A Few Days Rest

The tests results showed that Laila has a narrowing, causing a blockage, close to her stoma site.  This has been an ongoing problem for her ever since she had her ileostomy placed.  She has had three revisions in the past year for the same problem and it has never worked for longer than a few months. Since August we have left a tube sticking out of her stoma to keep it going but that is no longer working and caused everything to get backed up.  That is where the stool was coming from that she was vomiting and the blood was the lining of her stomach because it was so irritated and angry from all of it.  The doctors kind of shrugged their shoulders…. not sure what to do.

So momma bear had to come up with a plan.  Thankfully our own surgeon was there all throughout our stay and he and I were able to bounce ideas off of each other.  He didn’t want to do surgery again knowing that it hasn’t worked in the past.  I wasn’t willing to stop fighting.  I came up with the plan to have him take out the narrowed portion and then put her on a schedule of coming down to have them dilate her stoma often to try to stretch it and not let it narrow again.  This would be A LOT of back and forth to the hospital but I’m willing to do whatever it takes to get more time with my girl.  The surgeon agreed that this *could* work and said he would give it a try.  He also said that if it is working he might teach me how to dilate it myself at home.  I can’t believe all the things I know how to do now.  Crazy!

Surgery could possibly have been yesterday but the surgeon decided that we could do a few things to give her time so we could come home for a few days and spend time with family.  We spent Easter last year in the hospital and he wanted to give us that family time this year.  I’m thankful.

We have also decided to have her central line replaced and changed to a double lumen.  Her current line only has a single lumen (access port) and that has been a problem.  Only one thing can be running at a time and several things are not compatible with TPN (her feedings).  TPN and having a central line is going to be a permanent thing now.  Changing it out is a higher risk for infection but it will also give us what we need to change some of her medications to IV so we can be using her failing intestinal organs as little as possible.

Jack and I also met with Laila’s palliative team again and are thankful for their input and support.  It’s a hard thing to know that things aren’t getting better but we love having people who specialize in this and can just talk us through some of it.

I know a lot of that doesn’t make sense to others who aren’t in the medical field or have been a caretaker of someone medically fragile but I know others are interested and try to understand so I figured I would spell it out the best I could.

So…. we are home.  We are thankful.  We are nervous.  We are sad.  We are tired.  We love Laila.  We love each other.  We trust God.

We will spend the next several days loving on each other and doing life.  Wednesday night or Thursday morning we will head back to Riley and will hopefully only be there 4-5 days.

Pray us through this would you?  Pray for strength and understanding.  Pray that this plan will work… at least for awhile.  Pray for our other three kids and what this does to them.  Never forget how hard this is for them too.

Thanks for all your love and support.