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Has it really been since we just got home from surgery since we last posted?  Well, that’s embarrassing.  I guess you can expect to have lots of photos in this update.  We’ve had some pretty rad developments since then.

First, and most importantly, we had a follow-up appointment with the cardiologist and she said everything was looking great.  In fact, she thought his heart function had  improved a little bit.  She is still keeping him on all of his meds.  Being on meds is a double-edged sword… you appreciate their helpfulness but you can have side-effects.  I wonder if some of Evan’s continuing feeding issues aren’t the result of some drug side effects.  Can’t wait for the day we are drug free.

Second, his g-tube site was looking a little sketchy for a bit but now I think it has settled nicely.  We were to keep it in place for 2 weeks and then it can get turned and submerged yadda yadda.  But Cincy suggested to just keep it still and don’t turn it at all.  I was, and still am, concerned that the interior components will heal to his stomach lining by not moving it.  Don’t you have to turn earrings when you get your ears pierced?  I know, completely different.  So we entrust those who really know what they are talking about and things have been going well.

Third, we had a follow-up with the dentist and Evan behaved so brilliantly.  Adults could be schooled by him.  There doesn’t appear to be any new damage to his teeth so that is a great thing.  They confirmed his molars were coming in.  Yippee.

Eating is always a challenge.  We met with the dietitian and she changed his plan so he is milk-fed only 4 times a day instead of 6 times a day, so that helps.  He still gets the vast majority of his nutrition from formula.  He  will consistently eat Stage 1 or 2 food, so that is much better than nothing.  He doesn’t seem to be too picky as far as flavor goes – it’s all about the texture for him.  We are routinely eating food so we incorporated that into his daily calorie intake.  We are partly-food dependent!  So that is very cool.

Evan is speaking more!  During his cardio appt he was having an Echo done and was watching Dora.  He watches Dora at Nana’s and Dora asked “how do we know where to go” and Evan said Mah!  I thought it was for mom.  Then Dora said, “That’s right… Map!”  He said Map!  Then she asked “where can i look for something” and as clear as day he said Backpack.  This stinker can say a word like backpack?!?  Now we say Map and Backpack quite frequently (no Dora tho).  He tries saying lots of stuff and mostly he just gets the correct # of syllables but it’s something!  Just right now be said ba-ba when he heard bubbles.  He makes a number of animal sounds thanks to Ms. Cathleen.  Instead of signing dog he makes a whimpery bark.  For monkey he both signs and makes a ahh-ahh-ahh monkey sound.

The most spectacular thing he has said happened the other day.  I was wearing a “Boston Strong” t-shirt and was holding Ev.  He pointed to the O on my shirt and said Oh!  Completely unprompted.  It was awesome.  I asked him what letter made a ta sound and he pointed to the T.  Heh.  This kid.  What stroke???

He is still a very happy, kind, obedient boy.  And I can’t believe we are already planing his 2nd birthday party!  It is a Peep and the Big Wide World theme… although if his birthday was a little later it would be a Dora theme.  Maybe he can be Dora for Halloween.  Eh, he’d rather be Map or Backpack.

May 21 – A day at the park

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May 25 – Bouncing and Gardening

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June 1 – Happy 1st Birthday Miles

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June 7 – Cousins!

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June 9 – Donuts and Dogs

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June 9 – Dada and Dreams

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June 9 – Chalk

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June 11 – Dentist

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June 12 – Cardiologist

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June 15 – Doggie kisses

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June 20 – Bikes and Balls

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June 22 & 23 – Great Wolf Lodge

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June 23 – Sprinkler Fun

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May & June – Eating and Therapy

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May & June – Playing outside

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May & June – This and That

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June – For Dada

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Evan did so well with surgery that we were released on Wednesday morning!  I am so proud of him and how he has handled himself with everything that he has been through.  He still has a smile on his face and is still a sweet little boy.  He has absolutely the best  personality, disposition, spirit, outlook…. whatever you want to call it… we could not have asked for a better kid.  Recently we started playing a game where he says “mama” and I ask “who’s your mama” and he points to me.  I say exaggeratedly “me?!? I’m your mama?!?” and he says “uh-huh!” and I say “oh thank you!” and kiss him on the cheek.  I know it sounds dumb but we play it over and over and over and honestly I am just so so happy to be Evan’s mom.  I am so thankful his spirit picked us for his parents.  How we deserved him, pfft I don’t know, but I’ll take the blessing we got!

His new site his  healing nicely.  We were given instructions to not let it move for 2 weeks so we taped everything down.  It does present some challenges when we feed at night or in the car.  Because everything is taped down, it’s essentially like he doesn’t have an extension so we don’t have much line to play with.  Typically he sits with his onesie unsnapped and no pants on when eating.   I’m happy it’s the summer so we can eat without pants on!

Wednesday morning a lot of people came in to see Evan.  Well, lots of people came in all the time.  I didn’t think it was possible but I think Cincy has more interruptions than UofM.  Seriously Grand Central Station.  Anyway, someone with electrophysiology came by and talked about Evan’s pacemaker.  He made some comment about Evan having a lengthy P wave.  He was also talking about Evan’s meds and how uncommon it is to be on them and need them to help with the squeeze of his heart (Digoxin) considering that Evan is “lucky” to have a functioning left ventricle.  The left ventricle is supposed to pump blood to the body, so it is stronger and made to function harder.  The right ventricle is only designed to pump to the lungs.  So with single ventricle kiddos, those with functioning left ventricles (HRHS) are considered “luckier” than the ones who have functioning right ventricles (HLHS) because in theory their hearts should last longer.  I think this doc was just surprised to see Evan on these meds considering his left ventricle should be good to go.  He was also surprised that Evan received a pacemaker so young.  It is actually fairly common for l-loop (l-TGA) individuals to require a pacemaker in life but he was surprised it happened right after the Norwood.

The thing about any of Evan’s EKGs or echos is that they are subjective – what one says is mild another calls moderate.  What one is surprised by another considers it but not heavily.  It’s a lot of interpretation.  So I don’t think much of what he said other than to take note of it.  I trust our cardiologist and her understanding of Evan and trust she will take action when necessary and knows what is best for him.  I do wonder what level of detail we would understand if we were medical people.  Kind of like looking behind the curtain at Oz… what’s really there that we would find interesting but don’t yet understand.  Medical talk is really a different language.

Evan was released from the Pain Management team as he had required very little extra medication to manage his pain.  I was surprised at this.  Normally he does like his pain meds and tends to need to use them a bit longer but not this time.  He has been easily managed with OTC Tylenol when needed.

Wound care came by and explained how to care for the PEG.  He has a tiny bit of drainage around his new site but nothing big and nothing we really need to have a dressing on or anything.  It should stop as it heals.  Pulling the tape off the kid was the worst part of everything.  Tape over his belly and tape for the IV on his foot.  That created quite a few tears.

Due to Evan’s previous history with Psuedomonas infections, especially in the area of his new g-tube, he received doses of Zosyn (thank you Pfizer) prophylacticly once he went in the OR.  Surgery just wanted him to receive at least 1 more dose in the morning and then he would be through.

GI stopped by on rounds and noted that Evan has worked up to his full-feed volume, tho fed continuously, but was tolerating everything well.  He just needs to work up to bolus feeding instead of continuous but that it could be worked on at home.  They gave the discharge blessing!  All I said was make it happen quick because I have a long drive ahead of me (Dad left Tuesday afternoon to go to Philly for work so it was just Evan and me on the road).  They did their part and we were leaving the parking garage at 12:30.

Evan did remarkable on the ride home.  He slept for the first couple hours and only got restless near the very end.  It was definitely a good day to be in the car because he was on continuous feeds and being strapped down makes it very easy.  He also still wasn’t 100% so he didn’t feel like being super active anyway.  If you ever know someone who has a kiddo who is continuously fed give them a hug, particularly if they were fed that way as infants and toddlers.  I did it for 1 day and you know you will do whatever it takes for your kids but I can’t imagine it forever.

After arriving home Evan and I went for a walk to stretch our legs.  We took a break from eating to walk in the grass a bit.  He was pretty pooped so he went to bed early and without issue, just happy to be home.

Thursday Evan started getting his formula with bolus feeds without issue.  He even ate some pureed food rather eagerly.  We ate outside on the porch because it was so gorgeous out and I thought he would be distracted but he was awesome.  We went on a couple shopping trips and he did great again.  This kid was super blessed with patience.

Even though we came back from the hospital early I technically could have returned to work.  I had already planned on taking the rest of the week off so I stuck with that.  Getting home early was such a bonus.  I have not had a couple relaxing days off with my son since he was 5 months old – Christmas 2011 – when I had to “use it or lose it” and burn a bunch of vacation at the end of the year.  Otherwise all of my time off is spent here and there at various appointments or, unfortunately, with multiple hospitalizations.  It’s tiring.  But it is so hard to take time off with the constant nagging in the back of my head that I might need it someday.  I want to have fun and breathe deep too. So on Friday we did just that – we went to the zoo!

Remember the part when I said he has a lot of patience?  Ha!  Well I was the mom with the screaming kid in the zoo.  It couldn’t be more obvious that he is turning 2 soon!  So we are getting some tantrums pretty hard core.  After calming down a bit, the rest of the time was fun.  Still not lots of smiles but Evan is a pretty serious kid.  From moment 1 we’ve been told how serious he is and it’s so true.  We rode on the carousel which he was nervous about at first but trusted me enough (or was in awe enough) to go through with it.  He even fed the giraffes.  I loved having a fun day with my son!

Last moments in the hospital and recovering at home:

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At the zoo with mama:

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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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Since figuring out Evan is allergic to cow’s milk and switching his formula, he has done remarkably well.  He hasn’t had any issues with puking and his oral motor skills have improved greatly in just a month.  He has even been asking for food and seems incredibly interested.  This past week was a bit of a setback.  Not sure just why, but he doesn’t really want to eat anymore.  He is incredibly whiny about everything, but regarding food he is back to covering his mouth whenever it is offered.  Sometimes he eats well but most of the time he takes issue with it.  I’m sure it is all part of the process but it does make us think a little bit – considering he doesn’t have the typical symptoms when ill or infected – it does make us take note. Maybe he is teething?  Maybe he is just testing  us the way toddlers do?

Today for lunch, he didn’t want anything to do with the “crunchy” part of his meal – puffs.  He really didn’t want any of his puree either but I got him to eat about 3oz by offering to play with his puffs as a reward.  Here he is looking incredibly serious and pitiful.

Trying one reluctant bite for mama

It got all sticky and he wanted to give it back to me

Then he decided to just play with it instead

In the bowl, out the bowl, in the bowl, out the bowl…

An easy reward for a reluctant eater

Dump

The socks tell the truth

Can you hear him say “ba ba ba ba”

Over  it

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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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Since explaining the past month+ in words would be way too boring, I decided to do an update in pictures.  Many of the photos have captions so the details should be filled in.  Instead of having one giant gallery, I separated out the larger photo sessions from the “everything else” gallery.  Enjoy looking around!

Jan 6 – Evan being naughty and reading

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Jan 8 – Kat visit

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Jan 16, 28, Feb 7, Feb 11 – Evan at therapy

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Jan 21 – Heart photos for Mott

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Jan 30 – Fun with balloons

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Feb 9 – Sweet baby photoshoot

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And everything else: Evan tried eggnog, group get-together, being silly, gross button, and playing outside

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