Author: William

So here we are, 4 short days before Evan finds himself in the operating room once again. It’s hard to believe that nearly 2 years has passed since he was an inpatient at U of M. It feels like it was such a short time ago. I am not ready, I will never be ready.

We have had a wonderful summer full of smiles, playing, parks, fishing, learning, zoos, and growing. He has made a lot of progress with eating and even more with his speech. He’s speaking in short sentences and his vocabulary is growing every day. I was out of town for 2.5 weeks for work and when I returned it was like he was a whole new kid with his speech. In fact, he’s going to “graduate” from speech therapy tomorrow! I’m so proud of this kid.

Something else happened when I came home from this trip… Previously, I would come home and when he saw me, it was like any other day even though he hadn’t seen me for a week or two. This time I came home to a wonderful surprise. He saw me, “dadda!” and  ran over to me with open arms, I picked him up and he gave me a great big hug and put his head down in my neck. When I tried to put him down, he clutched me tighter…that boy melted my heart.

The plan for the coming days and weeks…

Tuesday Sept 9th – Pre-op appointments at U of M. An assessment of his health to make sure he’s healthy enough for surgery and probably an echo-cardiogram of his heart.

Wednesday Sept 10th – Heart catheterization and admission to the hospital. They will put a catheter into his blood vessels (probably in his groin) and push it into his heart. They will look at the condition of his heart, its valves, the pressures in the chambers, etc. This will give the surgeon a really good idea what she will have to work with when she gets in there.

Thursday Sept 11th – Evan is scheduled as first case which means that they will come to his room and get him in the morning, generally before 8AM, and prep him for surgery. The surgery is normally a half-day procedure but with Evan’s history and the scar tissue that’s present, Dr. Romano has booked the OR for the entire day. This surgery does require that his heart will be stopped. They will put him on a bypass machine that will pump his blood for him, perform the operation, remove him from bypass, and restart his heart.

Below is a short 2.5 minute video from the Children’s Hospital of Philadelphia that describes the surgery that Evan will be having.

At around the 2 minute mark the doctor describes a situation where fluid builds up around the heart and lungs. Some of this is normal after surgery and it’s mostly this phenomenon that will dictate how long Evan is in the hospital. He will have chest tubes and be taking medicine (diuretics) to drain this fluid from his chest. Once his body stops creating the fluid from the trauma of surgery and it has left his body he will be one step closer to going home. Other milestones that will need to be met… he will need to be tolerating his feedings, his post-op echo and x-rays need to look good, and his pacemaker will need to be interrogated to make sure that it’s working correctly after the surgery. We’re hoping that he will come home after two weeks but the hospital says that it could be as many as six. Once he comes home he is not allowed to return to daycare for 2 weeks to limit his exposure to anything that would cause an infection while he’s still very vulnerable. We can’t pick him up under his arms for at least 6 weeks after surgery to make sure that his sternum and ribs have time to heal and harden.

We’ll be making more frequent updates to the website over the coming days to keep you all informed on what is happening with little Evan. Thank you in advance for your continued love, support, and prayers.

Here are some pictures of him enjoying his summer.

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Happy 3rd Birthday Evan!!!

Surrounded by friends and family we celebrated Evan’s 3rd birthday at the zoo last weekend. We saw lions, and tigers, and bears…really. Evan’s favorite was the monkeys of course.

I can’t believe how quickly the time has passed. It doesn’t seem like it was that long ago that we were bringing him home for the first time or giving him his first bath (ok, that wasn’t actually his first bath but the video is awesome) or watching him walk across the living room for the first time.

Here are a few pictures from the day…

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Today Evan is 2 years and 11 months old! I cannot believe how quickly the time has gone by. I miss baby Evan cuddles and all of the “firsts” but big boy Evan is so much fun.

In my last post I mentioned that the dietitian suggested that we stop his 2 daytime tube feedings and continue the 2 nighttime tube feedings. His eating has improved significantly since then…with a caveat. He eats/drinks much more for my dad and the occupational therapist than he does for Sarah and I. We record what he eats and drinks each day and are amazed at what my dad is able to get him to put down. Sarah and I are lucky to get half to 3/4 of the amount that papa does. We have been keeping tabs on his weight and he seems to be holding pretty steady. Not losing anything, but also not really gaining anything either. We would like to get him a little heavier, he seems much to skinny to us. I don’t bother trying to give him “healthy” things so long as he’s getting the right mix of vegetables, fruit, grains, and protein… bacon, peanut butter, ice cream, and chicken nuggets are all fair game. We’re not “there” yet, we still deal with puking pretty regularly and he isn’t taking enough volume that we can stop his night time feeds but we’re so much closer than we were 6 months ago.

His next surgery is still scheduled for September 11. There haven’t been any changes to that. We will just keep him healthy and nervously count the days (82).

He ate his first full scoop of ice cream this month. When shown all the flavors and asked what kind he wanted, he responded, “brown.” Love that boy! 🙂

Enjoy some pictures from the last month or so.

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First… the FUN!

If you’re reading this and you live in the northern United States then you know what a dreadfully long, cold, and snowy winter it has been. In Michigan, we have had more snow and consecutive days below freezing this year than we have had in over 2 decades. When you can’t get out of the state for a nice warm vacation what can you do? How about a water park? Indoor of course. We got a group of friends together (12 adults and 8 kids ages ~2-4) and spent a weekend at Great Wolf Lodge in Traverse City. We all had a really great time, especially Evan.

And the not so fun…

Today Evan had a cardiology appointment here in Kalamazoo. The appointment went well despite how it made Sarah and I feel. It’s time to schedule his next surgery, the Fontan operation. We’ve known for over a year that this would be the spring/summer that it would happen but that didn’t change how it felt to hear the words from the cardiologist. She will be calling U of M and letting them know that he is ready and they will contact us to setup a heart catheterization and the operation. They say to plan for a 6 week hospital stay but it could be as little as a couple weeks depending on how quickly he recovers. I don’t know what the average stay is, I also know that this kid isn’t average. The operation is not urgent but we would like to get it over with and out of the way so that he can heal and enjoy the summer weather. We will let you know once we hear the final date. The rest of the appointment went well. His oxygen saturation was at about 80%, EKG looked normal, he’s 32 pounds (69th percentile for his age). They chose not to do an echo this time for a couple reasons, 1) they did an echo in December and don’t feel like it would have changed much and 2) U of M will be doing one soon anyway.

This is a depiction of what they will be doing. The picture isn’t a perfect representation because Evan’s anatomy is  a little different but it’s close enough. The heart on the left is about where he is now, the one on the right is what it will be after the operation. In very basic terms, his current blood flow (after 2 operations), is that deoxygenated blood returning to the heart from the top half of his body has been redirected to his lungs while the bottom half of his body still drains into his heart and mixes with the oxygenated blood (hence the 80% oxygen saturation). The Fontan will complete his new plumbing by directing the bottom half of returning blood directly to the lungs.

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This is a difficult post to write and I’m not exactly sure where to start.

We had a lot of joy and celebration on Evans birthday a few weeks ago but there was 1 very important person who was unable to be there – Nana.  The Tuesday before Evan’s party, Nana went into the hospital.  She was feeling pretty crummy and by the time the party came around she was still hospitalized with no real good grasp on what was going on. On Sunday, Evan’s actual birthday, we visited Nana in the hospital. She felt and looked a bit worse but was otherwise the same.  That would be the last time we would have a conversation with her. The next day, she was rushed to the operating room for surgery on her leg.

Over the next few days things quickly spiraled out of control. Nana was diagnosed with a septic Staphylococcus infection as well as necrotizing fasciitis (WARNING: Graphic pictures) on her lower right leg. Her liver and kidneys began to fail and she later developed pneumonia from a Psuedomonas infection in her lungs.  Nana never slipped into a coma but was heavily sedated as she was dependent on a ventilator.  We had small glimmers of hope for recovery but several of her organs were too damaged. We learned Nana would never recover and she was released from her physical body Saturday August 3 at 3:20 pm without any pain or suffering and surrounded by loved ones. Nana was only 57.

We were completely unprepared for her passing and her sudden illness was always seen as a temporary inconvenience until things got very serious very quickly. But she should not be remembered for her passing but rather how she lived.  Nana, Papa, and Xander all moved to Michigan from Florida to help take care of Evan so we could both work. It was that selfless attitude that was quintessential Nana. She loved her grandsons dearly and doted on our little boy so much. Xander will remember her more because he is six but it will be up to us to make sure Evan remembers. I am so happy she got to be with him so much and he will always know how much she was there for him.  It’s impossible to hold back the tears when Evan calls out for Nana or goes looking for her in their house. I know that time will heal and we find comfort in the fact that Nana is no longer in any pain as she had been dealing with it for years but we are still frustrated that she wasn’t able to live to a ripe old age, help us get through Evans next surgery, or watch both boys grow up to be the amazing men that we know they will be.

Terrilyn (DeMond) Seiwell
(June 7, 1956 – August 3, 2013)

Obituary in Lansing State Journal August 5, 2013 reads as follows:

Terrilyn Seiwell of Portage, MI Formerly of Spring Hill, Florida Age 57, passed away after a brief illness on Saturday, August 3, 2013. Terrilyn was born June 7, 1956, in East Lansing, Michigan the daughter of John and Mary (Adams) DeMond. Terri was born and raised in East Lansing. She spent much of her life in Florida and then returned to Michigan in 2011. Terri enjoyed going to the beach and gardening. Her true love was for her family, a loving wife, mother, sister, grandmother, aunt and friend will be dearly missed by all that knew her. She was preceded in death by her parents and sister, Erma Sue Phillips. Terri is survived by her loving husband of 25 years, James; children, William Wood and Heather Seiwell; sister, Sherry (Jerry) Frisbie; grandchildren, Xander Seiwell and Evan Wood; friends, Debbie Babb, Ginger Sprowls and Sarah Wood. Also surviving are several nieces and nephews. A Memorial Service will be held, Tuesday, August 6, 2013, 2:30p.m. at the Palmer, Bush & Jensen Family Funeral Home, Lansing Chapel with Chaplain Steve Ezop officiating. The family will receive relatives and friends, Tuesday, August 6, 2013, from 1:00 – 2:30 at the funeral home. Memorial contributions can be made to the Capital Area Humane Society in memory of Terri. Condolences can be sent to the family at www.palmerbush.com.

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It has been over a month since our last post and it’s been a blur. Sarah and I both got different jobs and although Sarah’s hasn’t officially started, she’s doing the work for both jobs. My new job requires some travel, lots of early morning teleconferences, and even more late nights on the computer. They are great opportunities for both of us but it’s pretty rough right now.

Evan started puking again and we didn’t know why. We went back to pedialyte for a couple days and that helped so we thought that it was a milk allergy issue again. The Nutramigen formula is hypoallergenic but it’s not 100% free of milk protein, it’s just mostly broken down. We were thinking that with his milk allergy numbers so high maybe any bit of milk protein would cause a reaction. We requested some cans of Elecare which is a formula that is completely free of milk protein. We’re not sure if it helped or not, he seemed to do better but by that time he had developed quite a cough and we began to think that the issue was more related to a cold. The cold is gone, we’ve switched back to Nutramigen and he hasn’t puked in over a week so maybe it wasn’t allergies after all.

A couple posts ago I said that the g-tube surgery was scheduled for May 23 and now I’m saying it’s on Monday, so what happened? Well, the g-tube site, called a stoma, got pretty nasty. It has started to ‘prolapse,’ or fall out of place. Essentially, the hole is expanding, his stomach tissue is continuing to come out and he needs surgery to correct it. We use a powder called Stomahesive to keep his stomach contents from leaking out. When the powder gets wet it turns into a solid, so we put it in and around the g-tube, then gauze, then tape to hold it all in place.  The redness and rash on his stomach is like a diaper rash, yeast. A couple applications of desitin/milk of magnesia mixture and it cleared right up. You can see from the picture that the site doesn’t look very good.  Because the site leaks, the stomach acid started eating away at his surrounding skin.  He started to develop a rather large (in our opinion) open sore south of his stoma (of course – as gravity would pull the leaking material down toward his belly button when he wasn’t laying down).  The sore was pissy – it would often bleed, did not heal but kept getting worse for over 2 weeks, and Evan would sign “hurt” and cry and smack our hands whenever we had to change his dressing.  Ironically, everything with his stoma started really going down hill April 11, the original scheduled day of this surgery.  It’s like his tummy knew it had to hang in there until that date and then once it came it just gave up and gave in.  Without anything getting better and the pain it was causing him, we knew we had to at least ask Cincinnati if they could move the surgery up.  At this point, any time sooner was just another (hopefully) pain-free day for him.  Cincinnati Children’s hospital was able to move up Evan’s surgery to May 13 – so he can start to get relief 10 days earlier than planned. The plan is to sew up the existing hole and tissues and put in a new g-tube a few inches to the left of the existing one. They estimate that he’ll be in the hospital for 5 days.

He was looking really nice one morning and I took this picture of him with Sarah. I asked him to smile, and he actually did. That never happens, lol.

Now to play catch up…

We were invited over to the Scherrer household to make Easter eggs.  Evan tried his first peep too.

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Morgan (Sarah’s niece) turned 6 and Evan had a great time at her birthday party.

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Sarah was just goofing around with her camera and taking pics of Evan naturally.  Here he is being cute and happy that she decided to ditched efforts at giving him OT to instead take pics and act goofy.

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Evan still very much loves to play in the dog crate. He’ll take toys in there with him and just hang out. Here are a few pictures of him having a good time, even in his Easter Sunday best…

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We went to Muskegon for Easter to spend some time with Sarah’s family. Grandma Jo came up from Florida for Easter and Morgan’s birthday and it was great to see her.

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Evan managed to get half of a plastic egg to stick to his foot and he was really enjoying it until it fell off and he couldn’t get it to go back on and stay on. Watch the meltdown… I wish I had it on video. He tried and tried to get it to stay and then he would start to stand up and it would fall off. He threw himself back to the floor, tried again, and again, they he screamed and threw the egg across the floor. Wonder where he gets that?

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Evan has been making progress in speech therapy. Miss Kathleen works with his vocalization and he’s making a lot more sounds now. He makes over a dozen letter sounds, and says a few things pretty clearly, momma, dadda, nana, poppa. His cognitive and recognition skills are really great. He’s a machine with flash cards and identification. His eating hit a speed bump with his last illness and the puking but we’re picking it back up. Here are some pictures from therapy and a video of him playing flash cards with Sarah.

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LEARNING WITH EVAN from William Wood on Vimeo.

Several weeks ago we went to a mom to mom sale and I had to buy this fire truck thing that takes up a ton of room but Evan can play in. What kid doesn’t like stuff like this?

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A bit brisk outside for an April afternoon, but who can resist playing in the sunshine?

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And then there’s all of the miscellaneous pictures from the last several weeks…

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If you have been following along with Evan’s journey then you should know that, in addition to everything else, Evan has been battling GERD and puking his entire life. His puking has gotten so bad that we’re concerned about his teeth, which, at only 20 months old are browned from all of the acid that’s in his mouth. You try brushing the teeth of a child who doesn’t want anything in their mouth let alone a toothbrush. Thankfully what we thought was decay is only surface staining. We will be going for cleanings every 3 months to clean this up and prevent any future problems. We’re not certain but these cleanings may have to take place at Bronson under anesthesia.

After at least two upper GI’s, a couple small bowel follow through’s, and a couple reflux studies both at Bronson and at U of M over the last 15 months we were at no better understanding of his puking. Evan has some reflux but his anatomy looks perfectly normal. Two things were suggested for his puking 1) Wait it out. Many kids have puking problems until they are about 1 year old. 2) Have a nissen fundoplication surgery performed where the stomach is wrapped and secured around the bottom portion of the esophagus. The outcome of this is that when the stomach contracts it constricts around the esophagus not allowing anything to come up. We could not see putting Evan through another surgery especially one that seems so uncomfortable. It seems like it would feel completely awful not to be able to throw up even though your stomach is trying.

If you’re like us, you may be thinking, what about an allergy? We asked nurses, doctors, specialists, and the answer was always the same. “If it were an allergy, you would see other symptoms, blood in his stool, diarrhea, excessive fussiness, bad butt rashes, etc.” When he was 2-3 months old, we even tried different formulas and it didn’t seem to make a difference.

Fast forward several months…

Saturday February 23rd some friends rented rooms at the Holiday Inn so that all the kids could swim in the pool and have a little staycation. We took Evan but we didn’t swim long; the water was much too cold. Later that weekend Evan was puking a lot more than normal, 10+ times in a day. We gave him Pedialyte and stopped his Lasix to try and keep him hydrated. He did much better on the Pedialyte, hardly any puke at all. On Monday after our OT appt I took Evan to the pediatrician because with cardiac kids you need to be particularly careful about fluid levels and dehydration.  The pediatrician said that Evan likely had a stomach virus and just needed time for it to pass. We should continue with Pedialyte for a couple days until the virus clears.

Sarah and I had begun re-talking talking about allergies over the past few days given how well Evan responded to his Pedialyte-only diet.  I said to the pediatrician, “I know we have gone over this before but please tell me again why we think it’s not an allergy.” I got the same song and dance, blood, diarrhea, irritability…. but then at the end he sad, “but i’ll put in an order for milk allergy test and the next time he has blood drawn they will go ahead and run it.”  We also got a hold of the cardiologist and she said to hold the Lasix until 24 hours past the point when the puking goes back to normal.

A couple days later, we thought Evan was over his illness and wanted to switch back to formula.  His puking had not returned.  Driven by this, we decided to not return to his Similac Sensitive and even bypassed a soy-based formula.  We started giving Evan a formula called Nutramigen, a hypoallergenic formula for children allergic to milk protein, based on our gut instincts.  He never puked.

A few days later Sarah took Evan to get his blood drawn and two days after that she came down to my office nearly in tears. The lab called and said that Evan’s test came back “highly positive” for a milk allergy.

Do something for me… think back to the last time that you puked, if you can. Do you remember how terrible it felt? Do you remember not being able to breathe? Did you retch and gag even if your stomach was empty?  Do you remember the awful taste in your mouth? Evan does, he remembers it all so vividly that he doesn’t want to eat anything because he knows it’s just going to come back up and hurt him. Sarah and I will never forget how quickly and how purple Evan turns as he struggles to breathe through the puking. His circulation is already not great, add to that all of the vascular pressure involved in puking and it’s pretty scary. Highly allergic to milk?!? <mutters obscenities>

Since switching formulas on March 1, Evan has not puked once. Three weeks puke free!  Moving from puking a minimum 5 times a day to nothing!  How amazing is that? Such a simple thing. Just in the last 3 Evan’s eating has grown by leaps and bounds. He has eaten full containers of food and regularly wants to eat. We’re able to feed him 3-4 times a day now in small amounts. We’re treating it all as ‘extra’ food and he still gets his primary nutrition from the g-tube but he is well on his way.

Evan was scheduled to have surgery to revise his g-tube on April 11 at Cincinnati Children’s hospital. This surgery has been rescheduled to May 23. Perhaps he’ll be eating completely on his own by then and the g-tube can be our back-up (tube fed kids need to demonstrate consistent self-sustaining eating for a long time – months – before the tube is permanently removed). It’s going to sound really strange to most of you, but I will miss the g-tube at times. Giving medications? Easy. Feeding overnight for extra calories? Easy. Feeding in the car, in the stroller, etc. Easy.  Toddler doesn’t want to eat?  Tough, here you go.

Now for pictures… lots of them to post this time.

Feb 3 – Evan and Dadda at Superbowl Weekend Party

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Feb 20 – Evan’s 1st Haircut

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Feb 23 – Pool Party Stay-cation

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Feb 24 – Evan and Dadda Photoshoot

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Mar 10 – Ari’s First Birthday Party

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March – Various Days – Evan Eats!

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Feb – March – Various Evan Playing and Just Being Cute

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