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I cannot begin to put into words how grateful we are to have so many blessings.  People may look at our life and take such pity or call us brave, but really we have so much to be thankful for.  This is our version of normal so it really isn’t as overwhelming or cumbersome as you may think.  Exhausting at times, emotionally draining at others… busy… but mostly happy, loved, and a work in progress.  Evan has done so well despite his parents (ha) and their first-time-ed-ness.

The absolute truth is though that we wouldn’t be the people we are or in the place we are at if it wasn’t for an amazing network of support.

For my Raw Material Lab family, I am constantly blown away by your earnest care and consideration of my little man.  Your genuine desire for him to do well and for me to keep some level of sanity are saint-worthy attributes.  Your generous donations are more than I could have imagined.  Forgoing your own individual rewards in order to give us gas cards may have been an easy decision for you to come to, but you deserved the reward as well.  How many SQC hours can you log for Acts of Kindness?  I will have to treat you to an off-site “research study” into the various forms of Ethanol.  I owe you.

Karen and Nancy, you allowed me to leave work early the day before Evan’s surgery, which allowed me to have some cuddle time with my baby.  Otherwise I would have gotten here too late and he would have been asleep.  A mommy’s heart is so grateful for your unselfishness.

My other lab families, thank you for helping me find work that I can do while using my last 2 remaining brain cells.  I don’t mind the grunt work.  Thank you for not assigning me assays that require a 4-leaf clover and a lucky horseshoe to complete.  I appreciate your patience.  I won’t take the easy stuff forever.  Thank you for the lunch dates.  Your company is all I truly need.

For Bill’s Tech Transfer, ESTL, RTL, QA, and families, you are all so generous it is bordering on ridiculousness.  You all are crazy.  And thoughtful.  And lovely.   Would you accept a lunch date full of infant handsomeness as a sufficient thank-you?  The best I can offer is for you to see the goodness that you helped to support.

For our bosses, our bosses’ boss, our bosses’ bosses’ boss…. Thank you for the sympathies, understanding, and flexibility.  Everyone should be so fortunate to work with such wonderful people as we do.

Brittney, thank you for being so thoughtful and treating a hungry daddy to his favorite food.

Thank you to the Butcher family for both bringing our U of M Zipper Club shirts to the hospital and for the wonderful wooden puzzles.

Thank you to Scott Newport for the wonderful stool made from reclaimed wood and the redwood “tags,” we’ll put them to good use.

Carie and Jason, thank you for being constantly willing to open your house up to our barking, stinky, rambunctious dogs without complaint.  We know they are well in your care and we know they drive you nuts.  Your patience, friendship, and kindness are remarkable.

Kelly and Andrew, thank you for stepping in and filling in the holes with dog care despite the fact you have itty bitty twin girls and are (probably) slowly losing your sanity.  Hey, maybe that’s why you keep offering…

To our fantastic chefs, homecooked meals do so much for the soul.  Whether it is feeding us in the hospital or making sure we are taken care of once we go home.  Relieving that from our minds was so wonderful:

• McLaren Family Sloppy Joes (delish and lasted several days)
• Erica’s Ravioli Lasagna (great, simple, yummy, easy!)
• Karen’s Homemade Pot Pie and Tofu Lasagna (first time trying parsnips, yum)
• Tracy and Executive Chef Bobby’s Homemade Soup (flavor perfection)
• Spilson Family Tacos (complete with baggies of toppings – so thoughtful) and Lasagna (perfect… and garlic bread to boot)

We aren’t brave or anything remarkable – this was our chosen path with a child we think was perfectly made.  But your helping hands have absolutely made this journey much more manageable.

In todays picture album you will see visits from Bill’s parents and nephew Xander, physical therapy specialist Alaina, Cortney and Ian for a baby playdate, Sarah’s Mom and brother PJ and more cute pictures of Evan than you can handle. 🙂

 

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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.

 

 

We are still just hanging out in the hospital, getting more data on how his heart is functioning and how well he is tolerating everything.  Data is good.  We like data.  Evan continues to do pretty well, although he still has his moments. Not sure if he is just over everything or the fact that he is getting his molars or maybe he just is in a little bit of discomfort – he does like his pain meds.  He keeps itching at his chest and the steri strips on his incision.  Poor buddy.  I hate that he has to get cut up again in a couple weeks. 🙁  At least those will be new incisions??  More scars for my baby.  I just really hope that his new pacemaker placement doesn’t impede his development with regards to crawling and pulling himself up.  The thought of it just breaks my heart.

Other than that it is the same ole same ole.  His chest tubes were removed and he only still has his PICC line.  Less wires and such to deal with is nice.  Evan hasn’t been needing any O2 support, even blow-by, so that is nice too.  I’m still just as uncomfortable with the thought of going home any time soon.  Don’t even bring it up to me because it isn’t even a consideration I have now.  Oh!  And we learned that Evan actually has 3 strains of Psuedomonas growing inside him.  Of course we won’t be able to know if the infection has ever cleared or anything.  Keeping fingers crossed…

Also, there is an adorable video of Evan demonstrating his newest trick – waving.  Head on over to the Video page to check it out.  I would embed it here but it is too advanced for me to do – maybe someone with mad skillz will have to do it instead – hint hint.

Hint received loud and clear… not easy to do from a cell phone, but here it is. 🙂

Evan Waves from William Wood on Vimeo.

 

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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]It is kind of like Groundhog’s Day when you are waiting in the hospital.  There really aren’t any outward signs of progression so every day starts to feel the same and they blur together.  Evan is making signs that he is starting to feel better, or at the very least starting to get used to things or not be so irritated by things. He definitely knows who nurses are though because he will make a big stink of things very quickly 9 out of 10 times.  Even if they are doing something simple like hooking up his meds or taking his temperature.  If he knows they are around – he lets them know their presence is not wanted.  “You want to put a stethoscope on my chest?  No thank you I will push it away.  I am done with you now.”

 

He is more cuddly in the hospital than he is out of the hospital so it is nice to be able to sit with him and just hang out like when he was an itty bitty baby.  He does feel well enough to sit in bed for a while.  Sometimes he tries to play with his various wires but for the most part he leaves them alone.  Throw on some Peep of course and he is mesmerized.  [frame_left]

[/frame_left]We will put some toys in his bed and his favorite game is to throw them overboard so we have to lift up the sides of his baby jail all the way if we aren’t going to play with him.  Otherwise I’ll leave a side down and we will play “catch” and he seems to get a big kick out of it.  I’ve gotten quite a few smiles and giggles from that game.  The hard part is that he wants to pull himself up or try to do some crawling and it makes his incision a little leaky.  It’s pretty gross and I would think painful if not just irritating but he doesn’t really seem to notice.  It does seem to be healing nicely but the steri-strips are starting to itch for baby boy.  Sad that he has to be opened up again in a couple days and start from square 1 all over again. 🙁

Evan got his feeding tube button changed out last night so instead of his Mini ONE he now has a MIC G tube and it will reduce some of his g-tube leaking.  And then maybe he can get a different size when we leave.

Evan was moved up to 2.5L Oxygen through his cannula because is Oxygen saturation keeps dipping low.  The thought was that it is related to his feeding – the more full he is the lower his sats will become.  The respiratory therapist came by though and turned it down to 1.5L.  Per him, for children of Evan’s size, anything over 1L doesn’t to too much except irritate the sinuses.  He does seem to be more used to his cannula so not fighting him over that is nice. Either keep it in or out though because once it moves he gets very upset.

Pacemaker people also came by today and turned Evan’s pacemaker down to 50.  They want to try to do a dry run of how Evan’s heart rate will be prior to removing the pacemaker on Wednesday.  Evan’s rhythm has been anywhere from 52 to as high as 65 but you wouldn’t tell his heart is slow because he is still just as active.

They continued to grow his blood samples and another species of Pseudomonas was discovered so they are changing one of his antibiotics from Gentamicin to Tobramycin.  Hey yeah a generic drug that Pfizer makes.  Too bad it is on a shortage list.  Anyone want to work overtime this weekend?  ahahahahaha

 

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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.