I wish I had exciting news about all the progress Gabe made today, but I don't.


Our day was uneventful, which was nice.  I'll give you the medical update than show you his cute face.  Please keep praying for our family.  We are all hanging in there, but with no end in sight and no action steps to help move things along, we tend to get a little discouraged.  Josie comes home in a couple of days so we will have to split our attention between two places (three for Andrew) and that just stinks for any parent.

Today's Medical Info:

Gabe had another big output overnight.  I wasn't surprised at all when they let us know the tube was staying today, probably the next few days as well.  The PA was able to give me a good explanation of what is happening though so I'll share that with you.

He told me to think of it like a sponge full of water in his chest.  The surgery upped the pressures in his chest cavity so that sponge is getting squeezed and liquid is coming out.  Normally, his body would adjust to these new pressures causing the sponge to stop letting out liquid.  Sometimes that takes 5 days, sometimes it takes a lot more.  We are falling into that second category.

In fact, the last three days, his output has gone up instead of down.  They aren't sure why, but decided to put him back on an IV diuretic to help move that fluid along.  Basically, he will push more fluid out through his urine.  He was on this same IV diuretic right after surgery but we went to oral diuretics a few days ago when his sodium levels plummeted.  Now that he is eating again and on an increased salt diet, we are hoping he can maintain his sodium.  If not, he will have to come off the IV again which would slow this down even more.  If that's even possible.

If the IV doesn't help lower his output, it's likely that he will have to go in for a heart cath to try to figure out why the pressures are leveling out.  We are really hoping to avoid that.  Caths are very unpleasant and Gabe's been through enough already.

I just spoke with the nurse and his output did go down today to 90 ml in the last 12 hours.  Not enough to get us out of here, but enough to encourage me that it is possible that we won't live here forever.

We had some fun visitors today.

We hadn't seen Amy in way, way to long.  She came up, arms full of donuts and chocolate milk and cozy pjs.  Good thing since we were running low on clean ones!  It was so nice to sit and catch up with her.  I've missed her way more than I even knew.  Once Gabe woke up a little, we went to the game room and the two of them played video games for a little while while I rested.

Then Brooks, who is a friend and pastor at our church, surprised us with lunch!  So, so thankful that I was able to avoid the cafeteria for 2 meals today!  We had a really nice visit.

After he left, Gabe was wore out.  He slowly slid to the side and passed out for a couple of hours.  Hoping I don't pay for that come bedtime!

Gabe's eating has been cracking us up.  He's really taking this unlimited sodium thing to a whole new level.  Andrew brought him his favorite chips and salsa last night which he ate a ton of.  He woke up asking for more and then Brooks brought him a refill at lunch!  If that doesn't up his sodium, I'm not sure what will!

This afternoon it was just the two of us.

We went for a few walks, rode bikes in the hall, and even squeezed in some letter practice.  I hate being here and really hate that Gabe isn't feeling so hot, but I do love spending this time with him.  It's been a great joy for me to be able to be here with him.  It's hard not to think of his last surgery where nobody was here to stay with him.  I'm tired and sad and missing the rest of our family, but I would do this again in an instant.

I'm so glad this boy is mine.


Kelsey Nichols said...

That last picture is my fave!

Sabrina Friel said...

I love reading your blog and keeping up with every day news about gabe. I have been praying for this sweet boy and the family daily. I can't wait to read the post about him going home. I know it has taken longer than expected but he is definitely in good hands.

Sarah Cotton said...

Cutest little boy ever!! His color looks awesome Nicole. Cheers to you guys getting to go home soon. Thinking of you often!!

Nicole T said...

You are superwoman, Nicole! Keep up the good work. I am praying for you and thinking of you often. Thanks for the constant updates so we don't have to worry so much about you guys.


Anonymous said...

Hi, Nicole. We haven't met, but I know God had me stumble across your story. I'm grateful for you. Thankful for your strength, giant heart for those kids, ferocity and honesty. You and your family are a city on a hill, love. Everyone sees your light. So thank you. I'm praying for you all.