and puking. He has not been happy with any of the nurses today, If they come within 5 feet of him he starts crying. I’ve managed to get a couple smiles out of him today but for the most part he’s been very hard to please and it has been best to just leave him alone with his favorite cartoon. Nana, Papa, and cousin Xander came to visit today for a couple hours. I put Xander in the crib with Evan and they played ball for a little while and Evan was very happy to see his Papa and gave lots of hugs.

New developments for today.

• The bacteria was identified as Pseudomonas aeruginosa, the same infection that he had in February.
• It does not sound like the antibiotics will need to be changed, both of the antibiotics being used (Zosyn and Gentamicin) work well against this.
• Evan’s g-tube button is very leaky… if he sits up after eating his formula just pours out. We took his button out, made sure the balloon was full enough, and put it back in. Ped’s surgery is going to stop by on Monday to take a look at it. We suspect that he needs a new button anyway. He has had the same size button since he was 4 months old.
• His oxygen saturation has been all over the place today. Generally he sits around 80% with room air. He’s been using a cannula and oxygen since his surgery and they have been trying to wean him back to room air without much success. Just when we think we can pull the cannula off his sats drop to 70%. He was on room air earlier and near 90% and then an hour later he was back to 2L and 75%. We’re thinking that it might be related to feeding times. When he’s feeding his belly is digesting and needs more oxygen pulling it from the rest of his body. We’ll run his food slower and see if it makes a difference. I know Evan will appreciate getting the cannula off of his face.

 

Well, actually it’s been complete for some time now, but I have had some major network trouble so I was not able to finish the post and upload it. Sorry for those of you that have been waiting to hear something.

The short version… it was complicated, it took about 50% longer than she thought it would take but it was successful and Evan is doing fine in the ICU.

And now for the long version, grab some popcorn and a comfortable chair.

We knew we were going to be second case for surgery but we had no idea what time that meant so we just went on with our day and had a good time. We went for walks and we played alot. Evan was very active again, crawling about and being very talkative.

 

 

 

 

 

A couple nurses came to pickup Evan at 1pm to take him to pre-op. At about 1:30pm the anesthesiologist took him to the operating room for what we thought was going to be a two hour procedure. Around 4:30pm I got really anxious and worried… why was it taking so long? Why haven’t we heard anything? Some really terrible things crossed my mind, I shook it off and continued playing around on the computer (shocking, I know). Dr. Hirsch walked into the waiting room a little after 5pm looking like it had been a long day. The surgery was complete and was successful overall but was not without it’s complications.

• Evan has A LOT of scar tissue. We all knew this ahead of time but she made it more clear how much was there and what that really means.
• It’s not a matter of the scar tissue being ‘difficult’ to cut through. The scar tissue obstructs the view and makes it much more difficult to identify structures such as vessels and organs so it’s very time consuming to get through it safely. Additionally, it’s useless tissue, it does not function like normal tissue, you can’t feasibly cut it out and you can’t attach anything to it (like a pacemaker lead) and expect it to work like cardiac muscle.
• The gradual buildup of scar tissue on Evan’s heart is what the doctors say caused the lead to fail. The electrical signal was just no longer able to make a good connection, like putting gum on the terminals of a battery and expecting it to work.
• Some people scar more easily than others and scar tissue after surgery is no different. Not only has Evan had numerous surgeries but he scars easily and abundantly. This was the 5th time that they have had to cut into his chest.
• Dr. Hirsch indicated that the next surgery will be quite complicated because of all the scar tissue. When they cut through the sternum and open the chest you can typically see the heart beating underneath. With Evan this is not the case, and she must very carefully cut through scar tissue to get to the heart.
• She also indicated that she may have to make an additional incision on the side of his chest (where your bicep rests when you have your arms down) to access an unadulterated (non scarred) portion of the ventricle to place the pacemaker leads.
• If you’ve seen Evan’s chest you know that there is a big bump on it. That bump is his sternum. It has thickened substantially from all of the surgeries that have been done. It is very thick. When a heart surgeon of Dr. Hirsch’s caliber and experience says that “it’s thicker than anything I’ve seen” and “it’s quite impressive” then you know it really is abnormal. Between this and the scar tissue it’s very tedious to get into the chest cavity safely. We really hope that she’s able to shave down the bone a bit during his final surgery to make it look and feel more normal. As it stands now it protrudes quite a bit and we expect that has something do to with why Evan doesn’t like being on his belly. It can’t be very comfortable with that and his g-tube.
• They decided during surgery to completely remove the pacemaker and put in a new one as well as new leads. They had to make the “pacemaker pocket” larger to accommodate the new pacemaker. As an additional precaution they used two different types of leads. One that is sutured into the heart muscle and another which screws into the heart muscle. Only one is currently active but if it becomes problematic they can switch over to the other lead. I believe they wanted to make sure the pacemaker and leads would last until the next surgery, which we were thinking was only 6-9 months away, until Dr. Hirsch suggested waiting until Spring 2014!!!

2014?! Really? Dr. Hirsch feels that Evan’s next surgery is going to be pretty difficult (she said she expects to need to book the OR for all day) because of all the scar tissue and wants to put it off a full year so that he’ll be bigger and she’ll have more room to work. She also wants us to work hard at getting Evan to eat so that we can get rid of the G-tube. It’s placement (high midline) really limits how much she can open the chest up and there’s a fear of infection as well from stomach fluids and such so close to his surgical site. She does a great job dumbing it down for us, “if his pacemaker gets infected, I think I would cry,” so that must mean it would be really bad.  😆

We got back to see Evan at about 6:30pm and it was such a wonderful sight. We walked in and his eyes were wide open and looking at us. He was still very drugged and out of it but seeing his eyes looking at us was very comforting and we knew that everything was ok. We’re in the cardiac ICU (PCTU) now and we’ve been deemed “the most stable patient in the PCTU,” which means we will not be here long. Evan’s breathing tube was removed before he even left the OR and they’re weaning him off of the canulla and he’s handling it well. He’s on a couple extra meds for pain and antibiotics and they will be restarting his feeds very shortly.

Evan fell asleep shortly after we showed up and has been sleeping ever since. It was a long day for everyone and we’re glad that it’s over. Thanks everyone for your prayers and positive thoughts. This was an unexpected and unwelcome surgery but we’re very grateful that it turned out well and that it was caught before it became a very serious issue.

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…

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.