Sunday, December 28, 2014

The Fun Never Stops!

The blog fell off my radar obviously.  I've been overwhelmed at where to start since so much time has passed and so much has been going on.   After Megatron's surgery at the beginning of October, things have been challenging.  The surgery itself went well, but the days that followed were hard.  Really hard.  It was a very painful recovery for our sweet boy.  Just like after his transplant, it took a lot of medication to keep him comfortable.  But even with narcotics and an epidural, it was really painful for him but also painful for my husband and I because there wasn't anything we could do. 
The afternoon after surgery....couldn't get comfortable.  He was also trying to pull out his IV and NG tube which is why his elbow was restrained.

He was more comfortable sitting up...with some help from The Pilot.  Megatron fell asleep like this!

After several days of him only wanting The Pilot, I finally got some baby cuddles.
Once we all survived several painful days though, he healed well from the surgery itself. It did take him a few days to regain his appetite and when he started eating after the surgery, he started vomiting.  Four to five times a day. Every day. For NINE weeks.  

At first we thought it was anesthesia related. Sometimes the gut is stunned and needs time to "wake up."  Then we thought his stomach was crowded from having his abdominal muscles sewn back together.  But the vomiting continued.  He had an upper GI done.  Then a gastric emptying study.  We added meds.  We added Pediasure. 

Let me go, I totally know how to work this machine!

Nuclear boy!  This was the same room we had the scan that ultimately led to his original liver disease diagnosis.  He was only a month old then though and slept through the entire scan.  This time?  He wanted to know exactly what was going on.

Nothing helped and after a exhausting and puke filled Thanksgiving weekend, Megatron had lost too much weight. He was admitted to the hospital and had a feeding (NG) tube placed in his nose to do continuous feeds to help him gain weight while the doctors hunted down the reason for the vomiting.
This is our first hospital stay with a toddler and not a baby so we visited the toy room to play.
We have had a feeding pump at home before (pre-transplant) so the hospital felt comfortable sending us home after an upper endoscopy and three days inpatient.  We had a new learning curve once we got home.  Megatron was hooked up to the feeding pump continuously and naturally this is when he decided to start walking.  We spent several days following him everywhere he went, carrying the pump and bag of formula.

One of us slept in his room every night because he kept rolling around and would get tangled up in the tubing.  Everyone was exhausted.  Between the lack of sleep, the piles and piles of laundry from all the vomiting, the worry and then the time in the hospital, we were all fried.

A couple days after being discharged, we got the results of the biopsies taken during the endoscopy. Everything at that time pointed towards food allergies.  Widespread food allergies.  We had to eliminate dairy, nuts, soy, wheat and egg.  We went into survival mode yet again.   What on earth do we feed this child?!  The formula going through the feeding tube was meeting his nutritional needs but the goal is to cut the tube feeds as soon as possible.  We didn't want him to forget his oral skills.

We went to the allergist and had a large skin prick test done.  They pricked his entire back and both arms with potential allergens.  That showed allergies to egg and peanut. So we can add back the other foods, right?  No. He's still showing some kind of reaction in his blood stream. And that has the doctors somewhat stumped. 
The second skin prick test this little dude has gone through.
But he had fun spinning the doctor's stool in the allergy clinic
And that's where we are right now.  He still has the feeding tube in place but we aren't using it. We are desperately trying to get him to drink the formula by mouth so we can have the tube taken out.  We have two appointments this coming week and we hope to have more answers. At least with his liver disease, we always knew what we were dealing with.  This latest challenge has too much unknown for my comfort level.

I will say that despite all that has been going on since October, our little man keeps smiling and doing normal toddler stuff.  At 17 months, he's all toddler boy: sticking his fingers in his nose and anywhere else they will fit, putting everything in his mouth, flashing an ornery grin when he's up to no good, etc.   We just keep reminding ourselves that at least he's not in liver failure anymore!

"I'll turn your world totally upside down."  That's an understatement!

Looking all sweet and innocent with his little feet crossed.


  1. What a whirlwind! I'm so impressed that you can keep your head together with all of this. Thanks for the update - I love seeing all the pics of your adorable kiddo! I don't really have anything helpful to add, except that I have several friends with kids who have food allergies and it seems like there is light at the end of that tunnel. Once you figure out what the triggers are, you'll adjust to a new normal of food.

  2. Oh my Amber, I am so so so sorry about what you're going through. I hope it all gets figured out soon and you get some rest and relaxation - I know the worry will never ebb, but maybe you'll get a reprieve and have just the 'normal' parental worries... at least as normal as can be for a parent to a baby that's already had a transplant in his short life. you're in my prayers.