Update on Edison

Edison is currently doing okay.  Last week, he had follow ups with the hepatologists (his liver doctor) and the cardiologists.  These appointments are helpful but feel a little strange.  These doctors are used to solving their patients problems.  Now, they are just seeing how things are looking and if there are any indications of things getting worse.  Edison’s heart is looking decent still, but he has developed a heart arrhythmia.  His doctor started to say “we’ll talk about putting a pacemaker in during…” but then remembered Edison’s situation and corrected herself.  She’s a great doctor and didn’t mean to be insensitive.  I know she’s going to do all that she can to keep Edison heart as healthy as possible for as long as possible.  We’ll see her in another couple of weeks.  At the hepatologist’s office, we talked more about what to expect from the liver side of things.  Liver failure is not pretty.  She checked Edison out and said that he’s not showing any major visible signs of failure yet (other than being jaundiced).  We talked about doing lab work to see how bad his liver is at this point, but we both decided it would be best to just keep Edison comfortable and not do anymore poking.  It’s not like we can do anything to change it.  We’ll only see her again if we change our mind about the lab work or if we just want her to check him out again.

Edison has gained about a pound and half.  He is now 8 lbs 14 oz.  I know that's not much for a 3 month old but I am pretty happy about this.  It's hard for babies with biliary atresia to absorb fats.  He has to use a special formula that already has the fats broken down so his body can absorb it and then we fortify it with extra calories. 

Edison has had a little bit of a set back the last few days.  He’s been having a hard time with feedings.  He gets his feedings through a feeding tube in his stomach.  Ever since his liver surgery, he hasn’t done as well with feedings but now its been getting worse. We think he is having trouble digesting the formula fast enough.  He gets very full and uncomfortable and sometimes gags and spits up.  It’s bad when he gags because his heart rate drops significantly.  He was been leaking formula around his gtube because he is so full.  He was eating every 3 hours for an hour.  Last night we talked to the palliative doctor and she told us to go to continuous feeds.  This means he is always hooked up to the feeding pump.  He gets the same amount of volume but it’s spread out over a 3-hour period of time.  It’s helped a lot.  He isn’t leaking and he seems to be more comfortable.  But it also sucks.  He’s always hooked up.  It makes it hard for us to move around the house with him.  He’s confined to wherever the feeding pump is.  He’ll rarely be able to leave the house.  I’m really hoping we can get to the point where we can condense them again even by just a little, but there’s a good chance that won’t happen.  The other bad thing is that not tolerating feedings is one of the first indications that things may be getting worse.

Edison sleeps a lot, but not always very soundly. He coughs/chokes and it causes him to wake up.  The cough/choking is probably caused by reflux.  Edison doesn’t have much of a swallow reflex due to being sedated and intubated for so long after his heart and liver surgeries, so he chokes on anything going down or coming up. 

He is very behind developmentally.  He still isn’t smiling much.  It takes a lot of work to get even a little smile.  His neck support is still similar to a newborns, but we are working on it.

I guess that the one “good” thing about all of this is that I don’t need to have high expectations for Edison.  I just have to hope he is comfortable and feeling loved.   I pray everyday for him to know he is so loved.  He always will be.

Edison did have his first trip to the park with his two big brothers.  He slept the whole time but it felt so good to be out of the house with him and have all three of the boys at the park together.  I sat in the swing with him while the other two ran around.  He also had his first outing to the library.  It was quick.  We needed to stock up on books for Leon and movies.  I was worried about germs.  When we got home, I probably washed by hands 5 times and then added hand sanitizer on top of that.  As a family we went through the new Indianapolis LDS temple open house.  We are LDS (aka Mormon) ourselves so it was pretty special for us in many ways.  The new temple is absolutely beautiful.  I look forward to the day when I can go and reflect on God's plan for us and perhaps feel closer to heaven and therefore Edison.

Edison's Brothers

Before we left the hospital, I talked a LOT to the child life specialist and the palliative care team on how to prepare our other two sons for this situation.  They made a lot of great suggestions and gave us a lot of advice on how to handle things.  They advised us to just tell the boys that Edison is very sick and let things play off that statement.  If they have questions then we'll answer them honestly, but so far there hasn't been many.  We want them to have some normalcy and to enjoy this time being big brothers and getting to know their baby brother.  The last thing we want is for them to anticipate Edison's death or be scared of the situation.  It's important to us that they have a relationship with him that's free of worry.  When Edison starts getting worse, we will tell them.

Leon (6 years old) is wonderful with Edison.  He is really sweet to Edison.  He loves to help and tries to make Edison happy.  He’ll go up to Edison when he’s crying, stick his paci back in his mouth, and say “it’s okay Edison!” in a baby voice.  Its incredibly endearing.  Leon also reads to Edison during reading time sometimes.  Edison just watches him.

I was telling Leon that babies really like pictures in black and white.  Leon later returned with his black and white Legos to show Edison and started to build him something to look at.  Leon also helps me sing "I'm a Child of God" to Edison when he is upset.  It's one of our favorite songs.

This was Leon's first time holding Edison.  He was so proud.  It made my heart swell.

Grady (3 years old and has autism) loves Edison.  He has moments of jealousy but overall has really done well with the transition into big brotherhood.  He gives Edison kisses.  He goes up and says "hi baby brother" or "it's okay Edison".  His autism and age has made it harder for him to bond with Edison but I can see love and wonder there.  Sometimes I see Grady standing next to Edison, just  watching him.  I've always loved seeing how Grady is developing and progressing.  Seeing him take in his little brother makes me realize that Grady is such a special spirit.

Leon has talked about "when Edison gets big" many times.  He's asked when we'll get to go with Edison to Disney World.  He talks about when Edison will start crawling and walking.  There are many times a day I wish to tell him what's going on.  I want him to realize how special this time is.  I desperately want them to bond.  But I remember he is a 6 years old and I always go back to believing our plan to wait is what's right.  

I've watched Kyle and the boys play in the yard several times while I've held Edison in my arms.  Leon and Grady are so happy to have us all home and have some "normalcy" again in our lives.  In those moments I imagine a toddler Edison trotting along with them - maybe a little more out of breath from his heart condition - but playing and happy and trying to be big like his brothers.  But reality sets in and grief hits.  I realize that he won't be there.  It's not going to be like that.  It's hard not to imagine him in our lives.  Edison is apart of us now.

(photo credits for images 4, 5, 6 - kim davis photography)