Sitting Straight

Now that his belly is better we can really get into PT!  We bought a couple movies as a treat for James and little did we know he would work out while watching them.  He spent an hour sitting upright in his Bumbo!  He has never lasted longer than five minutes.  :D  Maybe we will let him watch more TV.  :D

With love.

A Better Belly

James' surgery went really well.  He was in and out in a little over an hour.  The surgeon informed us that the muscle around the tube site was damaged and part of the stomach had come through the muscle.  Because of this, the hole would not have closed on its own, but we would never have known until they opened the skin.

We got to see James about half an hour after the end of surgery.  He was snuggled into his little bed in recovery and opened his eyes as soon as he heard us walk into the room.  A few minutes later he mustered up the strength to lift his head and chat a bit.  His pain was under control until he moved into his overnight room, then, he lost it.  We had a hard time calming him down but Children's has a good selection of movies so we propped him up in bed and turned on Cars 2.  I have never seen him quiet down so fast!

He needed a little Tylenol to get him through the first night, but he slept really well (and so did we on those lovely hospital couches) and woke up in a great mood.  He ate his breakfast (his first meal in 36 hours) and we were discharged around 10.  We were all very happy to be home and James had a great Valentine's Day!

It was our first experience at Children's for surgery and we really liked it.  Everyone in the hospital is extremely helpful and friendly.  The nurses were great and very personable.  The only downside was that food was more of an issue.  Parents don't get food delivered to the room like we did at Fairfax and the cafeteria food was very limited and much more expensive.  We also didn't have as many choices for James.  Luckily, we brought some of his special concoction.

Here are a few pics from our hospital stay:

Waiting for surgery.  He was pretty happy until our start time was delayed an hour.

Waiting for our surgery room.

Engrossed in the TV post-surgery.

The view from our window.  Comforting on our ash-less Ash Wednesday.

A Valentine from one of the student nurses.

Check out how happy he was when he woke up the following morning:

With love.

Surgery - February 13

Hi, all.  James will have surgery tomorrow at Children's to close the G-tube site.  We don't know what time yet (they call the evening before) but it should be early morning.  This is "routine" and should only take about an hour with a small amount of time in recovery and home the same day.  We'll keep you posted!

James has been doing so much better!  He is eating like a horse and gained 2 1/2 pounds, all the weight he lost and then some!  The tube site actually looks a lot better and might (might!) close on its own if we let it be, but due to insurance we can't wait any longer.  We also think that the hole in his stomach is part of the reason he is struggling to poop and hope things will get better once it is closed.

He is moving everywhere and spending lots of time on his tummy now that the tube is gone.  We have been surprised by all the mischief he can get into now.  :D  Here is an example of one of his messes:

He is also training to join the Pilegaard Nerf Fights.  He needs a little more practice.  :D

With love.

Recovering Little Pumpkin

Our little pumpkin is finally recovering nicely.  Three doctors' appointments later this is what we think happened.

The new mayo (with soybean oil) caused a more mild allergic reaction (meaning he wasn't vomiting uncontrollably this time) to soy and since he didn't expel it from his body wreaked havoc on his digestive system causing major constipation, straining, and lots of leaking gastric fluid which destroyed the beautifully closing tube site.  But, a week and a half and three enemas later James is finally pooping on his own and eating better.  He isn't up to speed yet, but he is definitely gaining back some weight.

GI wants to do surgery to close the hole but our pediatrician wants to wait a bit.  I would rather wait so we will talk to GI at our follow up and decide where to go from here.  We are lathering the area with neosporin and maalox to neutralize the acid and that seems to be helping.  At least he is much more comfortable.

We'll keep working!

On one of his hardest days I went in the other room to check emails while James quietly played.  This is how I found him.  It was 9AM and he had only been awake for two hours tops.  Poor little guy.

As he is starting to recover, sitting is getting more comfortable and he is back to his normal self.  He likes to rock out and make faces at himself in the mirror.

With love.

New and Noteworthy

Wow, I haven't posted in two weeks.  There is a reason for that.  It has been crazy here.  

James is drinking from a straw like a pro now so he is well-hydrated but his eating has slid into the abominable category.  We think he had some digestive problems with the mayo we put in his food as it had soybean oil in it (still has that dairy/soy allergy apparently).  It will probably take a week or so to get his digestion back to normal, but we are getting things moving through him again.  However, he has only eaten a few hundred calories the past few days.  We are trying to figure out a remedy.  This morning he gobbled up his prunes but didn't want his sweet potato.  We are going to get inventive when it comes to taste and hope that he will be back to eating sweet potatoes, chicken, and eggs soon.

James has been hitting some great milestones now that the tube is out.  He is army crawling all over the place and pushing onto his hands and knees a couple times a day.  He learned to wave and say "hi".  He also learned to throw and catch.  Here is a little video of his new accomplishments.

More soon.

With love.

Doing Better

James is doing better.  The hole is definitely closing and the skin looks so much healthier!  We finally figured out how to bandage it so that fluid isn't gushing out and there is no hurtful tape.  It has made us all much happier!  I may even be able to change it on my own when Mark goes back to work on Monday.

He is still struggling with eating due to the leakage, although it is no where near as bad as it was.  We'll keep you updated!

James likes to eat dinner with us because Daddy is funny.  :D

With love.

We're Tubeless...and Overwhelmed

It feels really good to have that tube out of our son's stomach.  But, we are stressed.

The hole is beginning to close and the area looks much better!  We are seeing new skin/fat growing there which is great.  But, it leaks like Ole Faithful.  It is 11 AM here and I changed his bandage 3 1/2 times already (one time I just added more gauze and tape around the side because the bandage was only 10 minutes old!).  The leakage does hurt and it has been hard to change the gauze on my own especially with James crying.  And it smells like our first PICU stay after James' first G-tube surgery.  That stay didn't go so well (frustrating nurses, a hard window ledge for a bed, a very-much-in-pain baby, and the tube eventually came out) and now I know the smell was from gastric juice.  That is why I am sitting here with chocolate while James naps.

We knew this wouldn't be an instant fix because it would take a while to close, but it is a little harder than we expected.  We can only get about 4 ounces in James at a time before it all just comes right back out.  So, back to high-calorie blends!  At least he wants to eat and drink despite the pain.  He drank three and a half ounces through a straw this morning - that's a record!  And he slept very well the last two nights, praise God!

So, we keep plugging on.  Things should be much better by the time the next work week rolls around.  And, luckily, next week my husband has a good schedule.  :D

After the Redskins loss.  :(  We didn't know yet the tube would come out the following morning.

With love.