Plan

Sorry for the lack of updates, but the last few days have just been spent discussing what the next step is. It looks like they’ll be doing a laparoscopic exploratory surgery on Monday morning. They’ll make a few small incisions in her abdomen and put a camera scope in.

Prayer requests:

  • That we would FIND the problem and that it is easily fixable.
  • That the bleeding would not start up again before the procedure, unless that would make it easier to locate the damage.
  • Evie’s heart has been beating significantly slower than usual. We’ve done a few tests which have come back as normal (well…her normal), but it’s still something we’re watching very closely.
  • We figured out that Evie’s hives were caused by the TPN (intravenous nutrition), so now we need to figure out what component is the problem. She really should be on TPN prior to the surgery so she isn’t without nutrition for so long, but no one wants to risk an allergic reaction right before a surgery. Not sure what to pray for on this one. Maybe that if she needs TPN after the surgery, that we can confidently give it to her because we’ve figured out the problem component.
  • Evie’s pulmonologist is going to take a look at her lungs during Monday’s surgery. We’ve been unable to do her usual Vest treatments the last month because no one wants to shake her when she’s got a GI bleed. We’re hoping that her lungs are still in fairly good shape with the CPAP at night.

Thanks everyone. Hopefully we get things figured out this time.

 

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First Plane Ride

Cincinnati’s transport team came to get us yesterday afternoon and Evie had so much fun on her very first plane ride!

Loading her up!

Loading her up!

This was the weather in Des Moines when we took off!

This was the weather in Des Moines when we took off!

Up, up, and away!!!

Up, up, and away!!!

Much better up above that snow!

Much better up above that snow!

Arrived safely and then transferred to an ambulance.

Arrived safely and then transferred to an ambulance.

I cannot speak highly enough of the Cincinnati Transport Team. They were amazing and Evie loved them!

I cannot speak highly enough of the Cincinnati Transport Team. They were amazing and Evie loved them! I hope they don’t hate me for posting this picture, but it just perfectly shows their interactions with Evie and the love they have for what they do. 

It was a very smooth trip. Evie struggled a bit with her oxygen levels, but then SHE asked me to put her on her cpap. She did much better with that on and I’m so proud of her for knowing her body well enough to tell us what she needs respiratory wise.

Last night they did an xray to check her PICC placement (since it can move sometimes during travel) and sure enough, it had migrated into the right atrium of her heart. They had to pull it back slightly and redress it which Evie was NOT happy with in the middle of the night.

The doctors will hopefully be by for rounds soon and we’ll get a plan together for what steps need to be taken next. Thank you for all your prayers as we traveled and search for answers.

Off to Cincinnati

Insurance has approved the transfer to Cincinnati so they’ll be sending a plane to come get us tomorrow. Evie’s hemoglobin is still dropping slowly so it’s just not safe to do an 11 hour car ride with her. We’re about to start yet another blood transfusion as well so she’s safe for travel. This is the third transfusion in less than a month. Ugh. Please pray that the flight goes smoothly and we’re able to find answers once in Cincinnati.

Bleeding Round 3

I apologize for never updating after the pill cam. We went home the next day since there was nothing left to do and Evie was stable. We were able to be home for at least a little bit before she started having black in her stools again yesterday. Her hemoglobin oddly went UP, though. Today she had even more black, though, and her hemoglobin went down. She’s been admitted and we’re currently trying to get another red blood cell scan scheduled. Third time’s the charm maybe? Prayers appreciated that we’re able to locate the bleed.  Depending on what the scan shows (or doesn’t show), we’ll probably be looking at a transfer to Cincinnati.

Nothing

Still no answers. The pill cam saw a few specs, but they’re likely to be just specs and not actual damage to the intestines. She’s stable now, so we’ll head home tomorrow to await the next episode. Thanks for the prayers everyone. Evie’s never been one to give up answers easily.

Camera Pill Placed

Placement went well. Prayers now that 1) the pill camera does NOT get stuck. If it does, it will need to be surgically removed, and 2) that we’re able to finally locate the damage, and 3) that it is easily fixable damage. Thanks everyone.

We’re Go for the Real Thing

The dummy pill went all the way through her intestines without issue so we’re good to place the actual camera pill tomorrow morning. We’ll stay in the hospital until it goes through and then (if she’s stable) we’ll head home and wait for the GI to go through the several thousand pictures. Hopefully he’ll be able to locate the damage and we’ll be able to finally fix it.

Waiting

The Meckels scan came back negative which isn’t surprising. We got the dummy pill placed, though it was a bit rough since it’s so large. Her throat also looked very very swollen which I think is probably related to the hives.

We’ll just wait to see if the pill passes through and do a few xrays tomorrow to locate it if it doesn’t show up in her diaper.